The initial results from last week's tests show that I have a very large ulcer in my stomach. Whether this is related to GVHD or not will be revealed in the biopsies, which should come out at the end of this week or the following week. The bad news is that the ulcer is very large and covers a good portion of my stomach. The good news is that the ulcer has not yet begun to bleed and my team already has a plan to get things under control. There is no discussion of surgery or anything else invasive at this point.
Now that I know the cause of my stomach pain, I am making some dramatic changes to my diet. My wife has been good about cooking some very bland food and researching home remedies that might help. She already has a plan that we've put into practice, and I can already feel some results.
Today I was really hoping that I could begin attending church again. There's a local pastor who has been very good about keeping in touch and providing support. Unfortunately, I was up all night from the stomach pain and continue to battle pain management. The doctors assure me that my pain medication will not exacerbate the ulcer; however, it just seems to make sense that the more medications I can reduce, the better off I will be in the long run.
So let's recap here:
It has been 125 days since my transplant. I still have a small remnant of the BK virus plus two other viral infections, which have left me very fatigued and in a state of general malaise. I now have this ulcer, which we are praying is just that--an ulcer and not gut GVHD or worse. Physically, I feel very disabled and can only walk a mile on a good day. Meanwhile my muscle has almost completely atrophied, my weight is now close to the 150s (down from the 190s), and my body shape is like some amorphous blob. My appetite is gone, I hate meal times, and I can't taste food. After eating I usually need an hour in bed for my stomach to calm down. My days are still busy, but I do seem to get one full day off per week. As for good news, the cancer is still in remission and my body appears to be accepting the donor's cells. Also, I am very thankful for all the treatment which has kept me alive this long and continues to show promise.
I'm often asked how I'm doing--a question that I really don't know how to answer. I certainly wasn't expecting this many setbacks nor was I expecting this much physical pain. Instead, I was expecting to be further along than I am now, and I was hoping to be on a more defined road towards recovery. Yet, God has grown me in ways that I could never imagine. I wish that I could say He were done so that my family could get on with their lives, but His plan is not mine and He knows what is best. I have to continue to stay strong in my faith and push myself when I can.
Have the doctors recommended or ordered probiotics for your gut ? All evidence in medicine point to the immune system residing there and the importance of re-colonizing ,following antibiotics, cannot be underestimated. Is this something that cannot be introduced at this point due to immuno suppression ? Again . we are all praying for you. Love, Lisa
ReplyDeleteGreat question Lisa. My wife and I are very good about making sure that I get an adequate amount of probiotics. The doctors aren't opposed to that, but they don't want me taking straight probiotics (the powders or whatnot). The reason is that they are unsure as to how those probiotics will interact with my immunosuppressants (I am still on 90 mg of Pred, 3 mg of Tacrolimus, and 0.5 mg of Sirolimus). However, they are in favor of me eating yogurt or drinking kiefer, which I do. Other than that, my wife is using home remedies such as boiling and drinking the juice of cabbage, which seems to have a very positive effect already. Also, I am going to talk to the team about introducing aloe vera into my diet. Of course I stay away from caffeine, alcohol, fried food, spicy food, and anything known to exacerbate an ulcer. It's easy to do that considering I don't taste much. Meanwhile, the oncologists have upped my dose of Omeprazole so that I take it twice a day. Other than that, they are going to wait on the results of the biopsy before any additional moves.
DeleteThanks for asking and thanks for praying.
Thank You for that reply. The cabbage juice is great; experimenting lately with homemade sauerkraut for that reason. Have a great evening.....Lisa
DeleteThanks for the update. Praying for you here!
ReplyDeleteHey Nathan, thank you for the updates...I continue to pray for your health and it's nice to be able to log in to hear the latest. I'm sorry to hear about the ulcer but am so encouraged to hear that the transplant is holding up. Stay strong brother, we're rooting for you for however long it takes!
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