(19-05-30) Fly Free.

It is with deep sadness we share that Tarah passed away peacefully at St. Joes on Tuesday, May 28th, 2019.

Tarah battled cancer in the exact same way she lived her life, with unprecedented levels of stubbornness and tenacity, an enviable level of grace and gratitude and (certainly not least important) eternally impeccable grooming.

If you know Tarah, you’ll know that it likely gave her no small measure of satisfaction to know that her nails, toes, and eyebrows were (as she would have said) on point. Her hospital gown exactly matched the ocean blue of those beautiful eyes that saw everything, whether you wanted them to or not.

Even at the end, such things would have mattered to Tarah, and so they mattered to us as well.

Like everything else she took on during her life, Tarah fought cancer her own way, on her own time, and accepted no arguments. I can only imagine that in the entire history of the universe, cancer has never met a more formidable opponent.

I know I never have.

Never one to accept anyone’s notion of how things should be done, Tarah charted her own path through life. She began even before birth, making her mother wait almost an entire month after her due date. With a typical flair for the dramatic entrance, Tarah chose to arrive just in the nick of time to spare her mother a cesarean.

As anyone who has ever known Tarah can attest, she continued pushing boundaries, challenging limits, and fighting the system with every bit of moxie she could muster (and that was plenty of moxie) from there.

Tarah didn’t just fight her own battles, she was always ready to take on the world, and this world was better for it. From her hybrid car plastered with uber-liberal bumper stickers that left no doubt as to her left-of-center beliefs (the source of her first national news exposure) to her steadfast commitment to being an ethical consumer. Tarah was one of those rare individuals who walked her talk, every single day of her life.

These last few years gave her ample opportunity to show the world just how determined she could be, battling not only cancer (which would have been more than enough for most mere humans) but also the state of Arizona. In characteristic Tarah-style, she effortlessly called in national media and government attention and created safety and security for fellow state employees facing health challenges like her own.

Those who knew her were not surprised. Tarah was an uncommon woman who blazed her own trail, through and through.

Uncommon and determined, yes. But a good, compliant patient she was not. Tarah took great pride in sharing the many stories of her refusal to bend to authority or conventional treatment protocol. I can only imagine the combination of utter frustration and reluctant admiration her providers must have had for her, only because I know it myself.

Tarah did not do things by anyone’s book; she found herself a pen (likely, knowing her, several multicolored pens with a complex system of color coding!), stole herself some paper, and wrote her own — entirely grammatically correct — story.

If she had to fight this particular fight, she was going to do it her way. And that is what she did.

Tarah was never easy — with unprecedented levels of self-awareness, dig-her-heels in the ground dogged persistence, a righteous sense of justice and entirely few fucks given.

No, Tarah was never easy, but for those of us who loved her, she was always worth it.

As her cancer returned and progressed this last year, our independent-to-a-fault Tarah was forced to accept more and more care and assistance. I was struck by the grace, strength, and gratitude with which she welcomed the help she needed. Even in tremendous pain, and facing levels of dependence that could not have been easy for a woman so fiercely self-reliant, Tarah remained quintessentially Tarah. Funny and sarcastic, stubborn yet appreciative, unconventional to a fault and incredibly loyal to the people and animals she loved the most.

Tarah left this world far sooner than she should have, and far sooner than any of us were ready for. In the end, she was peaceful, surrounded by her beloved boyfriend, Harold, her devoted friend and roommate, Jenna, Her mother, Linda and myself, as well as the energy and love of her dearest Kyana, dedicated friends Glenda and Tyler and close family Uncle Ken, as well as so many of the friends and loved ones who had played an intimate role in her support and care over the past few months.

Tarah was not one for organized religion (I’m pretty sure she had a bumper sticker for that!), but it was a holy honor to be present in that room with those that loved her the most as her spirit left her body and continued to the all and the everything and the nothing that lies beyond this existence. To have held her hand and kissed her forehead and whispered my love to her unchanging essence. I am forever grateful for that moment.

Once, near the beginning of our friendship, Tarah took me to see Wicked. And from that day onward, my song for her was “For Good.”

“I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you…”



Knowing Tarah changed me forever. She pushed me and challenged me and pissed me off, over and over again. She forced me to look beyond my own small notions into a larger, wide open world. She taught me how to give fewer fucks, just through witnessing her fierce insistence on being wholly herself and nothing but herself. She showed up for her people, even when it cost her to do so. Tarah had higher standards and expected more of herself than anyone I know, and in turn, she expected more of us. She saw what we — her friends, her students, her loved ones, were capable of —and she didn’t settle for less. She asked us to step into that version of ourselves, and we became more in response (mostly because Tarah seldom took no for an answer).

Being granted access to her final months and weeks on this earth is a blessing for which I have no words.

Fly free, Tarah Nicole Ausburn. Wherever it is that you are now, I hope they have damn good pedicures, an unending source of shoes, handbags, and glasses to match every outfit, all the scrabble tiles you could ever ask for, and worthy enough opponents to keep you from getting bored.

Wherever you are — keep on raising hell, pushing boundaries, asking hard questions, and not letting people get away with complacency.

I’d send a warning ahead of you, but I’d hazard a guess that you’ve already made some changes and stirred things up a notch. That’s okay, this universe needs a little bit of an ass-kicking, and I can’t imagine anyone better suited to give it.

xo, forever
J.

___________________

In celebration and honor of Tarah and the incredible life she has lived, please share your favorite photos, memories, and stories in the comments below.

(19-05-11) Chemo Problems

My last day of pelvic radiation went off without a hitch. The fatigue side effects will soon dissipate, although since I do have brain radiation all next week, I might end up feeling just as exhausted and weak for a few more weeks to come. I’m also curious to know whether I’ll end up getting that radiation sunburn like I did last time. With that last time of breast radiation, it was during the third week of radiation that the sunburn developed, so I guess we’ll just have to wait and see….

I met with Dr. Patel, my radiologist, immediately afterwards. There were a few worthy points:

  • She said my brain tumor was 1.7cm x 1.6cm and had settled near my hippocampus. In Mexico, Dr. Rubio said it was 1.2cm and resting near my occipital and frontal lobes. So it is definitely growing and moving around, which explains my changing symptoms.
  • She said that the radiation right now is not to shrink tumors, but actually deal with pain management. I’m in so much pain right now that statement seems laughable, but I know that my pain is mostly from my edema.
  • She also said that Dr Curley will decide if I go back to radiation for any other spots on my body later down the road.

So… Radiation was easy. Chemo today was not. I stopped counting at 7 but they basically spent an hour trying to find a vein where they could draw blood. They like to have a full blood panel before chemo just to make sure there aren’t going to be any problems. Unfortunately, they couldn’t find a vein because I’m so swollen with edema that the needles that were actually making it in to my skin could not draw any blood, only edema fluid.

They then told me that I couldn’t have chemo if we couldn’t do the blood draw. I threw a goddamn fit, turned into bratty non-compliant patient Tarah, and basically made so many arguments and refused to leave until I got chemo. I eventually won, but damn, that was quite a fight.

Next week: five days of brain radiation.

(19-05-10) Clinical Updates

  • Tomorrow is my last day of pelvic radiation. I don’t know if they are able to give me any results at that point, but I do see the doctor afterward. Fingers crossed for some good information.
  • Tomorrow is also my second out of third chemo session. You all know I’m not looking forward to that but at least I get to use a really cool mask. Brain radiation happens all week, and doctor Scolnik assured me that between that and the steroids I’m taking, I will start to feel better. I don’t know if he tells all of this patient’s that, but I can tell you that I’ve been very impressed with him so far. He gave me his personal email address in case I have any questions about this process, and he also calls and checks on me. Doctors today just aren’t like that, and I have three on my treatment team willing to go extra miles just for me.
  • I rented a scooter for almost $400, and Amy lent me a wheelchair. I still try not to leave the chair when nobody’s home, due to the risk of falling, but at least I have more mobility around the house when people are here, and it’s a little better to be going out when I have those tools, and people are taking me to appointments.
  • When I checked 2 days ago, my weight was down to 152. This means that I have lost eight pounds of the edema, and Dr. Scolnick upped my diuretic dosage so that I could start losing more of this faster. It hurts so much. I know as soon as my legs are back to normal, I’ll be able to stand and walk on my own better, so this is the one area I’m so focused on.

(19-05-06) Bad to Worse

I wish I had better news for you. I don’t. Bullet points of updates:

  • At this point, I am on house arrest. If I don’t need to leave the house for medical or legal purposes, I am not allowed to go.
  • I have pneumonia, which is still obvious from the phlegmy cough from hell I have every day.
  • Did I tell you I was recently in the hospital for six days? It was because my brain tumor was expanding on my brain in such a way that was grossly affecting my motor-coordination, memory, and language skills. Scary day. I thought it was my last.
  • Right now, my medical entendre includes two weeks of pelvis radiation (just finished one), then one week of brain radiation, and chemo on April 19, May 10, & May 31. Then we check on progress, to see if we are making any.
  • I get by on a walker. Tomorrow, a power scooter is being delivered that I spent $400 to rent.
  • One of the reasons I can’t walk is because of the 30 POUNDS that the hospital sent me home with. It’s disgusting. I think I still have 27.
  • I cry every day. Some people tell me not to, so I talk to them less on purpose. Right now, I am living the exact end-of-care that I did NOT want for myself. I think many people forget that.

(19-04-16) A Collection of Thoughts From Today

  • To those of you who have called, texted, or hugged me at work, thank you. I feel your love and support. I’m still not ready to talk to everyone about this. I’m trying to figure out what i want my next steps to be, and i need to do this on my own.
  • Did Dr. Rubio lie to me about all the improvements i was making? Or did going off the program for a month (ulcer surgery, a week of hospitalization, and then three weeks of recovery) cause this much deterioration? I know that Rubio Cancer Center is not a scam because i have heard half a dozen people TELL ME their success stories. I want to believe in Dr. Rubio’s ethics and competency … but my anger puts doubts in my head.
  • Dad, your stupid president screwed me on my taxes. Usually, i get about $4,000 back each year, largely due to itemized expenses. He took away a lot of the expenses i would itemize – which cost me $3 grand. Regardless, my $1,143 refund is going right to you via our joint account. You currently have $5k in there… Haha, only $50,000 to go.
  • During Cancer Treatment Round I, I remember how much i hated being consumed by so many medical appointments. It’s already happening (and i haven’t even fully agreed to treatment). Today, i met a new radiologist. He will do the radiation on my brain IF i agree to it. Brain surgery is also a possibility, depending on what next week’s MRI shows. Both options freak me the fuck out. My best friend from high school died from brain cancer. He was really fucked up at the end….
  • Dr. Curley wants me to try 2-3 rounds of chemo to see if it is something i am willing to put up with. I told him I’d think about it and read the literature. He swears up and down it will be nothing like the chemo i had in 2016. I have trust issues and don’t believe him.
  • My boss is being so understanding. When we were talking today about the situation and how it involves my job, i bawled the entire time.
  • I have cried all day – both by myself and everytime someone approaches me to discuss this. I am an ugly crier.
  • My phone will be off a lot this week. I am stuck inside my head right now. Please don’t take it personally. Dissociation is my 2nd favorite defense mechanism.
a picture of my hips … My left hip DOES have cancer inside the femur bone … Just like the right hip did, prior to surgery

(19-04-15) PET Scan #2

Disclaimer: NONE of this is good news. So if you have somewhere to be after this, or you need to keep your game face on, or it’s just not a good time for you to feel sad or start crying, i highly encourage you to close out this entry and come back to it at a later time.

In Mexico, Dr. Rubio told me that, according to the CT scans i spent $2,200 on, there was marked improvement in my lungs, neck, chest, abdomen, and liver. We weren’t sure about my brain because it was my first MRI, and there was no change in my lower back.

According to a comparison between January’s PET scan and April’s PET scan, NONE OF THAT is true.

First, i want to show you two pictures.

PET scans take photographs of various sections of the body. These photos concentrate on my liver. The one on the left is from January, and the one on the right is from April. If you look closely, you can see there is a lot more black in April’s, meaning the cancer has become significantly worse in that area. There are more than ten new lesions in this area alone.

As it has in virtually EVERY area.

Here is a list of what was discussed today between me and my oncologist, as he showed me proof via pictures and the radiologist’s report sent to him:

  • In my back, i have three new lesions: one in my L3 (middle of my lumbar spine), one in my T5 (where a bra strap would be), and one in my sacrum (bottom of my spine). This explains the intense pain I’ve been having in my lower back.
  • There are many new lesions in my bones.
  • There are new nodes and new lesions in my lungs. Coupled with the fact that the nodes in my chest have grown bigger and there is a new one, this explains the awful coughing fits i have been having for several weeks now.

There was, i guess, a little bit of good news:

  • My right hip is fine, but that’s because they took out the cancer when i had that hip replacement surgery in December. So we weren’t really expecting to see anything there.
  • I do not have cancer in my left hip, like i was worried about. The pain in that area is from my left hip compensating for the weakness in my right hip as it continues to heal.

So. If i stick to my stance of not doing chemo, i have about 3-9 months left. Dr. Curley said the pain in my back, stomach, and neck/lungs will get worse, and the brain tumor will cause confusion in my final days/weeks. I did agree to radiation in my back (and possibly my brain, after i get a second MRI of that area), but that will really just be more of a pain management thing because even if the radiation zaps the cancer in that area, we have way bigger issues with the liver, lungs, chest, and bones.

BEST CASE SCENARIO

I really was making legitimate improvement, but being hospitalized for a week, then getting subpar treatment my final week because i was in so much pain from the surgery, then waiting two weeks in the States to start my program because i was trying to focus first in healing from the ulcer surgery put me in a huge setback.

WORST CASE SCENARIO

Dr. Rubio was straight up lying to my face about my so-called progress so that i would continue to stay there.

Needless to say, i am cancelling my trip there at the end of the month.

Daddy, i am soooo sorry i wasted so many thousands of your dollars. I will work diligently to pay you back as much as i can. Based on GoFundMe donations, income from a new roommate, and a $900 bonus at work, i have $5,000 in the account for you. I know it’s a drop in the bucket… But i will keep working on it.

I know a bunch of you have already started calling and texting, wanting to know about my appointment today. I also know that, once you read this, my phone is going to start blowing up. For this reason, I’m turning my phone off for the night. I can’t talk to anyone right now. I am a hot mess of tears, pessimism, and negativity right now. I need to process. Please understand that, and be patient with me. Please.

(19-04-11) PET Scan

Quick update –

I had a PET scan this morning. On Monday afternoon, i meet with Dr. Curley (my oncologist) to discuss the results. My insurance company initially denied this test because i just had one in January, so they didn’t consider it medically necessary. Luckily, Dr. Curley pulled some strings and got that decision reversed. I’m curious to see if this PET scan shows the same thing as the CT scans in Mexico: shrinking and eviscerated tumors.

I’ll keep you posted.

(19-04-07) Home Program

Prior to returning to the states, i bought a home program. It was $7500 for all the vaccine shots and another $600 for the vitamin supplements. I charged them to my credit card, promptly put them in the refrigerator when we arrived home, and haven’t touched them since. I wanted my body to heal from the ulcer surgery first, before i started dealing with side effects from the vaccines.

Except it’s taking longer than expected to heal from that surgery. And i am starting to feel the cancer moving around in certain parts of my body again. Back. Liver. Right hip. It’s active.

So tomorrow i will sit down and organize all my supplements for the week. Tomorrow night i will give myself my first vaccine shot. I’ll probably feel shitty at work next week, but hey. I felt shitty at work these past two weeks, so what difference does it make? At least i don’t have to worry about teaching my own classes until next month. All i need to worry about right now is the cancer moving around in my body again.

Back. Liver. Right hip.

I’m coming for you assholes.

(19-03-29) Symptoms

Going back to work this week was a bad move. I had to call out today.

Current symptoms

* blood in my stool

* bloody nose

* incision from ulcer surgery is infected and oozing brown mucus

* vertigo since Wednesday

* dehydrated

* down to 125.7 pounds, which is AT LEAST ten pounds underweight

* lower back pain

* no energy

… Aaaand just after 7:00, i felt something in my back twinge when i attempted to get out of bed, and now i can’t stand up straight.

(19-03-26) General Update

People have been making comments about me not updating this blog. Honestly, i wasn’t planning on adding entries while i was in the States; my intention was to use this blog when i am receiving treatment in Tijuana. Since many of you still want to know how i am doing, though, here’s a quick summary of where i am at.

* I went back to work on Friday. It hasn’t been easy, having to be at work for 8 hours a day. They really only need me there right now from 9-12; i wish i could work part time for a couple of weeks until i feel stronger. Carissa said it wouldn’t hurt to ask HR if that’s an option.

* I got the staples taken out of my stomach on Wednesday. The top of the incision has an infected suture inside, but Dr. Matatov doesn’t want to remove it because it might still be healing underneath the surface and connected to other sutures under the skin. So, for right now, it discharges gross brown stuff, and it hurts.

* Dr. Matatov stitched up the burned area on my breast. That’s healing nicely.

* I’ve lost a LOT of weight. Currently, i am at 127. As an adult, the least i have ever weighed is 125, which was a very unhealthy time period in my life. I just can’t seem to eat much in a sitting, and i still occasionally throw up. I don’t know how long this ulcer surgery affects my appetite, but I’m hoping i can resume normal eating habits soon. I look sickly, and i am very weak.

Sorry. This entry is kind of a buzzkill.

* My pets know i am struggling, and they have been soooo sweet. Constant attention, constant purring, constant kisses. They make everything better.

(19-03-17) Back Home

I am officially back in Phoenix. I decided to leave a day earlier than planned, so HB flew out to Tijuana, packed up my entire room for me, and then drove me back. We arrived at my house about 9:30 last night. I cannot express enough the satisfaction of cuddling with three of my pets in my own bed last night, after being gone for two months.

In this upcoming week, i have some things i need to accomplish. First and foremost, i need to heal from this ulcer surgery. I have an appointment with my reconstructive surgeon on Wednesday to have the staples removed, and i probably also need to follow up with my regular doctor just to get peace of mind that i am healing correctly. Aside from that, i need to establish my “new normal” here in Arizona. My journey to healing didn’t stop in Tijuana. Life here now will include daily shots, supplements, detoxification rituals, and a new eating plan. That’s what it’s going to take to keep this cancer under wraps. Rubio Cancer Center gave me the tools and the knowledge, and now it’s up to me to implement them. It’s not going to be easy… but then again, when has any path i have ever taken in my life been easy?

(19-03-15) Healing Pains

Wish i had better news to share, but i just don’t right now. Since i have returned from the hospital, i have been holed up in my room, barely able to get out of bed except to go to the bathroom every hour, on the hour, day and night. Meals and drip bags are brought up to my room, as i just lie here. I’m afraid to move; when i do, there is this sharp pain in my abdomen, and i don’t know if it is normal. The doctors here just say it’s gas and part of my healing process from the surgery. It still scares me, though. They put me back on a liquid-only diet… which is fine because it hurts my stomach every time i try to eat anyway. I wish i could just sleep through this, but sleep has eluded me for several days now. I can’t sleep, can’t shower, can’t dress myself … All i can do is lie very still on my back and hope no sneezes, coughs, or bowel movements need to happen for a while.

Traveling this weekend is going to be an experience. I just keep thinking of my sweet pets waiting for me at home, and that helps.

(19-03-14) Wrapping It Up

I’m in my final week here at RCC. I leave on Sunday to return to Phoenix. I’m really disappointed that i missed out on a week of treatment and that, as a result, i don’t get to leave here with my TNF level between 45-50, like Dr. Rubio, Sr wanted. However, I’m purchasing a home program that includes my stem cells, three of the four cancer vaccines, and all the medications and supplements that i take here. I sat with Dr. Rubio, Sr and Carolyn today, and they both went through the entire program with me: what it involves and which days and times i need to do each thing. The doctor also told me he will be upping the dosage on my vaccines from 2,000cc’s to 3,000cc’s, to make up for the time that i lost. He is not charging extra for that; that is a gift. Also, because i expressed initial concern over the cost, he is giving me a discount on this program. It’s still a lot … but it’s not $15,000 a lot. So, i appreciated that.

Aside from that, I’m just here in bed still healing from the surgery. My whole body is weak. I kind of fell today – squatted down to get a tissue off the ground but then realized i had no strength in my legs to stand back up. I ended up going down on all fours and crawling to the toilet so that i could hoist myself up. I didn’t realize this surgery was going to have such a large impact on the strength in the rest of my body. Guess i’m still working my way up past Ground Zero….

(19-03-13) Hospital Compassion

The difference in compassion showed by Rubio Cancer Center staff and the employees at Scripps Mercy Care Hospital was eye-opening. I mean, i already knew this, but spending a week dealing with both American medical staff and Mexican medical staff really just heightened my understanding. Here are just a few illustrations.

  • I had three Rubio employees come see me while i was in the hospital: Dr. Rubio, Sr. himself; Carolyn, the patient advocate; and Adrian, one of the drivers. Dr. Rubio came to reassure me that i was still going to be okay despite this minor setback, even going so far as to tell me he will up my stem cells in my drip bags to get my immune system back on track. Carolyn came bearing magazines, healthy fruit juice for me to drink, and more metaphor analogies to convince me that there was a purpose behind all of this happening. And Adrian brought me my journal, markers, and two books to keep me occupied. These people had to cross border security to visit me. Meanwhile, i never saw the surgeon again after the anesthesia hit me, and i couldn’t get a single doctor from that hospital to spend a solid five minutes with me.
  • The whole time i was in the hospital, i argued with staff about how unhealthy the food options were for a vegetarian cancer patient. They didn’t seem to have a clue that juice from concentrate is not good for you, or that they’re making my cancer battle a harder fight by loading my trays up with sherbet, ice cream, jello, water ice, and pudding. Here at Rubio (who also has a hard time getting it right), one of the first things that Dr. Rubio, Sr. brought up was what kind of restrictions i had with my diet right now, and he encouraged me to tell the kitchen staff exactly what i needed.
  • When i asked Dr. Arcovedo why he wouldn’t take out my bulb drain until the day i leave, especially since it was barely draining anything out at that point, his response was, “Because i have been practicing medicine for twenty years, and I’m telling you your drain comes out when you leave here.” I have never received such an egotistical or narcissistic response from any of my doctors here.
  • No doctor would even come see me the day i left. It was like they couldn’t be bothered. They gave me no discharge paperwork (since i was leaving AMA, they said). They didn’t tell me how long these staples are supposed to be in my stomach, when my follow-up with a doctor back home should be, if there are any warning signs that the area isn’t healing properly, etc. They didn’t even give me a wheelchair leaving the hospital. Meanwhile, Adrian (the driver) is carrying all three of my bags and racing ahead of me to grab the car and drive up to the front of the building, making sure i don’t have to stand outside by myself too long, considering how weak i was … and then anytime we stopped anywhere, he was always helping me in and out of the vehicle and always fetching the vehicle so that I wouldn’t have to walk far.

(19-03-12) Hospital Discharge

I am still in the hospital. I have informed all doctors that i am leaving tomorrow at noon, and they all tell me the same thing: they will not sign off on the discharge, so i am leaving AMA (against medical advice). What this means is that my insurance company now has the right to refuse to pay for any of these procedures or treatment, and i will be fighting this battle later. But i have to go.

Dr. Arcovedo, who calls the shots in my case, still hasn’t cleared me to eat solid foods. First, it was because i needed to work my way up to clear liquids and then full liquids as my stomach was recovering from the ulcer operation … and i understand that, as frustrating as it has been for me. But yesterday, days after i have shown to tolerate all liquids, he refused to approve solid foods because i was hiccuping. I tried explaining it was a nervous hiccup, and he told me it was because my stomach wasn’t ready for solid foods. So, i seriously have not eaten food since last Tuesday at 1:30.

This hospital experience has been like many others back when i went through cancer treatment, and i am sure i will blog about this week in more detail at a later time. But for now, i just want all of you to know that i am returning to Mexico tomorrow to get half a week of more treatment before returning to AZ.

(19-03-10) Scripps Mercy Care

I have no insightful stories, no revelational moments to share, no positive progress updates. This hospital is terrible. Most hospitals are, but this i am disgusted by some of their practices here. I’ll get into more detail about my experience here in another blog post, when i have the energy. For now, though, I’m just passing along the facts.

  • They repaired the hole in my ulcer on Wednesday and still do not feel comfortable giving me any solid foods. Instead, they give me a bunch of liquids, most of which are not healthy for anyone, much less a cancer patient.
broth, Italian ice, jello, soda, juice from concentrate
pureed squash, ice cream, lemonade, mashed rice
tomato soup, pudding, milk, juice from concentrate
  • I developed C difficil, presumably as a result of all the antibiotics i have received in the last two months (both here and at Rubio). They have me wearing a diaper, and i sit in my own shit for portions of the day. So now, even though i came in here for an ulcer surgery, they won’t let me leave until they treat the C difficil. They went me to stay here up to two weeks. Not an option.

(19-03-08) Tentative Game Plan (unfinished)

“Help me release what i no longer need to carry.”

“This is your mantra, tarah. Repeat it. Embrace it. There is a reason you are in this predicament right now. You are at Ground Zero, and this is your opportunity to slough off some residual pieces of your psyche in order to move forward.”

Carolyn, the RCC patient advocate, the eternal optimist who floats in and out of our social sessions speaking mostly in symbolic and metaphorical statements, had a good point. While Tuesday was a wretchedly painful experience and one i would have preferred NOT to have endured, my body was trying to purge some residual something in these final moments of treatment. The isolation, the forced starvation of the body, the lack of distractions in this sterile room to keep me occupied … It was hard to deny the symbolism behind this moment.

(19-03-07) Food

Dr. Barrera is out of the country. I seriously am NOT having good luck recently with getting follow-up information from doctors who perform surgery on me. Fuck, how i miss Dr. Matatov right about now.

Here is the plan outlined by Kristina, Dr. Barrera’s P.A.

  1. There will be no food or drink today, either. This is non-negotiable. She said the hole in my stomach/small intestine was pretty big (even though the report said it was less than 1cm), and they covered that hole with an omental flap, which I understand to just be a clump of fatty tissue. They need to give that time to make sure that the flap keeps the hole closed. There was also a lot of cloudy, gooey liquid circulating around my intestines and abdomem, liquid that should have been clear and smooth.
  2. Tomorrow at 9:00, they will remove this drain from my throat. This 40-centimeter hose has been taking mucus and fluid out of my stomach ever since the surgery.
  3. IF, at 10:00am, i am not having additional pain in my stomach from the drain removal, i will be allowed to have water and clear soup broth.
  4. IF, at noon, my stomach handled the soup broth adequately, i will be allowed to have non-clear liquids: jello, yogurt, applesauce, etc.
  5. IF my stomach continues to go all day Saturday handling the non-clear liquids, they MIGHT allow me to have solid food for dinner. Kristina was quite reticent about agreeing to that part; she wants me to wait until Sunday before eating solid foods. So, i know she just said Saturday night to appease me, but I’m likely not going to get anything solid until Sunday.

(19-03-06-07) Surgery – w/update #2 added @4:30am on Thursday

A BULLET LIST OF WHAT I KNOW

(I will update this specific list every time i learn something new on Wednesday or Thursday, instead of writing separate logs. I will bold new information and adjust the title to make it easier for you to know when i have added something. I will start a new bullet list in a separate entry on Friday.)

  • It is offically 36 hours since this nightmare started.
  • I had an ulcer. Surgery was successful, I’ve been told. I have not yet spoken to a doctor about the procedure. From little pieces of information that i have gathered from others, i had a perforated ulcer, meaning the ulcer had ripped a hole in my stomach lining, so there was all this gas moving freely around in my stomach instead of being contained within my intestines like it’s supposed to be.
  • I will be at this hospital for up to a week. One nurse told me the hospital stay for this procedure ranges from 4 days to a couple weeks, with most patients being discharged after a week.
  • I have a catheter in but no colonoscopy bag, which i was told was my worst-case scenario. So that’s a small bit of good news in all this. The catheter will need to stay in for several days.
  • My room at Rubio will be held for me.
  • Hana took Botas today. He is with his new family now.
  • I’m still coming up off anesthesia, which means I’m still disoriented, while the pain is building.
  • I’m in a shared room with a loud and large Mexican family. This room is too small for all these people.
  • I do not want visitors or phone calls. Please stop. Also, be patient with me responding to your texts. I’m completely overwhelmed right now.
  • I’ll work on giving you more positive, friendly bullet points later tonight.
  • I’m pretty sure I’m in a private Christian hospital. Tonight, they conducted a prayer over the loudspeaker.
  • My new roommate this evening was an older Asian lady. Now I am the obnoxious loud one. 🤷🏻‍♀️ Luckily, i am a charmer when i want to be, and i was just informed that my request for a private room was approved. I’ll have my own space within the hour. It really had nothing to do with being charming. Here is a tip for you: If you ever find yourself in the hospital with a roommate, and you want your own private room, tell them you have a history of C difficile. It’s a really gross thing involving poop, and it’s highly contagious in hospitals, so they’ll give you your own isolation room automatically. I learned this trick during one of my other cancer-related surgeries, and it works every time.
  • The pain continues to be insufferable. They won’t give me more than 0.4mg of Dilaudid at a time. (As a reference point, after my other surgeries, i would be sent home with 2mg tablets.) So what happens is i receive a 0.4 dose, it makes me drowsy, i fall asleep, and then just shy of two hours later, i wake up with the same 9/10 level pain and have to wait up to 15 minutes to get the next 0.4 dose approved and administered. In other words, the insufficient dosage is not allowing me to ever get ahead of the pain. I’ve decided to combat this by setting multiple timers on my phone so that i can play their numbers and timers game and get more frequent doses of pain meds (even though those other doses will only be rounds of 0.1mg or 0.2mg, depending on what i tell them my pain level is). Playing this game requires me to stay awake and consciously deal with the pain, which is enormously frustrating but a latent consequence stemming from our country’s mismanagement of opioids.

(19-03-06) A New Kind of Pain

With the exception of some dusky light streaming in through the window, the room was mostly dark. Boiled cabbage was cooling on my neck, chest, back, and legs. I took off my glasses, paused Orphan Black, and closed my eyes to see if i could sneak in a quick nap.

I awoke to the feeling of Botas scampering across my chest. In hindsight, that 4-pound ball of cuteness probably barely grazed me, but in this moment it felt like someone dropped him from the ceiling straight onto my windpipe. A ripple of searing pain coursed through my entire chest. I’m used to abdominal cramping at this point, so i ripped the cabbage wrapping off my body and headed to the bathroom… but the second i sat on the toilet, i knew that wasn’t the problem. The pain went from 2 to 8 in a matter of seconds. It felt like something had exploded inside me, and it was becoming increasingly harder to breathe.

Is it my gall bladder? No, that’s to the right.

My appendix?? No, that’s further down.

Where is my small intestine? Did it rupture?

Is this what an ulcer feels like? Did i suddenly develop an ulcer?

I wasn’t sure, but the pain was continuing to build, and i went into panic mode. I reached for the intercom.

“I need a doctor in here.”

Every step i took made the pain worse. I leaned over the bed and grunted out breaths and obnoxious noises, waiting for staff. I called for a doctor again on the intercom and pushed the buzzer for assistance, in case no one was in the nursing station when i first called for help.

By the time Nahaliel arrived (which was probably only two minutes later), i was at a full-on 10-level pain, positioned on all fours on the bed, crying, and drooling. I tried to explain the stomach pain to him, but his spotty English and my seering pain made our conversation unfruitful… and i lost my temper when he told me to relax.

“I can’t relax. I’m in a lot of fucking pain!”

“I know,” he said. I’ll be apologizing to him later for cursing at him.

Over the course of the next half hour, staff brought a series of pain meds via shots, drip bags, pills, and oral liquids. I didn’t even ask what they gave me, just took all of it. Most of it barely seemed to have any impact. There weren’t any doctors on site during this time, either, so they had to keep calling Dr. Rubio, Sr. at home for guidance and clearance. It took almost two hours for the pain to get down to a 5. Luckily, one of the meds was making me drowsy, so i was looking forward to sleeping through the rest of the pain … but then, almost as soon as i started to feel legitimate relief, the rupturing screams inside my stomach began building again.

By this time, it was after 8:00. I rang for assistance and asked Nurse Paulina if i could talk to Dr. Smith.

“Dr. Smith, something is wrong. I think something ruptured inside my stomach.”

She asked me a series of questions and checked my stomach with her stethoscope. More pain meds in drip bags, more crying on my end, more phone calls to Dr. Rubio Sr, and then Dr. Smith came back with Dr. Campo, the surgeon i hadn’t seen since the first day at the clinic, when he put in my port.

“Tarah, we’d like you to go get some x-rays and a CT scan.”

My first thought was, fuck, how much is this gonna cost me? I was immediately pissed at myself for even caring about that, when clearly there was a bigger issue here.

“Can i go tonight?”

They called Mario, one of the bilingual drivers, to come to the clinic and take me to Imagen Radiologica Integral. I didn’t even change – just threw my robe on over my shirt and shorts that still smelled like boiled cabbage, and added slippers to my socks. Pink shirt, black shorts with a purple stripe, blue robe, red and white socks, blue and gray house shoes, a red/yellow/green Jamaican hat. Not a single thing matched, so you KNOW i was consumed with pain if i was letting anyone take me out in public like that. Getting in and out of the car was brutal; every time i had to move my stomach in any direction, stabbing pains coursed throughout the area. Every pot hole, every speed bump caused similar agony, and i cried the entire ride. The crying made it even harder to breathe, and at one point, i think i started to hyperventilate. When we walked up to the imaging place, and i saw the line, i REALLY started to cry. We were going to be there a while.

It was almost midnight when we returned to the clinic. I don’t want to go to sleep. What if i don’t wake up? I assumed no one would even look at the x-ray results until the next morning, and i was prepared to stay up all night until Dr. Godinez arrived to work between 7-8, so imagine my surprise when Dr. Smith opened my door just five minutes later.

“You have a perforation in your abdomen.” “You’re gonna need a laparoscopy. ” “Emergency surgery.” “Do you have insurance?” “Dr. V, from the lab, loves cats. She’s going to take Botas while you’re gone, so you don’t have to worry about him.”

She said other things, but this was what i heard and remembered. I requested to go to a hospital in San Diego instead of Mexico, for financial reasons, and she said that could be arranged. They called Adrian, the clinic’s main chauffeur, and i quickly packed a bag while waiting. Poor Botas. He knew something was up. When Paulina came to help me pack and change, we both watched Botas scale the entire shower curtain, then remain up at the top, staring down at us. “Botas, come down from there. Your foster mom is going to be okay; you don’t need to stress. Yo te amo.” I think he understood because he scooted down the curtain and headed for his food, while i headed out the door.

* * *

It is now 4:25am. I have been at this hospital in San Diego for over three hours. Morphine and fluids are infiltrating my system, and i just got back from a CT scan, which showed a perforation in my bowels that is causing free air to circulate all around my abdomen. They are making arrangements to prep me for surgery later this morning. It’s an inpatient procedure, so i will be here for several days. Kyana is my emergency contact, so she’ll have details about my surgery results before i even will. It might be a day or two before i am capable of providing an update myself, but I’ll do my best to keep you all posted.

(19-03-05) Communication Malfunctions

The last couple of days have just been effin BIZARRE, communication-wise. I mean, it’s been difficult here the entire time, what with both the language barrier and the whisper-down-the-lane style for transporting information between doctors and nurses and office staff and cafeteria workers … but recently, conversations have just been straight up weird.

Like yesterday, when Blanca came in my room.

“Tarah. Tomorrow, the cleaning lady needs to come in and clean your room.”

“Okay…. She comes in and cleans every day. Why are you telling me this?”

“She said you won’t let her clean your room.”

“What are you talking about? She was just in my room earlier today. She even took the linens from my bed.”

“She told Dr. Junior that you won’t let her clean your room.”

* * *

Or this conversation with the Sunday nurse, about ten minutes after she hooked me up to my first evening drip bag, and i noticed something as I was sitting in the cafeteria waiting for my dinner to be made.

“Ummm… This isn’t my drip bag.”

“Como?”

“I’m Tarah Ausburn, not Eva Parker. This bag is labeled ‘Eva Parker.'”

* * *

Or this conversation with Nahaliel an hour ago.

“Dr. Rubio wants you downstairs in his office so that he can give you your shot.”

“What shot?”

“The shot in your knee.”

“Why do i need a shot in my knee?”

“For the pain.”

“But i don’t have any pain. I had pain from the magnet vaccine, but they gave me pain meds for that.”

“Oh, okay. Let me go find out.” He never returned.

* * *

Or the conversation with the cafeteria worker at lunch today.

“Tengo hambre. Dame un quesadilla con mi pan y queso?” (I gave them vegan cheese and sprouted pita bread that they use, in an effort to be eating more healthily while I’m here.)

They bring me out beef stew.

It got to the point where i was thinking to myself, Jesus Christ, is Mercury in Retrograde or something??

So i looked it up. It officially started today.

(19-03-04) A Crappy Day – Pun Intended

3:32 am.

I awake with a start at the all-too familiar feeling of something moving around in my left knee. The cancer cells are on the run. Within three minutes, I’m already buzzing for the nurse. Gotta try to stay ahead of the pain this time.

The Spanish-speaking Sunday nurse takes her sweet time getting to my room. I’m guessing i probably woke her up, so almost ten minutes pass before she opens my door.

“Tarah?”

“The pain has started. It’s in my knees.”

“Pain?”

“Yes, pain.”

“Estomago? ”

“No, joint pain.” I point to my knees.

“Oh, okay,” and she leaves.

I expect her to come right back. With every passing minute, the pain intensifies and travels, moving along my left elbow, hand, and foot. The tears flow, and my moans are probably waking up the patients across the hall. Five minutes pass, and i press the buzzer again. I know i am being impatient, and I simply don’t care.

At 3:54, she brings me a shot of pain medicine, then leaves. I settle into a breathing activity to push through the pain and return to sleep … which works for about an hour.

5:05. Again, I wake with a sudden start from the jolt of joint pain. I knew that shot wasn’t going to cut it, but the weekend staff doesn’t understand the magnitude of this pain. By the time the nurse returns to my room, i am sitting in a pile of my own shit, rocking back and forth crying. I had literally shit myself, needing to go to the bathroom but unable to stand up due to the amount of pain in my feet, at this point. I don’t tell the nurse about the mess in my bed – partly because all i can focus on is the pain and partly because i am beyond mortified. Instead, i just lay there in fetal position, silently crying and slowly rocking while she hooks me up to a drip bag that contains more pain medication. When she leaves, i continue rocking, crying, and deep breathing for about a half an hour before the pain subsides enough for me to get out of bed and clean myself up. By this time, it’s after 6. I rinse myself off and then strip my bed. Laundry facilities are only open to the patients from 4pm-7am because the cleaning crew needs them during the workday (and i have already pushed my limits with this timeframe twice since i have been here). I attempt to run the bedding and my robe downstairs to at least get them in the washer before the staff get there, but i am too weak, and i buckle under the weight of all the linens. So instead, i throw the smelly pile down into a corner of the room, move over to the spare bed, and curl up in defeat as i wait for the pain meds to take effect.

* * *

That was how my day started. It really didn’t get much better from there. The day itself was filled with low appetite, non-functioning taste buds, cotton mouth, fatigue, head fog, weakness, a sore throat, nasal drainage, diarrhea, abdominal cramping, heavy sweating, and – according to Blanca – yellow skin. Luckily, the joint pain never returned for another round, and the cleaning lady took the soiled bedding from a very embarrassed me to launder. And now, it’s 11:35pm. The idea of (1) waking with a start to more joint pain or (2) defecating on myself again has me afraid to go to sleep… but my eyelids are heavy, and falling asleep brings me one day closer to going home.

And I*really* want to be one day closer to going home.

(19-03-03) It Takes a Village

A recurring theme throughout these 3.5 years of on-again, off-again cancer treatment is this: Accept every ounce of love and support sent your way because there is no way you will make it through this alone. The first go around, this was a difficult lesson for me to learn. My fiercely independent nature not only shied away from accepting help; it straight up refused to reach out and ask for it in times of clear need. I remember having a wake-up call one specific day. I was driving home from an appointment with my first reconstructive surgeon. Dr. Walsh had just inflated my expanders, which had required me to take some Valium (on top of pain medication i had already taken earlier in the morning). As i was making the 45-minute drive from her office to my next appointment with my dentist, it became clear to me that there was no way i should have been on the road driving. My head was nodding, and i know i swerved a little on the I-10. Did i pull over and call someone? No. I slapped my cheeks a couple of times and kept going… but i remember the guilt i felt the rest of the day about the danger i put myself and other drivers in. Someone could have gotten hurt. I could have gotten a DUI if pulled over. And the WORST part? I had three different people offer to take me to that appointment that morning, but i declined because i wanted to handle my own business. Someone could have died because i wanted to “handle my own business.”

It takes a village. I have come a long way in my understanding and acceptance of this.

So when i had this great idea to turn my weed garden into an actual garden filled with cancer-fighting foods, i knew just which members of my village to turn to.

Dear Amy and Marcia,

What you did for me this weekend was phenomenal. I have cried twice already looking at the pictures you sent me. From going to multiple stores for supplies; to coordinating access times with my roommate; to reweeding the space, which i SWEAR was just done a couple weeks ago by Jose; to planting basil, beets, broccoli, cabbage, eggplant, kale, mint, oregano, parsley, peas, peppers, squash, and tomatoes – you two gave me the perfect gift to come home to. Genuinely healthy eating is going to be my biggest barrier when i return home. I’m going to need willpower i know i don’t have… friends willing to make adjustments in where we go out to eat on special occasions… coworkers who no longer cheer up my rough days with deliveries from Starbucks or Elevate Coffee … a roommate who won’t enable me anytime i am stressed at home and giving her puppy dog eyes to go run to the store for some chocolate or Doritoes…. And when i find myself in moments when I’m sitting at home, stressed about whatever and on the verge of wavering, i can go out to that garden to weed it, water it, thin it, pick it – whatever it needs in that moment as i push past my cravings and concentrate on the bigger picture, the end game: me staying alive. Amy and Marcia, the gift you gave me today is a tool i will use for months to come. Thank you for being such a vital part of my village.

Love,

Tarah

P.S. A special shout out to Tyler and Jenna as well. Tyler, thank you for going over to the house to fix the wiring on the sprinkler system. Jenna, thank you for going outside tonight and making sure that all the plants were getting watered evenly. I appreciate you both being a part of my village!!

Hi, Marcia!!

AFTER!!!

various vegetables
assorted peppers
herbs

(19-03-03) Dr. Melissa

Dr. Melissa has officially redeemed herself.

(1) She’s bringing me three jars of that pain-relieving cream next weekend (one is for you, Michelle!). I already gave her the money, and she has an appointment with the guy who makes them this week.

(2) She told me where the organic grocery store is. I’ve been asking all the staff here for weeks about a health food store, and no one had any suggestions for me… even though Prana is only two miles from the clinic!

(3) This morning, she took my almond milk, unsweetened peanut butter, and rotting banana from my room and had the kitchen staff turn it into a bomb ass breakfast smoothie. After eating eggs and 12-grain toast for breakfast every day for the past six weeks, this is *seriously* hitting the spot.

I’m already feeling my mood shift upwards. Bye, Grumpy Tarah. I know you’ll be back, but I’m gonna enjoy our space while you’re gone.

(19-03-02) Mini Rants

I am convinced my physical and mental states have deteriorated so much this week as a result of the cumulative effect of all the treatments i am getting. When i first got here, they dosed me exclusively with immune-boosting drip bags, building up my body to prepare for the fight ahead. (Sigh – i was feeling so invigorated then!!) From there, they introduced two of their standard cancer vaccines – nothing too serious yet – then one round of chemo. Now, though, as Week 6 comes to a close, my body is juggling four different vaccines and four different chemo drugs every week … and it’s running out of steam. Add sleeplessness, unsatisfying food, very uncomfortable body swelling, and official homesickness, and yeah: Grumpy Tarah is out on the prowl. Big time.

Dear Blanca,

You are, by far, my favorite nurse here. With that said, if you come in my room one more time and deliberately wake me up from a nap for no good reason, i might bitch slap you. No, i don’t want dinner. Yes, i know i have been sleeping all day. I’m fucking tired. I’ve been up since 2:30 and on the toilet since 4. Go away. Stop telling me to go downstairs and get dinner. Look at my stomach. Does it look like it needs food right now? It can eat the gas and the feces in there, for all i care, and wash that meal down with all the fluid retained from the drip bags. … Are you seriously not going to turn the light off when you leave? Blanca, do not TEST me today.

* * *

Dear Nahaliel,

I’m pretty sure that it’s your fault i feel extra shitty today. Saturday is supposed to be one of the two days in the week that i don’t experience any symptoms … yet here i am, clammy, exhausted, body-heavy, with a sore throat and extra mocos in my nose. Yesterday, you were supposed to come take those magnets off of me after two hours. You forgot, and i fell asleep waiting, and those magnets were left on my body for almost three hours. I don’t think that’s going to end well, especially since Dr. Rubio, Sr. told me that he caps those magnets at two hours for anyone. I’m a little nervous about the pain that’s going to hit tomorrow now, but you won’t even be at work tomorrow for me to take my frustration out on you, dammit.

* * *

Dear Dr. Smith,

While I do want to thank you for FINALLY getting me those itemized statements after i hounded you for over a month, what the hell am i supposed to do with a 22-page hardcopy edition? Do you see a scanner in my bedroom? There was a reason i asked you to email me this documentation. I swear you did this on purpose. I thought paying for your stupid tacos the other night would have worked as a subtle peace offering – apparently not. You’re welcome, by the way. Guess I’ll be back in your office on Monday night… You can’t get rid of me that easily. I’m just saying – if you dislike me as much as i feel you do, you should just give me what i want the first time around so that i leave you alone.

* * *

Dear Botas,

Stop fucking scratching that one wall. You are literally peeling the wallpaper off. If i have to pay to get that wallpaper strip replaced, I’m gonna toss your ass back out on the street. You have toys. You have a hamper and a chair you can claw. I know you need a damn scratching post; I’m trying to find you one. In the meantime, show some restraint. Are you seriously attacking my foot right now, as I’m ranting about you? Are you serious? How’s this water bottle blast feel right about now? Yeah, run away. You be working my nerves too, today.

* * *

Dear Weather,

Can you PLEASE not rain again tomorrow morning? I’m going stir-crazy in this room, and my window of opportunity for walking tomorrow is going to be minimal – especially since Nahaliel left those magnets on, and i don’t know what time that joint pain will hit me. Please take pity on this miserable White girl from AZ and just hold off on raining until later in the morning. I know the forecast says there is a 40% chance it will be raining by 7. Please. Work with me here.

Sincerely to all of you motherfuckers,

Tarah

(19-03-01) Melissa’s Visit

As children, my cousin, Melissa, and i spent a lot of time together. With only one year difference between us, we naturally gravitated towards each other at family functions, and i have lots of memories of us swimming in lakes, doing each other’s hair during slumber parties, her trying to teach me how to draw cats (and me miserably failing), having racing competitions in her pool, playing Sonic the Hedgehog back when Sega Genesis first came out, and catching fireflies on summer evenings in our mom-mom’s front yard. When i left for college at 17, i severed my contact with much of my family for many years. As a result, Melissa and i had not spent 1:1 time together in close to 25 years – until now.

And let me tell you: Melissa’s mothering nature was exactly what my psyche needed this week.

From bringing me presents that brought soft joy to my head and hilarious confusion to Botas’ curiosity …

… to willingly leaving the room and giving me privacy every single time i had to make a mad dash to the bathroom (and it was a lot!) …

… to massaging my knees and legs when the pain from the magnet vaccine was making me cry …

… to fixing me hot chamomile tea at night to settle my stomach …

… to doing, folding, and putting away my laundry for me while i lay around in bed trying not to move too much …

… to distracting me from my pain with entertaining stories about alpacas, goats, and her charismatic daughter …

… to providing me with company during all my treatment sessions …

… to bringing me heating pads and ice packs and cold water and Saltines and buttered toast and breakfast in bed sometimes even before i knew i wanted/needed those things …

… to watching terrible movies on Netflix together and then laughing at our bad picks …

… to patiently waiting for days before i had the strength to venture outside for a walk around town to look for cool Swap meet finds and eat local Mexican food …

… to helping me find my boyfriend just the right t-shirt to add to his nerd collection …

… to keeping Botas fully distracted and entertained when he was feeling rambunctious, but i was too sick to engage, to the point where he would just pass out next to her from sheer exhaustion …

my cousin was in FULL-ON nurture mode the entire time, and it was probably the only thing that kept me from having a meltdown this week.

Melissa, i love you. Thank you for everything. Botas and i already miss you.

(19-03-01) Insolent Moments

Maslow’s Hierarchy of Needs. One of my favorite psych theories to reference. According to Abraham Maslow, seeking fulfillment and change through personal growth is what sustains our motivation in life as human beings. The first month i was here, i was in full-on self-actualization mode: visualization activities during my vaccine treatments and nebulizer sessions, mindfulness practices when receiving the four rounds of chemo each week, deep-breathing moments in time of doubt, daily reflections via blog and personal journal entries, etc. I was working hard to understand the kind of person i want to make sure i am once i survive all of this (again), along with what steps i need to be taking this year to get to that version of myself. In this past month, often between the hours of 2-5am, i realized some things that have been holding me back, and how to move forward from those past experiences and personal barriers that i have put in place. I also had a couple revelations about myself in regards to what i want my future to look like. Being here has opened my eyes in more ways than one.

But alas, staying focused on self-actualization only lasts as long as all of the other needs on the triangle are being fulfilled … so threats to my basic needs take me away from the space I’m trying to stay in and instead thrust me into the spaces that are necessary to be in in order to get my physiological and safety needs back on point. Sleep: not getting it. Healthy food: still somewhat of an issue. Physical wellness: spotty after a week of intense side effects from cumulative vaccine and chemo doses. Sense of security: wavering in the face of looming financial concerns. I bring all of this up to say that as I’ve regressed back into addressing some of my deficient needs, I’ve also regressed in my approach to getting some of those needs.

In short? I’ve been a little bratty.

Yesterday, i petulantly told the nursing staff that i would not get hooked up to another drip bag until they figured out a way to de-swell my body. I’ve been bitching about being swollen and bloated for weeks now … and yes, a lot of it revolves around superficial vanity, but it’s also uncomfortable. When my entire midsection is extended, eating becomes painful. When my legs swell up, walking around town and up/down stairs becomes problematic. And by yesterday, my body had swollen so much that we could no longer identify my ankles or knees in either leg. My thighs looked like tree trunks, and Blanca even cracked a joke about my emerging double chin (not fucking funny, Bianca). So after throwing a slight tantrum, Blanca gave me some liquid version of a water pill, compressed my ankles with gauze, and had me elevate my legs for most of the night as i waited for the medication to take effect. Twelve hours later, i have peed four times, my ankles are back, and i feel a little relief in my legs and abdomen … but until i can button up my jeans again, i am going to insist on daily water pills BEFORE allowing them to hook me up to any more drip bags.

I also got into it with Dr. Smith last night. Dr. Smith is the weekday nighttime doctor. I have very limited interactions with her, but she is the doctor who handles a lot of the clinic’s paperwork needs … So for four weeks i have been trying to get her to give me itemized statements of my treatment here. She blew me off the first week i asked, so i took to stopping by her office every few days around midnight to follow up with her. When that didn’t work, I consulted with Patient Advocate Carolyn about how to better approach the situation; upon Carolyn’s suggestion, i handed Dr. Smith a list of exactly what information i need the invoices to include. Still nothing. As of last night, i had had enough.

“Dr. Smith. Every night i come in here, and you tell me the same thing. You’re working on it. You’ll have something tomorrow. Why does it take a month to give me a rundown of my bill?”

She proceeds to tell me all the same excuses I’ve been hearing for the last four weeks. I bite my lip a lot to keep myself from interrupting her. I can feel my 4-year-old Tarah waking up.

“Yes, Dr. Smith. I have heard all of this before. I know you’re busy. I know you have other patients coming and going. I know we got new inpatients this week. I know you’re trying to cross reference nurse logs to make sure everything is 100% accurate. … But i also know you have promised me these documents half a dozen times already, and you still didn’t answer my question about why it takes a MONTH to get this paperwork. I pay my bill on time every week. I should get the same respect in return. I need that paperwork for insurance and tax purposes.”

“I know, Tarah. I will have something for you tomorrow.”

“How much do you have finished right now?”

She swindles her computer monitor for me to see, and i notice the date at the top: 28 de enero.

“You’re still working on the second week?!”

When she nods her head and offers no apology, my mature self folds into itself and moves aside to let bratty Tarah come out to play.

“This is ridiculous. I have been patient long enough. If I don’t have my statements by Monday, i am not paying my weekly bill. My dad will not pay for it [lie]. He’s been on my case to get this paperwork for weeks now, and he thinks i am not following through with what he asked me to do [more lies]. So if i don’t have these documents from you by Sunday, i will be refusing to make any more payments until i get them.”

She tells me she’ll have something for me tomorrow before she leaves around midnight. I give her a long look to let her know i don’t believe her, sigh melodramatically, reply, “Yeah okay, Dr. Smith,” and leave her office.

So yeah, i’ve been kind of bratty these last 24 hours. Distracted from my goals and bratty about getting my needs met. As my sixth week here crawls to a close, i can definitely say i am over being a patient who has to rely on hospital staff to help me get my needs met. I’m ready to come home.

(19-02-26) Financial Slap In the Face

I know i am not supposed to be worried about anything while i am here. My one task here is to invest my body and mind into a positive healing space and just do what it takes to get this cancer out of my body. Sigh… I know. But I’ve been dealing with bills the past couple of days, and money has been on my mind… So the conversation down in the kitchen with Elma May threw me into a widespread panic about how the heck i am going to afford this once i leave. I thought that, once i returned to the States, if i got a second job AND a third roommate, i would be able to afford both the home programs and the maintenance visits. I won’t. Elma May said her first home program cost her $15,000. FIFTEEN GRAND. It’s the shots that are so expensive, the daily injections of the vaccines and the stem cells. I don’t know how long that one home program lasts, but i still have to come back here in April ($8k), June ($8k), probably October ($8k), and December ($8k). So, with just one home program (and i know i’ll need more than one), I’m looking at a 2019 medical bill of at least $47,000. Forget a part-time job; that’s a whole second full-time teaching job… which is why positivity and healing spaces are out the window right now, and i am hiding in the bathroom in the community room, trying to quell a rising panic attack. Did i really come this far just to find out that ongoing treatment will not be a reality for me???

(19-02-26) Conversation w/the Doctor

Dr. Rubio, Sr’s devious glint in his eyes let me know he was starting off our daily check-in with a bit of teasing.

“So, i heard you had a good Sunday.”

“I did NOT have a good Sunday. ”

He laughs at my pouting face, and we discuss symptoms, Sunday staff, and changes in drip bags for the next two days. At one point, he mentions the magnet vaccine.

“It hit faster and harder because you went for two hours. Next time, we go back to one.”

I protested. “No, i want to keep it at two. I’m here to beat this cancer. I know it’s going to be painful… but i want to do the maximum.”

He agreed to keep it at two, so I’ll probably get another round of that on Friday? (I forgot to ask him that.)

From there, we proceeded to discuss my timeline here, and here is the basic gist of our conversation.

  • He wants me to stay for two more weeks. His goal is for me to get my TNF number down to 45-50 before i leave. I don’t see that happening in just two weeks, but we’ll see….
  • Then, he wants me to come back in a month for a week of treatment. I have already booked my flight to return here the week of April 29.
  • He wants me to return for another week of treatment in June. Well, he said another month, but i would hold off until my students are on their school break.
  • At that point, we’ll decide whether i can just start coming for maintenance treatments once every six months or if i need to keep it at three for a while longer.

We also discussed the home program in more detail – specifically, the shots. I learned that the shots are doses of the vaccine and my stem cells. I didn’t realize I’d have access to my customized vaccines and stem cells at home, so i got a little excited about that. I’m a little less excited about giving myself shots every day, but he once again reassured me that he would show me how to do it properly before I left. He also confirmed what Erin told me a few days ago – that following the home program will allow my TNF number to continue going down even when i am not here in Tijuana. Hearing him say this flooded me with light inside, as it was yet another reminder that cancer is right now, in this moment and all future moments, losing its war inside my body. I’M GONNA WIN.

(19-02-25) Sunday Not Funday

Reactions to the magnet vaccine hit a day earlier than expected, and I learned this weekend that Sunday is the worst day here to need some extra personalized attention.

  • There are only two staff present on Sundays: Dr. Melissa (bilingual) and Nurse Mari (almost exclusively Spanish-speaking). This means that two people are responsible for nine different patients, which is a lot, considering some of us can be a little needy when they’re not feeling well (ahem, ahem).
  • Because these two are only here on Sundays, they really don’t know our needs and routines like the other staff do. Hence, we waste a lot of time reviewing information that I feel they should already know.
  • They both pull long shifts on these days: Dr. Melissa, 36 hours, from Saturday night to Monday morning; and Mari, 24 hours, from Sunday 7am – Monday 7am. They get tired. They sneak naps in the middle of the night. They don’t always respond quickly to 3am panic buzzes from my room.

So yeah, if I can figure out a way these last few weeks to get my symptoms to act up any other day of the week besides Sunday, I’m gonna work that out.

On a positive note, Dr. Melissa gave me a bottle of specialized arnica and eucalyptus cream as a pain-relieving topical treatment. Holy cow, this stuff works way better than the Arnica cream I commonly buy back home at Sprouts. She said her friend specially makes it, which makes this gesture even sweeter. Hopefully, I can find a way to order it back in the states…or sweet talk Dr. Melissa into adding some into my home treatment program.

(19-02-24) My First Quincenera

It’s kind of amazing, that it took being a cancer patient in Tijuana for me to finally attend a quincenera. Back when I taught middle school at Rose Linda Elementary, I had to have been invited to about a dozen of these… But I already declined, feeling weird about the idea of being a teacher and shitting up to my students’ parties. sooo… Tonight broke the seal.

Getting ready was fun. Spotify played my “Get Hype” playlist, and I reunited myself with heavy eye makeup and fancy shoes. I was NOT happy about squeezing my fat ass into a second dress after the first one groaned in protest under the stress of five weeks worth of drip bags for 10+ hours/day. My vanity is SUCH an issue, and I’m really struggling with not being able to do anything to correct it. Yeah, yeah, beauty’s on the inside… Curves are welcome… Tell that to a face that can’t fully smile at her reflection in the mirror because her cheeks are so bloated. Sigh…I know. I’m working through it.

The place, of course, was beautiful. It was in some banquet hall at what I think was a country club, and the room was bedazzled with large bouquets of flowers (one of which i brought back to my room, despite Blanca’s protest) and shiny pink decorations, to match the designated color of the evening. (I also stole the pink satin napkin placed upon my lap by the server.)

Drinking was…interesting. With just one tequila shot and one Pina colada that may actually have had no liquor in it, my insides warmed up… Which was what I expected, considering I haven’t touched alcohol in over a month. But the drinks flowed freely for five hours after that, and I never got drunk. Not even close. Blanca did. Jesus Christ, Blanca did, to the point where I worried about the future backseat of our can driver, but not me. I don’t know if it’s somehow because my treatment here, but the only effect that the alcohol had on me was to fill up my bloated stomach even more and give me so much acid reflux that at 4:44 in the morning as I type this entry, I am still vehemently burping up margaritas, Pina coladas, and red wine.

It was also freezing. At one point, I ordered a coffee – not to drink, but just to hold and blow into in an effort to warm myself up a little. Blanca almost fell over in her chair laughing as I intentionally fogged up my glasses just to retain a bit more heat.

Regardless, I’m glad I went. People watching is always fun for me, and even though drunk Blanca drove me crazy after a while with her insistent need to try to pull me on the dance floor (I went out once, hoping to placate her … It didn’t….), just being around people so excited to introduce this 15-year-old into symbolic womynhood was a beautiful moment to observe. Plus, choreographed dancing to “Informer” by Snow? Are you kidding me?! That’s a once in a lifetime opportunity right there.

Thanks, Tijuana, for putting another memorable experience in my arsenal. And Kyana, on account of raiding the dessert buffet not once but twice, I promise not to eat a stitch of sweet stuff for a solid week – even when or on my plate directly by the cook.

(Just love me.)

heart-shaped cleavage
icing on the nose
She straight up bit me, at one point.
no shame in this girl’s makeup game
ONE of us is getting tired at 1am….
I found her a substitute dance partner. It still wasn’t good enough.
Still dancing after 2am!!
Even the wait staff caught the fever.

(19-02-23) Breakfast Conversation

Erin. She’s a returning patient here, one who has been coming back and forth to the Rubio Cancer Center for several years now to get treated for Hodgkin Lymphona. She cornered me in the laundry room one morning weeks ago, but considering she’s one of the few female patients not wearing a bonnet on her head, I took to keeping up conversation with her over the next few weeks, even inviting her into my room one day to play with Botas. This morning was the first day all week that I took a meal downstairs, and we had a conversation about TNF numbers.

me: So, how much longer do you have to be here? Do you know?

Erin: We leave on Wednesday.

T: Oh, so then you got your TNF level down to 20 again?

E: Actually, it’s at 11.

T: 11?! That’s great. I thought the goal was 20.

E: Well, 10 is considered remission. I wanted to stay until I got to under 10, but my husband’s grandmother’s 90th birthday party is this weekend, and I don’t want to miss that.

T: Of course. The whole purpose of being here is so that we can enjoy our lives out there.

E: Exactly.

T: I was a little disappointed when I got my TNF level this week because I have been here almost five weeks now, and it’s only at 66…and I’m supposed to stay until it’s down to 20, right?

E: Well, I don’t know about your case, but the first time I was here, I left when mine was still in the 60’s.

T: You did?

E: Yeah. It started at 92, and I left a little over two months later. And every time I come back for more treatment, the number continues going down.

T: Now, when you return, is your number still the same as when you left, or does it shoot up a little?

E: Actually, it goes down … because I’m doing the home program the whole time I’m gone.

T: Oh, I hadn’t even factored that into the equation. That makes sense, though. So, since 10 is considered remission, is that your goal?

E: My goal is 0.

***

This conversation was eye-opening for me. One of the reasons I was disappointed with this week’s TNF number was because I was under the impression that I shouldn’t leave until I got down to 20 … and since it has taken me five weeks just to move down 22 points, I was worried I’d have to stay several more months. However, it doesn’t sound like that’s the case. Obviously, metastatic breast cancer and Hodgkin Lymphoma are different cancers, and I need to consult Dr. Rubio, Sr about my case specifically … but this gave me hope that I will be able to leave here sometime in March after all.

(19-02-22) General Updates

Not much to report today. I’m in a bit of a funk – probably a combination of being sick and confined to the bedroom for the past several days, as well as exhaustion from only sleeping 3-3.5 hours last night. I did actually leave my room today to take a walk and eat one meal. I also had my second round of electromagnetic vaccine today, and the doctors kept the magnets on my body for two hours this time instead of one. I’m anticipating a more harsh reaction in a few days because of this. I’m just hoping I clear that hurdle before my cousin gets here on Tuesday.

On a more positive note, I got invited to a quincinera celebration tomorrow night…so I guess I’ll be partying it up in Tijuana this weekend a little!

(19-02-21) TNF Update

1/23: 88%

1/30: 84%

2/6: 78%

2/13: 71%

2/20: 66%

Secretly, I was a little disappointed. At this point in the game, I was hoping to be more than halfway to the ideal goal of getting down to 20%, especially considering that my FMLA runs out in three more weeks, so I will need to leave here by then to return to work – whether I reach that goal or not. I’m currently reminding myself that another round of the magnet vaccine should help, as will the fact that he upped my other vaccine dosages this week. Gotta stay positive… Gotta see all progress as good, even if it’s not the leaps and bounds I’m hoping for…gotta work on my patience, as usual….

(19-02-21) Battle Time

Yesterday was rough. Dr. Rubio, Sr. warned me that by raising the dosage of the vaccines by 1,000cc’s, I was going to experience an increase in side effects, and he wasn’t exaggerating. Meals and drip bags were brought directly to me as I spent the entire day inside my room, alternating between crying real tears of pain in the bathroom and rolling around in my bed making obnoxious moaning noises that probably made my Amish neighbors blush and say extra prayers for my fallen soul. I got to experience another round of that intense joint pain, where the dying cancer cells are fleeing the battlefield and all rushing towards the same places – in this case, my right knee, both elbows, my hands, and my feet. My mindfulness activities failed me once they hit my hands, and I begged for (natural) pain medication at that point, which they administered from 12:30pm all throughout the night.

Right now, I have a temporary reprieve. I’m still feeling sick, but showers help with the fever flushes, and the pain meds are masking the body aches and stomach cramping. My stomach is even growling for solid foods right now … and today I am going down to the kitchen PROMPTLY at 7:59 because we currently have some bigger, farm-sized Amish patients who leave me NO eggs in the morning when I get there at 8:30. Not today, boys. Not today.

I have been warned another round is coming, especially since I am getting the electromagnetic vaccine tomorrow. I am preparing my mind for battle once again. Luckily, I have a little soldier in my corner who brings me both comfort and joy in my time of need ….

4am snuggle sessions
taste-testing my dinner
watching TV with me after I just finished crying

(19-02-20) Random Acts of Kindness

Even though I know my purpose here is to focus exclusively on my own healing, one of the things on my daily To-Do list is to commit one random act of kindness. No matter what I am going through in my own personal life, everyone else in this world is also working through their own struggles, and it helps me keep perspective to remember and respond to that. I am also a firm believer in putting positive energy out into the universe, energy that often returns to me when I am not expecting it. This isn’t *why* I commit daily acts of kindness; it’s just something I have noticed along the way in my journey throughout life.

Yesterday, I called ICU Security, my home alarm system company, to settle my annual bill. I’m a little late on the bill (due February 1), due to problems with not receiving paychecks anymore at work, some checks getting delayed in dropping into my account, and technical difficulties with making phone calls from here in Mexico. I explained in detail my situation to Shirlene Spearman, ICU’s office manager – just so this local Scottsdale office could know my delay was legit and not just inconsiderate.

And do you know what she did?

She gave me a 50% discount on my annual bill.

For absolutely no other reason besides the fact that she felt compelled to help a struggling stranger, she reduced my yearly annual fee from $399.60 to $199.80 for the 2019 year. She also made it a point in an email to offer to help me with shopping or errands upon my return to the states.

I have never met this womyn.

It is yet another reminder in this scary Trump-bully era right now that there continue to be kind people in this world who want to do right by others, just because.

And that inspires ME to do more… Because that’s how positive energy in the universe works. Paying it forward is such a beautiful concept.

(19-02-19) Test Results

Get out the tissues, and take a seat.

Some background information, before I get started.

  • A normal-sized cancer cell is 1cm. What this means is that cancer cells smaller than 1cm are not really cause for concern (remember that we all have cancer cells in our bodies), but larger ones are because that means they’re active and on the prowl to kill my healthy cells.
  • A lesion is an area of abnormal tissue. Lesions can be cancerous or benign; in my case, I am only referring to cancerous lesions.
  • When I mention nodes, I’m specifically referring to lymph nodes that have cancer in them. As you may recall, back when I had my mastectomy, I had 21 lymph nodes removed, and they found cancer in 20 of them. So even back in 2015, my cancer was quickly moving throughout my lymphatic system, trying to get to other places.
  • “Necrosis” essentially means “death,” so when I say a node or a lesion shows necrosis, it means the cancer cell activity is dying off. (It’s basically what those TNF numbers are showing each week; these reports just illustrate that a different way.) This is what we want to see happen.

LUNGS/NECK

JANUARY

3 nodes: 2.2×1.5cm, 1cm, 1.2x1cm

TODAY

1 node: 0.8cm

CHEST

JANUARY

multiple nodes less than 0.5cm

1 node: 2×1.3cm

1 lesion: 1.9×1.4cm

TODAY

The lesion is GONE.

ABDOMEN/LIVER

JANUARY

2 lesions: 1.8×1.4cm and 4.5×1.9cm

TODAY

The first one has reduced in size to 1.2cm and is showing signs of necrosis. The second one – the biggest one in all of my body, actually – is GONE.

LOWER BACK/SPINE

The lesion in my L5 is still there, and it’s the same size. However, a hernia protrusion that used to be there is GONE.

RIGHT HIP

It’s still pretty inflamed from my hip replacement surgery, and PET scans can’t always differentiate between inflammation and cancer cell activity. With that said, there are no new spots indicating activity in that area.

BRAIN

I never had the chance to get an MRI of my brain before I came here, so we didn’t know if the cancer had gone to my brain yet. I was sure it hadn’t. I was wrong. There is currently one tiny lesion in my occipital lobe, measuring in at 1.8mm. There is not too much edema (swelling around the tissue from the fluid in the brain), and it’s showing signs of necrosis.

The only piece of bad news I got from these test results today is that I have a stone in my gall bladder, which is why I have been feeling slight pain/pressure there at times. Dr. Rubio, Sr. said that I will likely need an emergency surgery to have that removed at some point, so I need to pay attention to that from here on out.

Are you crying yet? … because I certainly am.

(19-02-18) General Updates

TESTS

Tomorrow morning, Dr. Godinez is taking me to the local hospital to get an MRI and a CT scan. Dr. Rubio, Sr. said it’s a little early to be looking at tests, but he does want to show me whether my tumor sizes are reducing. We know from the TNF levels that the amount of tumor activity is decreasing, but tumor sizes is another way to show progress (plus, I think that results from those kinds of tests are in a language that more people [like American doctors] can relate to).

EATING

Eating has become a problem. Two things are contributing to this. First, I am getting so pumped up with liquids for 8-16 hours a day that my stomach always feels full. Secondly, the only time I ever go #2 here is when they give me weekly enemas or when I’m having side effects from chemo. So, everytime I eat, my stomach feels like it’s about to explode, yet no relief comes. Today, for example, I skipped breakfast AND lunch. The only thing I ate before dinner was a handful of almonds and six spoonfuls of prune yogurt. 5:00 was my first meal – boiled vegetables, brown rice, half an avocado, salad, and cuachalate tea – and now I am rocking myself back and forth in fetal position because my stomach hurts so much. I’m thinking about fasting for a couple of days to see if that helps. Probably not because as soon as I put another meal in my belly it’s just going to cause pain again. I have been feeling like a beached whale for the last 2+ weeks now, though, and I need a solution that goes beyond weekly enemas.

VACCINES

I will now get the second electromagnetic vaccine on Wednesday. In the meantime, Dr. Rubio, Sr. is upping the dose of the other vaccines by 1,000 CC’s. Now that my body has been routinely introduced to them, it’s time to step up the battle. He warned me that I will get flu-like symptoms this week/weekend.

BLOOD & SHOTS

They started giving me shots to up my white blood cell activity. Also, my hemoglobin level is a little low – nothing too serious, just at a 10 when a normal level would be 12. Dr. Rubio, Sr. didn’t seem worried.

(19-09-18) Times in Tijuana

It’s 6:07am, and the driver just came to pick up Estela. An unexpected perk of being here at the clinic is that I have gotten to spend some extra quality time with some friends from various parts of my past – Dinah Shore ex-girlfriends, old teaching comrades, coworker-buddies, and (in Estela’s case) college friends. These visits have allowed me to remember pieces of myself that I had long stopped consciously thinking about. It’s actually been an interesting part of my reflection periods while I have been here, to have old pieces of Tarah come popping back into the spotlight, to remind me of who I am today compared to whom I used to be 3, 6, 11, 14, and 20 years ago.

I had two poignant memories from this weekend that I wanted to share.

The first was dinner on Saturday. From the moment Estela arrived, she was talking about getting tacos. We asked the staff here for a recommendation, and the next thing we knew, Dr. Godinez was driving us to a taqueria 25 minutes away. We were just going to take a cab, but he insisted. He became our tour guide, pointing out features of the old Tijuana compared to the urbanizing new developments happening and sharing tidbits of information about the city’s history. He then dropped us off to eat and came back for us half an hour later, after our bellies were stuffed with tacos, gorditas, and horchata. What doctor does something like that for his patients? A doctor at Rubio Cancer Center, that’s who.

The second was lunchtime on Sunday. An old teaching colleague drove down to spend a few hours with me. I always get a little nervous, blending different parts of my world together… But I don’t know why I was even concerned. The beautiful, genuine souls of both Estela and Julieanne instantly vibed with one another, and we spent the afternoon talking about politics, relationships, fond memories, and personal goals. They even made friends with a sculptor/soccer coach/business owner when Estela took me to a barber shop to address the burgeoning mullet that was sprouting in the back of my head. Sometimes I feel like a broken record on this blog, but I really do have the most amazing group of friends. I fully recognize many people in this world are not as blessed with such an extensive collection of pure spirits who make conscious decisions based on love, compassion, and collective consciousness. Sitting back for an afternoon and watching that, yet again, unfold in front of me filled me with a degree of pride and gratitude that I can’t even fully describe with mere words.

Poor Estela did have to rough it a little with me this weekend, though. Tijuana was not ready for all the rain that hit it, unfortunately; a number of water and sewer leaks occurred from the multiple storms, causing parts of the entire city to lose access to running water. Our toilets still flush, but we haven’t had sink, shower, or laundry water since Saturday morning. (The water officially turned off right in the middle of my shower, actually!) It’s about to get real funky in the common areas. I don’t think Amish and Mennonite clothing use the most breathable fabrics… Plus, we are encouraged here to use lime or lemon only as a natural deodorant so that we’re not adding toxins into our bodies at the same time that they’re trying to detox us. Yup, aside from my morning walk, I’ll be hiding in my room until Tijuana can get this water situation back on track.

(19-02-17) Exhaustion, Then Insomnia

Well, Estela escaped the wrath of bathroom side effects because I had none of that. It’s so interesting how my body continues to respond differently every day to all these treatments. I didn’t get sick at all yet. What did happen these past two days was a series of intense bouts of sleepiness, where, mid-day, I couldn’t keep my eyes open mid-day conversation. This was very weird for me because I do not/cannot take naps normally… But I took three yesterday, and two today, and then I never went to bed last night. Instead, I stayed up all night playing games on my phone and telling Botas that he is safe and loved as he snuggled in the crook of my arm and twitched from dreams.

(19-02-16) Starting Trends

When I first arrived, I committed a gaffe by using someone’s condiment in the kitchen. It didn’t occur to me that not all of the food items were provided by the clinic and thus available to everyone, and nothing on the shelves or in the refrigerator was marked to suggest that certain items belonged to individual people.

Once I realized my mistake, I went to the grocery store and bought myself a few staple items: peanut butter, hot sauces, nuts, and Tahin. Upon returning to the clinic, I marked every item with “por todo / for everyone.”

Imagine my delight this morning when I went downstairs to get some cuachalate tea and saw this on three bottles of sugar-free jam:

(19-02-16) The Cat’s Out of the Bag

Well, I made it to yesterday, but everyone now knows about Botas. Between the daily cleaning lady; half a dozen nurses coming in all day and night to do drip bags, enemas, cabbage therapy, ozone treatment, vitals, and med deliveries; doctor drop-ins; and Dr. Rubio, Sr.’s habit of never knocking before coming in, hiding that kitten was just becoming impossible.

And guess what? They’re letting me keep him in my room while I am here. I was all prepared with fact sheets about the benefits of pet therapy in hospital settings, but I didn’t even need to argue my case. How cool is that??

(19-02-15) Symptom & Treatment Update

CHEMOTHERAPY

* I started another four-day round of chemo last night. From Thursday to Sunday, I will have a different chemo drug each night (based on the four drugs that my blood tested positive for my first week here).

* Bathroom symptoms have already started, after just one round. Poor Estela … not gonna be fun for her, sharing a room with me this weekend. Guess we’ll find out just how deeply our friendship bond can withstand hours of vomiting and shitting!

VACCINES

* This week, I continued to get the two generic vaccines (DK-25 and DK-27), as well as the specialty dendritic vaccine.

* I will get another round of the electromagnetic vaccine on Monday.

ENEMA

* I had another one yesterday. This time, it was straight up coffee – no shark cartilage or shitake mushrooms included. This third one wasn’t as bad; I guess my body is adjusting. It’s not something I am currently willing to do as part of my home program once I leave here, but I stopped putting up a fight to get them during my stay, on an as-needed, once-a-week basis.

OXYGEN SHOTS

* On Wednesday, I got oxygen shots in both my knees, as well as my lower back. Two days later, there is no pain or tightness in any of those spots. I still can’t believe a remedy as simple as this is not being utilized in the States.

* I also got an oxygen shot yesterday in my right hip. My hip seems to be fine at this point, from the replacement surgery back in December. I can’t jog or anything yet (not that I’d want to!), but all my other basic functions – walking, crouching, kneeling, lunging – have returned to a normal state. Maybe I *will* get to crush Tyler again on the racquetball court after all!

BREAST BLISTER

(warning: ugly picture below)

* That blister that showed up on my right breast on Monday is being addressed. Dr. Rubio, Sr. lanced it on Monday and again yesterday.

* Dr. Rubio, Sr. said the blister was probably caused by a number of factors: being out in the sun for an hour and a half, responding to the magnet vaccine, and possibly getting burned from the cabbage therapy. The thing with the cabbage makes sense. There isn’t a lot of sensation in the breast area now after all those surgeries, so if the cabbage was too hot on that part of my skin, I might not have noticed.

* I am using an oxygen treatment in my room 2-3 times a day to help it heal. According to Dr. Rubio, Sr., oxygen is just as good as an antibiotic for the healing process – just without the side effects of a drug.

* Looking at it is gross. When I think about all the trauma my chest has endured just to try to look “normal” with breasts, my heart hurts a little.

(19-02-14) To My First Valentine

Dear Daddy,

Growing up, I had quite the rollercoaster relationship with you. As a baby, I wouldn’t sleep unless you were there. My mom would be dealing with my insomnia for days, ready to pull her own hair out of her skull, and then you would just show up, put me in your arms, and I would pass out immediately.

You were the first man I ever loved and trusted.

As I grew older, our relationship got more tricky. There was so much “butting heads” between us. I didn’t realize at the time that it was because you and I were cut from the same cloth: fiercely independent, headstrong, smarter than most of the people around us, stubborn, calculating, manipulative when we had to be, secretive, opinionated. Our similarities drove a wedge between us that took almost two decades to close. We lost a lot of time, and there were certain things I had trouble letting go of – like the violence in the household, the drinking, the financial decisions you often made that none of us (me, mom, or Russell) could ever understand.

But I get it now. I see things in a very different light, and I now understand what kind of man you decided to be in order to try to do right by your family.

And this world needs more dads like you.

I was having a discussion about you with a friend this morning, and I want to pass along our text conversation.

(him) On many things, he’s my kinda dude. I love hearing you talk about him. Having a daughter, it’s really cool for me to watch.

He makes me really want to get my money right in a big way, so if my daughter (or son) needs something, I can make that happen for them. That kind of preparation for the unforeseen is the dopest dad shit ever. I never had an inch of that kind of support or net. He’s upped my dad goals. Straight up.

(me) Yeah, my dad is one of the most frugal people I have ever known, and it was always such a source of contention growing up. And now, decades later, that frugality is paying the way to save my life.

So fucking dope! That kind of vision. Often we plan and make decisions folks around us don’t understand and get crap for it just to be right way later. It’s like, to be a true hero, we have to survive being the villain in people’s eyes first. That’s leadership. Leaders see what’s needed before everyone else. By the time they catch up and see what the leader sees, it would be too late to act. So when the leader acts and no one sees it, they think he’s tripping. That can be lonely and a little painful, so many opt out and aren’t strong enough to do it anyway. They give in to the sway of the people. Your dad didn’t, for years. That type of strength is uncommon and amazing. I’m blown away and definitely need to step up.

Daddy, not only are you helping to save my life right now, but you are also inspiring men you have never even met to become even greater father versions of themselves.

I am in awe of you.

Love,

your golden child

(19-02-13) Self-Talk Playlist

Friends and Family,

I need your help.

I have this Self-talk: It Works playlist on Spotify … and while it’s by far my favorite playlist, I have been listening to it every day while receiving treatment here, so I’m playing out the songs.

That’s where you come in.

Please review my playlist and see if you can provide any additional songs that fit into the category of “self-talk.” In other words, I’m looking for songs that send positive, feel-good messages to the soul. You can just post your suggestions in the comments section, and I promise to consider each and every suggestion. I’ll even let you know which ones end up being my favorite suggestions.

Love,

Tarah

(19-02-13) Stem Cells

Earlier this week, Dr. Godinez broke down some information about the stem cells that I’m getting. I found it rather fascinating, but in the midst of vaccine side effects, cat smuggling, and a friend visiting, I never got around to sharing what he told me.

When they take my blood, the lab is able to isolate different components in that blood: hemoglobins, erythrocytes, plasma, lymphocytes, neutrophils, and platelets. This is important because different blood components are responsible for doing different things in the body – like fighting infections (white blood cells), transporting hormones (plasma), or carrying oxygen out of the lungs and into the body (hemoglobins), to name a few. So, depending on what I need on a particular day or with a particular vaccine, the lab will isolate that blood component. From there, they incubate and feed it for days (up to 8), where it replicates itself … so basically it’s growing in both size and strength. After the incubation period, these stem cells are injected back into my body, where they can then work side by side to battle the cancer cells. Nothing artificial is added to my blood. No chemicals are needed. Just a blood draw, a lab space with suitable technology, and an adequate incubation period gives my human cells super hero powers.

That’s pretty fucking dope.

Blood isn’t even the only way they are using stem cells here. Last week, they came in and did a culture swab of my vagina, and Dr. Smith told me that, in the last couple of years, Dr. Rubio has figured out a way to use cells from a womyn’s cervix to create stem cells for breast cancer. See, the cervix and the breast both contain the same kinds of hormones, and many breast cancers (like mine) tend to latch on to at least one of those hormones (my cancer cells bind to estrogen, which is why it can so easily come back even after I successfully complete treatment… because my body continues to produce estrogen on a regular basis). So, creating stem cells from my cervix provides a heightened opportunity to go in and fight hormone-receptive breast cancer cells.

Does anybody else reading this suddenly want to go back in time and pay more attention in science class? Geeezus.

(19-02-12) Pet Therapy

It was just another morning, with Glenda accompanying me on my pre-breakfast walk around town. We took a different side street this morning in our hunt to find that first cat I encountered more than a week ago (whom I have not seen again since that day). After making this one new turn, we found ourselves staring face to face with a new fuzzy friend.

I sat down on a curb, ready to slowly lure the kitten over with promises of food…but luring clearly wasn’t necessary for the Cat Whisperer over here. Within seconds, he was on my lap and rubbing his face on my body and clothes.

He had white mucus coming out of two red eyes, and his coat was dry and dusty. One of his front paws looked like it was still healing from a recent injury, and I could feel from the bones in his rib cage that he hadn’t had a decent meal in a minute. I pulled out a packet of wet cat food from my bag and spread about a third of it onto a piece of paper; he gulped it down in 15 seconds. I gave him a few minutes to digest that and put some oxygen back into his lungs before feeding him the rest. He purred vigorously while he ate, and afterwards I wiped his face and his booger eyes with a tissue.

“You know, in all my walks here, I have not seen a single veterinarian,” I told Glenda.

Perhaps I just wasn’t looking for that, though, because when I checked Waze (which works in Mexico, by the way!), there was a vet 0.8 miles away. We decided to take the walk.

When we got there, the sign on the door said abierto, but the padlocks indicated no one was there. It was just after 8. I called the number on the door.

“A que hora tu estas abierto?”

“Nueve.” 9:00. It was 8:15. We had already missed breakfast, and my foot bath therapy was scheduled for 9:30. We decided to wait for the vet. I’d deal with the consequences later of missing one treatment; I was in Mommy Mode, and there was an animal to save. We sat down on the curb and took turns playing with the kitten and entertaining an adorable husky in a cast who had clearly found a way to break out of their cage sometime in the middle of the night.

1.5 hours later, I am walking out of the vet with a collared kitten named Botas (Spanish for “boots”), a bag of food and medicines, a bill that cost less than one office visit in the states, and not a clue what I am going to do with him once I get back to the clinic. Waze guides us the 1.3 miles back to Rubio Cancer Center as we devise a plan to smuggle Botas in to the clinic and up to my room.

Cat Whisperer. Cat Burglar. Cat Smuggler. All true.

It is now 8:30pm. My secret is stashed in my bathroom as I wait for the night nurse to come in and take my vitals. Blanca almost blew up my spot an hour ago, when she headed to my bathroom to fill a tube for the oxygen tank with water from the faucet. When I loudly exclaimed, “No, don’t go in there,” she made a joke with her hands indicating I must have just blown up my bathroom; I held back the urge to remind her that I use Poo-Pourri, so my bathroom NEVER smells funky.

I have no idea how long I will successfully keep this secret stashed. What I do know is that pet therapy should be incorporated into this program…cuz the amount of bliss I have felt all day walking this kitten around town, getting some food and meds into his system, playing with him in my room, watching him crawl in my hamper and nap on my sweater from this morning, and hearing his purr in my ear as he rubs against my face has provided me with the only thing I have been missing since I arrived here three weeks ago:

Mommy Love.

(19-02-11) Delayed Reaction

{Warning: boob shot below}

… And here I thought I might not have anything to blog about today.

A BREAKDOWN OF EVENTS

11:00 – I get my third drip bag of the day: a bag of iron. I take a book outside to read by the pool.

12:30 – Adrian comes out to ask me for my credit card so that I can pay my weekly fee. As I hoist myself up off the lounge chair, I feel a weird twinge in both my knees. I shrug it off, although I do notice I struggle a little walking up the stairs to my room.

1:15 – As I am changing out of my clothes and into my ozone therapy suit, I notice a rash has spread across my right breast. I also notice that I am having trouble lifting my legs to get into the suit. Something doesn’t feel quite right in my knees.

1:35 – Lying in bed receiving my ozone treatment, the pain in my knees is starting to intensify. Initially just some tightness, it has now escalated to pulsating and throbbing.

2:10 – Nurse Nahaliel comes in to stop the ozone treatment and prepare me for the cabbage wrapping. As I step down off the bed, jolts of pain rip from my knees, up and down both legs. It brings tears to my eyes.

2:45 – I’m back to lying in bed, submerged under cabbage. At this point, it feels like someone is taking a hammer to both of my knees and going to town. The initial silent tears that were coursing down my cheeks minutes ago have evolved into low groans and sobs. When Mario comes in to deliver a package, I ask him to get Dr. Godinez for me.

2:48 – Dr. Godinez shows up, takes a verbal report of my symptoms, and checks my knees, which are swelling. I show him the rash on my breast as well, which has now started to blister. I am crying through this whole conversation, and I’m starting to shake internally from the pain.

2:50 – Nurses come in with drip bags containing pain medication and an anti-inflammatory. I can barely move my legs at this point. Dr. Godinez lets me know Dr. Rubio, Sr. is on his way.

3:10 – Dr. Rubio, Sr. arrives. He asks me what my pain level is, and I tell him, “8…maybe 9.” He takes one look at my panicked expression and immediately unleashes his exquisite bedside manner, letting me know that all of this is perfectly normal, and he’s about to explain why.

Here is what happened.

Remember that nanomagnetic particle vaccine I got on Friday – the one I was worried didn’t work because I felt no side effects whatsoever from the treatment?

Yeah. It worked all right. And today was the day my cells went to battle.

The iron drip bag I received this morning obviously contains metal in it. The metal from that bag triggered some cell activity from the vaccine, and my healthy cells were spending the day attacking the protein casings surrounding my cancer cells. My cancer cells, realizing they were getting beat the fuck up, were scurrying to retreat to someplace safe: my joints. According to Dr. Rubio, Sr., cancer cells commonly retreat to four places to hide and/or die: the liver, the kidneys, the joints, and the bones. That’s why my knees suddenly felt like they were being smashed to pieces; I had a bunch of injured cancer cells rushing in and overcrowding the area, and the metals attached to them were spinning wildly and out of control. Now, they were stuck, and my body needed to figure out a way to flush them out of my system. Nurses returned to the room with more drip bags (containing electrolytes, among other things) to help with this process. Additional pain medication was also administered in 20-minute increments, ice was placed on both knees, an oxygen breathing tube was put inside my nostrils, and Dr. Rubio, Sr. told me to relax and breathe for the next hour in darkness. In an hour, he said, my pain will be gone.

It took about an hour and a half, but eventually the pain subsided to a 2. I felt the pain head to other joints in my body – particularly my elbows, where I can still feel it now at 5:50pm. But I can now stand up and walk around again without wanting to buckle and fall to the ground.

And now I know that the nanomagnetic particle vaccine worked…

…and what to expect later this week when I get the vaccine again: mind-crushing pain to remind me this war is still very much in full effect.

(19-02-10) How Am I?

Friends and Family,

PLEASE stop asking me how I am doing or how I am feeling. I recognize it may be an easy way for you to reach out and let me know you’re thinking of me or trying to be supportive. However, it’s overwhelming and redundant – overwhelming because I get about a dozen of those messages every day via text, email, Messenger, and Instagram; and redundant because I post at least one blog every single day giving you the answers to those very questions.

Also, with the exception of Kyana, my dad, my roommate, and my significant other, I will no longer be answering phone calls. Reception is spotty here in Tijuana, and most of my calls are just wasted minutes of people not being able to hear each other. Also, my schedule here is pretty regimented with treatments and visits with doctors, and I don’t like any of that getting interrupted by phone use. If you have a pressing matter, please reach out to Kyana.

Thank you for understanding…or at least appeasing me for another 3-5 weeks.

With Respect,

Tarah

(19-02-10) Sunday Funday

“Everyone needs a cheat day.”

Usually, I am the bad influence on others, but today I was merely a pawn in Glenda’s plan to get me to eat ice cream and spend money. Shame on her, right?

Just kidding. Today was delightful.

From almost getting hit by a rock in an intersection as an angry taxi driver jumped out of his vehicle to unleash vengeance on a truck that cut him off …

… to peeing my pants a little in the grocery store when some muscle men came bounding in with huge guns

(It turns out they were just emptying the ATM machine) …

… to making a new fuzzy friend as I stop to marvel at yet another beautifully colored and decorated home …

… to finding the hole-in-the-wall ice cream parlor on some random side street …

… to realizing I got cheated in the ice cream department for getting my scoops in cones instead of a cup, and then – being envious that Glenda still had ice cream left twenty minutes later – dipping into another ice cream shop to rectify the situation …

… to scoring a SWEET DEAL at the local swap meet on two pairs of shoes that will make a certain someone pretty darn happy …

… to having some insightful discussions about the politics of cancer while joint reading this incredible book, Breaking the Cancer Code (Amazon.com, people – trust my recommendation on this one, if you are a reader and at all interested in learning real truths about this disease and how to get cured) …

… Today was a good day.

(19-02-10) Weekly Reflection

As my third week here draws to a close, I find how easily I have settled into my new routine here. Morning walk around the city (today we walked for almost an hour and a half! Damn, was my right leg sore after that.). Breakfast and morning meds. Chelation. Electrolytes. Reading outside in the sun, or sitting in the massage chair in the common room, or turning water black with my toxin-ass feet. Lunch. Ozone. Cabbage. More bags. Dinner. More reading, perhaps journaling. Asleep by 10. Up before 3. Rinse and repeat.

Three to five more weeks to go of this, and then I return to a world that I was told I would soon not be a part of.

It still blows my mind, this extra chance at life I’ve been given – a chance that would not have been plausible without the Internet giving me knowledge on alternative treatment, without HB giving me the contact information of someone who successfully received treatment here five years ago, and without my dad finding multiple ways to make sure this trip continues to be funded. I am so filled with gratitude today that my heart feels like it’s swelling out of my chest.

Tomorrow my blood will be drawn again to see if the magnet vaccine had a significant impact on my TNF levels. I’m a little concerned it didn’t, solely because I really experienced no side effects from the vaccine. I felt nothing during the hour the magnets were attached to my body, and other than getting a little clammy sweaty Friday night, I felt nothing in the aftermath, either. I didn’t get sick at all this weekend, like I did last weekend from the dendritic vaccine. When I got sick last weekend, the doctors said that meant the vaccine was doing its job…so does that mean that a lack of sickness shows the vaccine didn’t do what it was supposed to? I guess we’ll find out when we get my levels on Wednesday.

(19-02-09) City Walks

I had the pleasure of taking Glenda on two walks around the city since she first arrived yesterday. Wearing a hat and my coat, she braved the 48° at 7am and allowed me to flitter up and down overpasses, inside urine-smelling tunnels, and alongside side streets with possible drug cartel houses. She even acquiesced to my intent goal of finding my feline friend from last week, even though I have been back to that street three times now and have yet to see her again.

Luckily, I found a new gato to love on and feed this morning.

(19-02-09) My Immune System

An old college friend noticed from the blog that I’ve had visitors here, and he raised a good question that some of you might also have wondered:

“…you can be around other people – you don’t have any chance of catching a cold or bug from other people?”

That question makes sense if you’ve ever been around someone going through cancer treatment in the United States. Chemotherapy wreaks so much havoc on your immune system that there are periods of time when self-isolation in a heavily sanitized room is the only thing keeping you out of the hospital. I remember one time my white blood cell count dipped below 1.0, and I couldn’t go to treatment, work, the store, or any place involving other people and their germs.

Here, though, they use immunotherapy, which means they supercharge my immune system with vitamins, nutrients, and stem cells to make it stronger in battle. I feel completely healthy here. I am able to get by on 4-5 hours of sleep each night, without ever feeling groggy the next day. I take hour-long power walks every morning around the city. My body doesn’t ache when I get up in the morning, and I haven’t been bogged down with any cold symptoms like I used to get during chemo. I mean, aside from this pesky little burden of metastatic breast cancer throwing tumors out all over my body, I’m kind of a pinnacle of health right now. This is what we *should* be doing to our bodies, when we have to wage war against cancer cells that show up to battle. Unfortunately, the United States just doesn’t see the benefit in making us a healthier nation – not when there is so much money to be made in keeping us all sick.

(19-02-08) Vaccines & Stem Cells

Exactly one month ago, I sat across from Dr. Curley as he delivered my death sentence: 6-12 months to live. What a mindfuck to think about that now, here, as I feel myself not weak, but stronger; not sickly, but energized; not hopeless, but motivated.

I had the magnetic vaccine today. Nurse Blanca first hooked me up to a drip bag that contained magnetic nanoparticles in it. Then, Drs. Rubio, Sr and Godinez taped magnetic strips to the outside of my body, where there are known tumors: my lungs, my liver, my bones around my hips and pelvis, and my lower back.

It was a little anticlimactic, honestly – I didn’t experience any of those crazy hot flashes during the session, and I was able to last the whole hour without incident. Doctor Godinez came in every 20 minutes on the dot to check my vitals, which I found curious. I’m guessing some people have had serious reactions to this? Not me, though… ‘cuz I’m a warrior. My body handled the session like a boss.

Side note: I discovered another way they use stem cells here. Last night, Dr. Smith came in my room and took a culture swab of my vagina. Today, Dr. Rubio, Sr. explained that he creates stem cells that come from those cultures in my cervix because that area has the same kind of hormones as my breasts. All of this just continues to boggle my mind.

(19-02-07) Basic Updates

Not a lot of news today. It’s kind of the calm before the storm, I think. The doctors eased up on some of my drip bags these past few days; I think they’re trying to let my side effects settle more before dosing me up with two vaccines tomorrow.

My foot bath water was orange today, instead of black or brown. That means my joints were getting detoxed instead of my liver. (Sorry, Tyler – no pictures today. I’ll try to remember to bring my camera so that I can feed your foot fetish with photos next week.)

Stomach still hurts. A lot.

I haven’t seen Dr. Rubio, Sr. all week; he’s been at a conference. The other doctors here continue to be very attentive, though.

I’ve decided I need to plant plenty of cabbage in my garden this year. When I leave here, they will send me with a home program, to continue some of the treatments I am getting here … and considering they use 1.5 cabbages on my body every day, I’m going to need a steady supply. Fellow gardening friends in Phoenix, any tips for how to NOT kill my cabbage in my garden this year would be extremely helpful; I have not had the most stellar track record with gardening these past five years….

I found a morning walk route that will help get some tone back in my leg muscles. That was pretty much the highlight of my day.

(19-02-06) TNF Numbers

Every Monday, my blood gets drawn. They use that blood for multiple purposes: to mix with the vaccines, to test for sensitivity to medications, to create stem cells that get placed back into my body, and to monitor my TNF number. My TNF number is essentially how many of the cancer cells in my body are active right now, which I know I mentioned in a previous blog. TNF numbers take 1-2 days to get after the blood is drawn because it involves them incubating the blood, casting some scientific mojo on those cells, observing their activity under a microscope, and then analyzing the results. We then get our updated TNF numbers on Wednesdays.

1/23: TNF = 88%

1/30: TNF = 84%

2/06: TNF = 78%

… We’re getting there, loved ones.

THIS TREATMENT IS WORKING.

(19-02-05) Shout-Outs

For now, at least, the worst of the side effects from the vaccine and chemo seem to have dissipated. My stomach feels like someone punched me repeatedly and extensively, leaving some clear internal damage, but this is a step in a better direction, compared to what I experienced over the weekend. I have a few days’ reprieve from both those medications, and on Friday, Dr. Rubio, Sr. will introduce me to a second type of cancer vaccine – the one involving magnets and nanoparticles. He told me yesterday that he will administer that vaccine in 20-minute increments. If, after 20 minutes, I can handle the heat, he’ll do another round…then another… then another…up to two hours, if I can tolerate parts of my body heating up 50° for that long.

Bring on the heat, Dr. Rubio. I live in Phoenix.

*** *** ***

As you know, this weekend was rough. I was quite sick and regressing to a childlike state where I just wanted love and physical comfort, not broken Spanish conversations, solitary rainstorms in Mexico, and only a stuffed animal to hug. I cried a lot this weekend – both from the pain and from the frustration of being alone when I didn’t want to be. But you, my loved ones, refuse to let me think for even a day that I am in this alone. And now I am dealing with a whole new set of tears falling, as I remember you – my village – coming together the last time I went through treatment and finding any and every way you could to support me. THANK YOU. You are making this experience endurable yet again.

One of the mistakes I made the last time I went through treatment was not keeping up with all my personalized thank you’s. I had people donating leave time and GoFundMe money, taking me places, sending me cards and gifts, and helping me get insider information so that I could fight some evil people inside a corrupted state system. I failed to stay on top of personally thanking people – especially during periods of extreme sickness or despair – and I don’t want to make that same mistake this time. Someone recently RE-taught me the importance of verbally expressing my gratitudes. Granted, usually I am holding up a shot of tequila while stating what I’m grateful for, but let’s improvise (or, feel free to take a shot if your name pops up).

Dad – This starts with you. You funded this trip immediately. Had I waited until I closed all my retirement accounts, it could have delayed my trip by 3-4 more weeks. With cancer this advanced, that extra month of waiting could truly have been the difference between life and death for me. You handled business efficiently (like always!), and this probably saved my life.

Ms. Bowers, mom-mom, Kyana, Charmaine, and Carol – Thank you for the cards. They proudly line up on my eating tray in my room, so I reread them every time I take meals in my room.

Charmaine – Thank you for sending me dried mango and homemade tea. Those packages of mangoes were inhaled within a matter of hours.

Kyana – Thank you for being semi-willing to send me some of those potato chips you know I love. Thank you also for being my rock – both during your trip out to Phoenix to escort me to Tijuana and when it comes to communicating with my friends/family when I am too overwhelmed or focused on healing. I don’t know if I would have been able to hold it together like you did had our roles been reversed. You are, hands down, the best person to come into my life, and my relationship with you for the past 16+ years has continually helped elevate me as a human being.

HB – Thanks for making me a priority and visiting me that first weekend I was here so that I didn’t have to be alone. Even in my lame attempt at stoicism, you knew I needed someone here for me, and you made it happen.

Amanda – Thanks for setting up a GoFundMe account, to ensure that I have money if my treatment lasts longer than expected and that I still have a house to go back to WHEN I beat this.

Pietrini and Glenda – Thank you for both reaching out to people and coordinating donated leave time at work so that I am getting at least partial paychecks while I am out on FMLA.

Jenna – Thank you for holding down the fort at home. One of my biggest stressors when deciding to do this was knowing whether my pets would be sufficiently cared for. You’ve been on top of that, though: ordering my picky array of cat food online, walking Wishbone daily, taking Athena to the vet, intercepting birds from Kiki’s murder mouth, and doing your part to make sure they don’t all kill each other.

Glenda and Sacha – Thank you both in advance for coming to see me later this week. I’ve only been here alone for a week and a half, but it’s having an impact on my psyche.

Sacha – Thank you for getting me healthy ginger-ale and cruelty-free lotion. I had been unsuccessful in finding either of these on my daily walks around Tijuana. Plus, it’s been a torrential downpour for the last five days, so I couldn’t venture out even if I wanted. You’re helping both my aching stomach and my ashy skin.

Tyler – Thanks for checking on my pets and giving them an extra dose of attention in my absence. Thank you also for getting my garden gutted so that I can start planting cancer-fighting foods upon my return. (I’m NOT going to kill my garden again this year, dammit! It’s sixth’s time a charm…right?)

Aaand a special shout out to a person who should win an award for sending care packages:

Michelle.

Michelle, the items in your box had me laughing AND crying. Everything in there is functional and personalized, and it was an eclectic blend of things that will educate me, entertain me, feed my tummy, feed my soul, address my vanity, and keep me warm throughout it all. You know me way better than I realized you do.

(19-02-04) Breathing Through It

For the past three days, I have refused some of my treatments here. Between being hooked up to multiple drip bags constantly for the past 60 hours and being so bound by side effects, I was in no state to be dealing with cabbage body wraps, ozone therapy, or nebulizer sessions. My only priorities were rocking myself in fetal position as much as possible and making sure I could get to the bathroom in time before shitting or puking on myself.

Carolyn came to visit me today. I haven’t seen her since the day she and the driver first brought me to the clinic. She spent almost two hours with me, finding ways our cancer experiences mirror each other’s and searching to see how she could make my journey here more meaningful.

“How do you breathe?” she asked me at one point.

As a singer, I thought I knew the answer to her question. “Through my diaphragm. In through the nose, out through the mouth.”

“Will you breathe with me?”

I knew three things in that moment.

(1) She was about to take me through a mindfulness exercise.

(2) I didn’t want to do it.

(3) I was gonna do it anyway.

It’s not like I don’t recognize the importance of activities like these. I do. But I am also one of those people who tend to find these kinds of activities a little too hokey for me. This is my ego speaking; I know that. I think I am strong and insightful and enlightened enough to just automatically center myself without having to take extra time out of my day to engage in things like breathing exercises. But that’s ridiculous. Sometimes we have to actively put things in the forefront of our consciousness in order to pay closer attention to them. Sometimes we miss things because we spend too much of our time running on autopilot. So no, Carolyn, I don’t want to spend five minutes breathing with you… But I’m gonna do it anyway.

Through the deep breaths, she helped me take my oxygen to different parts of my body, particularly the parts that are working overtime to handle these vaccine and chemo meds: the stomach, the liver, the gall bladder. She kept reminding me to oxygenate my parasympathetic nervous system, my hips, my bones. At one point, she told me to start thinking of colors coming into my body with the oxygen, and I told her I could already see the colors with the breaths; they were light blue and pastel purple. I pushed the swirling colors all around the organs, the bones, the battlefield, the two armies fighting one another on that battlefield.

Did it make my pain go away? Of course not. But it did leave me feeling a little more open in my core, a little less restricted. And it was definitely calming. I agreed to do it again tonight when I get injected with another round of the dendritic vaccine.

Aaaaand… Right on cue. Blanca is here with my vaccine now.

(19-02-03) Conversations From the Day

I got praised and admonished in the span of an hour.

Dr. Godinez lectured me for skipping meals and not drinking water. I don’t know how they expect me to do either of these things. I have pains in three different areas of my stomach, so the last thing I want to be doing is putting MORE things in that space. And when I am getting intravenous fluids for 10-13 hours a day (19 hours yesterday), who has room for water??

But then, out of the blue, I got this really sweet note on my public Facebook profile from an old co-worker:

I won’t front; I cried a little. Teaching is such an interesting profession, the way it has ripple effects down the road that most teachers never even find out about. I am grateful to have gotten a glimpse of one of those ripple effects today.

(19-02-03) – Explaining the Pain

Yesterday was awful, and when I woke up at 12:15 this morning with shooting pains in my stomach, I thought today would be a repeat. It hasn’t been nearly as intense today as it was yesterday, but I am still mostly lying around in bed, rocking myself while in fetal position and reminding myself that my skin will break out if I don’t stop crying. Dr. Godinez said I should have about four more days of this pain. Anything past that will require me getting taken to a hospital in San Diego for an ultrasound.

According to Dr. Godinez, a combination of factors is causing the intense pain in my stomach. The smaller issue is that having enemas twice in one week likely caused inflammation in my intestines, which is why I was getting such intense pain in my lower stomach, below my belly button. For now, we’re going to hold off on doing any more of those, and I will walk to the grocery store in a couple days to try to find foods with more fiber. They also said they could give me pills to keep everything regular, but I prefer to use food, not technology, to handle this process.

The sharp pain underneath my right rib cage is a direct result of both the vaccine and chemotherapy. While smaller meds typically get broken down in the kidneys before the body disperses and eliminates them, larger meds (like chemo drugs) get broken down in the liver. The liver produces this orange-yellow substance called bilirubin, to help digest things like greasy foods (or, in my case right now, chemo drugs), and the gall bladder is the container that kind of houses all this stuff during the process. As both the vaccine and chemotherapy do their thing in my body, my liver and gall bladder are getting a pretty active workout, and that’s why they’re both screaming in pain right about now. It’s all part of the detoxification process.

Side note: Dr. G assured me that this pain I feel is NOT the result of all the tequila I consume on a regular basis. That helped me feel a little better about myself. 😉

Other side note: One of the Mennonite moms stopped me this morning just outside the laundry room to ask me if I was feeling better today.

“Better,” I said, “but not good.”

“Well, you didn’t look good AT ALL yesterday.”

Bitch, don’t you think I know that already?

Of course, I kept this last comment to myself and chalked it up to inferior Mennonite social skills…but I’ll be spending these next few days isolating in my room until I’m ready to go back out there in shorts and a tank top, just to antagonize them. 🤭

(19-02-02) Bedside Manner

I’ll spare you the details of the last 13.5 hours of my life because they are disgusting. Suffice it to say that my body is definitely responding to this vaccine. I can only hope that all this pain I feel is conveying the battlefield inside my body as my healthy cells continue to grow super-arms and wage war against the cancer cells.

At one point, Nurse Blanca was in here, trying to hook up a bag of stomach medication into my IV. A sudden cramp hit me so intensely that I grabbed onto the IV pole to stop from doubling over. Then, I just started crying…and to my absolute shock, Blanca moved in and gave me a tight hug. I felt like we stood there for a solid minute, her hugging me and me snotting all over her scrubs while she said soothing words and rubbed my head. When I finally pulled away, I thanked her, and she smiled.

That would have NEVER happened in a hospital in the United States.

(19-02-01) Highs and Lows of the Day

Fifth day in a row that I took a morning walk around Tijuana before breakfast. I’ve started taking different streets each day to see if I can find my way back, and I’m proud to declare that I haven’t gotten lost once. This, for anyone who knows me, is monumental.

HIGH #1
While walking down into a tunnel, I noticed a little boy standing on the steps, gripping the bar and not moving. As I passed him, I saw tears in his eyes. “What’s wrong?” I asked him, before quickly switching to, “Que paso?” No answer. “Donde esta tus padres?” Reluctantly, he pointed to a woman in the distance, who was beckoning for him to come down to her. He seemed scared to move. “Are you okay?” He made a sound, indicating he didn’t understand me. “Es tu madre?” He nodded. “Dame tu mano,” I said, which I HOPED was “Give me your hand,” and I reached my hand out for him to take. He looked up at me, and I said, “It’s okay.” He couldn’t have understood that phrase either, but he put his little hand in mine, and I walked him down the stairs the twenty or so feet to his mother. “Lo siento,” she said, to which I replied, “No problema.” I smiled at the boy, said “Adios” to both of them, and continued on my walk.

It was my most successful conversation in Spanish yet, and that probably includes the six years of it I took from 8th grade to college. Sad, but true.

HIGH #2
Later during my walk, I turned down a side street to look for colorful houses or some hole-in-the-wall restaurant that I can visit on a day when I just can’t take this food anymore. A man yelled at me for trying to take a picture of his house, so I scurried along and saw a cat licking water drops off a car. It’s the first cat I’ve seen since I arrived. Dogs are everywhere, and always unleashed – even when they’re walking with their owners. That probably explains the scarcity of cats. So when I saw this one, I got unnecessarily excited. One of the biggest drawbacks to being here is missing out on all the snuggle time with my four pets back home … so I took a chance and approached the cat, and wouldn’t you know it? She was clearly feeling just as lonely as me.

LOW #1
Today was enema day. Honestly, it wasn’t quite as physically uncomfortable as the first time, but it was mentally just as bad – especially because one of the nurses here, Blanca, has never given an enema, so Nurse Becky brought her in to watch and assist. I mean, I have some exhibitionist tendencies, but this isn’t really what I had in mind….

LOW #2
Hot flashes began today, and I’m having some abrupt mood swings. I think I might be starting to feel some of the side effects to the vaccine and/or chemotherapy and/or stem cells. I keep reminding myself that this is NOTHING compared to what I would be feeling at home in the states, undergoing intense chemotherapy. Self-talk helps, to a point. Twice today, I found myself on the verge of tears, and both times, a nurse came in my room to check on my drip bags. Even with my own room, there’s not a lot of privacy here. I’m still adjusting to that.

Looking forward to the Swap Meet tomorrow. I need a change of scenery.

(19-01-31) Science Stuff That I Don’t Understand

Okay, standardized test scores have shown me my whole life that I excel in math first, then writing; am significantly above average in reading; and am abysmal in science. I’m talking in the 30-35% range – meaning 65-70% of students my age all around the country would test better than me in that subject. Consistently. Of course, early scores like that didn’t exactly boost my confidence, so I spent the majority of my school years devising elaborate cheating systems, kissing up to teachers, and finding easier science courses in an effort not to let grades in science classes drag down my GPA. Now, that’s all gonna haunt me as I try to break down the science behind these 2-3 cancer vaccines that are being used on me here.

CANCER VACCINE #1 – DENDRITIC

(which I got for the first time on Monday)

Yesterday, I actually got to see my own blood cells under a microscope. This is what they looked like, and Dr. Rubio, Sr. confirmed that the round ones were the cancer cells, and the long skinny ones were my healthy cells. When I saw them under the microscope, they were all just kind of hanging out together. This, of course, isn’t normal. Typically, my healthy cells should be moving around, looking for bacteria and other unhealthy things to attack, in order to keep my body healthy. However, because of this protein casing that surrounds the cancer cells, my own cells don’t even realize that they’re there. The cancer cells basically have an invisible cloak that hides them and allows them to move freely about my body. We all have cancer cells in our bodies; the only difference between me and you is that my cancer cells have been activated. When Dr. Rubio, Sr. took my blood the first day I was here, he discovered that 88% of all the cancer cells in my body are active right now. That’s a lot.

What this first vaccine does is go in and poke holes inside the protein casings. Holes then make the cancer cells visible to my healthy cells, and now my healthy cells know there is work to be done. My healthy cells then develop these long finger-looking strands (called dendrites) that reach into the holes and attack the cancer cells.

CANCER VACCINE #2 – MAGNETIC NANOPARTICLES

(which I will get this Monday)

First, Dr. Rubio, Sr. will attach magnets on the outside of my body, where there is cancer: my back, my hips, possibly my lungs. Then, he will insert this vaccine. This vaccine has magnetic nanoparticles that spin around inside the body so fast, it heats up the area by about 50°. This increased temperature is intolerable to the cancer cells, so they start dying.

CANCER VACCINE #3 – VIRAL TRANSFECTION

This is Dr. Rubio, Sr.’s “back pocket” vaccine that he will only use if my body is not responding adequately to the other vaccine(s). Quite frankly, I’m not ready to share what this one involves because it kind of freaks me out a little. We’ll cross that bridge if we get to it.

* * * * * * * * *

Science nerd friends, how did I do?

(19-01-30) Looking Back

I’ve been up since 3:07. My internal clock has shifted drastically upon my arrival to this cancer clinic. Maybe it’s the sheer volume of all the treatments just wearing out my body at the end of the day. Maybe it’s the drastic reduction (not quite elimination, but I’m working on it) of sugar from my diet, or the fact that I haven’t had any alcohol in a week and a half. Maybe it’s the lack of stress from my job. Likely, it’s a combination of all of those factors, sprinkled with a smidgen of boredom, that has led me to falling asleep each night between 9 and 10 (a solid 2-3 hours earlier than what I am used to) and waking up (refreshed!) between 3 and 4.

I watched some Luke Cage.

I responded to some texts (sorry, Kyana, I am trying to limit that as much as possible).

I checked my Ring doorbell to make sure my roommate, Jenna, has been keeping up with walking the dog (ALMOST every day, still not doing it 30 minutes a day like we agreed on – ahem, ahem).

Then, I started looking through back emails trying to find a contact email for my supplemental cancer insurance. It’s a long shot, but I wonder if they will reimburse me for ANY of this treatment. My dad – my beautiful spirit of a father who has worked multiple jobs his entire life to provide for his children both during his lifetime and when he eventually passes – has loaned me the money to get this treatment so that I didn’t have to close out all my retirement accounts, and we know a teacher’s salary isn’t going to pay back $48-64k anytime soon, so anything will help.

As I was going through old emails, it triggered some memories I had temporarily forgotten about. This led to me spending the next two hours combing through both emails and blogs from over two years ago, reconnecting me with a part of my journey that I had stopped focusing on. When I look back at Cancer Treatment Round I, I think about the surgeries, the toll chemo took on my body, the battle to keep my job, the frustration with the length of the process, and the sheer amount of time I was confined to a bed or a Lazy Boy recliner or a hyperbaric oxygen chamber. If prompted, I can resurrect positive memories from the experience – particularly when it comes to amazing doctors (Dr. Matatov first and foremost, then Dr. Mansfield, Dr. Dhillon, Dr. Curley, Dr. Walsh, and Dr. Gunia) and all the love that flowed my way from friends, coworkers, and strangers all along the way. The majority of my thinking landscape, though, shows a pretty dismal view of all the whole experience.

It really shouldn’t.

I did some AMAZING things when I was battling cancer the first time – things I would not have done otherwise.

  • I ran in Phoenix’s last Susan G. Komen Race for the Cure. I even publicly spoke at that event.
  • I participated in Spark Off Rose, a story-telling event in CA, where I shared my journey of intimacy while dealing with cancer.
  • I helped an ASU honors student with her (videotaped!) thesis project on mindfulness techniques for cancer patients/survivors struggling with insomnia. https://youtu.be/04kYz1kSCaU
  • I was the guest of honor at a Boo-Bees fundraising event in West Hollywood, where – with the help of a unicorn – we raised several hundred dollars to donate to a local cancer organization.
  • I donated over a foot of very well taken care of hair to Locks of Love.
  • My story was the first of several to be featured on a special edition in a hiking/wellness blog.
  • I fought a state government institution and WON. That win resulted in state agencies all across Arizona having to update their employee leave policies, and I directly saw how those changes positively impacted employees going out on medical leave just in this past year.

I had definitely lost sight of the good work that was done during my first struggle. I’ve been focusing on the mindset that this is all a big inconvenience to me just as I was starting to get my life back together … and just typing that statement right there brought on a whole snotty crying fest over here because I KNOW there is so much more to my journey than the “inconvenience.” At my core, I know what kind of person I am. I make a difference in this world. I know I do. I did it before cancer, I did it during cancer, and I did it after cancer.

This time will be no different.

(19-01-29) Pictures From My Morning Walk

Hahaha – This was the first thing I noticed by the walkway.



Either way, i'm not going down there alone before the sun is even up.

I thought this was a subway. Later, other patients told me it was a tunnel. Regardless, I am not going down there alone before the sun even comes up.




I loved the colorful
buildings and businesses…


the beautiful street art…


and all the street vendors setting up shop first thing in the morning.


BAHAHA!!!! – Look at all the options in the grocery store for hot sauce, and then look at my choices for peanut butter.

(19-01-29) Weekly Regimen

It took me an entire week to get my schedule down, but I think I have got it.

MONDAYS, WEDNESDAYS, & FRIDAYS

  • 8:00 – nebulizer
  • 8:20-8:40 – eat breakfast, with freshly squeezed orange juice
  • post-breakfast – morning meds: multivitamin, B17 vitamin, and two anti-cancer drugs (Arimidex and Talidomida)
  • 8:45-10:00 – chelation therapy
  • 10:45-1:45ish – drip bags of amino acids and electrolytes
  • 12:00-12:30 – eat lunch, with cuachalate tea
  • 1:00 – coffee/mushroom/shark cartilage enema
  • 2:00-2:30 – ozone therapy
  • 2:40-3:40 – cabbage therapy
  • post-cabbage – take a shower
  • pre-dinner – daily check-in with Dr. Rubio, Sr.
  • 5:00-6:00 – dinner, with electrolyte tea and/or ozone water
  • 6:00-12ish (Mondays and Wednesdays only) – 3 bags: stem cells, cancer vaccine, and meds (antibiotic, antihistamine, and pain med)
  • 6:00-2:00ish (Fridays only) – 2nd of 4 chemotherapy meds
  • 8:00-8:20 – nebulizer

………………………………………………………….

TUESDAYS

  • 7:45 – blood drawn, to be mixed with cancer vaccine for next week
  • 8:00 – nebulizer
  • 8:20-8:40 – breakfast with freshly squeezed orange juice
  • post-breakfast – take meds
  • 8:45-10:00 – chelation therapy
  • 9:15 – lymphatic foot bath
  • 9:45 – Rife therapy
  • 10:15-3:45ish – drip bags with amino acids, minerals, and electrolytes
  • 12-12:30 – lunch, with cuachalate tea
  • 1:14-1:45 – ozone therapy
  • 1:55-3:00 – cabbage therapy
  • post-cabbage – take a shower
  • pre-dinner – daily check-in with Dr. Rubio, Sr.
  • 5:00-5:45 – eat dinner, with ozone water and/or electrolyte tea
  • 6:00-12ish – 3 bags: stem cells, cancer vaccine, and meds (antibiotic, antihistamine, and pain med)
  • 8:00-8:20 – nebulizer

………………………………………………………..

THURSDAYS

same as Tuesdays, except I get one of my four chemo meds at night

……………………………………………………………

SATURDAYS & SUNDAYS

(basically, no cabbage, foot bath, enema, or Rife therapy treatments; no vaccines; no blood draws; and no daily check-ins with Dr. Rubio, Sr.)

  • 8:00 – nebulizer
  • 8:20-8:40 – eat breakfast, with freshly squeezed orange juice
  • post-breakfast – morning meds
  • 9:00-6:00 – drip bags of chelation therapy, amino acids, minerals, and electrolytes
  • 12:00-12:30 – eat lunch, with cuachalate tea
  • 2:00-2:30 – ozone therapy
  • 5:00-6:00 – dinner, with electrolyte tea and/or ozone water
  • 6:00-12am – chemotherapy
  • 8:00-8:20 – nebulizer

(19-01-29) Not Repeating Yesterday

Yesterday was negative. Today cannot be more of the same.

I fell asleep last night with a cancer vaccine dripping into my line, dreaming of the trip I want to will take in Peru in 2020. I woke up in the middle of the night and cried a little, then talked out loud a little (to myself? to a god[dess]? to the Universe? I’m still figuring that one out). While talking, I framed every one of my statements in a positive manner (e.g. “I want to live,” as opposed to “I don’t want to die,” which fills my eyes with tears and closes up my throat even as I sit here and type it). I watched Ellen and Chris Rock and Amanda Seales to replace the tears with laughter. Then, I fell back asleep

It is now 6:20. This is the third time I have taken up in the middle of the night. Clearly, my mind wants me awake. Normally, I’d ignore her… but I’m listening today, so i checked when the sun rises in Tijuana this morning, and I’m headed out to start my day a very different way than yesterday.

(19-01-28) Coffee Enemas

(Dad, don’t read this.)

Well, THAT was humiliating.

For the record, I see why bulimic people get down with enemas. The results are immediate. I have been bloated and stopped up all week, but after just one treatment I can (vaguely) feel my hip bones again.

Yeah, if I had an eating disorder, I could see this process being the way to go.

But I DON’T have an eating disorder, so this experience was straight up horrible.

First, I had to pull my pants down and lie facedown on my bed, on top of some pee pads. Having my pants pooled around my ankles and my shirt still on reminded me of childhood whippings, which – in hindsight – explains the wave of panic that crossed over my body as I started to lie down. Then, Nurse Becky told me to relax (‘cuz saying that ALWAYS helps) as she shoved a lubricated hose up my asshole. As she pushed the tube in farther, the pressure slowly built – in a way that suggested things should be LEAVING that space, not entering it. Then, when she started flushing the area with the liquid (which includes coffee, shiitake mushrooms, and shark cartilage!), I could feel the pressure continue to expand, this time all along my stomach. It felt like a ridiculously long time; in reality, it probably lasted 30 seconds. She then took the tube out and immediately I felt the liquid start draining out. It felt like I was peeing all over myself, from my butthole. Nurse Becky told me to continue lying there for 5-10 minutes … “but if you feel you have to go [poop], get up and go to the bathroom.”

She could not get out of my room fast enough. The second the door closed, I had those pee pads wrapped around and between my legs, and I raced to the bathroom. Enemas are efficient; I’ll give you that. Still, I’m hoping I can keep these treatments to a MINIMUM; I’ll take the fart smell of boiled cabbage all over my upper body ANY DAY to a womyn flushing out my rectum.

(19-01-28) Grumpy

I know I am supposed to be 100% positive the entire time I am here.

This morning, I am failing.

I’m grumpy because I was up a lot last night, coughing and rubbing my screaming stomach with calculated clockwise motions.

I’m grumpy because I don’t think the food here caters enough to a cancer patient, and it’s DEFINITELY not giving me enough fiber.

I’m grumpy because later today I have to do an enema, and I am REALLY not looking forward to that. In fact, Dr. Rubio Sr told me a week ago that I needed to be doing coffee enemas, and I have purposely NOT brought that up to any of the nurses because the mere thought of it grosses me out. I mean, I can handle a finger in there every once in a while (and once a glow-in-the-dark baby Jesus butt plug, but that’s a whole different story) … but a hose? Up my bum?? Fuck, man.

I’m grumpy because I have to talk about gas and feces with a cute doctor who has twinkle eyes. I would like to officially request that all my doctors going forward are ugly. Ugly and old. But especially ugly.

I’m grumpy because I miss my half dozen pets back home.

I’m grumpy because Hulu doesn’t work here in Mexico.

I’m grumpy because my treatments leave me to have to wait until 3 or 4 in the afternoon to take a shower, which means I walk around half the day with some jacked up bed head, and I didn’t think to bring a hat.

I’m grumpy because most days I am hooked up to bags of chelation, electrolytes, amino acids, and/or chemotherapy for 13 hours at a time. Wheeling around a metal pole every where I go basically means I am confined to the clinic.

I’m grumpy because I don’t have any chocolate in my room, and I know the pharmacy is just a five-minute walk outside, but I am trying to be good.

I’m grumpy because i won’t see my significant other for weeks.

I’m grumpy because I agreed to replace my deodorant with limes (yes, limes), and now I am paranoid about going outside by the pool and inducing a level of funk that could parallel some of these Mennonite lady patients.

I’m grumpy because it has now been four months of me not exercising. I can see the difference, and I can FEEL the difference. I would give a LOT to be able to play a racquetball game right now…or feel my feet start to go numb as I pass the sixth or seventh mile on the elliptical.

I’m grumpy because even though those ozone shots fixed the pain in my knee and right hip, it’s only made me more conscious of the pain in my back, left femur head, and pelvis.

I’m grumpy because every time I try to go into the common room, to use the computer or try out the massage chair, the room is filled with Mennonites who just stare at me.

… It’s only been a week, but I am missing my old life something fierce right now.

(19-01-27) Progress & Side Effects

As my first week here comes to a close, I think about whether I’ve made any progress. Obviously, it’s too soon to tell, but I have noticed some changes. For one thing, that ozone injection got rid of the pain in my right knee and hip! Seriously, why do we in the US automatically give Cortisone shots to people in pain? Why aren’t ozone shots part of the discussion?? Secondly, my energy has been plentiful even though I’m not exercising or ingesting any caffeine. I’ve also felt surprisingly tranquil this whole week. I’ve just been calm and peaceful … and unlike the past two weeks, where I had cried multiple times throughout each day, the only times i’ve cried this week was when my two visitors left.

I’m starting to develop side effects as well – presumably from the chemo. My stomach started off this morning as a “Uh-oh, please don’t let me have gas as I’m sleeping next to my boyfriend” sort of pressure to an all-out “Hell hath no fury” lady shrieking at the top of her lungs as she uses her long nails to shred open my stomach lining. I’ll definitely be bringing that up to the doctor when I see him tomorrow.

Tomorrow! Big day. Tomorrow my blood will be cultured enough, and I’ll get my first dose of a cancer vaccine. I’m excited to learn more about this process.

(19-01-26) Quimotherapy

Chemotherapy (or Quimotherapy, as it is spelled here in Mexico) is approached differently here at the Rubio Cancer Center, compared to the States. In the US, I had an oncologist look at the type and degree of cancer I had, then use that information to determine which chemo drugs he should administer. Here, Dr. Rubio takes a different approach.

He first took my blood, then ran a sensitivity test with 50 different chemo drugs to see which ones my blood reacted to. Four drugs popped up in the results: Gemzar, Cytoxin, Cisplatin, and Ifosfamida. In the states, a doctor would have had me come in 1-2 times every 2-4 weeks, and they would have flooded my whole body with large amounts of these four drugs all at once, enough to poison the good and the bad cells living within me. Dr. Rubio, on the other hand, gives me a 10% concentration of each of the drugs, one day and one drug at a time (Gemzar on Thursday, Cytoxin on Friday, etc).

“If you’re only giving me 10% of what an oncologist would give me, how is that going to be effective?”

His answer blew me away. You may remember from previous posts that cancer cells thrive in sugar. When cancer sees sugar in the body, it essentially jumps on for a ride. Sugar is kind of like a public transportation system for cancer cells…so Dr. Rubio’s approach is to put the chemo drug inside a glucose-based liquid solution. This liquid goes inside my body, cancer cells race over to hijack the glucose (sugar), and before they know it, they are getting counter-attacked by the chemo inside the glucose.

Genius.

I don’t know if that’s how we do it in the states – put the chemo inside a glucose-based solution – but not a single doctor has ever explained it to me in this way before now, so I am guessing not.

(19-01-24) Ozone Therapy

As I lay in my astronaut suit in my hospital bed, I am thinking about how much they infiltrate ozone into my treatment.

(1) ozonated water – They have a certain way of treating the water with ozone, which is said to remove parasites, bacteria, chemicals, and viruses from it.

(2) ozone cutaneous therapy – This is where the astronaut suit comes in, and a tube inserted inside the suit fills up with ozone, permeating the pores all throughout my body.

(3) ozone injections – I received this last night. Essentially, Dr. Rubio used a needle to inject ozone into my right knee and right hip. The ozone creates an enlarged space between the bones in those spots, which then allows oxygen and blood flow to improve. This, he said, would help eradicate the pain in those areas, in just a day or two.

What if increased ozone exposure was enough to prevent more people from getting cancer???

(19-01-23) More Treatments

Two treatments were added to my weekly regimen today: detox foot bath and Rife therapy.

Yo. The detox foot bath was kind of nasty; I’m not gonna lie. Here’s what the water looked like before my feet – my CLEAN feet, mind you – entered the premises:

Here it is, within the first minute of coming into contact with my feet:

Two minutes later:

Ten minutes later:

… and twenty minutes later:

Every single nerve line in our bodies ends in our feet. Our feet store a lot of stress and toxins from having to hold up the rest of the body all day (literally and figuratively), so the premise behind this treatment is to clean out the body by removing toxins stored in the feet.

Next: Rife therapy

I have no pictures for this one; I think I was still reeling from how disgusting that foot water was. I have Rife therapy every Tuesday and Wednesday, so next week I’ll take a photo of the device itself. For now, all I can say is that I held onto these two metal joystick-looking bars and allowed low doses of electromagnetic currents to enter my body through my hands for 10 minutes. I didn’t feel much, although it did bring back fond memories of being barefoot in my childhood basement, playing Pac-man on large arcade games and getting small shocks every time my wrist hit one of the metal buttons on the dashboard.

On a side note, Kyana left today. 😢

(19-01-22) Day 2: Adjusting to the Routine

First thing this morning, I get a knock on my bedroom door. It’s one of the nurses, swinging by to give me meds to take.

…except I didn’t take last night’s medication, either. And when I insistently questioned what these pills were (because anyone who has seen the movie, Girl Interrupted … or better yet, read the book [which is WAY better] can understand my fear about medical staff just handing me pills without explanation), I was then taken into a back room where two men speaking almost-exclusive Spanish injected me with what felt like a series of really awful bee stings (anesthesia) and then planted a device underneath my skin (temporary PIC line/port). After that, I didn’t ask any more questions…but I didn’t take the pills, either – at least not until later in the day, when I had my daily check-in with Dr. Rubio and listened to him explain what each of the pills were for.

7:30ish – morning meds

8-9 – breakfast

post-breakfast – chelation therapy – Here, they hook my PIC line/port up to a bag of yellow liquid. This liquid serves to go deep inside my body and eliminate traces of metals, toxins, fatty plaques, and mineral deposits – things we ingest, inhale, or consume in miniscule amounts from day to day, which then get stored in our bodies and cause damage later in life. After chelation, I get 1-2 more bags of IV fluids: saline, electrolytes, and B17.

12-1 – lunch. I can already see I will be eating a lot of salad here.

See my pills? Still haven’t taken them….

2-2:30 – ozone therapy. Now this was interesting because it involved a little costume play. I put on an astronaut-looking suit, and a long tube was inserted inside the suit. From there, one of the med staff taped the suit down at my wrists and head, flipped a switch on the machine connected to the tube, and then left me alone for 20 minutes while my bedroom filled with the smell of ozone. Did you know that ozone smells? I did not.

3-3:30 – cabbage therapy. This will likely be my least favorite therapy during my stay here. I like cabbage, to eat. I like the idea of boiled cabbage on my body, since it’s warm. Unfortunately, boiled cabbage smells like farts – really bad ones – and this treatment is done in my bedroom. I spent the whole rest of the night worrying that anyone passing by my room thought I had gastrointestinal problems.

my buddy, Nahaliel

You can’t tell here, but i am secretly singing songs from The Little Mermaid right here.

pre-dinner – daily check-in with Dr. Rubio. He wants me to change my toothpaste. And stop wearing lip-plumping lip gloss. And take my meds, now that I know what they are.

5-6 – dinner

After dinner, the day staff have left, and the rest of the evening is mine to reflect and explore. As of next week, I’ll be getting a cancer vaccine injected into me right before bed, but for now it’s just a time to read, write in my blog, and self-talk my way through this very strange (good strange) experience.

(19-01-21) Day 1 @ RCC

Kyana and I began getting ready for our trip to Tijuana before the sun had even risen. Just a little before 7, we were in the car and starting our 5-hour car ride. I’m pretty sure if Kyana had not been in that car with me, I would have cried the whole way…probably pulled over on the side of the road a few times too, just to bawl a little harder. But she was a rock and setting the example for me; that’s been her role in my life more than I care to admit.

Five hours later, we pulled up to a house in San Diego, where a womyn who had only met me once before took the key to my car and assured me repeatedly that it was no problem to leave my car in her driveway for the next six weeks. It was such a small part of the day but one that deserved a moment of recognition because it served to remind me of one very crucial point: I am not alone in this. And I KNOW I am not alone, but sometimes I do forget just how extensive an army I have fighting here with me – including cousins of ex-girlfriends who are happy to house the Truthmobile for six weeks and essentially save me $425 in parking fees at the San Diego International Airport. Thank you, Nicole. Thank you, Sacha.

We took a Lyft from Nicole’s house to a random strip mall in Bonita, CA, where we stood by a curb with a mountain of suitcases and bags and waited for our driver to take us across the border. I won’t pretend I didn’t fight back waves of anxiety-induced nausea – I was silently freaking out a little, courtesy of Hollywood movies and a Masters degree in Forensic Psychology. I had to remind myself these fears were irrational. Tarah, you checked the credentials on their website. You watched a number of videos about their business. You looked them up on the Better Business Bureau. You read every single review of them online. You talked for over an hour with someone who went there.

Thank you, psych degree. That self-talk strategy comes in handy at LEAST twice a week.

So…against every thing I learned during the Stranger Danger workshops I attended every year in elementary school, I put myself and all my belongings into a dark SUV and allowed a mostly Spanish-speaking man named Adrian drive me across the border. The fact that border patrol agents just waved us through and didn’t even bother to inspect any of us or our belongings should have freaked me out a little bit, but I was waist-deep in self talk at this point and barely noticed.

Once I arrived, I had a tour and then settled into my room. The place is nice. It’s clinical, but not sterile. There is a familiarity in the air that is clearly the work of the employees and not the patients (more on that later). Around 2:30, I had my first meeting with the head honcho himself: Dr. Rubio, Sr. The guy who started this clinic over 30 years ago was going to be my personal doctor. The guy who is credited with doing immunotherapy before other doctors around the world started hopping on that bandwagon would be treating ME.

I was starting to feel less nervous. It was here, in this moment, sitting in front of his desk, that I felt what a few other loved ones had been whispering in my ears for days:

You are in good hands here.

my first meal here

taking my blood, to be used for developing a cancer vaccine that will be injected into me on Monday

making friends 😉

(19-01-14) Prognosis & Plan

I swear: in an alternate dimension of reality, I *must* be a superhero(-ine). My cells just grow with such an alarmingly efficient ferocity that I picture my superhero self as being essentially infallible because all her organs, blood, and internal systems are in constant cell re-development and evolution.

Unfortunately, in THIS reality, those cells just mean my cancer is the number one gang on the block.

Bones.
Lymph Nodes.
Organs.

Left hip.
Right posterior hip (which is fucking BULLSHIT because I just got a right hip replacement, so that whole area should be clean as a Muthafuckin WHISTLE right now).
Liver.
Lungs.
Mid-sacrum (I had to look that one up. It’s the triangular shaped bone that forms between the top of your ass crack and your spine. Even my ass crack has cancer.).
Pelvis.
Right knee.

“Uncurable, but treatable.”
Let me break down what this essentially means, according to Western medicine.
This means that I consent to being infused with poison every couple of weeks until my body can’t take it anymore. This means that doctors pump me full of these drugs right here for a little while, and then when these drugs “stop working,” doctors start pumping me with those drugs over there. This means I spend my remaining days on this Earth, inside this body, in doctors’ offices, on the toilet, over the toilet, and in bed.

Fuck. That.

I’m going a different route.

On Monday, I will be waking up before the sun rises and driving from Phoenix, AZ to Tijuana, Mexico. There, I will enroll in Rubio Cancer Center, an immunotherapy clinic that works with Stage 4 Cancer patients. See, other countries don’t all approach cancer the same way that the United States does. In the United States, we attack cancer by flooding our entire body with poison, and then afterward, when everything inside is gasping for its very last breath, we say, “Okay, go enjoy life now! Your immune system will be fine in time.”

Except my immune system DIDN’T end up being fine in time. Have you ever sprayed Raid on a bunch of bugs on the ground? Some seize up the moment the Raid hits their bodies. Some writhe around in the liquid for a while, and you can’t tell if they’re swimming or dancing or screaming or dying, but eventually they stop moving too.
… And then there’s the ones you see moving around in that same room a few days later, and all you can think as you stare at them is, “How the fuck are you still here???”

Hey, breast cancer cells.
HOW THE FUCK ARE YOU STILL HERE???

Chemo and radiation didn’t kill them. They killed enough, for the remaining cells to hide under the PET scan radar for two – count them, TWO – years. But they didn’t kill all of them. Poisoning didn’t work. Neither did amputation.

So instead, I turn to immunotherapy. For the next 3-8 weeks, I will be injected, infused, and immersed with cancer-fighting foods, juices, supplements, and herbs. I will be replacing traditional water for water that is ionized and/or ozonated. Teas that detox my lungs, liver, and skin will be incorporated into my daily routine. I will give vials of my blood that will be used to create one of seven custom-made cancer vaccines that will then be injected into my veins every night before bed. I will participate in bathing rituals that involve removing toxins from my feet. I will essentially consent to a 10-12 hour/day regimen that no oncologist in their right mind would endorse here in the United States. And since my insurance company won’t pay for any of it, I am closing out all three of my retirement plans to pay for it.

I might lose tens of thousands of dollars.
I might die in that clinic in Tijuana.
I might help the US oncologists feel justified in their disdain for all non-Western medicine.

Or, I might invest tens of thousands of dollars into a life that survived and thrived beyond all odds, thereby giving an extra smug “In your FACE!” taunt to all those US oncologists and their disdain for all non-Western medicine.

Anyone who has spent fifteen minutes with me knows which one of these options sounds more like me.

(19-01-08) Racing Thoughts on the Car Ride Home

  • When I was a little girl, I used to blow on dandelions and make wishes that I would die by the time I was 40 so that I wouldn’t have to grow old. Thirty-something years later, it appears my wish is about to come true.
  • Mom-mom knew, somehow. The last time I went home to visit, I brought her a milkshake on my way to the airport. She cried when I leaned in to hug her. She never cries when I leave PA to head back to AZ. “I’m sorry – I’m just being sentimental,” she said. But I think it was more than that. I think she knew that moment would be the last time we would see each other alive.
  • How the hell am I going to find adequate homes for all five of my pets???
  • I never made it to Africa.
  • I never got my PhD.
  • Does this mean my diet changes now, or that I no longer have to give a fuck? I can’t decide.
  • I’m willing to try DMT now.
  • I want to tell them both in the front seat, “I’m sorry I ruined your day.” Not appropriate.
  • Why in 2019? Why not in 2017, when I would have cared much less?? Is there a reason for this extra brutal slap in the face, or is it just shitty luck?
  • Now I’m never going to have the chance to meet his kids.
  • When’s the best time to quit my job?
  • Jenna is going to have to find a new place to live. I need to sell the house … or am I still leaving it to Keaton?
  • Aunt Crystal is going to be mad when she finds out. I’ve already promised to take care of her when she gets old.
  • I need to cash out my three retirement accounts.
  • Dr. Seidel saw all that cancer when he opened me up. That’s why he didn’t bother to follow up with me after he replaced my hip. He knew I was a lost cause.
  • I failed everyone who fought so hard for me the first time.

(19-01-02) Knowing What I Want

People close to me know how much it hurt when Maya left. Obviously, no one likes a break-up, and of course it’s harder to be the one dumped than the one choosing to leave. But to hear a womyn tell me she would be there fighting with me through the whole thing, and then to experience that person walking away from me just two months later was immensely crushing. I never wanted to go through cancer treatment in the first place. Had I had my way, I would have racked up obscene debts on credit cards as I flew to various places around the world, living life like I had no cares whatsoever.

But I made a choice. For a girl. Who left. And then my friends swooped in and picked up my broken pieces, and I kept fighting. For them. Not for me.

The first time around, I was definitely not fighting for me.

And when I survived, there was a part of me that was disappointed. It was like there was all this build up to fight for my life … and when I *won,* I looked around at the fragmented pieces of me and my world, and I just couldn’t understand what I had fought so hard for. Coupled with that realization came survivor’s guilt. Why did *I* make it? I’m a single womyn, with no children, no significant other, no cataclysmic impression on the universe … just some broken down girl who was kind of already done with life by the time she hit 30 and was foolish enough to make a bunch of promises to a girl who really never intended to stick around. 2017 fucking SUCKED … because all around me, people were so happy, so impressed, so proud that I beat down everything that tried to break me in 2016 … yet all I kept thinking was, “So, I’m still here. Great. Now what the fuck am I supposed to do?”

If my cancer had come back in 2017, it would have been a no brainer. I know exactly what I would have done with the $250,000 that my house would sell for – and NONE of it involved surviving. I would have lived and experienced all I could with a quarter of a million dollars. I would have done copious amounts of drugs and put myself in high-risk situations, and I would have died that same year, without a trace of chemo drugs or radiation treatments in my system – and, if I’m being honest, without any loved ones by my side.

Now it’s 2019, the cancer is back, and I can’t help but wonder: Am I going through this same experience because I didn’t do enough of the right things before? Is this a do-over? Am I getting a second chance so that I make better choices and utilize better motives this time around?

This second time around, am I supposed to decide whether or not I am willing to fight for ME?

That’s gonna be hard. ‘Cuz I’m in love now. Like, for real – in love. The last time I was in love was eight years ago, and it was fucking awful, and I steered clear of this kind of relationship for such a long time afterward. But I’m in it. And I don’t want to leave.

And I am freaking out that in this “second chance” that cancer is giving me, I am already repeating some of the same mistakes I made the first time.

(19-01-01) CALENDAR OF EVENTS

With Cancer Round I, I let all of you know about upcoming appointments, procedures, and tests via a shared Google calendar. For some of you, that was difficult to access. This time, I will try another route. On this page, I will post all cancer-related appointments as I schedule them, which means this page will have ongoing updates.

DATEAPPOINTMENTADDITIONAL NOTES/COMMENTS
18-12-21biopsy
hip replacement
Dr. Seidel
18-12-28follow-up
w/oncologist
Dr. Curley
* confirmed: metastatic breast cancer in hip
* awaiting a 2nd pathology report, to determine if this cancer is HER2+, too
* ordered a PET scan
* PET scan and 2nd pathology report will determine prescribed treatment
19-01-07PET scan
19-01-08follow-up
w/oncologist
Stage 4 cancer in bones, organs, and lymph nodes

He wantse to start chemo right away, with some radiation for pain control.

I have refused.
19-01-21admissions into Rubio Cancer Center, in Tijuana Mexicoestimated inpatient stay: 6 weeks
19-01-28Dr. RubioCancer vaccine injections start
19-01-29Dr. RubioGo to the lab to look at my blood under a microscope, to see how it’s interacting with my blood

(18-12-29) Round II – The Thoughts

Here we go again.

The “I’m so sorry…”

    the “What can I do?”

       the “You’ll get through this.”

coupled with more veteran statements:

“You beat it before; you’ll do it again.”

and

“Time to dust off that Wonder Womyn cape!”

and

“It’s not fair, you having to go through this again.”

And all the while, I sit on the other end of the phone line, biting chunks of my lower lip off in hope that will prevent the tears from cascading down my cheeks again.

It doesn’t.

But it does give me a fucked up looking lower lip and trails of pimples from where the salty water flowed down my skin.

So it’s back.

Or, more accurately, it never left.

I guess my intense stubbornness is deeper than my persistent arguments with people, deeper than my Freudian personality, deeper than my childhood. It’s as deep as the cells used to create my DNA … because even when I go under the knife,

even when i elect to have the left breast removed as a preventive measure,

even when I agree to six months of aggressive chemo and six additional months of maintenance chemo,

even when I allow six weeks of radiation to burn holes into my skin that then force me into hyperbaric oxygen chambers for hours a day, months on end,

even when I give up an ovary and cut my Fallopian tubes as more preventive measures,

even when I sacrifice my hair, my health, my relationship, my reputation, my identity, EVERYTHING,

even when I endure ALL of this just to kill off a small group of cells living deep within me,

they

    still

       stubbornly

 survive.

They hibernate. They wait. They travel by night, in Cartel cars down pitch-black unmarked streets, using specialized gear like night-vision goggles to travel their product along, sometimes speeding so quickly and so quietly that no one even notices they just passed through another town.

And when they are sure no one has seen them, when they are sure they are safe, they stealthily unload their product into some unsuspecting storage area to await final distribution.

The storage area? a femur head, tucked deep within a girl’s right hip

The final distribution? All across the landscape, via 206 otherwise perfectly intact bones (I’m guessing)

When I started having hip pain a few months ago, I was sure it was yet another consequence from my impulsive decision to jump off a ledge at ASU Gammage after watching a dance performance. What can I say? I was feeling inspired. The inspiration bruised my heel bone and put me in a boot.

“Correlation is not causation,” one particular, annoyingly smart friend would remind me. I didn’t believe him. The unraveling of events, pain, tests, and treatment seemed to all sync up and remind me that these were the consequences I would be forced to face if I didn’t remember to act my age.

No more jumping off ledges.

It turns out that jumping off that ledge may have been the best thing I could have done that night.

It turns out that the presence of yet another incredible person being there – at the right time, in the right place – may have saved my life. AGAIN.

The only question is this: Am I really going to agree to go back into battle?

(17-03-29) Reconstructive Surgery 2.0

I’m not sure if my absence from this site has been noticed.  I’ve been in my head a lot, regarding whether to go through with this reconstructive surgery.  I think there are two reasons why i’ve been ruminating so much.  First, this is a decision that i am truly making all alone.  I know all the decisions are essentially mine to make … but i did let myself get swayed a lot with some of the previous issues (agreeing to chemo, allowing them to remove the expanders and implants, fighting the man at work), so i was able to diffuse the responsibility.  If something went wrong with any of those experiences, i could lay some of the blame on someone outside myself.  But this decision – the decision as to whether to go through several painful surgeries just to look “normal” with clothes on – is mine and mine alone to make.  If i end up being dissatisfied with my decision later, the only person i have to blame is myself.  That scares me … which leads me to the second reason for such ongoing rumination: the self-awareness.  I don’t like what i see in myself when i think about this decision i’ve made.  I should be stronger.  I shouldn’t care about looking “normal.”  I should see this battle wound as sexy evidence of just how strong my body can be.  I should be proud of my body, not ashamed.  I should want to rip my shirt off and shout, “Look at this!  Can you believe i survived that shit?!” and then have crazy, confident, completely naked with some womyn who is just as impressed by my war wounds as i am.  But i’d be lying if i told you that i see or think any of these things.

Okay.  Logistics.

Pre-op consult with Dr. Matatov to prep for surgery on Thursday, April 6.

Surgery on Friday, April 7.  It is scheduled to start at 7:30am.  They never start on time.  Dr. Matatov blocked out 10 hours in the operating room.  This is important because you may not hear any updates until 8:00pm or later (Phoenix time).  Don’t stress.  The surgery is SUPPOSED to take between 6-10 hours.

I am required to remain inpatient for a minimum of 48 hours, due to high risk of blood clotting in the first 24 hours after the surgery.  This means at the very earliest, i would leave the hospital on Sunday, but it’s more likely going to be Monday.

Just like with all my other surgeries, i am choosing not to discuss which hospital i’m having my procedure at, and i will be signing a form denying any and all visitors (for the smarty-pants people [ahem, Michelle]  who like the challenge of figuring out on their own where i am at).  Please don’t take it personally.

My mom is flying in on Monday, April 10 and staying 9 or 10 days.  If you’re one of my loved ones who tends to worry each time about whether i’ll have enough support: rest assured.  My mom’s got this one.  🙂

I am going to designate one person to be authorized to get updates from my doctor via phone; that way, there is at least someone who knows that my surgery went successfully and all that.  If you want to be added to the list of people (s)he updates, please write a reply at the end of this blog entry.

I’m not gonna lie.  I’m nervous about this – way more nervous than i was with the mastectomy.  I think it’s because i’ve had the TIME to worry.  I’m trying to keep that in check this next week.

(17-02-22) Elite Plastic Surgery

Oh, the irony of it all.

To throw a fit about taking Tamoxifen when it clearly causes weight gain … to spend hours at the gym every day doing cardio … to score myself every night on how well i managed my calories and fat grams … to fight so hard for five weeks just to lose six pounds of weight and 2% of body fat …

… to do all that and then hear the doctor tell me THIS: “It would help if you put on some weight” …

Well, at least i can laugh at the irony.

Thanks to some digging by a nurse practitioner at the Virginia G Piper Cancer Center, I learned that there might actually be a doctor in AZ who can perform the types of specialized flap surgeries i would need for my reconstruction.  I had my consultation today with Dr. Tim Matatov at Elite Plastic Surgery, in northeast Phoenix.  This consult was a world of difference compared to my consultation at the Mayo Clinic.  I brought the photo album i made documenting my breast cancer journey, and he carefully looked at all 30 pages, asking detailed questions about my cancer, surgeries, radiation damage, oxygen therapy, doctors, implants, oncology treatment plan, and hopes for reconstruction.  He reviewed some doctors’ progress notes i brought with me.  When i stripped down to have him check the fat deposits throughout my body, he literally took out a measuring tape and measured areas along my abdomen, inner thighs, and butt.  (BTW, terrible day to decide not to wear underwear!)  He explained all my options and told me which ones he thought were the safest.  He was brutally honest with me about how many surgeries i would probably need (3-4), what my real recovery time would be in between each one (6-8 weeks the first time, 4-6 weeks subsequently), not being able to promise a particular cup size up front (I *might* get to a full B in time but not at first), and how the purpose of the first surgery was NOT to give me the breasts i always wanted (but rather to get a mound of healthy living tissue attached safely to my chest area).  He explained how he deals with insurance companies to ensure that he gets paid, and he said he never comes after the patients for money in the events that insurance providers underpay.  He said he does cosmetic surgery procedures because it pays the bills and reconstructions because it is his passion.  He spoke of doing his training in New Orleans (the mecca of breast reconstructive surgery, for the record), working under Bob Allen (the breast microsurgeon who INVENTED the DIEP flap surgery), participating in 180 breast reconstructive procedures during his residency, and completing 17 flap surgeries in the six months that he has been working in Phoenix).  He said there are only 3 surgeons in AZ who do flap surgeries; the other 2 work at the Mayo Clinic (Dr. Casey being one of them).  He showed me pictures of his former patients, very graphic photos of the abdomen being cut open and stretched out during surgery (that part was too much!), and images of CT scans showing the blood vessels throughout the body.  He listened to me, examined me, and consulted with me for almost two hours.  I was blown away by the level of detail and the degree of honesty he shared during this consult.

If i do end up deciding to go through with reconstruction, i think i’ve found just the right doctor.

Surgery #1 would take place in late March.

(17-02-16) Quantity Vs Quality

“…but you NEED to take it.”

I’ve heard this statement a lot over the past month or two.  Whenever i tell a friend, a relative, or a doctor that i don’t like the side effects from Tamoxifen, their first response is reminding me that i “need to take it.”

So let me remind you about one of the things you probably love AND hate about me the most:

I do what i want.

Now tell me again what i “need” to do?

I get it.  You don’t want my cancer to come back.  We’re in the same boat with that one.  Cancer treatment fucking sucks, and i would definitely like to avoid having to travel down that path ever again.  But you know what else fucking sucks?  Being miserable. Being miserable fucking sucks, and sometimes when you find yourself being miserable day after day after day, at some point it’s probably a good idea to figure out how to STOP being miserable.

Will Tamoxifen help me live longer?  Possibly.  I mean, that’s the point of the drug – to stop cancer cells from binding to my estrogen and thus being able to grow all throughout my body.  However, it’s not 100% guaranteed.  I could take that effin pill every day for ten years straight, but then still end up with cancer again at some point.  And in the meantime, that pill just got to spend an entire decade wreaking havoc on my body and spirit.  I mean, i’ve only been taking it for a few months, and this is what i’ve noticed:

  • I gained 12 pounds in two months.  My body fat was 1% away from being considered “overweight.”  Fat deposits were collecting in my abdomen and thighs, in a way they hadn’t before.
  • Joint pain was suddenly an issue.  Seriously – joint pain?  I am thirty-seven freaking years old.  I am young and athletic.  It shouldn’t hurt to stand up in the morning.
  • My insomnia was becoming medication-resistant again, just like when i was going through chemotherapy.  How many of you are okay with me doubling or tripling up on my sleeping meds on a regular basis?  … ‘cuz that’s what i was doing multiple times per week.
  • Hot flashes and night sweats infuriated me.  I know it seems silly, but YOU try standing in a desert and having 18 hot flashes in one day and see if you’re not ready to kill the next person who looks at you strangely.
  • Depression and anxiety cycles were creeping up on me more and more.  You know what increases depression?  Body image issues and lack of proper exercise.  You know what increases anxiety?  Insufficient amounts of sleep and lack of proper exercise.  It’s all creating its own little cycle, and i’m standing here, watching it all go ’round and ’round, feeling powerless to stop it.

In the end, it’s not worth it to me.  Many of you may not agree with my decision, but i’m choosing quality of life over quantity.

I haven’t taken the Tamoxifen since January 25.  In these past three weeks, i’ve lost 6 pounds, seen a slight improvement in my sleep cycles, dealt with half as many hot flashes, and noticed how much better my emotions/moods have been.  Dr. Curley prescribed me a different option, Femara, which i picked up from the pharmacy on January 30 but never bothered to even open.  For now, i’m going to try to fight cancer recurrence through diet and exercise.  Trying to completely eliminate sugar from my diet has been, HANDS DOWN, the hardest thing i’ve ever tried to do in my life, by the way … but i’d choose this battle over taking Tamoxifen any day.

(17-02-07) Mayo Clinic

New day, new clinic, new doctor.  I’ve gotten used to this by now.  I can concisely sum up 15 months of trauma and treatment, whip off my clothing and show my private areas to groups of complete strangers in a room, and report devastating experiences without so much as a crack in my voice or a tear in my eye.  I can ask questions unapologetically and relentlessly, size up whether i like a doctor within a few minutes, and make it clear that i know in the end all these decisions are MINE – not theirs – to make.

Today was no exception.

 

me, 10 minutes into the consultation: Does the IGAP flap surgery take fat from the lower butt itself, or the thigh area just below the butt?

Dr. Casey: the lower butt itself … but honestly, i wouldn’t recommend that surgery for you.

me: Why not?  That’s the area where i have the most fatty tissue to work with.

Dr. Casey: There are a number of issues with doing that.  First, there’s your positioning in the operating room to consider.  We can’t suck fat out from your back side, then flip you over to perform surgery on your chest.  This means we’d essentially have to have you propped up on your side the whole time, which is tricky.  Then, there’s the fact that the tissue in your butt is far more fibrous than in your chest; it’s like trying to make a mold out of something that’s as solid as a rock.  There is also often a problem trying to match up the size of the blood vessels between those two regions, and since we have to connect the blood vessels, we need the sizes to be relatively similar.  Also, because we’d be cutting into the area where your sciatic nerve is located, you may find yourself dealing with chronic pain in the long run.

me: So, then, what type of reconstruction are you suggesting?

Dr. Casey: I think a lateral thigh perforator (LTP) flap surgery would be best.  It takes tissue from your outer thigh area.  The blood vessels are more similar in size to the ones by your chest, and it goes in between the muscles instead of cutting into the muscles.

me: I haven’t even heard of this option.  Do you have any before and after photos that you can show me?

Dr. Casey: No.

me: (blink, blink) Um, okay.  Do you not take photos before and after these procedures?

Dr. Casey: Yeah, we do, but there is patient confidentiality to consider.

me: I understand that.  So no one has given you permission to let other prospective patients see what this procedure looks like?

Dr. Casey: No.

me: Okay… Is there any one who’s had this procedure whom i could talk to, to get more insight?

Dr. Casey: No.  Again, patient confidentiality.

me: How many of these procedures have you done?

Dr. Casey: Three.

me: Three?!  How many of the IGAP surgeries have you done specifically for breast reconstruction?

Dr. Casey: One … and again, that’s not what i would recommend doing.

(My head is REELING.  This guy has only performed this procedure THREE TIMES, and he has NO PHOTOGRAPHIC EVIDENCE of his work?  Is he fucking KIDDING ME right now?!)

me: How long has this procedure been around?

Dr. Casey: It’s been around for about three years.  If you want to research it, look up Stefani Tuinder.  She works in the Netherlands and has some done some pioneering work in this field.

(Pioneering is not a comforting word when we’re talking about reconstructive surgery.  When i hear “pioneers,” i think of old-fashioned ladies wearing bonnets and living without electricity.  Poor word choice, Mr. I’ve-Done-This-Highly-Technical-Microsurgery-Three-Whole-Times.)

me: What is the risk of the flap failing and collapsing?

Dr. Casey: There is a 2-3% failure rate with LTP flaps.  There’s also a risk of blood clots forming from the blood vessels not working properly, which is why you’re in an intensive care recovery unit for a few days after the procedure.

me: Are there two surgeons available to do both breasts at the same time?

Dr. Casey: I wouldn’t recommend that.

me: But some surgeons are willing to do that.  Is that an option here?

Dr. Casey: No.

me: So you’re the only surgeon here who does this kind of surgery?

Dr. Casey: No, there are others, but we all have our own individual practices, and it would be difficult to try to coordinate schedules.

(What that tells me, doctor, is that you’re not willing to put in a little extra work to accommodate my needs … or you just want all the surgery profits for yourself.  Regardless, i’m seriously less than impressed with you at this point.)

me: If i go through with this, i want to be able to have both breasts worked on at the same time.  The recovery time in between surgeries is long, and i’m really going to need to get back to work at some point.  I would like to avoid delaying that as much as possible.

Dr. Casey: If that’s something you insist on, i would recommend Dr. Bob Allen.  He works out of South Carolina and New York.

(Is that supposed to be helpful?)

me: If we *did* do separate surgeries, it appears that i would need three surgeries: one for the right breast, one for the left, and one for evening them out after they’ve settled.  What does the timeline look like, including recovery times and waiting periods?

Dr. Casey: Well, after the 1st surgery, you’d need to wait 3-4 months, then wait another 3-4 months after the left side.

me: And the recovery time is 8 weeks.

Dr. Casey: More like 6.

(More like 8….)

me: So i would be out of work for 6-8 weeks, be able to go back to work for 1-2 months, be out of work again for another 6-8 weeks, and then have to leave work 1-2 months after that for the third surgery, which would take another 4-6 weeks recovery?  So, we’re talking 24-38 weeks … 6-10 months total just for reconstruction?

Dr. Casey: That sounds about right.

(sounds about ri… Seriously, i kind of want to punch you in the face right now.)

* * *

In the end, he did convince me to return the following morning for a CAT scan.  The CAT scan is going to analyze all the blood vessels in my stomach, side thigh, and butt to see which ones would be appropriate for transfer.  I don’t even see the point of this; if there isn’t enough fat in certain areas, what does it matter what the blood vessels look like??  But i’m going … because honestly, the more involved i get with this process, the more ANNOYED i get, so these steps are just taking me closer and closer to saying a firm “NO” to reconstruction.

(17-01-27) Weight Gain

After repeated Internet research, consultations with an oncology exercise specialist and an oncology nutritionist this week, five days of obsessive-compulsively logging my food and exercise, and a heart-to-heart with my oncologist, my fear has been validated:

The Tamoxifen is causing my weight gain.

9 pounds in six weeks.  12 pounds since October.  This is not an acceptable option for me.

I requested to meet with Dr. Curley to discuss alternatives.  “You need to be on Tamoxifen,” he tells me, before explaining to me once again that without taking a medication to block the estrogen in my body, my chances of recurrence are high.  My particular cancer NEEDS estrogen to survive.

I stare at him, unblinking.  “Yeah, yeah, i understand this … but i need YOU to understand that what i am currently doing to try to keep myself from gaining more weight is not sustainable, and it’s borderline unhealthy.  Going to the gym 1.5-3 hours a day, 6-7 days a week, and eating 1500 calories or less is not going to work long term  … and if i gain any more weight, you and i both know i will just abruptly stop taking these meds.”

We go back and forth about this for a while, stuck in our own perspectives of what is “best” for me.  He sees “keeping the cancer away” as best for me.  I see “being proud of what i look and feel like”  as best for me.  We are not on the same page; i get that.  Still, in the end, i am the one who gets to make the decision, and i am not willing to take this drug for the next 9.5 YEARS if it’s adding 4-5 pounds a MONTH.

In the end, we reached a compromise.  I agreed to take a smaller dosage of the drug every OTHER day.  Meanwhile, he’s testing my blood to see if i am eligible for a different type of estrogen-blocking medication.  I agreed to spend the next three weeks strictly abiding by the food and strength training plans that the oncology nutrition and exercise specialists laid out for me, and he agreed that we would figure out a different plan if i gain any more weight in those next three weeks.

I went home and hosted a book club social at my house that evening.  I overindulged in food throughout the night, snacking continuously on cheese and crackers, vegetables and hummus, dark chocolate, 1/3 of a vegetarian burrito, and 4 ounces of tequila.  2,531 calories for the day – way over my daily limit, but hey, at least i burned 591 calories from being on the elliptical for an hour.  That has to count for something, right??

This morning, the scale showed i had gained 2 pounds.

I didn’t take my Tamoxifen.

(17-01-24) Craig Harris

I wrote a letter on behalf of Craig Harris, whose work has been submitted to potentially earn a Pulitzer Prize.

The Pulitzer Prize Board
c/o Columbia University
709 Pulitzer Hall
2950 Broadway
Mail Code 3865
New York, NY 10027

 

Tuesday, January 24, 2017

 

Dear Pulitzer Prize Board Members:

In today’s day and age, Investigative reporting sometimes appears to be a dying art.  We consumers get “bored” if an article is too long.  We no longer read the newspaper before heading to work each morning.  We prefer the drama of television reality shows to finding out what is happening in real people’s lives all over the world.  We read, believe, and propagate fake news from the Internet so extensively that there is now a market for fake Internet news sites.  With all of these changes, it’s easy to undervalue the significant, crucial role that investigative reporters play in shaping the beliefs, attitudes, and behaviors of the individuals in any given society.

I, however, will never lose sight of that significant, crucial role they play … because one of those investigative reporters literally saved my life.

Arizona Republic journalist Craig Harris learned that the Arizona Department of Juvenile Corrections (ADJC) had fired me – an award-winning teacher with 12+ years of experience – while I was in the hospital undergoing advanced cancer treatment.  His research into the facts uncovered a blatant, ongoing, systemic pattern of employee mistreatment that went far beyond me; in fact, it went far beyond the agency I worked for.  Multiple state agencies, particularly ADJC  and the Department of Economic Security (DES), were routinely firing employees for reasons that had nothing to do with their job performance.

His coverage of my story went viral.  People all over the country were watching his interview with me and reading his article, and they were responding.  They were calling the news station, asking how they could help.  They were calling the governor’s office, imploring him to intervene in my case.  Craig Harris wrote a single article that touched both heart and nerve of countless Americans, and their responses were heard.  Two days later, as I lay in a hospital bed recovering from my third surgery in four weeks, a spokesperson from the governor’s office called to inform me that my job had been reinstated, and I was allowed to take as much time off from work as I needed to finish my cancer treatment.

I literally owe Craig Harris my life.  Had he not shared my story with the country, I would have lost the health insurance benefits that were tied to my state-employed job.  I would not have been able to afford the rest of my aggressive cancer treatment, including the life-threatening infection I got from radiation wound damage.  Doctors initially told me that without treatment, I had an 85% chance of being dead within two years.  Craig Harris helped ensure that didn’t happen.

He didn’t stop there.  He wrote a series of articles exposing ADJC and DES for unethical firing habits, decisions to merge adult sex offenders and juvenile inmates on the same property without following proper protocol, and bribe-like rewards from one director to employees who agreed to change from “covered” to “uncovered.”  His investigations led to 2 directors getting fired, as well as at least 6 ADJC and 40 DES employees being offered their jobs back.  In addition, the Department of Corrections agreed to stop housing adult sex offenders on the same property as juvenile inmates.

It is reporters like this – reporters like Craig Harris who make it their mission to discover, research, and expose injustices – who shape society to become a better version of itself.

 

Sincerely,

Tarah Ausburn

 

(17-01-22) Menopause @ 37

Hot flashes.  Mood swings.  No more periods.  These were the three pillars of menopause, as far as i was concerned.  I remember being in 8th grade and watching one of my best friend’s moms go through this.  We would run up to Lizz’s bedroom and laugh after watching Mrs. Gloner stick her head in a freezer to cool down.  We would turn our faces away and pretend we couldn’t hear her extensively screaming at one of the children for some minor offense.  We would sit beside her and console her silently when she broke down into hysterical sobbing.  This is what we knew of menopause; sure the hot flashes and mood swings were enough to turn a relatively stable womyn crazy, but at least there were no more periods.

A LIST OF THINGS I *DIDN’T* REALIZE ABOUT HAVING MENOPAUSE

  1.  Menopause messes with your weight.
    Menopause lowers my estrogen level, which affects my lean mass and my bone density.  Suddenly, despite exercising 6 days a week (typically for 1.5-2.25 hours each time), i am GAINING weight.  So i adjust my diet.  Nothing.  So i adjust how i use weight lifting machines.  Nothing.  So i get more sleep.  Nothing.  So i get less sleep.  Nothing.  So i use pre-workout mix before the gym.  Nothing.  It’s been six weeks now of intensively working out, and i am still a good five pounds overweight.
    *** I’ve been hesitant to discuss this with anyone.  Most of the womyn in my life are bigger than i am, and they probably don’t want to hear some skinny bitch talk about how she can’t fit into her size 4 skirts anymore.  So… let me break this down another way.  I just spent the last year getting sliced open and surgically implanted and constantly drugged.  I lost my hair and breasts and one of my implants – essentially losing my sense of femininity.  I lost my energy, strength, and the muscle mass that i had literally spent the last two decades cultivating.  Now here i am a year later, all scarred up and weak and squishy and physically deformed … and all i have been wanting to do for the last five months of treatment is start putting my returning energy to good use at the gym so that i could get back to looking and feeling like myself.  Except no matter how much i monitor what i eat, how much i eat, and when i eat, and no matter how many days i play racquetball or hike or lift weights or climb 123 flights of stairs on the StairMaster or run 7 miles on the elliptical at a resistance level of 12, I STILL CAN’T GET BACK TO LOOKING LIKE ME.
  2. Menopause messes with your sex drive.  
    Sex used to be fun – right?  I mean, I’m pretty sure i liked it.  I’m pretty sure that there were periods in my life when i associated with some pretty questionable people *because* of it.  But now?  Now, i don’t think about it.  I don’t want it.  I don’t miss it.  And when i find myself about to engage in it, i dissociate from it.  My parts and my drive have both dried up…at 37 years old…seriously, living another 3-6 decades without ongoing sex is going to turn me into the biggest bitch anyone has ever seen.  I already know.
  3. Menopause messes with your ability to watch television like a normal human.  
    If i cry over a Subaru commercial one more time, i seriously might throw my computer monitor through my bedroom window.  And can someone please tell me WHY the plights of vampires and werewolves are so overwhelmingly emotional to me?  (Okay, that’s always been true.  I’m just trying to figure out why we’re all so obsessed with these types of shows.)  Seriously, though.  I’m *always* crying about some character, or actress, or plot twist, or commercial break.  I get these breakouts on my face whenever i cry, and for the last two months, there has been this permanent trail of whiteheads along the right-side edge of my face, a testament to me lying in bed in fetal position, crying over yet another scenario that isn’t even real.
  4. Menopause messes with your appetite.
    I might be making this one up.  I just can’t figure out why all i ever want to do is eat, even when i am not even fucking hungry.
  5. Menopause messes with your sleep.  
    I’ve honestly had insomnia since i was an infant.  My mother will attest to this.  I take comfort in reading articles about how people who sleep less are typically more intelligent than the average person.  Still, it’s annoying.  I take a lot of drugs (prescribed and otherwise) to get normal amounts of sleep.  It used to be that as long as i didn’t drink alcohol that night, and i abstained from coffee after 11am, and i worked out that day, and i took some melatonin an hour before taking 1-2 sleeping meds, i would eventually fall asleep and STAY asleep for 6-7 hours.
    Not anymore.
    Now i still wake up throughout the night to pee or stress or wonder if the latest episode of Scandal is available on the Hulu website yet or think about how many more pets i will have in the course of my lifetime.  I wake up, even while drugged on the highest allowed dosages of prescription medications, and i stay up – compelled to stay in bed just in case i do get tired again, but fully aware that this will be yet another night where i’ll be missing out on at least one REM cycle.
    I even wake up early now.  Automatically.  No matter what time i went to sleep the night before.  “Sleeping in” used to mean waking up in the P.M. hours.  Now, “sleeping in” means not waking up before the sunrise.
  6. Menopause messes with your finances. 
    I’m already hungry from extreme exercising, and emotional after watching all this TV drama, and irritable because i stopped giving my body bursts of oxytocin and sex-induced endorphins … and now my sleep is further disrupted because these hot flashes are suffocating me all night?  Sleep-deprived Tarah typically uses her insomnia to peruse the Internet … which leads to Internet shopping … which leads to things like a $700 purchase of sheets and a mattress pad that are specifically designed for thermally incompatible couples but seem like they could also work well for a menopausal Party of One.  The sheets and pad are pretty damn cooling … but yeah.  I’ve noticed a significant increase in my impulsive purchases.  (That reminds me: Where the hell is that Himalayan sea salt lamp with the built-in dimmer switch?  That should have been delivered by now, and i need that to balance out the ions in my bedroom atmosphere!)
  7. Menopause messes with ALL OF YOUR BODY PARTS.
    It’s not just the weight and the vagina and the hormones.  My skin is dry…and dehydrated-looking.  It itches.  My hair is growing back with a vengeance, but there are still patches on my scalp where it’s barely visible.  I sweat in places i never even considered – like at my knees.  My bones ache … like, for no actual reason.
  8. Menopause messes with your memory.  
    Chemobrain was pretty terrible, but i continually reminded myself that it was only temporary.  Little did i know that chemobrain would leave, only to be replaced by memory problems brought on by menopause.  I had trouble remembering all the names of my exes even BEFORE my cancer treatment started.  Now it’s downright impossible.

I always knew the time would come when my body and mind would start to slow down, affecting my appearance, sex life, feelings, and mind.  I really just never considered what it would be like to go through all this before i even hit 40.

(17-01-19) Prosthesis

Walking towards the door of Barbara’s Mastectomy Boutique, i still wasn’t sure what i was expecting.  I wasn’t even sure why i was doing this.  I have spent the last five months parading around with my one-breasted status; why get fitted for a prosthesis now?  Maybe it was simply because my reconstructive surgeon had handed me a prescription on Monday for a prosthesis, and i was just following up on her idea.  Maybe it was because the idea of going back to work and teaching a classroom of teenagers who would be staring at my chest even *more* now was unsettling.  Or maybe … if i am being really honest with myself … it was because even after five months i still hadn’t learned to embrace what the new me looks like.  Whatever the reason, here i was, walking across the parking lot to where Barbara was waiting for me outside the door.

“Are you looking for Barbara’s?”

I looked down at this womyn and nodded my head.  She was seriously so short; even with chunky 3″ heels, i still only measure up to 5’7″, but i was TOWERING over this womyn.  She introduced herself as Barbara, the owner, welcomed me inside, and instructed me to head to the back room and remove my shirt.  “I’ll be right there,” she assured me.  “Just have a seat and make yourself at home.”

I’m pretty sure i don’t sit around my home topless on a regular basis, but i did as she instructed.  I walked down the hall and quickly removed my sweater, collared shirt, and sports bra.  (I don’t know why i always feel like i have to rush to remove my clothing when i am in places like these; i always end up just sitting/lying there, awkwardly waiting.) Barbara appeared and immediately started pulling forms out of a folder.  “Sign here … and here … initial here … remember to postdate these pages because we haven’t finalized authorization from your insurance company, but you should be fine … Susie handles all the paperwork, and she really knows her stuff….”  On and on she droned while i sat there topless, feeling completely ridiculous to be filling out paperwork while half of my clothes were missing.  I mean, couldn’t we have completed the paperwork BEFORE she had me remove my shirt?

In hindsight, she was probably just trying to normalize the situation for me, acting like it was completely no big deal that i had to be half-naked for an entire hour while a complete stranger took my measurements, helped me in and out of bras, and inserted prostheses into the garments.

… but it was still weird.

For some reason, i thought that a prosthetic breast would be hard, heavy, some sort of over-the-shoulder-boulder-holder kind of contraption.  Not even.  These things are light, teardrop-shaped pieces of silicone that slip easily in and out of pockets sewn into the mastectomy bras.  They have the same soft squishy feeling as a natural breast, and they weigh about the same.

The bra selection – while fairly extensive, with about a dozen different styles – was a little disappointing.  Of course, this is coming from a girl who has over 30 different Victoria’s Secret bras in a vast array of colors and textures, with all of them aiming for “sexy” more than “functional.”  The only actual color they had (besides black, white, and nude) was lavender, and many of the styles were … well, not that stylish.  Still, i appreciated the space i was in.  Here i was, standing in a room filled with bras, sports bras, tanktops, and swimwear – with every single item designed specifically for post-mastectomy womyn.  I was being educated by a fellow survivor who CLEARLY enjoys the service she is able to provide to this particular cancer community.  To top it all off, the prosthesis and four bras were being covered 100% by my insurance company.  United Healthcare was actually paying for me to have the luxury of looking “normal” to the outside world.

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I walked out of Barbara’s Mastectomy Boutique wearing the navy blue post-mastectomy tanktop  and the prosthesis.  Sure, it was only 67 degrees outside, and yes, i was cold … but there was something about walking out of that store looking like a two-breasted womyn that just FELT good.  It was like it was my secret to hold onto, this cancer battle of mine.  For the first time in a year, i no longer LOOK like a cancer patient.  My hair is growing back, my skin has color to it, i’ve regained all my weight (ahem…and then some), and now i have two mounds properly filling out my shirt.  Am i ashamed of the cancer that almost claimed me but didn’t?  Of course not.  I fought an intense battle with my own biology, and i WON … but i don’t necessarily want the rest of the world to know all that i endured.  I want cancer to be one of those things i share with people after i have gotten to know them a little better and learned that i can trust them with my more vulnerable parts … but to the rest of the world, I just want to be seen as my original fierce, confident, sexy self.

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(17-01-17) Reconstruction

I met with my reconstructive surgeon yesterday to discuss “next steps.”

To reconstruct or not to reconstruct?  That is the question that has been keeping me up these past several nights.

I have a consultation at the Mayo Clinic on February 7, to see if my body is eligible for IGAP Flap Reconstruction*.  I have three weeks to choose between more doctors, more hospitals, more pain, more recovery time, and more risks; or living out the rest of my life feeling lopsided and less attractive and constantly on display as the one-breasted cancer survivor.

The “strong” choice seems to be NOT getting reconstruction.  I just don’t know if i have it in me to live happily with that choice.