Notes From Supergirl

My Diary from the Trenches

Day 626

February14

Happy Valentine’s Day! Before I get to celebrating with the 5 males in my life (Dad, Brian, Ty, Kieran and Grady) I just wanted to do a little update. I have nothing particularly exciting to report except that I have very clogged sinuses as confirmed by a CT scan today. I actually ended up going down to the hospital over the weekend because I was having horrible sinus pain and running a low-grade fever. The doctor had started me on another antibiotic but then the fever came so that required a double-check in the clinic. They swabbed my nose inside and out and the test results today showed that I have nothing viral, which is great news. I was a little worried about having the flu or something along those lines. Fortunately, it seems that I just have a terrible case of congestion. My doctor actually thinks it could be related to allergies, which I only started to develop in the last couple of years. But with the weather being warmer than usual this year, apparently allergies are striking earlier than usual. The prescription – lots of nasal washing and sprays. Fun stuff. I’m sure you all are thrilled to learn these details.

I’m almost off of the steroids that I started when I had the rash. Just 3 days left. And today my doctor decided to cut down on one of my immune suppressants which I am thrilled about. I have been having a lot of jitters and headaches and this can definitely be related to this particular drug so I am hoping that I will be a little more mellow in the coming days. Of course I am also keeping my fingers-crossed that no rashes or other graft vs. host issues crop up. My counts have also dropped since tapering down the steroids, but the doctor thinks they are close to plateauing. The reduced immune suppression and the approach of my 3-month post-transplant anniversary should mean that the counts will start to come up and stay up very soon. No more bouncing around. I am REALLY looking forward to that!!!

So all in all things are good. I’ve also been making a few more public appearances. I actually went to my younger son’s school for a conference on Friday. I know, of all places to go out in public for the first time! Fortunately for me, I happen to get tested for all kinds of viruses two days later and we now have confirmation that the outing did not make me sick ;) Just for the record I had the sinus problems before I went to school. I’m still being very, very cautious.

In other news, my hair is not really growing yet. I have some very fine, barely visible hairs all around my head, but I don’t really consider it hair growth yet. The immune drugs could actually be preventing my hair from growing more quickly. My doctor said it could take 3 months for it to start growing. Boy do I have high hopes for March – hair growth, a clean biopsy and normal blood counts! Let’s hope it doesn’t disappoint.

Okay, before I sign off you know I have to do one of my lists. In honor of Valentine’s Day I thought it would be appropriate to do a top 10 list of things I love right now. I say “right now” because there are easily 10 things I love all the time but these are the things I have been enjoying lately, along with some perennial favorites.

  1. My family. Goes without saying that all my boys are always at the top of my list and all of them for different reasons. Ty for being Ty, Kieran for being Kieran and Brian for supporting me and putting up with the emotional roller coaster that is me. And of course my Dad and the rest of family near and far. I’m a lucky gal.
  2. My friends. My friends rock! I have had so many awesome visits with new friends and old friends in these last few weeks at home. I am grateful for all of you!
  3. The song “Good Feeling” by Flo Rida. I heard this song for the first time on the day I was driving home from the hospital after finding out that I was at 100% donor cells. It captured the feeling – this unbelievable feeling that I literally had never had before – perfectly. Not only does it get me through my runs and my rides, but when I start to doubt things, I put it on and it reminds me that no matter how I feel that day, my body is doing what it needs to do.
  4. Dark chocolate covered espresso beans. I don’t drink coffee anymore so this has become my caffeine fix.
  5. My personal chef Dawn who does her last day next week :( She’s been awesome.
  6. Meagan, my babysitter, friend and all-around savior. Not only is she amazing with my kids, she’s taken on the task of shopping for my ridiculously specific organic, specialty foods at Wegmans. We are all remaining sane and eating well because of her.
  7. Evernote. My friend Robyn introduced me to the Evernote app a while ago and I am addicted to it now. It is my way of organizing recipes, creative ideas, projects, everything. If you haven’t used it yet, I highly recommend it.
  8. Run Like a Mother. I mentioned it in my last post. Read it and run.
  9. Oprah. I’ve always liked Oprah, but in the last two years I’ve started reading her magazine, watching her shows on OWN and following all this stuff on her website. She never fails to inspire me or introduce me to something new. I know it’s a little cheesy but I can’t help but love what she does.
  10. Living life. I think that covers it!

Comments are closed.