Guinea Pig

Cancer patients are strongly advised against Googling. WebMD is your enemy. I understand why, without basic scientific literacy, the information on the internet is incredibly overwhelming and can be seriously scary.

“Five-year survival rate” (So what happens after five years? Can I expect to live to 31?)

“Poor outcomes” (k, we talking death here or… ?)

“Secondary cancers” (Having cancer makes you more susceptible to… cancer? Great.)

“Treg and Tcon Haplo Allo MUD SCT for GVHD prevention” (Is this even English?)

The double edged sword is that the internet diagnosed my cancer, and gave me the impetus to seek medical help. I had no idea that the vague symptoms I was experiencing could be something serious, and was dismissive of my body, thinking that my fatigue and weariness could only be a personal failing. The nurse practitioner who felt my lymph nodes the day I was diagnosed laughed with me when I told her I googled my symptoms and the internet told me I had leukemia. “Never google anything,” she said lightheartedly, her hands around my neck, “WebMD always says it’s cancer.” (She later called me and apologized. I thanked her for saving my life). On a cancer forum I was reading recently, someone had the username: WebMD_was_right.

When I was first handed a thick binder full of bone marrow transplant information, I was under the impression that transplants had two outcomes: either you live or you don’t. I was optimistic: everyone involved in my care told me I was doing great, I was strong, young, healthy, positive, and had a great support system. I imagined that I would get the transplant, feel shitty for a little bit, then get on with my normal life.

A few weeks later, during my first meeting with my transplant doctor, I was shot down from my optimistic high horse. My doctor laid out the risks, the main concern being Graft-Versus-Host Disease.

GVHD is basically inflammation, and occurs when the donated cells attack the host’s cells and takes form as an acute or a chronic issue. Some people die from an acute GVHD attack on their organs. Some BMT recipients struggle with GVHD symptoms for the rest of their lives, with a chronic rash, joint pain, cataracts, gastro-intestinal issues, and on and on. The way GVHD is controlled is by immune suppressing drugs and steroids. Immunosuppressants tell your new immune system to chill out and stop attacking itself, but they also sorta suck. Some people are on them for the rest of their lives and live in isolation, any little bug or infection can lead to serious complications. Immune suppressed people are discouraged from travelling, being in crowds, eating out, and exerting themselves (hey, what’s up bucket list). Then there’s the steroids: personally I beef with prednisone for swelling my face into a perfect circle and stirring up a relentless hunger. Long-term steroid use can also lead to unhealthy weight gain, diabetes, and something called Avascular Necrosis, where bone tissue breaks up due to lack of blood flow. Many people with chronic GVHD treated with steroids like prednisone need total hip, knee, and shoulder replacements and can be disabled for life.

Contrast all of these side effects with the alternative: dying from a leukemia relapse, and a little rash or a bad hip doesn’t sound all that bad. However, I understand now that there are more than two outcomes, more of a spectrum ranging from good quality of life to really really poor. Being on immunosuppressants and unable to walk or see for the rest of my life doesn’t seem like a bright, shiny alternative to dying. And hopefully, after all is said and done, I have quite a few more years left to live.

Back in November, I received a happy text from my younger brother, Andrew. The transplant center had called him and explained that he was a 10/10 match and would be an ideal transplant donor. Although this isn’t quite as rare and magical as some people have thought (it’s about a 25% chance that a sibling is a complete match) we were ecstatic. In late December, after undergoing a litany of tests, it was revealed that Andrew would not be the best match due to some other health issues. (He’s fine, but that’s his story to tell). Luckily, I have multiple 10/10 matched donors from the international bone marrow registry and one of them agreed to donate. While who your donor is doesn’t seem to have an impact on the effectiveness of curing your cancer, research does suggest that an unrelated donor carries a larger risk of developing GVHD.

There is a possible alternative, my doctor explained. I could join a clinical trial. Scientists are learning to toy with the T-cells given during transplant, “regulating” them in a process that sounds really complicated and might not make much sense unless you have a firm grasp on cell biology. You can google it if you’re curious (I have, and I still don’t quite understand how it works). This new type of transplant could possibly eliminate the potential of GVHD. It also isn’t exactly proven.

At first, this seemed terrifying. Throughout treatment, I was mostly told what to do: “this is the protocol, the regimine, we’ve been doing this for years.” They gave me pamphlets with little calendars, flowcharts, algorithms. Now, I could make a choice: take a risk on something unproven, or potentially live my life chronically sick.

I turned to my friend Google: reading research papers and scientific articles I barely understand, but also reading the stories of those who struggle with post-transplant complications. Many people regret their transplant, are immobilized by GVHD symptoms, and feel that the complications often outweigh the rewards. Some people are doing just fine, have a little itchy patch on their elbow or whatever that reminds them that they survived. I’m not sure I would be aware of how debilitating GVHD can be unless I would have taken the time to do my own research.

So, I opted for the clinical trial. They only make the cells twice a month, during a specialized process that I don’t quite understand (sensing a theme here?). But, I got in, and will get my brand new immune system on February 14th, 2020. It seems significant somehow that it will take place on a holiday about love, though I’m not sure Taylor will be too stoked on my idea of sending my anonymous donor heart shaped valentines candies for the rest of my life.

Here’s a list of what will happen next:

• Sometime this week, I’ll be admitted to the hospital for two or three days to get hooked up to the 24/7 immunotherapy drug Blinatumomab. Last time, I didn’t experience anything too shitty besides some flu-like body aches and the general discomfort of having to be connected to a tube in your arm all the time. The Blin is usually administered in 30 day cycles, but they will cut it short this time just before I go in for transplant.
• I will have another bone marrow biopsy (my 4th one), not for any medical reason, just to give the researchers a sample (you’re fucking welcome, science)
• The week before Valentine’s day, I will be admitted to the transplant ward. I will receive a chemotherapy cocktail and total body irradiation every day for 5 days. The chemo is specially reserved for transplant patients, because it destroys your immune system irreparably. Lucky me.
• During this time, I will have my double-lumen PICC line pulled out of my arm and a triple-lumen Hickman line placed in my chest. More lumens, more fun.
• On February 14th, I will have my “re-birthday”. Apparently the actual transplant will only take an hour or so, and is no different that receiving a big bag of red blood cells. Hopefully, someone will bring me cake.
• After the transplant, we have to wait until the donor’s cells “engraft”, or find a home in my bone marrow. Once this happens, my blood counts will be monitored until I’m producing enough white blood cells to fight a teeny-tiny infection, then I will get to go home. The average patient spends 4-6 weeks in isolation.
• For 100 days afterwards, I will have twice weekly labs done to see how my new immune system is doing, and the transplant team will monitor me for complications. I won’t be able to return home to Montana until after the 100 days are over in late May.
• During this recovery period, I’ll essentially be in isolation. I won’t be allowed to leave my house without a mask on, eat fresh vegetables, use the vacuum, be around infants, touch any dirt, and so on.
• My blood type will change to that of the donors, I will essentially have the immune system of a newborn baby, and I will have to be re-vaccinated eventually. (I swear to God, if I get measles before I can get the vaccine because some essential-oil touting Karen thinks little Billy will get autism….)

Here’s a list of what might happen:

• I might get really bad mouth sores. The chemo and radiation wreak havoc on your mucous membranes and fast-generating cells like the ones in your mouth and gastrointestinal tract. Most people experience this during transplant, and the solution is copious amounts of fentanyl. I’ve never had mouth sores from chemo before, but I’m told there’s no way to predict or prevent them.
• The radiation might give me a new, exciting type of leukemia or even another cancer.
• I might relapse. About 50% of BMT patients relapse. Like I’ve said before, we try not to get hung up on statistics, but my age and the fact that I’m going into transplant with a negative MRD (No detectable cancer cells in my marrow) protect me a little bit.
• I might still get GVHD, about 15% of people with a T-cell regulated graft still get the disease (there I go with statistics again).
• I might get a really bad infection and have to have tubes put in my throat and my belly cut open and then maybe a parasite will crawl into my eyes and I’ll go blind and die.

It’s really not worth being too worried about what might happen, although I’ll be the first to admit the scary “maybe” thoughts do creep in from time to time. Usually at 3am when I’m trying to sleep while having a 25-year-old-in-menopause hot flash. I’m making a pact with myself to stop Googling, though. Like today. No more research papers I barely understand until I re-enroll in college courses. Cross your fingers for me that will happen sooner than later, please.

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P.S.- if you go to http://bethematch.org and click the big button that says “JOIN”, they’ll send you a mouth swab, you send it back, and you might get to save someone’s life. If you can’t or don’t want to donate marrow, go to redcrossblood.org to find somewhere to donate blood or platelets. Either of these would be a really sweet valentine’s gift to me.