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:
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!)
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: