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

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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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Acute Renal Failure

I feel overwhelmed by the task of conveying this past week.

On Saturday I was admitted to Stanford hospital for fever symptoms. I can’t actually get a fever because prednisone suppresses fevers and I’m on a very high dose, but I had chills and body aches, which was enough for any BMT doctor to want me inpatient.

I arrived at the hospital around 7 AM and was given fluids and some heavy duty antibiotics. At 4 PM sudden, intense kidney pain came on. By the next day I was in full blown renal failure. For probably only the third time in my treatment, I really truly thought I was about to die (the other two times were when my induction chemo failed and when that central line spilled into my chest cavity and I was intubated). Acute renal failure feels like death. I had a wicked headache and was vomiting nonstop. I gained 7 kg (15lbs) of water weight in one day. My lungs filled with fluid. My heart started to struggle. This means I was going into multi system organ failure. People do not come back from multi system organ failure.

An emergency femoral line was placed and I started emergency dialysis. After three sessions, they have removed 20 lbs of weight. We still have about 30 to go before I’m at what we consider my “dry weight.” I am calling it my med spa treatment. We don’t know exactly why my kidneys are failing, but there are some ideas. The fluid overload over the past few months has probably been my kidneys struggling for awhile, but the labs don’t really show this until the problem progresses pretty far. The sudden onset may have been triggered by the IV antibiotics I got on Saturday, but there is likely an underlying cause and it would have happened anyway. On Monday I am getting a kidney biopsy, but it’s more to rule things out than to find the cause. The nephrologist said we will likely never know exactly why.

Tomorrow I will be getting a more permanent dialysis catheter placed in my chest and will hopefully get the femoral line out. These procedures, including the kidney biopsy and a lumbar puncture I got Saturday to rule out infection, have/will all be done awake. Partly because my respiratory needs are too high to safely sedate me and partly because I am on an adult BMT floor and they are not as nice to adults as they are to kids. I have reduced my oxygen needs from 25L of high flow to 6L. I have lost most of my mobility/ability to walk, and I have PT and OT every day. My hands are so swollen from being stuck 5-10 times a day that I cannot close them.

The nephrologist and my oncologist believe that I have a very high chance of my kidneys rebounding. Every morning at rounds the nephrologist says “you walked in here with functioning kidneys and you will leave with functioning kidneys.” If not, we know a perfect match of course (lol thanks jack). I will feel stupid if I have to get another transplant but the funny thing is that since I have Jack’s bone marrow my immune system is actually uniquely capable of accepting a kidney from him. It’s also funny because I did research on combined kidney/stem cell transplants before any of this went down. I’m currently working on neuroblastoma research so maybe I should stop before I get neuroblastoma too.

The next days and weeks and months will be hard. I had to be temporarily taken off of immune suppression for my gvhd due to the renal failure but we will start adding things back soon – likely photopheresis first since it is not hard on kidneys and then after that we will try imbrutinib and IL2 again. I’m taking time off and going home. Send me your love, good vibes, warm wishes.

 

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Imagine this but every single knuckle.

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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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