(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.