This post was written and posted by Alabama Pink, now an alumna of Mothers With Cancer.
Before I begin: I’m thirty-three, smug married, and wrangler to a wacky two-and-a-half-year-old. In April of this year, I was diagnosed with acute myelogenous leukemia. Based on the sub-type of AML that I have (The Mean and Nasty Kind), the White Coat Folks have recommended a bone marrow transplant as part of my treatment. The entirety of this post resides at Whoa, Camel.
At the beginning of this month, my family and I had a meeting with the VCU bone marrow transplant team , and since then I’ve gotten about 20 pounds of literature about the whole process, from soup to nuts. Needless to say, that kind of volume of information can overwhelm a gal. The one big impression I’ve gleaned from all this reading is that the bone marrow transplant process is going to suck. Big time. Unfortunately, it’s the best possible treatment for my subtype of AML, which, with chemo only, will return and will be more aggressive upon it’s return. My leukemia would most certainly be the death of me if untreated or treated improperly. On the other hand, I could die as a result of the bone marrow transplant. Totally not cool. BMT is not a cure for AML; I’ve got cancer not polio. Still, I consider it the strongest course of treatment to buy me more time on this earth. So them’s the facts, and I’ve got to put on my big girl panties and take my medicine.
The best metaphor I could think of for a bone marrow transplant is from Ender’s Game. It’s like wiping out the bugger race and then sending in human colonists to live in the abandoned bugger settlements.
See, the transplant process breaks down like this: Once a donor is found and coordination for the marrow harvesting completed, my butt is tossed back in The Big House. First, my body will undergo radiation treatments twice a day for six days, followed by two days of chemo. The real serious bitchass side effects will come from this treatment. The radiation/chemo cocktail will seriously inflame my mouth, throat, and GI tract, making eating unpleasant and difficult. My diet will be kept strictly bland for this purpose, and if it becomes necessary, IV nutrition will become part of my treatment. My energy levels will crash and burn. Rashes are a common side effect, and so because my skin is already super rash-prone, I’ll probably end up looking like Miss Hiroshima 1945.
Once the site has been thoroughly nuked from orbit, just to be safe, I’ll get my transplant. It’ll go down a lot like a regular blood transfusion. From there it’s a waiting game. Waiting to see if the new cells graft properly. My immune system will be trash at this point, so my risk of infection is doubly high. The White Coat Folks will have me on a myriad of drugs to prevent infection, as well as to manage any graft-versus-host issues that arise. Just like any transplant patient, I’m at risk for rejection. My new immune system will more than likely attack it’s new host body in some way, shape, or form. The drugs will hopefully manage the severity of the attacks. From what I’ve read, a mild case of GVH is a good thing. One of the more common GVH symptoms is a skin rash. AWESOME.
This stint in the hospital will take a month at least, if I don’t develop serious complications from the transplant that would necessitate a longer stay. I’ll be able to have visitors, just no sick ones. I’ll be completely confined to my room. In other words, the best four weeks of my life.
Once I’m deemed okay enough to go home, I’ll need a full-time caregiver. For the first few months, I’ll have daily clinic visits and multiple transfusions. My medicinal routine will be quite extensive. I will more than likely run high fevers and need hospitalizations. There will be strict neutropenic precautions to follow-no fresh fruits or vegetables, no “dirty” chores, no contact with the cats, no cooking that involves raw foods. I’ll be mostly confined to the house, no visiting places with large groups of people, and if I want to take a stroll around the block, I’ve got to mask up.
This semi-seclusion will last anywhere from six to nine months, followed by a slow reintroduction into the germy wide world. I’ll still be monitored pretty closely to make sure my new immune system is grafting properly. Still taking a crapload of pills. There will also be monthly bone marrow biopsies to make sure my transplant also kicked out the leukemia. I’ll need to get all of my baby vaccines again.
For the next year to year-and-a-half, my life will suck. There is a strong possibility I could get super-duper sick from the BMT. GVH could kick my ass in all kinds of crazy ways. I could also suffer long term side effects from the radiation like thyroid issues or other cancers such as skin or mouth. (Unfortunately, I won’t get any keen powers from all that radiation. I was really looking forward to being able to blow stuff up with my mind or something to that effect.)
This is the giant white wall that has been thrown down into my path. I can’t see around it or over it to the other side. I have no idea whether or not the treatment will be successful or will make mincemeat of me. I might not live through this or I could live my life with a body all chewed to hell. Naturally, this terrifies the living piss out of me.
At this point in the game, I need to start throwing all that fear shit out the window and start trusting in God. Better said than done folks. Job said it best that we accept good stuff from God so much better than we accept the not-so-good stuff. Time to start flexing those faith muscles.
But I’m gonna get there. I’m heading for the morning sun.