I did not experience the worst side-effects of Bone Marrow Drano (explained here) and the "invading" stem cells (a.k.a. donor cells) until a few days after my transplant. All three things, TBI (here), chemo (methotrexate), and stem cells, would effect me all at once. Basically, I had three time bombs in my body rigged to explode at the same time.
Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. In other words, all the skin sloughs off from your gums to your intestines (and further down) leaving agonizingly painful, bleeding sores. My doctors told me that 70-80% of patients receiving a bone marrow transplant experience some kind of mucositis.
I, however, was determined not to get it. I was proud of my mouth care before and during cancer treatment. I brushed and rinsed multiple times a day, and so I was surprised when I began getting mucositis right after getting my new stem cells.
And I didn't just get a little oral mucositis. I got a lot, and I got it bad. I knew I had pretty horrendous mucositis when my nurses, who daily the horrors of cancer and death, felt sorry for me every time they came into my room.
Methotrexate was one of the leading causes of my mucositis, and is often the cause for many cases of oral mucositis during chemotherapy or a SCT.
Within a few days, my mucositis had gotten so bad that I could no longer eat, drink, close my mouth, or even swallow my own saliva. Speaking was agony, even breathing hurt. They gave me a suction tube that I could use to clear out my mouth of blood, skin and spit.
To really understand how horrific mucositis is, I have to show this picture. Those of you who are squeamish should turn away...
That's a picture of spit, blood and chunks of my gums collected from my suction tube. They had to empty this a few times a day because I kept filling it up.
The pain was indescribable. I'd say it felt like chewing a mouthful of broken glass and then swallowing it... and you ALWAYS have a mouth full of broken glass. Imagine that pain, and then multiply it by 100 and you kind of get the idea.
Within a week since my transplant I was unable to eat or drink or take any of my oral medication. My doctors switched me to liquid food and IV medication. My machines looked like this:
That's on a light day. Most days I had about twice as many bags of life juice pumping into me.
So, the issue of food, liquid and medication was solved. All that remained was something to ease the pain. And I say ease because there was really not enough medication to completely nullify the pain, save the medication of death. During the worst of the mucositis I was on three different opiates: Fentanol, Morphine and Diloted. This constant stream of pain killers pumping into my veins made for an interesting cancer cruise.