Today was an emotional day at MDA. I didn’t receive any bad news or have to make any life altering decisions. It was just raw. Reminders of my reality.
I had labs and a follow-up to check on my thyroid numbers since I’ve switched to the Armour Thyroid. Everything looks great, and I am not having any apparent side effects. Of course, I still have some of my old side effects such as my knee issues, one of which was operated on last week, so I can’t say that switching thyroid meds made that any better. :/ I am pretty convinced at this point that my T-Cells did a number on my joints, which perhaps already had a hereditary inclination toward deterioration. (For those who haven’t heard that report, the orthopedist is pessimistic about my knees and thinks I will end up with a double replacement. Oh, well. Maybe new ones will work better!)
The PA visited with me quite a while before my internist came in. This is one of my favorite teams. Very caring. While the PA updated all my info for the new computer system and asked all the pertinent questions, she could tell that there were a few things heavy on my mind. One was my weight. Before cancer, and for the thirty years before that, I had basically weighed the same amount, sometimes even less due to stress or whatever it was. After the stem cell transplant, I lost down even more. Then the transplant drop-kicked me into speed-menopause. My hormones were completely off. When I finally started getting stronger after the transplant, I started gaining…and gaining. Some was good. I needed it. Then they removed my parathyroid because of a lack of calcium absorption, which then made me hypothyroid and they started me on Synthroid. A month later came the CAR T-Cell Trial and my joints started going south, and the weight kept coming.
Every time I’d go to the doctor, I would ask them about the weight gain and they would just say, “You look great!” or “You are getting older, you know.” :/ And I would answer, “I’m only a year older than I was last year!” Or “I liked the way I looked fifteen pounds ago!” Or “Well, you’re not the one having to buy new clothes!” Still no answers. They just said to embrace the new weight. So that’s what I’ve been trying to do.
But I asked again today thinking it might have something to do with the thyroid thing, but I got the same answers. And, of course, with my knees being out of sorts for over a year now, I have not gotten the kind of exercise I used to. So maybe if I end up with new knees, I’ll end up with my old waist! Or maybe not. My wardrobe style has changed. I am getting more comfortable with my new shape. Not comfortable in that I don’t want to work on it, but comfortable in that it’s not what makes me who I am. And my sweetheart still thinks I’m beautiful. I sure do love him!
The other thing that my PA mentioned was how good I look compared to other stem cell patients. Thankful. And good timing! We talked about what might make that so. The grace of God was the first thing that came to mind. The second thing was simply doing what the doctors said and having an amazing caregiver to make sure I did! We talked about the various other patients she sees and how many started out unhealthy to begin with, young or old. I started out healthy…non-smoker, no drugs, not a big drinker, healthy eater, healthy weight. I had a lot going for me at the start. Supposedly that can help.
Next, I did absolutely everything the doctors asked me to do! If they said drink water, I drank a LOT! If they said rinse your mouth with some special stuff, I did it a dozen times a day. If they said not to be around sick people or any young children, then I might cry and fuss and try to find a way around that one, but I stayed away from my grandchildren for as long as I had to…so I could be with them now and tomorrow and hopefully many more tomorrows. I would wear my mask and my gloves and wash my hands after going to the store or anywhere. I would avoid gardening, which I loved! And if I cheated now and then, I would go wash right away. And I ate what I was supposed to eat, and didn’t eat what I wasn’t supposed to eat. And I lived.
And every time we turn around, there seems to be something else. You have leukemia. It’s the good kind. Oops, no. The bad kind. You’re a good candidate for a transplant. You’re in remission. It’s back. It’s MRD. What is that rash?!! Your stomach is a mess; you can’t take NSAIDs. You have osteoporosis. You can’t absorb calcium; we need to take out your parathyroid. You are hypothyroid. Here’s a new med for that. Let’s try a trial! Nope, the cancer is still there! We don’t know what’s wrong with your knees; let’s try this, and this, and this…. Oh, wow! You need surgery! You may need new knees. Your numbers are up again. But no matter what happens, no matter what the news, God has allowed us take this all in stride, give us His peace to take it a day at a time. Because that’s all any of us have…one day at a time. The one phrase that was probably the hardest to accept, even though they’ve told me this many times before, is that I will never be the same. A transplant patient, while so thankful for this life, is never quite as strong, as resilient, as enduring, as we once were. I think back just a few years ago to what I was able to do…at fifty! Five years of cancer, and all that has gone with it, has left me tired. Thankful, grateful, joyful, peaceful, but tired.
I will continue to take it as it comes. They will be checking my numbers again at the end of July. I’m praying that they’ll hold steady. Maybe we’ll get me some new knees, and then perhaps someday I’ll beat the odds and be the transplant patient that comes back stronger. We’ll see then if I care how much I weigh.
“For momentary, light affliction is producing for us an eternal weight of glory
far beyond all comparison.”
2 Corinthians 4:17
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