Day +71(Feb.21st)-“Exactly five months since I was diagnosed…”

A couple of days ago I had a great visit from my friend Crys and her beautiful children, Alexa and Zack. Our kids had a blast playing together. It was such pure joy to hear them laughing and see them running around. I really enjoyed my visit with Crys. We sat and swapped cancer stories. Not that cancer stories make the best stories, but it is interesting sharing the different perspectives—as a parent with cancer and as a parent with a child who has cancer. Some of the things we have learned are that cancer SUCKS and it changes you forever. Five months, while they’ve gone by fast, have seemed like an eternity. I can’t imagine how hard it would be to endure it for over two years as her family has had to. Alexa is such a fierce fighter, just like her mom. I’ve learned so much from the way they’ve fought and persevered. They are such an inspiration of LIFE and LOVE. Please continue to pray for Alexa and her family. I know first hand just how valuable the prayers are.

Thursday, the 21st, we had our weekly visit to the clinic. I know we keep saying that every visit has been the best but really today’s visit was quite likely THE best. And could have been even better if not for a little hold up by the insurance company.

I’m officially off the Prednisone (a steroid-used to prevent GVHD). Yeah me! Hopefully this means that better nights are ahead and I can actually start sleeping again. Something for which I’ve been yearning for over a month now. We’re praying that the GVHD doesn’t flare up in the coming weeks. That would be a significant milestone—not developing acute GVHD in the first 100 days post-transplant. An interesting comment on the Prednisone: over the next two to three weeks I will begin to see a more significant development of my muscles and less aches and pains as they begin to repair and rebuild. Steroids are so weird! They made me eat non-stop, kept me awake, suppressed my immunity even more than it had been by Prograf, and slowed muscle development. But ultimately controlled the GVHD. Crazy!

My CBC’s are still pretty good with the exception that my RBC, HGB and HCT are all a little low. I’ve never quite gotten those into the normal range, but since they dropped a little since the last visit, Dr. V wanted to give me a Procrit shot. But alas, our insurance company, whom had already approved several Precrit shots, denied the injection today. The clinic said it may take 90 days to gain approval. This could be sped up by us calling and bugging them. Most of the time this tactic works. In the meantime, I just have to hope that my body naturally increases my red blood cell counts. Dr. V said the low counts are most likely due to a couple of my meds, so she’s not worried. It’s just that having more red blood cells could help me to have more energy. All I’m thinking is that I need more sleep! Chasing those Zzzzzs…. Another insightful piece of information: the beta-blocker, the one I take with the blood pressure medication, may also be a culprit in my afternoon fatigue bouts. Dr. V’s solution: take the beta-blocker later in the day so when I am ready for bed that fatigue just might be enough to send me to sleep! Interesting. Dr. V said that this kind of fatigue is especially common in women who take this medication. Oh, well, better late then never. Still might be useful.

She also said that I could have my Neostar scheduled for removal. This will take place either March 4th or 11th. I’m pulling for the 4th as I’m ready for these chest tubes to be gone!! They aren’t too annoying, but they’re a constant reminder of everything I’ve had to go through these past 5 months (exactly 5 months today since diagnosis). And I’d just assume not be reminded. My bald head is enough. Which, by the way, is less and less bald by the day. In this picture taken one week from last week's, you can see even more hair!

I wanted to announce that today I had to PLUCK a few stray eyebrow hairs! GASP! It almost seemed like a sin to remove one strand of hair from my head! But, and I know the girls will understand, there is nothing more annoying that having a stray eyebrow hair staring at you in the mirror! But what an exciting milestone! I’ll be back to regular plucking in no time!


Also, I don’t have to go to the clinic next week!! If all goes well, next week will be the first week since the last week of August that I won’t see a doctor!! That’s crazy!! Not that I mind the doctors, after all they’ve helped save my life. It’s just that I could use a break, and this is a giant leap towards returning to a “normal” life. Ahh, normal. If only I could remember what that was like….