“Best Case Scenario”

Remember in January when I said that a best case scenario was slow, painful improvement? Well, here I am in the best case scenario. Why does a best case scenario look like this? That is a great question. Probably because we don’t even understand the cellular mechanisms behind GVHD, and also because having a systemic disease in almost every organ in your body is bound to elicit a painful recovery, even if it is a recovery.

GVHD updates:

  • I am getting my central line out next week. This is bittersweet. It is not being removed because I am finished with treatment (photopheresis/ECP), but because I am losing my mind over how painful and irritated the line is. The dressing that has to cover the line has created the most painful, irritated cluster of wounds on my body (which is saying something). I have cried myself to sleep over this central line. I can’t take a shower without changing the dressing because it can’t get wet but somehow I always manage to soak it, even when I cover it with an aqua-guard or press and seal or whatever. Every time I the dressing is changed they were scrubbing open wounds with CHG,  which is basically surgical prep cleaner that STINGS like you wouldn’t believe. It takes my breath away. They eventually switched to a milder cleanser after I literally “jokingly” threatened that I was going to rip the damn thing out. Really only sorta joking. Anyway, the new dressing is way better but it has not solve the wound issue and I cannot keep the dressing clean because I am itching it non-stop, which makes it peel off. And for obvious reasons I am not interested in replacing the dressing more often than I am required. Here are some illustrations of the total MISERY this line has brought me (tryna keep this PG since this is my chest lol but modesty reallllly goes out the window after years of this):

 

That second picture is an actual burn caused by CHG.

  • Sooo now that I am abruptly stopping photo, which seems to have really been a turning point for me, we need an alternative. I am terrified that stopping photo will result in backtracking. At the same time, I am terrified that this central line situation will lead to a fatal infection (or at least a very miserable infection). This is probably a good thing, because I can’t be bothered to worry about dying when I am really sick. But also a valid, pretty huge fear. So, I wanted to go back to imbrutinib but my doctors were skeptical for obvious kidney reasons (I don’t think it caused the kidney failure but I am not a doctor – not that the doctors really know). Anyway, risking another acute kidney injury is pretty low on the list of things I would like to do, so I agreed to try imatinib (Gleevac). It only works in about 50% of GVHD patients but is also a fairly mild drug with fewer side effects than most. Bonus fun fact: imatinib is also a tyrosine kinase inhibitor that targets BCR/ABL aka the Philadelphia chromosome. So if there are any little leukemia cells hiding in my body, maybe imatinib will kill them. Two birds with one stone. I can dream.
  • My eyes are really, really bothering me. I bought a scleral lens, which is pretty much the last line of treatment for me (I am already on cyclosporine and steroid eye drops and have had my tear ducts plugged). Well, idk if I am the world’s dumbest person but I cannot use this scleral lens. It involves filling a huge contact lens with saline, then somehow getting this contact into my eye without spilling the saline. Literally any air bubble is catastrophic and makes my eye even more uncomfortable. I have been in so much pain I was prescribed oxycodone, which I have never really been on at home before (besides right after surgeries). Look at this thing how is this supposed to be possible:

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Other things that are happening:

  • I had a slightly declined ejection fraction (heart function, measures what % of blood is pumped out of the heart vs. kept in the heart). Normal is 55%, I was 52% in December. One of the chemos I got, daunorubicin, is known to cause heart failure. So, I had a repeat echo and the pulmonologist told me my ejection fraction was 37%, meaning I was in moderate heart failure and may need heart surgery and/or die of heart failure. Then, after an hour of discussing what this means, the cardiologist calls and is like no, that is her shortening fraction, her ejection fraction is normal and she’s fine!!! Sooo I’m fine, but like maybe doctors should double check before diagnosing someone with heart failure…just my opinion. This was a very confusing experience for me because usually I know something is wrong before the doctors do, and he kept describing symptoms of heart failure and I was like…I don’t have those? I was also confused because I am at the point in my treatment where I likely wouldn’t agree to extreme measures such as heart surgery, but I also felt pretty well so I was confused about kind of wanting to do theoretical surgery.
  • My liver function and scleroderma are improving, probably from the photo + IL2 + prednisone. I’m really hoping this continues with the switch from photo to imatinib. My eyes and mouth, on the other hand, have continued to be very irritated. The eyes affect my daily life a lot more, but my mouth is really starting to bother me. Not because it is worse, but because I am starting to wonder if it will ever get better. When I thought it would be temporary, not being able to eat spicy foods didn’t bother me so much because I assumed it would end. Now, I am starting to worry that it will not and I’m wondering how I’m supposed to live possibly the rest of my life with about 5 foods that don’t hurt me. I just want some real Thai food.
  • Because of the changes with stopping photo and starting imatinib I am still on my 50 mg of prednisone every other day. I will probably not be able to make any changes for a couple months while we make sure this new treatment is working, which really sucks but at this point the prednisone is shockingly less bad than the line (which is really saying something).

So, this treatment plan has been working and I am doing a lot better. But now we have to make some changes. I’m hoping that getting the line out will reduce the suffering related to the line without causing more GVHD suffering. Maybe imatinib will do the trick. I am regaining some abilities: I can now shower by myself, dress myself, and do most of my own meds/shots. I am getting stronger but am still very weak. This essay has inspired me to attempt yoga now that I have a little more mobility. I will definitely be the worst in the class, but I’ll keep y’all posted on whether the embarrassment is minor or major. I am planning to return to Stanford for hopefully my final year in September, but this could change at any time. I am getting really tired of not being able to make plans in my life, and I wonder if this inability to plan will ever end. Sinai is wonderful and very flexible with deferring medical school, but I want to go and move on with my life.

PS I lost literally all my texts from between January and April, which was the time period where I could not even complete a sentence and as a result basically ignored everyone. Sooo now I can’t even read all of the wonderful messages that I feel guilty about not responding to. Please double text me.

Also, I got a new car. I tried to venture out with the Volt buuuut the universe decided I needed another blue VW. I cannot believe how nice this car is – I really had no idea how awful my old car was until I had a comparison hahahaha:

I am sort of getting out and doing things. It is slow and I hate going anywhere while on prednisone but I am trying:

With two beautiful pieces of A R T 👯‍♀️

A post shared by Brooke Vittimberga (@brookevitti) on

The real purpose of portrait mode

A post shared by Brooke Vittimberga (@brookevitti) on

^Literally couldn’t eat anything but the cheese here. Sooo tired of the mouth GVHD.

This was super long but final plug for my St. Baldrick’s fund: here! I have been beyond touched by the first $810 in donations and I am excited about hitting the first thousand. I have other things up my sleeve related to this but also if anyone wants to help me shoot me a message.

 

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Thoughts on Dying

TL;DR: Donate to my baby hero fund at the link here. If/when we reach $10,000, I can establish a fund dedicated specifically toward young adult survivorship and GVHD. Also, if you have donated to St. Baldrick’s in the last year or shaved your head (or raised funds in another way) then you can direct that $$ toward this fund by contacting me!

First, let’s talk numbers. Statistics are not really that useful to me because I usually have approximately one option and I will live or die so who cares what the percent chance is. At this point, I have lived through enough sub-20% situations to know that it’s possible and if I don’t, well, I guess then it wouldn’t be my problem anymore. But I’m still going to take you through my thought process these past few years. And I’ll tell you the numbers I heard each time.

I was really afraid of dying for about one month. The night I was diagnosed, they told me 80% survive AML. I have never read that number anywhere since (it is always lower) so I have no idea where it came from. Once my first round of chemo failed, I somehow quickly accepted that I would likely die very soon, but I still very much wanted to live. The numbers ranged from 20-50%…never higher, usually on the lower end.

When I got grade four gut gvhd, I begged the doctors to sedate me. Every day. I didn’t want to die, just go to sleep and wake up when it was over. Wish we could actually do that. The 5 year survival for grade 4 gut gvhd is 5% (granted, peds patients usually do better). During this time, I also had a tacrolimus-induced grand mal seizure followed by sirolimus-associated TAM (really unclear survival, just bad overall).

When I went back to school, thoughts of my mortality faded. I am part of a community of people who die very frequently, and I mourned the loss of patients I knew either personally or via online support groups at least weekly. But death became a very normal part of my life, and I am not afraid of it.

When the scleroderma hit in fall 2017, I was very concerned that I would die. No doctor could tell me I was wrong. As I continued to spiral downward, to realize that my life was not going to be what I had expected, I wasn’t sure that this quality of life was worth it to me. But I still had hope that there was a possibility of (not a guarantee) a better quality of life out there for me. As the suffering became more and more unbearable, that hope was harder and harder to find. At each clinic visit, I had new progressions of gvhd. I felt my organs begin to fail as gvhd reached essentially every corner of my body. Simultaneously, I woke each day to yet another ability lost: first, the ability to walk to class, to do my laundry, to take out my trash. Then the ability to get dressed, to make my bed, to cook for myself. By the time I left school, I could do hardly anything but sit in my bed. It broke my own heart and I wasn’t even watching it. At one clinic visit, just one, I had some slightly positive results. I turned to my dad and said “I hope this doesn’t mean I’m dying more slowly.” We laughed. That’s all you can do. By this time, there were no more numbers. How can there be with such extensive involvement…but I will say that the case reports I read were not pretty.

When I went into renal failure in December 2017, my lungs filled with fluid. It was the exact same feeling I had experienced in December 2015, when my central line was misplaced and dumped liters of meds, tpn, and fluid into my chest cavity. That first time I experienced respiratory failure, my survival instincts kicked in hard. I wanted to live. Fix it, please. I was making a horrible sound trying to breathe, and the poor resident was straight up panicking. She told me STOP MAKING THAT NOISE. Hahahahhaha. Anyway, I told her to get out and go get the attending. I wanted to live and clearly she wasn’t going to help me with that. There are no survival rates for an error like this, because fortunately it does not happen often enough to warrant studies. But I will say that this is the first time I really thought I might die RIGHT NOW.

Two years later, in December 2017, I found myself in essentially the same position. The difference was that this time it was caused by my body failing – I was dying. But I could still turn that around, I knew. You can start dying then stop for awhile then go back to it later. I’ve seen it happen several times. While the ICU team worked on me, my mom told me “you are going to get through this.” I don’t know if she was trying to convince me or herself, because we certainly didn’t know that and she isn’t stupid. I said to her “I don’t want to.” It was true. Mortality for acute kidney injury in medically complex patients exceeds 60% (again, peds patients do better than this).

When I got out of the hospital, I wasn’t sure what would happen. But my kidneys had rebounded and it seemed like we had finally found the right combo of meds to treat the gvhd. I began to get better. I didn’t want to get better. Dying in a body like this is easy. Living is harder.

It’s April 2018 now. I am broken in so many ways, but I have a little more hope. I’m not sure what I want out of the rest of my life and what that will look like. Shockingly, there is still a decent chance that I will achieve a reasonable quality of life. Sometimes, even that isn’t enough. Even if I could have a life someday, how much can I bear to suffer to get there? I still think about that. I think I’m still figuring that question out. But right now, I’m improving. By no means do I have a quality of life that resembles even a fraction of what I need for a long-term life, but I’m improving. A long-term life, what the hell did I just write? It made sense to me so oh well.

I have hopes and dreams. Sometimes I can see them. Sometimes I can’t. But when I think about stopping treatment, I keep telling myself “not yet.” Right now I still have a little hope. There have been times throughout the past six months where I haven’t. There has been anger and fear and an immense sadness and grief that I never even knew existed. But my family has kept me going even when I couldn’t do anything for myself, not even summon the willpower to eat or take my meds. They made and are continuing to make it happen. There is a lot of love in this world, and I’ve experienced it from so many people. I don’t ever forget that, and I know how much I need it. I am getting through this. It is ugly, inhumane, barbaric, every awful word you can think of. We are in the infancy of figuring out bone marrow transplants and that sucks. The first transplant happened in 1956. The first transplant from an unrelated donor wasn’t until 1973 – it hasn’t been that long. The targeted drug that saved my life after induction failure wasn’t invented until 2006 – out of all the years of humanity, any time before 2006 I would have just died. I try to remember that.

These numbers all suck…and beyond the numbers, survival with a low quality of life is not a victory. I recently partnered with St. Baldrick’s in hopes of establishing a Hero Fund, which is a fund in my honor that I am able to direct toward causes that are important to me. My fund will focus on young adult survivorship and chronic GVHD. These have been bigger issues  for me than my initial cancer, and I have struggled to find support. In many ways, GVHD not being “cancer” leaves it forgotten. But it is just as horrible, and many of us die of GVHD months or years after being “cured” of cancer. In order for the fund to be established, I need to raise $10,000 over the next year.

You can donate here: https://www.stbaldricks.org/fundraisers/mypage/3301/2018. Or just share the page – that helps just as much.

You can also redirect funds from any fundraiser for St. Baldrick’s in the past year (including if you shaved your head and raised money) toward my fund if you are willing to have it earmarked for young adult survivorship and chronic GVHD. Just contact me to let me know!

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^Some fun facts about this pic: I was returning to school over a year post-transplant and ONLY (lol)  had gut GVHD. Two months later, the chronic set in hard. First in my eyes, then my skin, then essentially the rest of my body. Poor baby had no idea what was coming. Also, I bought those shoes the day before I was diagnosed but they stayed pristine because I barely went outside for the next year and a half 😒

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Quick Health Update

Because I have been having such a hard time, I haven’t written as much about my improvement as I could have. People are confused and I am getting a lot of questions, so let me explain:

  • My eyes, mouth and liver are stable: this is fine for now. I do have uncomfortable symptoms and I miss being able to eat good food, but these things do not severely impact my quality of life.
  • My scleroderma is significantly improved. This is likely due to the combination of photopheresis and IL2. The prednisone plays a large role in getting the inflammation under control, then the ideal is to continue the other treatments to keep things under control and, once you are stable and improving, to begin tapering the prednisone. I have tapered from 50 mg daily to 50 mg every other day. I can definitely tell the difference – I am much less swollen and I’m getting a tiny bit more sleep. That said, my doctors want to stay at 50 mg every other day for awhile. That’s still a lot. They won’t really give me an estimate, which I can’t blame them for because every time we think we know what is going on it turns out we don’t.
  • My breathing and range of motion are still nowhere close to normal, but they have both improved significantly and I am regaining some abilities. I have lost another 5-8ish lbs of fluid and kept it off but seem to be at another plateau.
  • My goal is to stay on this dose of prednisone for a few months (????) then taper the prednisone to a very low dose. I would like to taper completely off of it but I don’t think I will be able to try that for a long time. Meanwhile, I will continue photopheresis and IL2 injections as they seem to be working and I am improving.
  • I am still in a pretty rough place physically. To give you an idea, any doctor who saw me before is like “you are SO much better WOW” but all new doctors I meet, even the ones who specialize in GVHD, are HORRIFIED at the current severity.

Like I said, I am improving. However, that doesn’t remove the uncertainty in my life. I’ve been all the way off prednisone before. I’ve been on several tapers and during each one thought it would be the last. It is hard for me to trust that things will continue to go well and that nothing new will pop up. Unfortunately, no doctor can tell me I’m wrong and that is my reality. This uncertainty plays a large role in why these treatments are so difficult – am I doing this just to have to do it again and again and again? How much is enough? That’s a big, scary question that people run from. Unfortunately, I can’t run from it because I am suffering immensely. Do not worry that I will make any rash decisions – I am improving, doing all of my therapies, and I have some hope. But I also have that fear that I will never have a quality of life that is acceptable to me. Those feelings exist simultaneously.

^Ok it looks more aggravated here but that is actually new skin/blood. When my scleroderma was at it’s worst, blood was not adequately perfusing to my skin. This meant that nothing would heal – it was months of every new wound being seemingly permanent.

^Basically it chilled like this for 3+ months before starting to heal.

PS I saw Michelle Obama on Wednesday and it was one of the only good days I have had in a long, long time. I happened to be feeling pretty well and bought tickets day-of and it was so worth every penny. Also, I’m finally showing y’all what I look like. This is halfway off the prednisone, so imagine me before 😂

 

 

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You Never Get Used to Suffering

I literally forgot that I also have LIVER gvhd in my last post. I have more problems than I can even remember. Anyway, my health has been improving (very slowly). When the scleroderma first appeared in September, they told me it would be at least a year. They were right. I’m still not ready to go back to school, still extremely disabled and miserable. Not much has changed physically since my last post, but there is an upward trend. I am now down to 50 mg every other day of prednisone. It’s less, but still a lot. I am definitely not ready to return to school yet so I’ve had to extend my leave through spring. I am hoping to go back in June but I’m not sure if that’s realistic at this point.

These past few weeks have been especially tough because I have begun to really grieve my own life. When I was diagnosed with AML at 19, I knew it would suck. But I also had the expectation that I would either die or get better, and if I got better I would jump back into life. Obviously, this hasn’t happened. As the years pass and I get older, I’m realizing that my young adulthood is passing me by. I will never get these years back. I’m 22 and have been essentially a full time patient for three years. I’ve grown up a lot over these past three years and I’m ready for all the same things my peers are – a career, financial independence, a partner, travel – but my life cannot reflect that. By the time I can even be somewhat normal, I’ll be 23 or 24. That’s a very different life stage. I’ll never get to do all the dumb 19-24 year old stuff I’m watching my friends do. Sure, 25ish is still very young and I will make the most of it then or whatever, but it’s still a hard thing to process. The point of all of this is that I’m realizing that this is a LOSS not a DELAY and that is devastating. You can’t just cut and paste me back into life.

There are a few reasons I’ve been out of touch. The first is obviously that I have been incredibly ill. The second is that I cannot bear to hear about what I am missing out on. I cannot talk to the people I took classes alongside, knowing I did everything just as “right” as they did, while they get salaried up and live their best lives. But the main reason is this overwhelming grief. I have been really angry. When a friend complains about their appearance or a minor illness, it makes me so mad. Not because their problems aren’t valid, but because HELLO I am standing right here with 30 pounds of fluid in my body and face and you’re upset you’re not wearing makeup? It makes me feel like they think it’s fine for me to be ugly, because I’m a sick person, but not them. If it’s so awful to not be wearing makeup, imagine how AWFUL it must be to look like me. This is frustrating both because I have to feel ugly all the time and because I feel like everyone has decided that as a “sick” person I can handle all of this and somehow it affects me less. It doesn’t. You never get used to suffering, and the assumption that I have makes me so mad. Sometimes I think about how I live on the brink of death constantly, and how sad it would be if I died at this time while I’ve been so angry and out of touch. Like, if I had died two years ago at least I would have still said goodbye etc. in a polite way.

I think I am moving out of anger and into sadness now. I hadn’t really cried over being sick much, but once I started it’s like I will never stop. The worst part is that my eyes hurt like crazy every time I get upset, to the point that I’m now on oxycodone pretty much daily. To be very frank, I have spent the past 6 months wishing I was dead almost every second. It’s not about my mental health, but about the torture of being in my body. Then I look at what the rest of my life will look like and I realize I will have to grieve forever. When I’m 28 and everyone starts having kids? Infertility. I mean, there is no end. I have to be bald forever. GVHD this severe doesn’t always go away – even if I get through this scleroderma, I never know what will be next. The thought of the rest of my life is exhausting.

Last week, I had a mental breakdown and tried to get a new car. I won’t describe the breakdown (I do have a shred of dignity left) but I will say that the doctors considered scanning my brain to see if a tumor was causing me to behave this way (nope, it was all me). I’ve been driving a 2005 VW Passat since I was 16 and I love it. It’s my baby. But it has a lot of issues at this point and I’m too tired to fight it anymore. I just wanted something that works. So I signed a lease takeover on a Chevy Volt with a bunch of upgrades and I was pretty excited about it. Then, the dude took it back at the last second after I’d already driven kind of far to see it and sent in my side of the paperwork. I’ll find another car, I know, but can’t something just be easy?

Facebook reminded me that three years ago on this day I was in London. I was on a solo trip on my way to studying abroad in South Africa. I had undiagnosed leukemia. It was horrible, but not as horrible as this. Remember this person? I hardly do.Screen Shot 2018-03-27 at 9.32.40 PM.png

 

 

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Not Alive or Dead

This situation is difficult to contextualize. Compared to many cancer patients, I am somewhat lucky. I am alive. My cancer hasn’t returned and it’s been almost 2.5 years, which means it is unlikely to recur. On the other hand, compare me to the average 22 year old and it’s tough. Compare me to most of my friends, who just graduated from Stanford and are spread across the world, and it’s pretty much devastating. Weirdly, though, I struggle the most with seeing other BMT patients who have had more successful transplants and have been able to move on with their lives. I didn’t die, but am I really alive? My oncologist and I decided I’m neither.

I won’t even attempt to fully convey the suffering I have experienced throughout December, January, and February. All I can do is give you some snapshots. The emotional aspects are as tough as the physical. It is so hard to watch my friends get jobs, move out, date, go to grad school, etc. when I have lost everything. School, my apartment, any semblance of a social life. So, to the hundreds of people who have reached out to me over the past few months – I am not ignoring you specifically. I am ignoring everyone. I can’t hear about anyone’s life right now and I don’t have anything to talk about because I have nothing in my life besides illness.

Right now my days look like just trying to get through. I try to sleep 12+ hours and usually have medical appointments every day between physical therapy, photopheresis, BMT clinic, pulmonology. dermatology, and ophthalmology. My kidneys have behaved since December, and I am still doing photo + IL2 + prednisone. I am actually improving a lot, though my scleroderma is still extremely severe and impacting over 80% of my body. Because I am improving, I have been able to taper the steroids. In December I was on 50 mg every day. Currently, I am on 50 mg every other day alternating with 10 mg, so almost halfway off. I should be down to 50/0 in about two weeks and then my doctors want to stay at 50 mg every other day for a few months. I’m not so sure about that because I hate prednisone, but I also know that every time I have fought my doctors on it they have been right, so we’ll see.

The prednisone is almost as bad as the disease itself. I’m so sick of being hideously ugly and please do not tell me it’s not true, especially if you haven’t been through a physical appearance change that you have no control over. Because of the scleroderma and prednisone, both of which cause me to retain fluid, I am 30 pounds over my normal weight and I feel it everywhere. I can’t wear anything besides sweatpants and I feel like Regina George after she ate all those weight gain bars thinking they would help her lose weight and then she couldn’t fit into anything but sweatpants and her friends were all “you can’t wear that” and she’s like “it’s the only thing that fits.” I’m so, so miserable.

Physically, I’ll just make a list because it’s so much. It’s not even really that specifically interesting other than to convey the general volume of issues.

  • Scleroderma, obviously. The itch is incredibly torturous. I cannot do anything, even hold a conversation, without it bothering me. My range of motion is so affected that I cannot do the majority of normal daily tasks like dressing or myself or going on a walk. Here’s a picture of my legs, which are actually the least affected area of my body.

IMG_0356-1.

  • Wounds – I have random wounds around my whole body, which I guess is common with scleroderma. I counted them yesterday for the first time lol and I have 17ish. I’m putting two different medications on them twice a day and they are improving but wow they are painful and itchy and annoying. I also have a staph infection in one of them on my leg which is really awesome. A couple examples:

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  • Central Lines – of course there are going to be central line issues in here. The dialysis catheter from Stanford came out of place. I underwent surgery to try to fix it and it was unsuccessful. A week later it was removed and a second line was placed, again in the right side of my chest. This line also came out of place, so the next week I had a third line placed, this time on my left side. Each of these surgeries left gaping wounds that have still not healed 6+ weeks later. As we all know, I have had a lot of line placements (no idea how many at this point, maybe 20?) but I have never had such a hard time healing before.

IMG_0077-1IMG_0605-1

Left is a week post-op, right is 8 weeks post-op (taken today). It’s pretty much the same on the other side of my chest, too.

  • Hair – still an issue. I went to yet another dermatologist at Stanford. She did not see live follicles and felt that the alopecia is likely scarring/permanent. We decided to go ahead and try some steroid injections to see if they help, even though it’s unlikely. I’m too exhausted about this issue to really fully explain it, but suffice to say I’m not that happy about getting 10 shots in my head every 4 weeks and I’m even unhappier that this is probably permanent (even though I have been saying that for literally YEARS and no one would listen to me so I do somewhat appreciate the validation).
  • Heart/Lungs: My lungs continue to struggle due to the restriction of the scleroderma and I am still very short of breath. It is a little better as the scleroderma improves but still rough. My heart also showed a small issue with declined ejection fraction in December, which made sense given that I was in renal/respiratory failure, but I’ll be doing some repeat testing soon to make sure that has resolved.
  • Vision: My eyes still suck. The left eye is still way worse. I just ordered a scleral lens for my left eye. which is basically a huge contact lens that holds saline in the eye to keep it moist. It is supposed to help a lot. It’s not covered by insurance (just like the stupid autologous serum tears I use), so I just went with the left eye since it is worse and each lens is $260. Apparently this is a thing that people do (have one scleral lens) but if it’s good I’ll probably try to get a second for my right eye. I also found out I am farsighted at this same appointment. I thought old people get farsighted but whatever, I’m happy to be able to read so much better with glasses.
  • Mouth: I still have mouth gvhd. Still can’t eat anything spicy or acidic. Still appear to be a weird four year old whenever eating. Doing steroid mouth rinses daily.
  • Hemoglobin: My hemoglobin keeps dropping and we don’t know why. Before December I hovered around 12/13, but since then I have been steadily dropping and all tests have come back negative. Today I was 8.3. Adults are typically transfused at 8, and kids are transfused at 7 or symptomatic. I am getting pretty dizzy when standing so I might get a transfusion soon. I haven’t had a red cell transfusion since 2015, when I had my transplant. I am not that worried about possibly needing a transfusion, but I am somewhat worried about the underlying cause.

If you didn’t read all of that I don’t blame you one bit. I actually didn’t read all of it after I wrote it. Who cares about the specifics? The point is that everything sucks, everything hurts/is irritated/itchy, and I’m mad about it. Also, sorry to everyone I haven’t been in touch with. If you saw a day in my life you would understand.

 

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Don’t Tell Me 2018 Will Be My Year

If I had a dollar for every time I’ve heard that over the past few weeks, maybe I’d be able to make a dent in my copays.

There is no situation where I will be in good health within the next 6-12 months. My mobility is limited to the point that I can’t take a shirt off. I’m so itchy that I can’t think straight. I am so weak that a flight of stairs is difficult. I can’t breathe. I have systemic GVHD involvement in almost my entire body at this point – skin, eyes, liver, mouth, muscle.

The road to recovery is a long one and it’s not guaranteed. It’s possible this could be my reality forever. But in a best case scenario I will get better. It doesn’t happen overnight, though. It is a long, hard journey that will involve continued pain and discomfort. I will need to keep a central line to do photopheresis to treat the scleroderma. I will continue to give myself daily injections of IL2 (which, by the way, have to go in my inner thighs because they have the least scleroderma). At some point, I will probably restart imbrutinib, which involves lovely side effects such as bleeding, bruising, and nausea. In the best case, these treatments will work and my health will improve. But even if that happens, it will be a slow process. Tiny gains in mobility, slight desensitization in my mouth, fewer days with painful, blurry vision. Meanwhile, I have had to restart the process of strengthening my muscles – almost from baseline. Lots of physical and occupational therapy are in my future.

The idea that 2018 will magically be “better” is naive and it really fails to capture the severity of this situation. 2018 will be hard, probably harder than 2017. I am hoping, wishing, crossing every finger that the outcome of a tough year will be better health, more independence, an ability to enjoy moments of my life rather than gritting my teeth and begrudgingly willing myself to continue living. But please don’t pretend it will be easy or fun or that a magical 1-month recovery will occur. None of these things will happen.

In a brief health update: my central line (the brand new one I got in my jugular) is already out of place. If you remember my last post about central lines (go here), you will know that this is almost comical. Tomorrow, I have to get yet another central line – at least this one will be done at CHO so I won’t have to be awake. I have lost count, but I’m guessing I’m at around 15 lines at this point. In other news, we restarted IL2 and so far my kidneys are fine. I’m still on 50 mg of prednisone a day. Our current plan is IL2 + photopheresis + prednisone. The hope is that we can replace photo with imbrutinib in a few months (then I can get the central line out). We will also probably begin to taper the steroids as the other treatments have more time to work. Shockingly, my scleroderma has improved since getting out of the hospital, and I am carrying slightly less fluid weight (30 lbs instead of 40, how exciting – though an improvement from the 60 I reached while in renal failure). We really don’t know why I am improving, given that I have been off of a bunch of GVHD meds recently, but really we know nothing about GVHD anyway so it’s par for the course.

I just told you a bunch of things not to say to me, so here are some things you can: you can root for a positive trend, for the uncomfortable treatments to be worth it, for my hard work in PT and OT to pay off. For my health to improve enough for me to return to school. For my eventual ability to enjoy small moments like a cup of hot coffee or an especially vibrant sunset. Maybe throw in a winning lottery ticket – it’s about time I got some good luck.

Here is a throwback to 2015. Tbh I feel the same way about 2016 and 2017

Screen Shot 2018-01-01 at 6.25.29 PM

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Surviving (kinda)

To everyone who has contacted me over the past few weeks – thank you. I feel the love and support. I’m sorry that I haven’t been able to get back to most of you. I just can’t right now.

I can’t stop thinking about this last admission. I have an app from Stanford Healthcare that shows me my test results. Remember how I was getting stuck 10 times a day while going into renal failure? I can literally watch it happening on the app. The first metabolic panel on Saturday the 9th had a creatinine of 0.7 (normal is 0.4-1.0). On Tuesday the 12th it was 5.2. I don’t remember a lot of it, other than suffering unbearably, but I do have flashes of that night. The ICU team spent all night trying to stabilize me. I mostly only remember my head pounding, my blood pressure flashing 180/140, and the ICU fellow yelling “give her more lobetalol!” over and over. But the moment that I can’t get out of my head is struggling to breathe. I was on 25 liters of 100% high-flow oxygen which is, in a phrase, a LOT. I really couldn’t breathe. They brought in a portable chest x-ray and I watched the results pop up on the screen – my lungs were entirely white (they are supposed to be black, the white was fluid). I was actually drowning in my own lungs. The only other time I have experienced that feeling is when my central line spilled into my chest cavity in December 2015. The feeling is simply indescribable.

 

^these are all from the same admission.

Since getting out of the hospital everything is even harder than it was before. My muscles are weaker and I’m more tired. Most of all, I am having a really hard time breathing. This is mostly due to the scleroderma, which is compressing my lungs so tightly that I can’t take a real breath. I cannot make my bed or walk to the kitchen without gasping for air. I cannot have supplemental oxygen because insurance won’t pay for it if you CAN breathe, even if it’s very difficult.

The good news is that I seem to be making a miraculous recovery. On Friday the 15th I had a dialysis catheter placed in my jugular because the nephrologist insisted I would definitely need dialysis for at least a few weeks. On Saturday, my creatinine started to fall on its own, and I never ended up needing any more dialysis. At this point my kidney function has seemingly fully recovered. But not in time for me to avoid getting a freaking catheter tunneled into my jugular while A W A K E. They gave me versed and fentanyl and kept saying “Oh you won’t feel anything and you won’t even care what we are doing!!!” I felt it, I cared, I was awake. Afterward, they couldn’t get the incision to stop bleeding because I have clotting issues (both because of the imbrutinib and because poor kidney function causes clotting issues). They sent me back to my room while literally bleeding out and my nurse had to call the OR and be like “um, I don’t know if our definitions of oozing are different but I think this is more than oozing.” The surgeon came back and yeah, it was more than oozing. When they finally stopped the bleeding and took the gown off of me they told me not to look, but it was soaked entirely through. So were the sheets. The stupid thing still hurts.

Because my kidney function recovered so rapidly, the nephrologist would not do a kidney biopsy since he felt that the risks outweighed the benefits. The BMT team still wanted to do it. I did, too, because we still don’t know why this happened and how will we prevent it from happening again? But because I am already at high risk for bleeding and there is no guarantee the biopsy would have told us anything, we just have to wait and hope this was a random freak acute injury.

So, I went to Christmas yesterday and I burst out crying in the middle of the huge family gathering. It would have been embarrassing if I had energy to feel anything other than traumatized. I think I was mainly crying because I really can’t enjoy anything given my physical state of being, but also because Christmas brings those questions about your life, how you are doing, how’s school and work. I’m fine, thanks, miserable every second of the day, just dropped out of school and had to give up the research I’ve been working on for a year, I’m on 50 mg of prednisone daily and my face is a planet, I’m 22 years old and my friends are spread across the world while I just moved back in with my parents. It’s been 2.5 years since I was diagnosed with cancer and there seems to be no end in sight. I’m doing really great.

But really, mostly I just can’t stop thinking about drowning in my own lungs.

Because pictures can describe this more than I will ever be able to:

 

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