Chronic Illness and Disappointment

This is something that I have debated sharing, because it’s hard to share the hard stuff, but I’ve worked too hard to keep this site honest and transparent to give up now.

I have been having a hard time coping. The way I got through treatment was by knowing that it would eventually end. The GVHD has not been getting better. In fact, it’s worse. It’s in my eyes, mouth, skin, and muscles. I can barely open my mouth, eat, or use my hands. I am miserable. I recently went way up on steroids (60 and 30 every other day), started a new drug for my skin called acitretin, and started doing UV light therapy (for my skin) and low level laser therapy (for my mouth). Between all of this, I am taking 15+ meds a day, using three different creams for my skin, and going to a doctor every single weekday (UV 3 times a week, laser therapy 2 times a week). I feel like I am having such a hard time existing that I am watching life pass me by. It is so hard to get through the day that there is no energy left for the things I used to enjoy.

At the same time, the hair issue has not been resolved. I have had three different opinions from three different dermatologists. Some of them think it’s permanent and some of them don’t. I feel pretty hopeless about it. It’s hard, because it’s a cosmetic issue so I feel like it gets pushed to the side as something that doesn’t matter. It does matter. I feel like I will never feel beautiful ever again.

I originally wanted to go on a trip at the end of the summer, but I cancelled it to come home and see my primary oncologist again. We are starting ruxolitinib, which I think has a good chance of helping me. But I am coming to terms with the idea that I will never be my old self again. I might have GVHD forever. I might always struggle to get through the day.  My hair will probably never grow back, and maybe I’ll never look in the mirror and feel positively ever again. There’s really nothing I can do about it, but that doesn’t stop it from hurting.

I am finishing up my internship at Memorial Sloan Kettering in this coming week. It’s been an amazing learning experience, even though it’s been really hard because of the GVHD. In some ways, I’m glad I pushed myself to do it. In others, I feel like it only made the differences between me and a normal person more apparent. As some of you know, I was recently accepted to Mount Sinai’s FlexMed program, which means I am admitted to start my MD in 2019. It’s possible that I will get better by then. It’s also possible that I won’t, and if that happens I have no idea how I would ever possibly get through medical school. Chronic illness is really hard – in a lot of ways it is way harder for me than being acutely ill was. I constantly feel like I am disappointing the people around me, but most of all I feel like I am disappointing myself. The reality is that I need to recalibrate my expectations to the body I am stuck in. But it’s hard letting go so many pieces of yourself, and it seems like the GVHD and lack of hair just keep taking more and more.

My dermatologist made me take this little survey about how my skin condition affects my life. Sooo that’s how that is going:


 

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Being Left Behind

It’s been a crazy few weeks. I started an internship at Memorial Sloan-Kettering on June 5. I also took my finals in New York during the first two weeks of working (s/o to the quarter system) and flew back for a weekend for graduation and a family event. In the last couple of weeks I have finally been able to settle into New York and I really like it here.

There is something interesting about being in a new place after this diagnosis. While it’s not a secret that I had cancer, these people don’t know me in the context of going through treatment. It’s a relief to be treated more normally. For the first time in a long time, the people around me are not acting like I’m fragile. This has brought out a new set of challenges, because the reality is that I am still fragile. I have been having a really hard time managing my GVHD lately. While it is somewhat controlled, I have not had a complete response to steroids and my eyes, skin, and mouth are still very irritated. For context, here is a picture of my hand and feet:IMG_0923.JPG img_08031.jpg

The GVHD is the worst on my hands and feet, which is unfortunate because this makes functioning pretty difficult. My eyes are significantly improved since getting my tear ducts plugged, but they are still irritated and light sensitive.

While I am keeping my care primarily at CHO, I have seen some doctors at MSKCC while I’m in New York. We are going to try some new things, including light therapy for my skin and some topical steroids. We are talking about an additional systemic immune suppressant, but it’s so hard to weigh against increasing my risk of infection.

I watched my class graduate from Stanford on June 18. It was two years to the day from my AML diagnosis. I didn’t expect to be so emotional, but standing in the stadium watching my class receive their degrees was really painful.

It’s almost like I’m processing all of this for the first time. For a long time I really tried to block out the worst of my feelings about getting cancer (remember the Zen space?). I’m sad that this happened to me, and I’m angry that I’m still suffering so much. I also have a lot of good in my life – being able to spend a summer away just two years after diagnosis is shocking. I’m turning 22 in November. 22 is not a number I ever imagined for myself. Making it to 21 seemed far-fetched for a long time.

I’ll end with some pictures of me having fun this summer (it’s not all bad, I promise).

I love @denna_mafie I love NY I love getting in fights at rooftop bars

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Stanford while Disabled

I try not to complain too much about my body not working. First of all, I think it’s pretty obvious that this sucks so it doesn’t really need to be said. Second of all, I don’t think about it all that much. One of my roommates asked me the other day if I ever just want to stay in bed all day because my body makes my life pretty hard. After thinking about it for a second, I realized that the answer is no. I sat in bed for a year and a half, and it sucked. I went through hell so that I could have my life back. At the time, I didn’t realize that the life I was fighting for would be so different from the one I had before. But it is what it is, and all I can do is make the best of it.

All of this said, there are definitely days that I am too sick to function. For this reason, I have accommodations from Stanford’s Office of Accessible Education. My accommodations are pretty basic – extensions when I need them, being excused from class for doctor’s appointments or illness, etc. For the most part, my professors have been very understanding. There is a department, though, that really seems to believe that students with disabilities should just give up on their lives. Chemistry.

There are 9 labs in my organic chemistry class. I made it to labs 1-7 and missed lab 8 due to a freaking transfusion reaction to IVIG. I was literally shaking, my kidneys were freaking out, I obviously could not go to chemistry lab. I emailed the professor and she told me that the lab would have to count as a zero, dropping my grade about 5%. I responded that there was no way for me to make it to the lab and this is why I have OAE accommodations. She responded that she was “starting to become uncomfortable with being able to say that you actually completed enough of the course.” To clarify, I completed 7/9 PSETs and 8/9 labs. I also took both midterms and will obviously take the final. She is uncomfortable. Sorry prof – I’m uncomfortable every second of my life.

I’m still responsible for every bit of the material I miss. I go to tutoring and office hours and study like crazy. I have been on the average for the course all quarter. She wants me to talk to my advisor. I will never be in a situation where I can attend 100% of a class. That is why I have accommodations. That doesn’t mean I don’t have to learn the material – it just sometimes has to be done in a different way. In the rest of the email, she basically told me to drop out of school.

I have never been so offended in my life. Not just for myself, but for every disabled student who comes in contact with the chemistry department. Obviously, I will escalate this situation. But I shouldn’t have to fight about it. I don’t want to. I just want to sit down and resolve the issue.

Sharing something like this is uncomfortable for me, because I don’t like to complain or throw people under the bus. But I’ve encountered several situations like this and I can’t be silent about it anymore. I am disgusted.

In other news, I have one week left until I leave to do cancer research this summer at Memorial Sloan-Kettering in New York City. God forbid I miss a single day of the internship, because clearly that means I should just give up on my entire life and sit in a room all day.

If you care about my health – I got my tear ducts plugged and it has been L I F E C H A N G I N G. I went from not being able to open my left eye (see below) to feeling almost normal! Also, this means that I can’t cry at all, which is fine because I don’t emote and couldn’t cry before anyway.

^check the cute closed eye

Two theses down!! Let's not talk about when mine's gonna happen ?

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^me being normal with two open eyes.

The GVHD is resolving in my skin and gut as well. I gained two pounds! Killing the game. I’m on 30 mg of prednisone every other day and 10 mg on the off days. As much as I hate prednisone, I’m not ready to taper because it really is helping. At the same time, I’ve gone back to being awake all night and being useless until mid-afternoon, which sucks. I have finally convinced my doctors to let me try some newer immune-suppressive drugs (ruxolitinib) and I’m hopeful that this will help me get off the prednisone. In the mean time, I’ll keep living my life even when professors tell me to give up on all of my life goals.

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Pulling it Together

I took the stupid prednisone. I stared at it for like three days before I did it, but the alternative was “die of GVHD” so I figured it was worth it. I have been ridiculously socially unacceptable the past few weeks between the skin flaking off my body, the gut GVHD making me eat like a weird four year old, and my eyes requiring heavy sunglasses and eye drops every five minutes. What can ya do. We played games of “visually impaired or too chic for you???” lmk what you think:

The prednisone is working. I sort of resent that it’s working, but it’s much better than the alternative. Hopefully we can start tapering at my clinic visit Thursday. The eye meds are also working and I am mostly functional, except when in the presence of bright lights. I have learned to learn by *listening intently* since taking notes is not really doing it for me. Shout out to me for learning anatomy, genomics, and bioethics while a little blind! Why does my body hate me!?! Somehow, this is all happening and I have been able to stay in school and do my homework. I can see better as the days pass, and I’m hopeful that this will continue so that my midterms will be legible.

In other news, I went to senior formal! I am not a senior but who cares! People keep asking me when I will graduate so here’s a PSA: I have no idea. Whenever I finish! I took four quarters off, but I also withdrew from 15 units while dying of cancer, so it really just depends on how heavy of a course load I can take throughout the next academic year and whether any of my other organ systems decide to spontaneously stop working.

Pic from senior formal:

Wearing 4 extra inches of heels and still can't compete

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7 more weeks of the year! Wish me luck that I will be somewhat healthy, pass all my classes, and make it to New York for the summer in one piece.

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Highs and Lows (Mostly Lows)

1 1/2 years post-transplant. 1.5 years of surviving – of learning that the hard part is living, not dying. I capped off 18 months post-transplant in New York City, my first plane travel since the horrific plane ride back from South Africa.

I came back to spring quarter ready to take on too much as always, but Week 1 has been a trainwreck. First, I ended up in the ED with severe eye pain only to be diagnosed with GVHD of the eyes. I had eye exams two days of the week, and lost both days completely due to the dilation required for the exams. On Thursday, I had an IVIG infusion, which I reacted to and thus was unable to finish. This is particularly annoying because I get high doses of benadryl to ideally prevent reactions to the infusion, so I slept the whole day and will have to sleep another whole day to actually get the infusion.

Thursday I also had an oncology clinic appointment. At this point, I have GVHD involvement in my gut, skin, eyes, and liver. I also have weirdly high levels of eosinophils in my blood counts, which may be due to GVHD as well. Despite my best efforts (this includes, I’m not kidding, a diet of predominantly full-fat Kraft Mac and Cheese, protein shakes, Coho caprese paninis, and gummy bears), I have lost 20 pounds since February. At this point, I have no option but to go back on prednisone. Devastated is an understatement.

I don’t know what to do – attempt to catch up in the courses I am already behind in as of week 1? Take a reduced course load? Withdraw and go home? All the options suck. I typed this from a dark starbucks, where I am wearing sunglasses because the light hurts my eyes. Someone hellppp meeee.

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Reasons to Decline Prednisone: Balance

Many of you may have heard of the infamous Ketchup Fight 2k16, in which I decided that I was no longer able to abide by the GVHD diet 100%. The diet involved canned fruit, plain meat (think turkey lunch meat), white bread, and plain spaghetti. You probably think you’ve had plain spaghetti before, but I’m talking P L A I N. As in no butter, no olive oil. Sticky clumpy “spaghetti” globs (if someone ever fed you that, go back and ask them why they hate you). After a while, I was allowed to add low seasoning chicken tenders (bless, right?) but without ketchup. Meanwhile, I was stuck in a never ending world of not being able to consume enough calories to sustain myself. I’d feel like I was chewing sod all day only to come up with a calorie count of 800. Not fun.

So, after awhile, I began to bargain. Ketchup with the chicken tenders, chicken noodle soup with vegetable broth, peanut butter on my white bread. Some people were horrified that I would risk my health for taste, but at this point food had become more than food for me. I felt inhuman, deprived of such a basic part of living. So I ate ketchup. I’m incredibly fortunate to have a wonderful oncologist who understands that quality of life is important.

So that brings me to today. I am having GVHD problems in my mouth and potentially eyes and liver (test results pending). I also have been newly diagnosed with psoriasis (how embarrassing is it that my first thought was ‘Kim K has that!’) My quality of life is still higher than it was on prednisone. The doctor I saw in clinic today (who is not my primary oncologist) wants to put me back on prednisone, but I am insisting that we try something else first. Ruxolitinib? Imatinib? There are options. I just can’t.

I never thought I would be someone arguing with doctors about my treatment plan, but I already have lifelong side effects from the year of prednisone (mostly osteopenia and potentially AVN) and I have to live in this body for the rest of my life. I’m also not a fan of the huge face. That balance is important to me. I take my meds every day, go to clinic appointments twice a month, see specialists and do mouth rinses and sleep nine hours and work hard in physical therapy. I’m also going to eat ketchup and do a summer internship in New York and keep my normal face, thanks. Even if that makes me crazy.

PS everyone should put cream cheese in their omelettes!!! Who knew

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Week from H E L L

On Tuesday, the sun had finally come out and I was starting to feel like the trauma of treatment was worth it. I was walking in the quad, on my way to my Comp Lit class, and snapped a picture of the palm trees above me:

After class, I was sitting on the Oval doing some reading when I got an email continued as part of a thread we have not needed for a long time: “your treatment plan.” The email’s preview had the words “You lab results from this week…”

I opened the email and saw the words every cancer patient fears so intensely there is no adequate description: “Your white count is high…not sure why…will follow the trend.” I burst into tears, sobbing in the middle of the Stanford Oval while tourists and students tanned and read beside me. I called my dad and he panicked with me: Where are you? I’m coming right now. I called one of my best friends and she raced over, parking illegally and earning herself a $45 parking ticket (sorry Amanda). My dad, desperate for information, decided to drive straight to CHO and literally track down my oncologist. Yes, he walked into the hospital and found my oncologist. By the end of the day, we had a bone marrow aspirate scheduled for the next day. I got tacos with Amanda and my sister, then went for a second dinner at an Indian place with some other friends. I didn’t get to eat for three months last time I was in treatment, remember?

So, the long story short is I got a bone marrow aspirate on Wednesday. I had a very hard time waking up from anesthesia, not sure why, and ended up in recovery for around five hours. I didn’t get admitted, but had to return to the hospital Thursday for an IVIG infusion, which I get about monthly to help my immune system. I usually don’t react to IVIG, but this time I did, chilling and shaking and again almost earning myself an admission. Between appointments, I slept in the granny flat where my dad and brother are staying since our house is red-tagged due to the mudslide. Friday, I got the call that my MRD is negative. I am still in remission. Then, I returned to school in time for my last Friday afternoon class.

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I’m sitting in the Stanford bookstore cafe, wondering how I will ever catch up from the week of school that I lost, if med schools will understand that classes can’t always come first for me, and whether the universe will ever cut me a break. I must’ve jinxed myself Tuesday, thinking this was all over.

 

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