Slipping and Waiting

Yeseterday I went shopping and decided to shop like someone who really didn’t care too much about food. OK, I bought a head of lettuce, but I also got a can of mandarines, a box of processed frozen fish, instant pudding mix and a prepared microwave meal, the latter recommended as food I should be eating when I am neutropenic.  I asked Jess to make the pudding and as we sat down to dinner she announced: Mom, this food is so… not you. I had to laugh. I have felt a kind of resignation and am suddenly less conscientious about food as my numbers come up. I am feeling sorry for my blood cells that are showing significant improvement. Little do they know they will shortly be wiped out of existence. Poor things.
More waiting, which brings on pendulous bouts of boredom and panic. Boredom leads me to blogs, which then lead to panic. There is a curious (disturbing?) dearth of personal testaments from survivors of bone marrow transplants.  I have learned really quickly to start at the end, to make sure the person actually survived. I got lured into one person’s video blog that ended suddenly and then the next entry was an RIP! Yikes! OK, moving on…
A forum search led me to the only conversation mentioning alternatives that I have come across, and even that was frustrating. Why do people expect miracles from one thing or another? I wish people would stop throwing the word “cure” around. There is a lot of talk that a BMT is a “cure” for MDS and other bone marrow diseases, but the simple fact is that it isn’t. A patient’s chances are increased, but the disease can also come back for some. There were people claiming that a particular diet or lifestyle change can “cure”.  Though we can manage certain aspects, we really can’t control our health, no matter how well we eat, how much exercise or how many supplements we are taking. There are just so many variables out of our control– the environment especially, outside and inside. It makes stories of healthy people getting ill so inexplicable because we tend to look at the obvious sources. And then there’s just plain fate! It was in this frame of mind yesterday that I wrote a brilliant response to such entries on the marrow forums about nutrition and bone marrow disease. No one was really addressing the issue to my satisfaction anyway, which was basically that NO ONE can guarantee a cure, and if you think macrobiotics or veganism or a super supplement can, you are being naive. Then as I hit post, it disappeared and I was informed I had not logged in WHICH I HAD. So I was deflated by that and kicking myself for not previously saving it first. A brilliant rebuttal, lost to the etherworld.
I did find a very detailed play by play of a survivor (at least as far as her last blog which was a few weeks ago) who I discovered is a nurse. I appreciated her meticulousness in reporting every single drug she was given and how it affected her. So many highs and lows, triumphs and pitfalls, even into her second year post transplant. Through much of it she complained of serious GI problems and it wasn’t until months of suffering through more drugs and tests that she went to a specialist who suggested she change her diet (no dairy or gluten). Nowhere did anyone think to suggest probiotics or other supplements to repair her battered intestinal tract, beaten down by, as she herself acknowledged, excessive use of antibiotics. This is a nurse!  And worse, no one she encountered at her treatment center offered any such suggestion. Baffled by this ignorance, I did a quick search and came up with two TWO! references to probiotics and chemo. One was a helpful hint from Livestrong that yes, it can help but check with your doctor first as it can actually complicate the bacterial functions in the gut. The other reference was to a 2 year old case study and a couple of critiques to it about use of probiotics to “manage chemo induced diarrhea”.  I brought this concept up pretty early in my meetings in Ottawa when I made it clear I would pursue alternatives to manage side effects and was pleased to hear that it was an acceptable consideration. I know this is the kind of care that requires heavy drug treatment, but there must also be ways to protect organ damage without using other drugs that cause organ damage.
Now I am off to have some coveted mother-daughter time. Trying to keep things real and not upset the routine. So far, so good.

2 thoughts on “Slipping and Waiting

  1. You seem so focused; finding information that others have missed or never thought about. This is a blessing for many going through this or will go through this. Thank you for your commitment to helping others as you help your own situation. All the best, Mary

  2. Wow Sus, I think it’s amazing how much knowledge and research you have acquired. It’s surprising that the medical/medicinal and healing/nutrition worlds don’t seem to collaborate all that often.

    Your focus and determination is incredible. What an excellent example to model for S. and J. It’s like this kind of focus:


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