Friday, June 27, 2014

More Medical Mishugas

(cue: Happy Days are Here, Again.)

There’s little good news this week from a medical standpoint. CBC numbers in the basement (again) with another full day of tests yesterday and a repeat of more, but different tests today. Including another Ultrasound.

Numbers so low that my tired old body requires not one, not two, but THREE Neupogen injections to kick start the bone marrow into producing more cells.  Endured one yesterday after the Lab results, will receive another today while receiving 2 units of new blood, and one tomorrow morning for good measure.  Yes, the outlook is pretty grim.

A new prescription was ordered that will eliminate the high levels of iron in my system. Seems receiving so much whole blood over these past 8 months has caused iron to become dangerous to my overall health.  OK, stop laughing, ‘cause that’s what I did when they explained the reason. 

With this new med I can look forward to the joys of massive G.I. discomfort as the drug sucks the iron from my precious bodily fluids. Oh stop.  You’re just jealous, I know. 

The Oncologist dragged out the dead horse of a possible marrow transplant again, obviously having no idea where to go next in my treatment and hoping for some miraculous change in my matching status.  He even wants my old biopsy results reevaluated in case he missed something the first 3 times around. Yep, it’s come to this.

As I left him yesterday, he was on the phone with Johns Hopkins discussing my case with the same “specialist” who initially rejected my case in November, 2013.  Like that’s going to change anything?  Um, no!

While all this is going on backstage, I will continue the Vidaza Chemo treatments for the coming 3 months and hope for the best. The next 2-injections a day for 7 days of treatment begins on July 7, and you know how much I look forward to that date, I’m sure.

The problem with the Neupogen is that it make one’s bones actually hurt.  Almost like you have the flu.  We all know those aches and pains, don’t we?  Yes, but this pain is of a stand-alone type with no other underlying symptoms which makes it a very bizarre experience, indeed.

So, here I am wide awake at 2:30 a.m. getting organized for a long day between hospital and cancer center; being poked, prodded, and riffling a lot of paperwork around to be sure it’s legal and (most importantly) covered by insurance. 

I don’t feel terrible, just very stressed, depressed; tired of being tired, out of circulation, and alone most of the time.

And so it goes.


  1. Oh, C. what can one do that's more than mere platitudes? There's so much worry in this posting yet the most frightening word I can see is right at the end - 'alone' . I can most identify with this being the loner that you are too (though in my case it's been through choice, which will very likely sometime come back to bite me as it's doing to you now.) I so wish there was someone there to support you rather than health professionals just doing their job.
    My thoughts are with you - and we can only hope that your next post will reveal that you've good reason to feel upbeat, though it might be hard to see that right now. Digits are crossed.

  2. I just read your post and blog for the first time. What is your diagnosis. I have myeloma and did have a BMT, it was pretty awful but I gained remission. I've since relapsed but I'm on an oral chemo. Check out my blog. I've done neupogin and didn't have the awful bone aches. Just tired a lot. Hope it goes well for you.

  3. All I can think to say is "I'm sorry". My thoughts are with you and I hope things turn around for you - very soon.

  4. I wish I were there many a times, but for times like this even more.

  5. I hate I can't be there in person for you. Since I can't be, you must simply stop the shenanigans at once. I will not hear of it anymore.

    Hoping for a better tomorrow for you


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