I'm going to first start this out by saying that my daughter and husband are the most supportive, patient and amazing people for going to every doctor visit with me; my partners through all of this, and I could not thank them enough for being with me at all times.
Many people may look at me and think, "she doesn't look sick." And to those people I say, "thank you!" There are days when I feel completely fine. Then other days, I can tell that my blood levels must be low because I'll be light headed, dizzy, and just exhausted. These days I up my green leafy veggie intake to boost my blood with Vitamin K, Vitamin C, potassium, and all the other great things stuffed in those amazing foods.
Now, if you've read any of my blog posts or have followed any part of my journey, you'd know that I have worked incredibly hard at helping my body heal. Granted, I had major surgery in December (breast implant removal + capsulectomy), and to see that my body bounced back better than I felt before is a huge testament to my dedication to heal. The food I eat, the supplements I take, the products I use, the exercise I do, and more... they all contribute to my healing regimen.
So last week I had a slew of doctor visits, and while some were uneventful, others I try to focus on only the positives.
I saw my primary doctor (whom I adore!) and we created a plan of action for when to have my next blood tests done, when to plan for another bone marrow biopsy, and other details. Next up was the dermatologist (for my Sweet's Syndrome). I'm finally down to 2.5mg of the steroids for my skin, but those stubborn sores are coming back since I'm getting off the steroids. The bad part of this is, the dermatologist doesn't have any other options for treating the Sweet's Syndrome at this point. Typically, they'd taper you off the steroids and put you on some sort of immunosuppressant medication to control the sores. In my case, the oncologist says "no way!" to the immunosuppressant drugs due to the MDS, so my option at this point is just topical steroids to try to diminish the discomfort from the sores.
Huge bummer that they're coming back, BUT I am happy to finally be getting off the horrible steroids. This will allow us to get a more accurate read on my blood tests too. So the next visit was with the oncologist. While he would prefer that I start on light chemotherapy, he respects my decision to refuse it and go forward with alternative treatments. He wasn't too supportive on my mention of Vitamin C IV's (not that they're bad, he just doesn't believe there is any documentation to the benefit for MDS), but I have found the benefits outweigh not doing anything, so I will continue.
They did draw my blood at this visit (even though the steroids could alter the results). Here's where I got bummed. My WBC, RBC (hemoglobin), and platelets are all low (1.88, 8.1, 80 respectively). Well, poop. I have to admit, I was a bit deflated after hearing that, because I was really hoping for higher numbers. Now, here's where I get a little more upset too - he asked if I had any questions and I mentioned that each time I go to the oncologist (the old one as well), my numbers are lower than at my general practitioner. Thinking maybe it is a stress response that my numbers lower, he snapped saying something along the lines of "oh you think we manipulate the numbers?" Um, no (but maybe?)
So after I left there, I called my general doc to see if I can get in for a CBC real quick so we have other numbers to compare to. They could get me in the next morning. So in less than a 24 hour period I'll have 2 blood draws to compare to. I won't have the results of the CBC from my primary doc till later this week, but it will really be interesting to see how the 2 compare.
And lastly, today I visited with a geneticist. My oncologist referred me to her, to do testing to see if genes have any predisposition as to how I showed up with MDS being so young (without prior chemo or radiation exposure). She drew some blood and we'll have more information on that in about 2 weeks. I also had her draw a CBC, so we'll get an idea of what my counts are again. Since I'm feeling better than I was last week, I'm hoping the numbers are up some.
Until next time....