My Stupid 22nd Birthday

Ok I turned 22 and the most annoying thing is having to answer people when they ask “What did you do for your birthday? Was it fun?” First of all, no, nothing is fun because my body hurts and itches like crazy 24/7. Pretty sure you could take me to a 5 star resort and I would still manage to have a bad time. Secondly, I spent it where I spend most of my time: at a doctor’s appointment.

The patience I have had to have with my body this past month has been heartbreaking. The tightness and fluid in my abdomen, back, arms, legs…basically everything…prevent me from even simple tasks. Taking a shirt off might take five minutes. I just have to remind myself to stay calm, to breathe, keep trying until I get it. But I’m physically losing abilities that I can’t power through. Nothing can make my arm bend if it’s glued shut with GVHD.

The decisions I have made about my care and my life this past month have been excruciating. What is a life worth living? How much am I willing to risk dying (of an infection from immune suppression) in order to find a treatment that offers some relief? I have learned that I’m willing to risk a lot, and that suffering in this way is not a life to me. I’ve been on IL-2 about a month and started imbrutinib a few days ago (after a long, long insurance debacle that literally should have been illegal). It is very hard to believe that anything will work when so many things have not…tacrolimus, sirolimus, prednisone, rituximab, infliximab, ruxolitinib, photopheresis.. I’m exhausted.

I spent most of thanksgiving “break” at good ol’ CHO because they decided to admit me at clinic the Thursday before break. I really can’t blame them. I’m starting to retain a lot of fluid, unclear why but probably just general inflammation from the GVHD. I gained 10 pounds in a week. All of the fluid makes it hard to breathe, and I can’t walk more than a minute before I’m panting. It is also pressing on my stomach, so I spit up like a weird baby when I try to eat. I am literally being tortured. We were able to get some fluid off while I was inpatient for 5 days, and I went home on oral lasix, but I’m still 35 pounds heavier than I was in August. While some of that is probably because I was underweight after not eating all summer with the mouth GVHD, I definitely have not gained 35 real pounds in three months.

I have no idea what my plans are for the next few weeks, months, etc. I don’t know if I even want to finish the quarter. None of it feels like it particularly matters. Unclear if I’m depressed or if I’m just having the logical reaction to my life sucking so much or both (probably both). Never in a million years did I think I would be doing WORSE at two years out than I was at a year out. The self pity is getting real strong. It’s Giving Tuesday – give to childhood cancer research, Be the Match, or the Leukemia and Lymphoma Society if you feel inclined.

Here is a fun picture of an IV mishap:

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Scary, Rapid Decline

My symptoms in my eyes, mouth, hands, and feet have continued to improve and they are essentially gone. I have a bigger problem, though. I have developed sclerodermic gvhd, which is essentially skin tightening. My skin has become thick, immobile, and tight on almost my entire body. My chest and abdomen are the worst, to the point that I am struggling to breathe due to the constriction.

This is really scary because I am already on two high-dose immunosuppressants – prednisone and ruxolitinib. Because this happened to me while extremely immune suppressed, the concern is that we will not be able to get control of the scleroderma and it will just continue to spread. Long death in slow motion – at least AML is quick about it.

For a beautiful, heart-wrenching depiction of GVHD, read this article: http://www.fredhutch.org/en/news/center-news/2015/04/tackling-graft-vs-host-disease.html. Unfortunately, this story hits close to home.

Now I’m sure your next question is “surely you aren’t still in school, right?” Well, sorta. I’m still at Stanford, but I’m on a reduced course load consisting of one d school class and units for my thesis. Just adding to the cute collection of W’s on my transcript – thank you cancer. As far as next quarter or even next week, I am taking things day by day. More like minute by minute. I enjoy my research and I like being at school. It is important to me to have something to wake up for every day. I want to hold onto my independence as long as possible. But every minute is hard – pain, itching, tightness. I am beginning to struggle with normal daily tasks like getting dressed, so unless this turns around I will probably take another leave.

As far as the plan goes – I started IL-2 about three weeks ago, but it takes 6-12 months to really work. We have deemed the ruxolitinib a failure, and I will be switching to imbrutinib, which is the first drug FDA-approved specifically for chronic GVHD. I have also been referred to a GVHD specialist at Stanford and we are in the process of setting up a consultation at Fred Hutchinson in Seattle, where many of the country’s GVHD experts are. I asked both my BMT doctor and my oncologist whether they had ever seen this before – rapid, new GVHD symptoms two years out while on high immune suppression. They said no. So we have no idea what will happen. There are still more meds to try even if these fail, but the options are getting slimmer. The other concern is that I will contract some sort of deadly infection due to the severity and length of immune suppression.

I also went to a retreat for young adult cancer survivors last weekend, and it was wonderful – in a painful, get-in-touch-with-your-feelings way. Since I am on the younger end of “young adult,” I was among the youngest of the group. This was nice, especially since being treated at Children’s Hospital meant that I was usually the older one (which is fine, but it was a nice trade). I was worried that I would hate it because frankly I am incredibly jealous of people who come out of cancer treatment with fewer complications than me. But turning these “people” from an abstract concept to real people made this easier – obviously, I wouldn’t wish this suffering on anyone, especially the wonderful people I met at this retreat. I still hate when people are like “they went through the exact same thing as you!!” because the reality is that they did not. But we all have stuff – visible and hidden – and I internalized that I am not the only person who didn’t walk away from treatment unscathed. Really, none of us did.

For now, moment by moment. I am putting one foot in front of the other, showing up to class and lab, working on my thesis, wondering if I will die, hoping the imbrutinib will work, too tired to think about what comes next if it doesn’t.

Here’s a picture from the retreat:

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Back to School

How weird, to be going back to school after watching a timeline full of graduations, trips, new jobs, and graduate school programs. I started last week, and it is bizarre. I watch the freshman in the quad or the older students going to campus events and think “was that really ever me?” I guess it was, though I only had a year or so at Stanford before I got sick.

I guess, if I’m being honest, the best way to describe it is mad. I’m mad that I have to be here – not because Stanford is awful or I don’t like my classes (I do), but because I have to be here. Because I didn’t choose this. And watching my friends get to choose the next phase of their life – whether that’s more school or work or a well-deserved break – is heartbreaking. I spent a lot of my time in treatment working to convince my friends that their problems are still valid, even if they aren’t “I might die of cancer.” But now, it’s really hard to listen to them complain about a job or a grad school assignment when all I can think is that I would give anything to have those options right now. I know this is a “me” problem, not a “them” problem, so I’m still figuring out how to handle it. For now it is lonely, really lonely.

With regard to my health, ups and downs. Lots of downs. I went to LA for the 5th and final week last week, and ended up at CHLA because I was having a hard time breathing. Just getting a nice tour of all the children’s hospitals in the country. I have a little pneumonia, but we think I’m on the right antibiotic now. My skin, eye, and mouth GVHD are significantly improved. We aren’t sure if it’s the prednisone or the ruxolitinib or the low level laser, but we’ll take it. My liver enzymes are also significantly improved – at my last check, my GGT went from 1,000 to about 600. Still super abnormal (normal is <50), but in the right direction. However, I am currently experiencing progressive muscle/joint GVHD, which basically means my skin and muscles are tightening to the point that I can’t reach my arms above my head, bend over, or turn my back. My dad and I brainstormed some potential careers should I turn into a complete fossil – so far the winner is renting out myself as a second person for the carpool lane. Also, I am INSANELY itchy 24/7 from the skin GVHD, which means I can enjoy essentially nothing and I get almost no sleep. This is pretty concerning, especially because I am on so many GVHD meds right now so I really shouldn’t be experiencing progression. So, we are adding another – IL-2. IL-2 actually helps T cells grow, but acts selectively on regulatory T cells, which work to quell the angry, GVHD-causing T Cells. The best part about IL-2 is that I get to administer it to myself as a daily shot. Yay.

In other news, I like my classes – a design school class about navigating the healthcare system, an upper division immunology class, and a gen ed intro to computers class (lol). Stanford hooked it up with a sweet studio apartment. I was officially accepted to the Honors Thesis program for my major (Human Biology), and my project is an extension of my work from last year, which I am pretty excited about. I am building on some recently published work that was funded by the St. Baldrick’s Foundation. The other day, an article about it came up on my facebook timeline, which is pretty cool: link.

I reached my 2-year transplant anniversary on Sept. 24. To say I am disappointed would be a massive understatement. I thought I would be healthier by now, I thought I would have much closer to a normal life. I had my two-year BMT follow-up, which means they tested a bunch of stuff in my body (bone density, heart and lung function, x-rays, etc.). Everything basically sucked, though my bone density somehow increased (?!) from 2.4 standard deviations below the mean last year to 2.1 standard deviations below the mean. Killin it. Childhood cancer awareness month ended yesterday, but I will continue to be aware every moment of every day.

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little 2-year rebirthday cake

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(pre-decoration) munger mansion

 

 

 

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Hello. I went to beverly hills

TL;DR: I have been really sick and am hopefully getting better. I’m raising money for Stupid Cancer here.

I have reached insanity in dealing with this GVHD. I got home August 12, after a summer during which I got progressively more sick until I ended up in a really scary place. I lost 20 lbs, had such severe GVHD on my hands and feet that I could hardly function, and reached a GGT level of 1000 (liver function level, normal is <50). With systemic GVHD in my eyes, skin, mouth, and liver, I felt like I was literally dying. Not only did I feel this way, I probably actually was.

Being away from home made treatment difficult. My primary care team was still at CHO, but I was seeing doctors at MSKCC. The MSKCC doctors were hesitant to make changes, because they knew I was only there a short time. But I needed changes. I was getting sicker and sicker, to the point that one day I called my dad and told him that I felt like I was dying and no one was alarmed except me.

My wonderful grandmother came to NYC from Boston and helped me finish my internship, pack up, and get home to California. In retrospect, I’m not sure why I finished. I think because it is still very hard for me to admit that I am so sick. I still have the same goals I had when I was healthy, but my body is much less cooperative.

I’ve been home a few weeks now, and the improvement has been slow and steady. I agreed to return to extremely high dose steroids two weeks before my internship ended (so about 4 weeks ago now) because I simply could not bear to live with the symptoms I was having. The steroids have helped, though they have also brought the expected side effects (mostly lack of sleep, extreme hunger, and a huge, puffy face). The hunger thing is okay, because I was getting a little scary thin, but the sleep is frustrating and the face is, in a word, dysmorphic. I’m 21 years old and I’ve never felt worse about the way I look. While people insist it doesn’t matter, the reality is that is does. I deserve to feel comfortable in my body – physically and emotionally – even as a cancer/GVHD patient.

Since the chronic GVHD started in March, there has been a lot of back and forth about a drug called ruxolitinib. My doctors at CHO were hesitant because it is so immune suppressive. By June, they agreed the risks were worth it. Then, I got to NYC and the doctors at MSKCC were resistant to the ruxolitinib. A dermatologist I saw at MSKCC agreed with CHO, that my symptoms were so severe that the ruxolitinib was warranted. All of these doctors had a conference and decided on ruxolitinib, then MSKCC went rogue and prescribed a much milder drug, acitretin, instead. At this point, I transferred my care back to CHO (this is when I went way up on the steroids), but I’d already lost two months where I could have been getting better treatment. I ended the summer in a worse place than was necessary, which is frustrating and at times angering, but all I can do is move forward now.

I got home on the 12th and had a BMT clinic appointment at CHO on Monday the 14th. We again agreed on ruxolitinib and started the (long) insurance approval process. I started last week, and in 2-3 weeks we should know if it’s working. It’s a newer drug, but the research is really promising. I have a lot of hope for this drug. Hope is a scary thing, because it means I will be really upset if it fails. With the GVHD in my liver, the situation is becoming more dire. Skin and eye and mouth GVHD are uncomfortable (well, that’s an understatement), but internal organs are another level of GVHD with more immediate life or death implications. We will keep watching my GGT on the ruxolitinib, and if it doesn’t improve in 2-3 weeks I will get a liver biopsy before returning to school. If things are bad, I might need to take some time off. Hopefully the ruxolitinib will work for me. I have already exhausted many of the treatment options for GVHD, so I’m not sure what would come next.

In the mean time, I have continued the low level laser therapy I was getting in NYC. The closest machine on the west coast is in Beverly Hills. Seriously. My oncologist (and many other people) think I’m crazy, but I’m driving down and staying 2-3 days a week to get the treatment. The quality of life it gives me is worth it. I had four treatments in NYC, and went from not being able to open my mouth or eat solid foods to eating about 50% of a normal diet. It’s like magic. If anyone else told me they were getting magical laser treatment in Beverly Hills and they swear it’s the cure I’d be like yeah ok…. but it’s working for me, so I am going to do it.

The before and after of my feet on this treatment (also with added steroids) is pretty incredible:

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But also maybe I was actually there for the food (which the laser also allows me to eat after two months on almost straight liquids!)

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It’s almost September, which is a big month for me. It’s childhood cancer awareness month. September 4, 2015 is the day I found out I was in remission. September 24, 2015 is the day I received my life-saving bone marrow transplant from my brother. Last year, I fundraised for Open Hands, Overflowing Hearts, an incredible charity dedicated to childhood cancer research. This year, I’m hoping to raise money for Stupid Cancer, which focuses on the challenges that young adults with cancer face. This means a lot to me, because young adults with cancer can be a bit of a lost group. I explained a bit more on the fundraising page, so check it out here: Stupid Cancer Fundraiser. I’d be honored if you would contribute or share.

Here are some pictures from the end of my time in NYC. Looking at them, it’s hard to believe how bad things were:

"Be it known" that dnaja2 is v imp in VbP-induced pyroptosis

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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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