Tag Archives: mds

Moment for Celebration!

Today my bone marrow biopsy came in looking “beautiful,” as Dr. Concerned put it–they could not see any cancer cells in it! (They are still doing the genetic tests, but it’s unlikely they will turn up anything bad, since the tests they did already are good). Yay yay yay! I should have know the biopsy was good the minute I saw Dr. Concerned, because she was smiling (beaming, almost) rather than looking concerned. My awesome dad came into town to go to the appointment with me. Thanks, Dad!

I’m definitely not out of the woods yet, as my cancer could recur–myelodysplastic syndrome does this too often, especially in the first couple years after transplant. I’ll be getting regular bone marrow biopsies for follow-up–hopefully from Nurse Practitioner Brusque Yet Friendly, whose skills are excellent at holding down the extreme-pain-time to just the first pull of marrow. Although Dr. Virginia did a particularly good job the last time he took one, too–when he was putting the needle into my hipbone I thought he was still just putting in the lidocaine. Until the first pull. But hey, bone marrow biopsies only last a few seconds, and have the positive effect of enabling me to feel all hardy and survivor-y.

mmmm...Union Market.

mmmm…Union Market.

Anyway, the point is, so far, so good! I’m really grateful to God and to everyone who’s been praying and offering emotional support. Now I just concentrate on recovering my energy, avoiding sunburn, and being careful as my immune system recovers.

And on food. After the appointment Dad took me to Union Market to stock up on some flavor. (Yes, I know gentrification is complex and often problematic, but I want a $30 bottle of balsamic vinegar, darn it!) Unfortunately, the pate de campagne has to wait another four months at least, as I’m too immunocompromised to eat deli items. And Dr. Concerned vetoed soft cheeses for now. But we had some Takorean (yes, bulgogi in tacos…it’s really good. For real, try it if you get the chance.) We also got me some groceries, including some “heartichino” sausage from Red Apron Butchery, which I later cooked until it would have made Nathan Anda’s heart very very sad, but my oncologist’s reasonably peaceful, to see it–and it still tasted a-MAZ-ing. Thanks, nose-to-tail foodie charcuterie trend!

Happy weekend, everyone!

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Drumroll please…

Well, I got my bone marrow biopsy on Thursday (along with a bunch of other tests), and sister who’s donating to me got a bunch of tests. The results we have so far look fine, so the key thing will be my bone marrow biopsy. If it shows that the Vidaza has decreased the amount of malignant cells, as I think is likely, we’ll go ahead with the transplant. I should hear sometime between Monday and Thursday morning (when I and my dad meet with the MDS specialist at Hopkins).

In between now and Thursday, the radiation oncologists will do some last-minute consulting about the total body irradiation part of the prep regimen, given my pre-existing radiation damage to my spinal cord (damage about which I’m not complaining–the lymphoma never came back, after all, and I can still walk a mile a day with a cane for balance).

I feel like I’m at the top of the roller coaster…

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Yay for platelets!

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So on Monday I saw Dr. Virginia, and he said it was “encouraging” that my platelets were continuing to increase (even on day 24 of my Vidaza cycle, a time when normally everything’s a little lower). Here is the chart that I had Excel make:

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If you have MDS, I recommend making a spreadsheet of your blood counts to help see patterns–but also bearing in mind that there is apparently a lot of randomness in these things, so don’t assume that noise = signal (especially since decreased counts can be a side effect of Vidaza). So consult your doctor for help understanding your particular case. In my case, one of the clearest effects MDS was having on my counts was decreasing platelets–I didn’t start Vidaza until the start of October, and as you can see the platelets were dropping consistently before that. Now, they vary a bit during the Vidaza cycle, but are trending up. A hopeful though not definitive sign that this drug may be doing its job of getting me ready for transplant!

Dr. Virginia also said I could get on an airplane to go spend Christmas at my parents’ house with my sisters, so here I am. Yay!

My immune system is still super low, though (even more than before). Phil, come back–I know we can work this out…

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.