For reference I wrote this yesterday (June 18) but it wouldn’t upload. I also wanted to add a note – to be honest, my issues feel very insignificant in the face of the current border crisis. Part of what is so hard about cancer is knowing that so many people are trying desperately to find a cure and there just isn’t one. But there are solutions to a border crisis that do not involve cages and tent cities. Watching people suffer because of the choices of others, not a lack of knowledge, is a whole different thing. I wish I had the words to convey how utterly disgusted I am. To those who don’t like to talk politics – politics are about humanity. Every one of our actions is political. When you choose not to engage with a topic, you are turning your back on real humans who are suffering. That is as conscious of a choice as engaging. I feel almost silly writing about myself while all this is happening, but here I go.
Three years ago today I was diagnosed with AML. The past couple years this day was heavy for me, especially since on the two year anniversary I had to watch my college class graduate. I can’t even start about how I just watched the year below me graduate. But right now I don’t really have any feelings about this day. When I was diagnosed I had no idea what I was getting into. I knew it would be hard, but my understanding of chemo/cancer was nausea, being tired, and possible death. I figured I would get maybe chemo then not dying. Or chemo then dying. I had no idea I could end up in between.
In retrospect, it is hard to believe I was ever so naive. But what is even harder is remembering that most people still are. And that’s a good thing. I wouldn’t wish this on anyone. But for the past three years I have suffered physically and emotionally in ways I did not know were possible. It is an exhausting experience – to adjust for illness, then adjust to feeling better, then get your hopes up, then get devastatingly sick again. To have my dreams ripped away over and over is indescribable. But even worse is what my life has become. Trying to get through the day.
I am doing a lot better physically. But I always struggle the most emotionally during this part. Being so sick usually causes me to disconnect, and this last period of illness was by far the most severe case. The suffering has been so immense that there has been no energy left for anything but existing. And as I start to feel better, I face both the never ending fear that I will return to that place and the fact that I now have to deal with the ruins of my life – of reconnecting with friends, thinking about school again, wondering if/when I can move out. If this could be a more sure thing, I think it would be easier to handle. But I don’t know how I would possibly handle a third leave of absence from school, more than six years trying to complete my degree. Or how I will ever explain this experience to anyone. Will I ever feel connected to people the way that I used to?
An eye saga:
- My eyes continue to be a major problem. My vision is declining and I can hardly see. I am extremely light sensitive and usually in some amount of pain. For the past few months, for about 3-4 days every other week it has been so extreme I can do nothing but lay in bed, doped up on opioids (which only take a slight edge off), and wait. Recently, I have seen improvement for reasons explained below, but this is really such a scary experience.
- I have been seeing an ophthalmologist at Stanford since my first symptoms in March 2017. He is supposed to be a GVHD expert. Well, he keeps trying to get me to cauterize my tear ducts, but in the same breath says he has never done this on somebody my age and he doesn’t know what will happen. The concern is that since I am younger than most adult BMT patients, I may heal more than them. If my eyes heal and my tear ducts are cauterized, my tears won’t be able to drain and will just pour down my face. After the permanent hair loss I do not take cosmetic side effects lightly. It is hard enough to get people to treat me like a person as is.
- The first ophthalmologist was clearly annoyed that I had questions, and just told me if I didn’t do the cauterization ASAP I would probably go blind.
- I got a second opinion at UCSF and the doctor there was horrified. The first thing she did was swab for infection and she found FOUR (4). Count em, four. The first dude was giving me immune suppressive eye drops. Which suppressed my immune response to these infections. He never checked for infection. Anyway, I am now on antibiotic eye drops and they are helping. She also said I can definitely stay on the steroid eye drop 2 times a day indefinitely, as my dose is moderate and studies only showed cataracts/glaucoma in patients using high dose drops 4x daily. Would have been nice if the first optho told me that.
- I have two surgical options: Cauterize my tear ducts, but if I heal she can insert small tubes to drain my tears into my nose so that I don’t have the tear-pouring problem. Weird that the first guy didn’t mention or know about this? The second option is to get an amniotic tissue graft placed onto my eye for two weeks. This would be cloudy and make me temporarily blind, but again only for two weeks and it would promote healing and possibly halt the GVHD cascade.
- I have not decided about surgery yet. On June 29 I have a follow-up and we will check on my FOUR infections and talk more about next steps.
- There are no studies in the AYA category on ocular GVHD. After an adult nephrologist insisted on putting a dialysis catheter in my jugular because I would “definitely” need dialysis for weeks, I have a hard time trusting adult docs. I used the catheter one (1) time. I already had a temporary femoral line that surely could have been used one more time. At the same time, I am clearly not behaving like a peds case because it is very rare for kids to have such long, severe GVHD.
- I convinced them to re-start the steroid taper. One doctor told me no so I asked another doctor. Kinda like when one parent says no so you find the other. I am who I am, sorry. I’m now down to 45 every other day and so far nothing bad has happened. The goal is to taper 5 every other week until I am on 30 mg every other day then reevaluate.
- I started imatinib (Gleevac) because I got my central line out and we thought that would prevent me from doing photo. Well, so far I have had 4 sessions of photo with my peripheral veins and they have gone flawlessly. Everyone is shocked except me because I TOLD them it would be fine if I got the line out. Finally I’m right about something! So, now I’m on Gleevac and still doing photo. I am happy about this because I am hoping it will help me taper the steroids more quickly.
- I have been really nauseous and throwing up kinda a lot. My hemoglobin is also falling. It’s around 9 when it usually hangs out in the 12 range. This happened a few months ago also and I ended up needing two blood transfusions but we never figured out why. I am choosing to believe that these problems are related to starting Gleevac because I can’t deal with other possibilities (like more GVHD or relapse or whatever else that could happen to me that I haven’t even thought of yet).
- Skin continues to improve. Maybe I’m 60% of the way there? It’s hard to fathom this problem ever really going away, but it is so maybe it will actually completely disappear. Prob not though. I went to yoga last weekend and the teacher was really awful, it was so bizarre – she kept yelling corrections at people which IMO is not in the spirit of yoga. However, I enjoyed the class despite her, so I will be in search of a new teacher because I could tell it was really helping my body. Before, there was no way I would have been able to do this, but now I can move enough that stretching is actually beneficial.
- Liver and mouth are stable, slight GVHD but nothing super concerning. I got a repeat biopsy of my scalp to check on the alopecia and got the same results as last time. Alopecia areata, unknown origin, not GVHD-related. I have an appointment with the UCSF hair clinic in August (It meets one afternoon a month. It literally took me two years to get this appointment) and supposedly this will be a fairly final answer on this issue. I have very little hope.
In other news, as most of you know I recently started fundraising for an AYA GVHD/survivorship fund with St. Baldrick’s. My friends have stepped up incredibly, and facebook birthday fundraisers have raised thousands in the last two months. My lab at Stanford also S H O C K E D me with an almost $3000 contribution. Both of these things take my breath away. In a time where I feel so alone, the support is incredible even when I feel so incapable of returning such amazing efforts. I already wrote about this so I’ll let that post speak for itself:
I think we are at about $6,000 between all of the fundraisers in progress. They will be added to the fund over time. Check it out here (and maybe share it??) stbaldricks.org/fundraisers/brooke). Everyone who has contributed or shared the fundraiser is telling me that they care about my suffering and that I am worth finding better treatment. That means the world to me.
In my daily life: I recently started a Spanish class at my local community college. I am very stressed out by Stanford’s language requirement because the attendance policy is very strict, even with disability accommodations, and I just can’t guarantee daily attendance. This class will definitely test my willpower because it is at 8:15 (!) in the morning (AKA the middle of the night) but the teacher is kind and I am learning. Also bonus my little sister is in the class with me too! Probably the only reason I actually show up at 8:15. I am enrolled at Stanford for fall but tbh no idea if I will go. The thought of putting my life back together is too exhausting to deal with right now and I never know what will happen between now and then.
Three years ago was the day when there was finally an explanation for what I had already known. I didn’t know that it was cancer, but I knew something was very wrong. I thought I was going insane (this was not helped by several doctors missing the diagnosis). So, in a way I am almost grateful for my diagnosis day. Not because I ever wanted to have cancer, but because I suffered long before this day and June 18 finally gave me an explanation.
I wonder how I will ever pick up the pieces of my shattered life, but I know that I will. I resent that I have to, especially since there is no guarantee I won’t have to do it again…and again…and again. While my friends travel, work, go to grad school, meet new people… In the mean time, I will continue to find hope in my hero fund, in the people who have embraced me even though we are now three years into this and I’m sure you all are over me being a mess (I know I am). I am also thankful to have been given so many platforms to share my experience – St. Baldrick’s, Stanford Magazine, the SCOPE Med School Blog, a Levinthal Tutorial…(except not honors in the arts because lmao they rejected me). I don’t believe there is a why to all of this, but that doesn’t stop me from asking the question every once in awhile.
PS A wonderful non-profit gave me tickets to Clusterfest and even though it was exhausting, it was such a welcome break.
Bonus pic from my first return to school after LOA 1. When I thought things were still bad LMAO. It’s kinda sad that my biggest hope is to get back to this lesser form of suffering.