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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Maybe this motel will burn down, too

Well, when it rains, it pours right? It’s been pouring for weeks, and the hill behind our house slid right through our back wall. Awesome!!

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I’m sure you can guess which house is mine. Anyway, the inside looks like this:

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So, we’re pumped about that. If you want to see my dad on the news, click here: http://abc7news.com/1746348/

We were all pretty devastated for a few days. Sure, it’s just stuff, but it continues to feel like the universe will not give us a break. The day after the mudslide, my brother and dad were staying in a motel and the fire alarm went off. My brother looked at my dad and said “Wouldn’t it be funny if this motel burned down?” So, that’s how we’re handling this.

I had my first clinic in 5 weeks (!!!!) today. Clinics are starting to revolve around long-term care – physical therapy, figuring out how to eat with a damaged gut, dealing with my hair and post-menopausal issues. I have developed joint pain in my hips, knees, and ankles. It’s the worst in my hips, to the point that when I wake up in the morning I can barely walk. It’s probably AVN, which is necrosis of the joints caused by long-term prednisone use. It’s not really fixable, other than with knee/hip replacements, which are obviously sub-optimal for a number of reasons. I’m getting an MRI at my next clinic in 2 weeks. Speaking of my next clinic, we are going to do my first test for immune reconstitution! Since I am now over 16 months post-transplant, 2 months off prednisone, and have not been in-patient in over 2 months, we think there is a chance my immune system is functional enough for me to stop being technically “immune compromised.” This would also mean I would be eligible for re-vaccination. I cannot wait. It scares me to be in the world unvaccinated, especially in an area with such a high rate of elective vaccination refusal (which is so dangerous not only for people who refuse, but also for everyone around them!! It makes me so upset).

Anyway, I’m chugging along. I didn’t fail my midterms, and I have a summer internship offer on the table doing cancer research in NYC. I haven’t decided exactly what I will do yet, but it feels nice to have options. Life continues to be confusing, a mix between Stanford and a world I feel tied to in so many ways. I feel both honored and angry that I am experiencing it all.

PS if you are a Stanford student in the Class of 2017 come check me out at FACES of our Year on Feb. 22! https://www.facebook.com/events/984969061603790/

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World Cancer Day

February 4 is allegedly world cancer day. I have never heard of this before so who knows if it’s real, but I’ll go with it. I spent today having lunch with friends and studying for a chem midterm. It was a pretty normal day. Every day, when I wake up my body aches from walking to my classes the previous day. Usually I’m nauseous or especially tired or having some other symptom that I have come to consider mild. This is frustrating.

But more importantly, these past few months have brought the loss of two children who wanted  so badly to live, probably more than I did. I saw Chy for the last time on Christmas day, and she died a few weeks later. She was still there on Christmas. So incredibly there. Stuck inside of a body that had utterly failed her. And I am so sorry. I wish I could’ve fixed it. Chylee is one of the reasons I am so incredibly adamant that “strength” has nothing to do with cancer survival. Chy was as strong and cheerful as it gets, more than I ever was in treatment. Chylee also had a lower risk cancer when she was initially diagnosed. The world isn’t fair. It sucks.

When Antonio died, I was in the hospital for a stupid cold. I was cared for by a nurse I didn’t know, and when I asked her whether I was going to be rounded on that day (it was mid-afternoon and I still hasn’t seen a doctor) she said that the doctors were busy because an onc patient had recently passed in the ICU. My heart dropped. I have never seen anyone endure so much for so long…it was a level of pain I will never put into words and that none of you can grasp unless you’ve seen it. So much pain. I am attending Antonio’s funeral in a few weeks. When I saw the announcement, I thought about checking my schedule and then I realized that it doesn’t matter. It is so confusing to be in the middle of Stanford worrying about my grades and summer internships when such a big piece of my world is suffering so severely.

To honor world cancer day I encourage all of you to stop romanticising cancer, to really sit with uncomfortable truth that it steals so much and in ways I could never have fathomed before I was thrown into this world. It feels so wrong to update you all with the truth that I am doing okay. Not great, but okay. Much better than the past few years. For now, okay is acceptable. Good days and bad, but not all bad days. Fewer good days than before cancer, but more than while I was in full-time treatment. Today this all feels especially heavy.

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Back to School

I made it! After 18 months (and 15 months post-BMT) I have moved back to Stanford. Being sick makes planning things so hard, and I wasn’t even 100% sure I was going to come back until I was actually packing my things. I still feel like the other shoe could drop at any minute.

I was very conflicted about coming back to school. I’m not in perfect health – I was in the hospital a few weeks ago – and people keep telling me to relax. First of all, I do not relax. But more importantly, I really needed to have a life again. Lounging around sounds so great when you are super busy, but having no direction was isolating and depressing.

Treatment made me nocturnal. Falling asleep at 2 AM was a good day (usually it was more like 3 or 4). Waking up by noon was an accomplishment. With this in mind, coming back to Stanford was scary. I scheduled all my classes for afternoons, but still, it’s awkward to be on a completely different life schedule from everyone else. Shockingly, the sleep problem I have been struggling with since the beginning of treatment has resolved itself in my first week of school. I think it’s because I’m tired after running around all day and excited to wake up in the morning. What a relief.

I’m about one month off of prednisone and so far, so good! I am doing a hydrocortisone taper to help my body’s natural steroids wake back up, since I was on prednisone for over a year. It’s been going really well – I am down to 17.5 mg per day (was on 30 when I started). I have about 5 weeks to go. My face is getting closer and closer to being normal again. They say it takes about three months to return to normal after being on prednisone, so hopefully I will get more and more beautiful over the next few months. I have a secret fear that I will be off prednisone and still horrified by the way I look, but I guess there’s always plastic surgery. In other good news, I was recently moved to once monthly BMT clinic! I have been going every two weeks forever, and having a once-a-month doctor’s appointment feels like a totally reasonable, normal person amount of doctor’s appointments. I am still immune-compromised and unvaccinated, but in about three months we can begin testing for immune reconstitution, at which point I will be declared normal, released from BMT care, and transferred to long-term oncology care. I’m not quite there, but I can see the light.

Here’s a picture of me looking kinda normal!

This time last year I thought my legs were a tree trunk and my NG tube was a snake

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My last day of prednisone

Today I took what will hopefully be my last dose of prednisone. My relationship with this drug has been horrible – in addition to the hot flashes, irritability, lack of sleep, weight gain, and puffy face, it brought with it a feeling that my life was not under my control. Of course, none of us really control our lives, and mine has been even more out of control since I was diagnosed with cancer, but the incredible side effects of prednisone remind you of this physically. All day, every day. In some ways, I felt that I was back in puberty – I did not understand or feel comfortable in my body, and I had no power to change this. I feel that this is not fair at all. Puberty was bad enough the first time, for God’s sake.

With every decreasing dose of prednisone, I have felt a little bit better. A little more hopeful. Today, along with my last dose of prednisone, I got some long-term follow-up results. They are nothing surprising, but sad nonetheless. Severe loss of bone density and muscle mass along with a deficit of several important hormones.  I am 21. I have to live in this body for the rest of my life.

There is also good news. My biopsy results showed that my hair follicles are in a “sleep-like” state because they are in shock after all my body has been through. With treatment, they should mostly wake up in the next 6 months to year. My organ function is good, my immune system is reconstituting, and my counts are stable. Last week, I got a bad viral cold and spent a few days in the hospital, but my body has been able to fight it reasonably well and I am recovering. For reference, when I got a cold during chemo, it devolved into pneumonia and I spent several weeks on oxygen. There is a light – not a return to my old life, but hopefully a jump toward a new normal.

I’m moving back to school in a little over a week and I’m scared and overwhelmed and excited and tired. Part of me wishes I was in better health, but the bigger part knows that I need more in my life than cobbled together part-time classes and jobs. I need a real life again, and I’m so excited to spend the last 2 quarters with my class before most of them graduate. Overall, my holiday season definitely beat last year at this time, when I was inpatient with grade 4 graft vs. host disease and panicking so severely about my illness that the doctor who rounded on me on Christmas exclaimed “We can’t leave you like this!” and promptly dosed me with 2 mg of Ativan (a benzo at about 4 times the normal dose).

Vittimbergas do Christmas ⭐️

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