(16-07-31) Hope

The thing about hope is this: You never know when you’re about to lose it.

Sometime during this month of July, i lost hope.  I felt it slipping from my grasp at various points: during my week-long hospitalization; inside the pressurized oxygen chamber for the 7th time, the 9th time, the 18th time; as i lied to yet another person this week, pretending i already had plans just so that i had an excuse to stay in my bed instead of going out; last Wednesday, when Dr. Walsh gave me a hand-held mirror so that i could look at what has happened to my breast area; as i admitted to my mom first and my dad next that i was struggling financially; and as i sprawled on my hammock during a chaotic wind and thunderstorm on Friday night, my teeth chattering, my eyes gritty with dirt, my robe soaked.  Yes, in all those times, i felt less hopeful, less optimistic, less positive … more fatalistic.  But even then, even in those moments, i considered them just that: moments.  I don’t know when those moments stopped being periodic and became … constant.

I’m facing some tough choices right now, regarding my body and regarding my health.  I’m sure the decisions are obvious to anyone who isn’t me.  The cellulitis / turned staph infection / turned tissue necrosis is simply not healing.  In this past month, they have pumped me with five different kinds of oral and IV antibiotics.  They’ve placed me in a pressurized oxygen chamber 18 different times, for a total of 41 hours.  They’ve deflated my once-D cups to A cups, to alleviate all the pressure build up and skin tightness on the right side.  They’ve performed two surgeries on that area – inspecting it, cleaning it out, taking blood and tissue samples, moving the expander, replacing the expander with an implant.

And none of that was good enough.

Dr. Walsh has scheduled me for a third surgery this upcoming Wednesday.  She told me that we need to take the implant out. Once that implant is out, and the skin heals and settles, i will no longer be eligible for another implant – at least not on that side.  She told me that the next option involves a special reconstructive surgeon pulling muscle and tissue and fat from other parts of my body (back, stomach, and butt) to create a new “breast.”  Now it’s not just one part of my body that would need to heal, but up to four.  She told me that few surgeons have experience doing this; she is not one of them.  For this reason, it’s possible i would have to fly to another state for this procedure.  She told me that my insurance company has to pay for this, even though they might try to deny authorization at first, and i might have to fight them on that.

That’s a lot, all for a fake boob.

And i can’t help but beat myself up for making the vain decision that led to all this mess in the first place.  I didn’t have to choose reconstruction, and i certainly didn’t have to ask to go up a cup size during the expansion process.  I was being vain and greedy, and now i am paying for it.

And even with all this self-blaming, there is a part of me that is considering NOT having the surgery on Wednesday so that i can try to remain qualified for implants.  My skin tissue is literally TURNING BLACK AND DYING along my scar, and i still care about “looking like a womyn.”

I’m truly disgusted with myself, at this point.

(16-07-24) Realizations & Concerns

I’ve been home from the hospital for two days now.

Realization #1: Even I underestimated the sheer joy of being back in the space i have created for myself – a space complete with pets who love me and want to try to help me heal, 1200-thread count sheets, an oversized bath tub with a dozen essential oils and bubble bath options, and roommates who are compassionate and genuine and dedicated to my recovery.  Several times these past two days, i have found myself tearing up over this realization.

Realization #2: I might actually die.  I’m not trying to sound morbid, and i’m not giving up this fight.  But on Friday night, i was sitting on a fake grass patch in my backyard, petting Bowie, listening to the wind blow, and staring mesmerized at how the street light contrasted the black sky with the the yellow flowers on these two trees, and it hit me: Tarah, you might not make it.  I didn’t cry (like i’m doing now).  I didn’t get angry.  I just accepted this truth that steamrolled into my mind and tried to memorize that moment, with the wind and the blackness and the yellow flowers and the heat of the night and the fur moving under my hand.  I’m not sure if i had previously accepted this possibility on the level that i did Friday night … but something about that moment definitely felt different.

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Realization #3: I forgot that i should be taking medical marijuana.  After my several rounds of kind-of-failed experimenting with the drug, i decided to stick to cannabis that only had CBD compounds.  The CBD compounds are the ones linked to (1) pain relief and (2) shrinking cancer cells.  I was ingesting CBD oil daily for a couple months, until i ran out.  Shortly after that, i was admitted into the hospital, and – since July 7 – i have been prescribed to take 10 mg of oxycodone and 650 mg of acetaminophen every 4 hours, every day, for the past 3 weeks.  I have seriously been stressing out about consuming this much of an addictive pain medication.  There are times when i try to skip doses – like before bedtime, or during conference workshops in Tucson last weekend, or prior to driving to the hospital for my treatments … and in all this time, i completely forgot about a much better, much SAFER option: CBD cannabis.  Thank you, Azure, for reminding me about this today.  I will be making a trip to the dispensary within the next 24 hours.

Concern #1: Well, it was about the possibility of becoming addicted to oxycodone, but Azure helped turn this concern into a realization.  All good here.

Concern #2: Work.  Always work.  I checked out of the hospital so that i could attend a professional development conference in Tucson from July 16-20.  My doctors were not happy about that; in fact, they threatened to tell my insurance company that they didn’t authorize my release, which would have made me liable for the whole bill.  I left anyway (and they were bluffing).  I knew i wasn’t healthy and strong enough to leave the hospital, drive to Tucson for a conference, and then spend Monday and Tuesday driving back and forth from Tucson to Phoenix like Mrs. Fucking Doubtfire, trying to be in two places at once.  I did it anyway because my bosses are assholes, and they don’t care that i have cancer, and they don’t care that i have staph infection, and they don’t care that i’m struggling with my health right now.  All they care about is the burden and inconvenience and financial losses i’m costing them.  So i went to that conference, then drove back to Phoenix and readmitted myself into the hospital as soon as i finished my last conference workshop.  Now, it’s Sunday.  I’m expected to return to work tomorrow.  Dr. Walsh made me promise that i wouldn’t go back while i still have this drain in me, due to my high risk of infection, and the drain isn’t expected to come out until Monday or Tuesday.  She also said she doesn’t want me going back to work for another week.  … but i have already missed a week of work, and these kids are not learning what they’re supposed to with subs everyday, and these absences are further proving to my bosses that i am not capable of doing my job anymore, and my last paycheck was $400 short because of my hospitalization, and my next paycheck will be even worse if i miss another week, and i keep dipping into my savings for medical expenses so i only have $1300 left in my savings account, and i have to hire a lawyer in the next month or else i am going to miss my window of opportunity to sue ADJC for discrimination … and i really don’t know what to do.  I know what everyone keeps telling me to do: focus on my health.  Of course, that makes the most sense on paper.  But in reality, i have to factor in bills and health insurance and quality of life, and all that makes the decision less obvious, less cut and dry.

(16-07-22) Discharge Instructions

I managed to convince all three doctors to approve my discharge, under some very specific conditions:

1. I agree to return to the hospital daily (weekends included) at 3:30 for antibiotic infusions.

2. My home environment is sanitized prior to my arrival.

3. I strip my drain three times a day and change my dressings every day.

4. I continue hyperbaric treatment on Monday.

5. I do not go to work until Dr. Walsh clears me, which will be in about a week.

I agreed to everything. #5 will probably get disregarded at some point, but I will follow through on my promise not to return to work with a drain in, which I will have for at least 3-5 more days.

(16-07-21) Hospital Stay Day #11

Last night, the nurse got the doctor to up my Ambien dosage, then put a sign on my door so that I did not get disturbed.

I slept almost nine hours.

Dr. Walsh was here bright and early, telling my sleep-crusty face that she wanted me to stay in the hospital until Monday, and she was not clearing me to return to work until my drain could come out. When she left, I put my blanket over my head and bawled. Poor RN Kara. She was just coming on shift as Dr. Walsh was leaving my room. I refused to accept my breakfast tray, ignored her attempts to question me, and responded to her request to check my vitals by sticking out my arm from under the blanket to give her just enough skin to check my blood pressure. She left me some Percocet when she saw my head bobbing up and down under the blanket in response to her question, and then she retreated, closing the door to allow me the space to continue crying freely.

I don’t see how anyone could think this environment will help me heal faster.

I cried and slept more until well after 10, when transport came to take me to hyperbarics. I tried walking quickly and angrily, then put myself in check: This guy from transport doesn’t deserve my shitty attitude. I changed gears and struck up a conversation, learning in our quarter-mile walk all about the cystic fibrosis that both he and his older brother have, and how different their experiences have been. Thank you, Nathan. You reminded me this morning to stop feeling sorry for myself.

From there, I went from self-pitying to … well … feisty.

At hyperbarics, I told Dr. Dhillon that I was leaving tomorrow, regardless. He gave me a look; I gave him a look back.

When transport arrived, I told her I was walking. She insisted I sit in the wheelchair; I flat-out refused. While she talked to hyperbarics staff about following policy and then made subsequent phone calls to her supervisor about my refusal to comply, I danced all around the tiles, then did a few lunges. When she hung up the phone, I smugly said, “Can we go now?” Again putting myself in check, I quickly softened my “I told you so” attitude by striking up a conversation with her about her family.  In the quarter-mile walk back to my room, I learned all about her dad’s esophagus cancer, her mom’s uterine cancer, and their 43-year marriage that managed to survive it all.

Back on my floor, the ID doctor was waiting for me. I was feisty with her, too, especially when she said some things that directly contradicted what hyperbarics staff had JUST told me fifteen minutes prior. Dr. Echevarria left kind of frustrasted, which only fueled my fire. When I walked into my room and saw a standard lunch tray, I walked it out and said to the nurses, “I purposely didn’t order breakfast or lunch, but they keep bringing me food anyway. Is there a way we can stop them from bringing me food I am not going to eat?” Poor Kara and Stephanie. They took my tray and agreed to let me walk myself down to the cafeteria … So with my cash in one hand and IV pole in the other, wearing my purple hospital gown and matching purple hospital socks, I took myself to the cafeteria, got myself some lunch, walked out without paying for it, and brought it back up to my room to eat. Later, with a full stomach, I called Dr. Walsh’s office and told Angie, “I’m calling to start the process of bugging Dr. Walsh about releasing me tomorrow. I want to go home. Tomorrow. What do we need to do to make that happen?”

And now it’s 4:58. I’ve cried, sulked, argued with doctors, antagonized people on purpose, and stolen food, and I think i’m finally done being feisty…so i I am going to take a nap, knowing with absolute certainty that as soon as I wake up, my feisty attitude will be right back on board with me, annoying everyone around me until they all just give up and let me go back home.

(16-07-20) Positive Attitude

Yesterday, as I was sitting in the pre-op room waiting for a surgery that was very similar to the one I just had a week ago, I broke. The tears fell – silently at first, but soon accompanied by sounds I tossed into a pillow to hide from the hospital staff. I wasn’t scared. I wasn’t lonely. I was ANGRY.

I really haven’t experienced much anger throughout all of this. There was no, “Why me, God?” or “I’m so healthy; this really isn’t fair!” or “Couldn’t the universe have waited another 20-30 years before dumping this in my lap?!” No, anger has not played much of a role in my processing … but every once in a while, when I am trying to cross through another cancer obstacle, I find myself thinking of Maya, and I get angry.

Maya. I’ve barely mentioned her at all in these six dozen blog posts, which is ironic considering she is the reason these blog posts even exist. I never planned on going through treatment for cancer. My intention was to tell no one, continue living life until the cancer started to take over, and then just suddenly move away (without telling anyone) to go through the dying part alone. I just wasn’t eager to spend a year going through chemo and radiation and multiple surgeries and ongoing setbacks, just for a 48% chance of making it to my 40th birthday. But Maya … She convinced me to fight the cancer … and she convinced me to be her girlfriend again … and she convinced me that we would have a future together with foster kids and pets and family vacations, if only I would agree to FIGHT. And I capitulated. And then she bailed. And I have barely talked about it with anyone because the pain is crippling, but the anger is WORSE. See, the anger creeps up behind me in these occasional sneak attacks, and I never see them coming until I find myself sitting all alone in a hospital bed or a parking lot or a chemotherapy Lazy Boy, crying uncontrollably about the latest obstacle in my path and always, always remembering Maya.

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Sigh…but I can’t think like that because it doesn’t help, and it certainly doesn’t get me any steps closer to winning this battle that I, essentially, agreed to fight in. So I pack up my anger and my thoughts about Maya, and I kick that box to the curb while pushing myself to stay positive, stay grateful, and stay strong.

(16-07-20) Sweet, Sweet Boob Action

Last night, I let an older, married womym touch me. She had me dress up in clothes just for her. She shackled my legs to the bed. With my consent (see, Bill Cosby? totally doable!), she lavished me with drugs that warmed me, calmed me, then soon knocked me out. I don’t know everything she did to me while I was asleep, but upon waking, my body hummed in certain places, and that humming confirmed one undeniable fact:  Last night, I clearly got some sweet, sweet boob action.

(You’re welcome,Tyler.)

I was admitted back into the hospital last night. The cellulitis/staph infection still hadn’t cleared; plus, it was oozing, aching, and purplish in color. Hyperbarics staff tried to put me back into the hospital on Friday, then again on Monday with the additional urging of Dr. Dhillon, who is the Hyperbarics Medical Director; and Dr. Yah, who is both married to Dr. Walsh and a fellow coworker at Forma Plastic Surgery. Each time, though, I stood my ground, and they found it difficult to win with me.

But in the end, they brought out the big guns: Dr. Molly Walsh herself. She answered my questions, leveled with me, and made it clear that she wasn’t asking permission: she was going in. That was at 2:00pm. At 4:30, I was in her operating room, watching the bright room fade into dark tranquility.

Here’s what I know:

  • The skin in my right chest area is so thin, so tight, and so damaged by radiation that it can’t heal itself. It’s a bunny breeding ground for infections, and then the bunny community forms a bully circle around its victim, refusing to allow any outsiders to come in and help defuse the situation. This happens to many breast cancer survivors, especially those going through reconstruction as part of their journey.
  • From Thursday- Tuesday, Antibiotic Zyvox snuck in through the front door and dismantled one of their weapons: the Fever. The Tactical Department was grateful … but also a little disappointed; it held the apparently incorrect assumption that Zyvox had more tricks up its sleeve.
  • Amputation is, at this point, a very real threat, and she lurks in the shadows like a Peeping Tom, just waiting for the perfect time to pounce and make her move. I already lost the original appendage during a battle back in November. Doctors did all they could then but eventually replaced the severed body part with a prosthesis that later led to making heads (men’s and womyns’) turn.  Unfortunately, the body didn’t respond so well to this foreigner (she’s a bit judgmental, unfortunately), so she allowed this battlefield to become overrun by germs and sickness, while driving out any local businesses that could have been resources later.
  • When Dr. Walsh operated yesterday, she removed the expander, cleaned the insides, and then thoroughly searched for pus pockets. Had she found pus pockets that were multiple and/or entrenched, she would have gone no further; she would have removed the expander, put nothing in its place, allowed the skin to close in on itself, and made a mental note to process with a devestated, bawling patient in a couple months as to why reconstruction on the right side can’t/shouldn’t be done.
  • A medical alert card sitting in my room indicates that I do, indeed, have a silicone, memory gel in there – crisis (temporarily) averted.
  • I am hoping to leave the hospital by Friday. Dr. Walsh and Dr. Dhillan have made it clear that I can go home once the wound is draining properly,and the swelling has gone noticeably down.

 

(16-07-17) Health Status

I wish I could lie to all of you and say I am feeling fine. Even better, I wish I could be saying those words and have truth behind them. The *real* truth, though, as I see it is this:

1. The hospital staff should have stepped up, processed some extra paperwork, and sent me home with IV antibiotics. Since this didn’t happen (I blame the ID Department), I am currently taking one oral antibiotic that is definitely strong – but seemingly ineffective in addressing my possibly-MRSA-staph-infection.

2. The good news is that I don’t have fevers right now. I brought a thermometer to my work conference in Tucson and have been checking multiple times per day.

3. The bad news is that there’s really no more good news. My right breast area is still reddish-purple, inflamed, and hot to the touch. I’m still leaking fluid by the area that has now been stitched up thrice. I still feel shooting pains in that region, to the point where I can’t get to my hotel room fast enough to down some Percocets … and I don’t even *like* pain meds.

4. When Lori from Hyperbarics emailed Dr. Walsh a picture of what my infection looked like on Friday, Dr. Walsh was trying to get Lori to convince me to readmit myself back into the hospital. Apparently, she wasn’t even aware I had checked out the day before. I refused. And now that it’s been a few days, I am starting to get a little nervous about what Dr. Walsh’s reaction will be tomorrow … ‘cuz truth be told, even when drained down to a sad set of A cups, these titties ain’t lookin’ so hot…and the girl sportin’ them ain’t feeling so hot herself.

(16-07-14, #1) Ongoing Hospital Updates

NOTE TO READERS – Going forward, I will be writing all hospital updates on this blog entry. Each time I add something, I will change the date or the number after the date to reflect that I made a revision.

7/12 @ 12:22 am – I was feeling optimistic because I went all day on the 11th with a temperature no higher than 99. That holiday ended just now: 102.0. That likely kills my chance that they’ll let me go home today.  ***  This pain is similar to how I felt a few days after my mastectomy. I feel like someone sliced me open with a knife … Oh, wait; they DID.  ***  I love the SCD (Sequential Compression Device) they put on my legs to stimulate blood circulation and prevent blood clots. Is that weird?  *** RN Veronica stole her 3-year-old son’s tablet so that, during her shift, I could watch Netflix on a bigger screen. I don’t feel guilty about it.  *** I thought Morphine was supposed to knock a fucker out. How am I still up???

@ 9:07 am – I just debriefed with Dr. Sabeeh. He took 200 and 240 cc’s of saline from the left and right expanders, respectively. He gave my insides a deep clean, and he reported finding no pus anywhere around the expander. He said that once I make it 24 hours without a fever, he can start the process of getting me discharged. My release also depends on my blood culture lab results, for that might require changes in my antibiotics, antibiotics that may or may not be available to be sent home with me. He’s going to get with Home Healthcare today to try to arrange sending me home with one of those portable IV machines. *** Morphine makes me itch! I had to lather up my skin and fingernails with shea butter this morning, just so I didn’t scratch my skin off into a raw, bloody mess. I told them to go back to Percocets for the pain. I haven’t had Morphine since midnight; not only was I unable to sleep, but I am STILL SCRATCHING nine hours later.

@ 1:32 pm – snippet of a conversation between me and the Infectious Diseases doctor:

IDD: You’re still running fevers, so let’s wait a few more days for the culture results to come back, and then we can discuss releasing you.

me (squinting in annoyance, with a my lips drawn in a tight line): I have been here since Thursday. I want to go home with IV antibiotics.

IDD: Well, Infectious Diseases isn’t going to let you go home with a fe—….

me: Let me just stop you right there. No one can force me to stay here or tell me I CAN’T leave. Now, I understand I need to make it 24 hours without a fever, and I am willing to make compromises … but in the end, I can leave whenever I want.

That changed the tone of the conversation pretty quickly.

@8:50pm  – I just got hives all over my body, and my temperature is creeping up. They had to inject me with Benadryl after giving it to me topically. *** On a positive note, I watched 500 Days of Summer for the 500th time, and it was just as good as it was the 1st time I saw it. ***  I have now finished my 5th HBO treatment – 5 down, 25 to go.

7/13/16 @ 5:35am – Well … My bed and the hospital gown that I have been wearing for about 5.5 days now are completely drenched in sweat, my stomach is puffed out like the starving children’s commercials, and the dark circles under my eyes are officially bigger than each eye itself … BUT. BUT. … I finally made it through a night without breaking out in a fever. My last fever was officially more than 24 hours ago. Dr. Sabeeh, I hope you’re mentally prepared for the debate you’re about to have thrust upon you, for I am: it’s time for you to let me go home.

@ 6:15pm – I celebrated my miniscule health improvement by exercising today. Still hooked up to my IV antibiotics, I did lunges out my door, around the pod, to the elevators, and back. “Look at her go!” one of them chuckled. “She’s making us look bad,” another one commented (to which I assured her that she was already busy enough, by simply being an RN in a hospital, whereas I had endless hours to amuse myself). I did squats, too – two sets of 36. When my stretcher arrived to take me to hyperbaric therapy, I simply said, “I’ll be walking today, in case you want to ditch that stretcher for a wheelchair and just walk beside me;” we walked 1/4 mile there and 1/4 mile back, with her pushing an empty wheelchair.  I amuse the hospital staff here, with my insistence on getting light exercise in lieu of the anti-blood clot shot they tricked me into getting the first two nights I was here.  *** One of the nursing assistants hooked me up with baby wash so that I could handwash my hospital gown in the bathtub, and a womyn on the 3rd floor threw it in a dryer for me, while i waited in a binder and hospital underwear.  I’m pretty sure that was the first time in my life I wore the same clothing for five days in a row; it had blood on it and reeked of sickness and Vancomycin. Not my most attractive moment.  Then again, neither is this bathroom. (If you look closely, you’ll see the fine handiwork of Monday’s nurse, Rachel: She used waterproof body tape to fasten the showerhead to the rod so that I could actually take a shower standing up.)

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*** I found out today that my staph infection could be MRSA. They’re still analyzing the culture sample in the lab but should know for sure by mid-morning.  I let Dr. Sabeeh convince me to stay in the hospital for one more day. He wants to be 100% sure that he’s sending me home with the right antibiotics, but he needs to wait on the final results from those cultures. *** My doctor thinks I am crazy for pushing to go back to work on Friday. He doesn’t understand the extent to which I am in survival mode at ADJC. He keeps making these sweet-in-a-clueless-way suggestions like, “Maybe if I just *talk* to them and explain what’s going on with you….”  I get it. Good, compassionate people have a hard time remembering how many bad, heartless folks there are in the world today. *** I’m looking at the clock with a grin on my face; by this time tomorrow, I will be HOME.

7/14/16 @ 5:55pm – Five hours late and two hissy fits later, I am officially discharged and on my way home.

(16-07-11) Today’s Surgery

Forgive typos and confusing statements; I am still waking up from the anaesthesia.

Surgery was at 11. I haven’t debriefed with my doctor yet, so I am not 100% sure how everything went. I *think* they opened me up, cleaned all around the expander, added a drain (remember those from my mastectomy? They’re baaaack!), and stitched me back up. They also drained 200 cc’s from both breasts; the right one needed less pressure and tightness, and I begged the doctor to keep both breasts as even as possible.

That’s all I have the energy to share right now…just wanted everyone to know that I made it through the surgery without any major complications.

(16-07-10) Hospitalization Extended

My wound broke through the stitches and reopened. Dr. Walsh just called me – on a Sunday, when she is out of town, mind you – to talk to me about this. Basically, since radiation literally burns my skin, this skin shrinks down to the exact size of the expander and leaves no wiggle room. It ends up getting so thin that it tears as easily as paper might, which is why even closing the wound with stitches doesn’t always work.

Here is the game plan, as we know it:

* Tomorrow at 11:00am, I go under for a surgical procedure. They are going in to inspect the area and then hopefully do nothing more than clean the wound, swap out the expander for a smaller one, and stitch me back up. If they find pus when they go in, that changes everything, and I might end up having to get the expander removed … and the worst case scenario stemming from THAT decision is that I can not get reconstructive surgery on that side. PLEASE. GODDESS. NO.

* I continue to get IV antibiotics three times a day – a higher dosage of Vancomycin (you know, the one that causes Red Man Syndrome) and a new one: Zosyn. Dr. Walsh is going to talk to the hospital and see if there is any way I can be sent home with IV antibiotics, to decrease the number of days I would have to stay here. PLEASE. GODDESS. YES.

* I will continue daily HBO treatments, even after I am released from the hospital. I need a total of 20 in a row. So far, I have completed 3. My job is so inflexible that they won’t let me leave work early to go to chemotherapy, but *this* treatment team is willing to come in on WEEKENDS, as well as EXTEND their weekday hours just to make sure I can get in for sessions. ADJC’s HR staff should take some goddamned lessons from this department on how to be fucking human beings in times of a crisis. It *can* be done, ADJC. I promise. I see it every week, with people who AREN’T you.

* This whole situation changes everything as far as my reconstructive surgery is concerned. Pending I don’t lose the right side completely, my surgery will now get bumped up a few months earlier than planned, to right after my HBO therapy ends. That part is still up in the air.

(16-07-10) OVER My Hospital Stay

To the entire staff at Banner University Medical Center:

Healthy diet. Adequate sleep. Moderate exercise.

No matter what the trends of the days are saying about how we should live our lives, the three staples mentioned above have been pretty consistent throughout the decades. We don’t always agree on the details of these staples, but everyone, at least, recognizes their importance.

Unless, of course, you work in a hospital.

HEALTHY DIET

1. Vegetarian entrees should not be limited to veggie burgers (fried), pizza (also fried), and salads (that’s an appetizer, not a meal, especially when there is no protein in it).

2. Cancer patients shouldn’t be getting teas with aspartame, ginger ale with high fructose corn syrup, and juice with phenylalanine in it.

3. Dumping some canned, unseasoned black beans into a bowl is also not a meal … and by the way, the beans need a rice component in order to complete the protein compound that a vegetarian needs.

4. You were on to something when you added hummus to your menu. Too bad you thought the key was to dump a bunch of garlic powder into it and call it a day.

5. Why are you serving canned peaches during a month when peaches are in season and literally being grown on a farm in a neighboring town?

6. Why are you serving canned fruits and vegetables at all?

7. I put my anemia in check my senior year of high school … but after being here for just three days, I now have to take iron supplements twice a day. Also, my potassium levels are critically low, so you’re giving me a supplement for that as well. You know an easier fix? Nuts and a banana each day. Problem solved.

ADEQUATE SLEEP

Seriously. The 7-9 hours of sleep each night is, at this point, a completely undisputed standard. So WHY ON EARTH do you think it’s okay to wake me up almost every hour to take blood, check my vitals, flush my port, or dose me with meds? I understand all these things are important. You know what else is important? R.E.M. cycles. I haven’t had a single one since I was admitted. #truth

MODERATE EXERCISE

Not only is gym time off the table (no gym = no gym time), but you don’t even let me walk to any of the tests/treatments I need to go to. You were showing up with STRETCHERS for the first two days, until I complained enough times to get “upgraded” to a wheelchair. A wheelchair, for crying out loud. I am not handicapped. I am a little weak, but that’s only because you’re making me undernourished and sleep-deprived. Not only CAN I walk; I SHOULD be walking, many times throughout the day. But no. It’s beds and wheelchairs and oxygen chambers for me … and, to add insult to injury, you stick me in the stomach with a very painful needle that injects some preventive anti-blood clot medication into my system. You know what would prevent blood clots from forming in my system? EXERCISE.

Fuuuuuuck. Have I really only been here for just under three days?!?

 

Regretfully,

one of your patients on the 9th, then 5th, floor

(16-07-09) A Hiccup

See, here’s the thing: When you have cancer, feeling shitty becomes your new normal. Each day comes equipped with an assortment of ailments and symptoms – some carried on from the day before and some showing up with the latest sunrise. And I have to balance what to take seriously and what to take with a grain of salt.

Unfortunately, I have never been particularly adept when it comes to balancing anything.

On Thursday, I was admitted into the hospital for an infection. I first started showing signs of this infection on Monday … but I didn’t want to take an entire day off of work for one appointment, so I tried to tough it out and address it myself. By Wednesday, I had a temperature of 102.9 and an oozing open sore on a very red, very inflamed, very tight-feeling expander. Before I went to bed, I emailed Dr. Walsh a picture of my right breast and the accumulating list of symptoms, which included rising fevers, shooting pains, and tingling in my right shoulder/arm.

 

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Dr. Walsh’s office opens at 9. By 10:05, I already had Angie, her assistant, emailing me at work to tell me that I needed to go in TODAY. Dr. Walsh was out of town, but she had seen my email and made arrangements to have her colleague, Dr. Sabeeh, see me at 3:30. I slipped out of work early and headed over.

By 4:28, Dr. Sabeeh had drained fluid from my expander, stitched up the open wound (4 stitches), and convinced a very reluctant patient to agree to be admitted into the hospital. While he called and made the necessary arrangements, I ran home to feed seven pets, eat my leftover Chinese food, and pack a bag that included my own hospital gown, Wizard-of-Oz-like red sequined slippers, and four books. Priorities, right?

I spent the first night at the hospital realizing how spoiled I have become in regards to hospital stays (okay, in regards to EVERYTHING, but right now we’re just focusing on hospital stays!). I was put in a SHARED room, on a floor where no one asked if I needed anything (you know, like a toothbrush…or a meal) and where my medical equipment could be beeping for 15-20 minutes, and they STILL wouldn’t come by to address it. (I just ended up pushing a bunch of buttons until I figured out how to (1) adjust the volume and (2) temporarily silence the warnings myself.)  I got to listen to my hospital roommate have a conversation with a friend on speaker phone about how her boyfriend was getting his dick sucked by someone else; the friends decided that the best way to handle this betrayal was to kidnap the side piece and rough her up a little. I literally had to bite my tongue to refrain from telling them how ridiculous their reaction and plan were. In the morning, when I asked how to go about ordering a meal, I was told that I missed the time frame for doing that, so I would be getting a standard tray, which ended up being rubbery french toast, unflavored oatmeal, coffee, milk in a paper carton, and orange juice made from concentrate. I drank the juice, ate four bites of the food, and then decided I would just take my hanger out on the doctor trying to tell me I might not get some of the treatments that Dr. Sabeeh initially recommended.

Luckily, Dr. Sabeeh and Dr. Walsh work in Scottsdale, and they are probably quite used to high maintenance patients. As soon as Dr. Sabeeh learned that I was on the 12th floor, he made arrangements to have me moved to the floor that had a Womyn’s Specialty Unit. Own room, with a view. Nurses and techs who stopped what they were doing to welcome me when I was wheeled in. A toiletries/socks/underwear gift pack provided within minutes. (For some reason, I *love* hospital underwear.) Hotter nurses. MUCH BETTER.

So… I have been here for over two days now, and here is what I know:

* I have cellulitis, a serious bacterial skin infection that is being treated with two different types of IV antibiotics.

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* One of those antibiotics, Vancomycin, causes me to have a reaction called Red Man’s Syndrome, so they have to pre-dose me with Benadryl and run the IV at a slower rate.

* My chest x-ray came back normal, so they have no idea why I have been coughing since January. I saw a pulmonologist yesterday, and he put me on some new medication to see if my problem stems from acid reflux.

* My ultrasound came back normal, which means I probably won’t need to have a surgery where Dr. Walsh removes/replaces my right expander.  Dr. Sabeeh had mentioned this possibility on Thursday, and I have been stressing about it ever since. I have no FMLA time and only two days of accumulated sick leave.

* For as long as I am here, I have daily 2-hour sessions of hyperbaric oxygen (HBO) therapy. Basically, they put me in this clear, pressurized chamber, and my body goes through this experience similar to deep-sea diving. When I “go under,” my body gets three times the amount of oxygen that I would normally get at sea level. The purpose of oxygenating someone’s whole body is to treat (1) serious skin infections and (2) wounds that won’t heal because they got damaged by radiation therapy – both of which are true in my case.

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* I’m also getting daily breathing treatments, which i’m sure do absolutely nothing.

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* Despite two days’ worth of antibiotics and HBO therapy, I continue to spike fevers multiple times per day. As a result, I am scheduled to meet with someone from the Infectious Diseases Department to see if there might be something else going on with my body … you know, in case all the current stuff just isn’t enough.

* Oh yeah, and I am meeting with a nutritionist tomorrow because blood work confirms that my anemia, which I haven’t seen since high school, has returned.  I already knew I was not getting enough protein; this hospital doesn’t have a lot of healthy, vegetarian, protein options.

I’ll keep everyone posted as I learn more. I am HOPING to be out of here by Monday, but I haven’t made enough progress to know for sure whether this is a realistic goal.

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