D + 58 - More milestones

Hi my name is Todd and it’s been 15 days since my last posting. I have to apologize. With Courtney’s increase in energy and alertness and overall improvement, I figured she would takeover doing her own updates. After all, who knows what’s going on better than her? But alas, she’s saying that her mental acuity isn’t quite there yet. She’s even blaming it on chemo brain. But I don’t think she can use that excuse any more, since hair growth is a good sign that the chemo has all but worn off.

That’s right, as of Saturday, February 2nd, we officially found new hair growth on Courtney’s head! What a great milestone! Saturday also marked the first day since all this began that her energy level was greater than mine. (I was feeling a little under the weather.) It’s amazing the improvement she’s made over the past three weeks.

Since her last discharge from the hospital, her greatest battle has been with insomnia. This is likely a side effect of the steroid, prednisone, that she’s taking to prevent GVHD from flaring up. She’s tried just about every form of legal sleeping medication known to man (not together thankfully). The last one, Lunesta, she tried for the first time the other night. Just as she was taking it, I was reading an online forum where people had posted various comments about the efficacy of Lunesta. I chuckled out loud as I read comment after comment about the awful taste Lunesta left in peoples’ mouths. My favorite was the one that described it tasting like a herd of wild animals nesting in their mouth. Hearing my laughter, Courtney asked what was so funny. Not wanting to give her any preconceived notions about the new drug she was taking, I quickly made up a story. Needless to say, about thirty minuets later Courtney was climbing out of bed exclaiming that she had the worst taste in her mouth. I had to apologize for laughing at her expense. The worst part was that it did nothing to improve her night’s sleep. Sorry, Court.

Fortunately, her nights have slowly improved through the course of the last two weeks. It’s helped that her prednisone dose has been decreased by 10mg with each week’s visit to the clinic. After starting at 50mg, she’s now down to 20. In two weeks, barring a GVHD flare up, she’ll be done with the prednisone altogether. During Thursday’s visit to the clinic, Dr. V mentioned that the completion of the prednisone would also mean the completion of her Mycamine. Mycamine is the broad spectrum anti-fungal medication that Courtney receives every night via her Neostar catheter. Anyway, since she is no longer receiving blood products, there are two remaining purposes for the Neostar: blood draws and the Mycamine. In two weeks, the Mycamine will be complete and Courtney’s blood draws will go from being weekly to every other week. SO, if she’s willing to put up with a needle stick every other week, she can opt to have her Neostar removed!!

While the Neostar has been a great blessing, as it has saved Courtney from countless needle sticks, she’s more than ready to have it taken out. She can’t wait to be able to take a normal shower without the “taping up” ritual and without the worry of getting it wet. The PICC line in her arm was much easier to cover and it only took us three days to figure out how to cover it up properly for a shower so it wouldn’t get wet. In contrast, it took us almost two weeks to figure out a decent way to cover up the Neostar, and we’re still trying ways to improve it (she had it placed back on December 3rd). So you can understand the excitement she felt when she was told she could likely have it removed in two weeks! This would put the removal around D+71, much sooner than the 90 to 100 day mark we anticipated.

And just when you thought there couldn’t possibly be more good news, Thursday also marked the first day since Day 0 that Courtney’s platelets were within normal range. They dropped to 132 on D+1 (normal is 140 – 440), reaching an all time low of 9 on D+9 (Dec. 21st). Thursday they were at 147!! You can cut her and she won’t bleed…as much.

With all this good news, and with our lives beginning to take on a sense of normalcy, it seems like this roller coaster ride is finally coming to an end. Unfortunately, much like a real roller coaster, this may be just the part that makes you think it’s almost over, only to throw in a couple more unexpected twists and turns. In the case of the real thing, that would mean more fun, but this has been more like the roller coaster ride from hell, and we’re ready to get off!