Day 90 – Time Flies

Wow. It’s been 90 days now since my bone marrow transplant, and life is moving fast.

The good news is that I continue to move toward normal, if such a thing exists. All my blood test numbers continue to improve or at least stay in a decent range. 

So far I haven’t shown any major symptoms of Graft Versus Host Disease, which we call GVHD. Part of that is a credit to the close a match my donor was. Part of that is also because of the immunosuppressive drug I’ve been taking, Prograf. By, as you can imagine, Prograf has its own side effects, so I get to live with those, but believe me, they’re better than GVHD, and better than having leukemia relapse. And I still have some side effects lingering from the three rounds of chemotherapy, especially the last round I took before the transplant, because it was designed to really kick my marrow into the trash bin.

My side effects right now are:

  • The most obvious, hair loss. All of it. I mean, yes, I’m bald, but this means no eyelashes, no nose hair, no hair on my toes. All gone. This is a side effect of both the chemo and the Prograf, so I’m double sunk. More on this later.
  • A terrible sour acid taste to everything I eat. I have been able to mask it with spicy food like Mexican or Thai, or by very bland food like oatmeal. But anything with a savory flavor or a sauce of any kind ends up tasting sour and acidic. They tell me this isn’t unusual, but they can’t really tell me how long it will last – it could go away any time, or it could last a year. I have to say, this is the most annoying part of it, but one effect is that I’ve cut back eating and I’ve lost 30 pounds.
  • Swollen feet and lower legs. This started out on just one leg, my right, but now my left foot and ankle shows swelling. This happens late in the day, especially if I’ve not gotten exercise, so I try to stay active to prevent it. I can also wear compression stockings, and they really help.
  • Periodic nausea. More like queasiness, really, since I’ve never thrown up, but still annoying. Fortunately I have some good drugs I can take for it that relieve it quickly.
  • Low energy levels, meaning I get fatigued easily. This is norm, I’m told, and I’m trying hard to work by endurance back up.

    But despite all this, I’m doing well, and my outlook is great. I know I owe all this to God’s grace, and a great medical team, and to my wife and family. I also know I have a multitude of people praying for me always, and for that I am extremely grateful.

    So what about my hair? Well, here’s some more good news. Since about Day 50 they’ve been reducing my Prograf dosage, and now, in just the last week, my hair has started growing back! Granted, it’s very tiny baby hair on my head and face, but it’s there. I’ve even had to shave around my mouth. 

    Coming up is Day 100, and (oh joy) I get to have another bone marrow biopsy. Then the next week I’ve got an appointment with the whole team, and we’ll hear whether there’s any cancer left. My money is on No!

    Author: Tom Lindsay

    Just a regular guy who likes to shoot and cook barbecue. Leukemia survivor. Bourbon drinker. Chemical Engineer.

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