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Saturday, March 10, 2012

blah, blah, blah...

Got a  call from the Rheum Tuesday morning before my 1 pm appt.  Turns out my White Blood Count was 1.7 last week (lowest # in acceptable range is 4.5), they figured it was an error, so they wanted to re-check before my appt.  I practically pulled my neighbor Anna Lisa out of bed and she brought me to the office.  WBC today was 1.4 - guess it wasn't an error.

Rheum has no Auto-Immune Disease diagnosis.  There are a lot of symptoms, but nothing definitive on the blood work.  Only good news today - STRONGER DRUGS for the arthritis pain!

She called my Oncologist with the WBC news who seems "unconcerned"...her word, not mine.  When Shane kind of cornered her for some kind of "something"...she said she thinks the decreasing WBC is the root of the problem...now just to find out why....

once again..back to locking all of my doctors back in the padded cell until they talk this out...

Since I had my EEG on Monday and I'm to the point of needing some serious anxiety and depression meds, I'm trying to demand an appt with my neurologist for this week (he doesn't want me taking anything that will mess with my head, but he hasn't seen the mess that I have become over the last two weeks).   Plus there was some talk that the seizure meds might lower might WBC, I want to see if the meds typically lower the WBC this much...As luck would have it, Dr. Olson, my Neurologist RETURNED my call - major points for him!  He gave me the approval for some mind altering drugs (just wants me to stay away from a few - I can totally handle that) and he is NOT taking the blame, or rather letting Topamax take the blame for dropping my WBC into the "bubble level".  During chemo when it hit 1.0 and below I was ordered home to stay as isolated from everyone as possible and I was put on an antibiotic as a proactive measure - this ain't my first rodeo.  My Neuro (who specializes in Cancer patients) mentions that he thinks I have either an Oncology issue or a Rheumatology issue - ding ding.  Too bad one doctor can't find anything and the other is "unconcerned".

I was fired up last week.  I even called the Oncologist to get an explanation about why he was "unconcerned".  His nurse called me back...laughing....explaining that Doc didn't want to doctor me to death, and he thinks that the low WBC is bc of Chemo and he can do weekly blood work if I want him too....SO not the point...If you remember, on the last two PET scans, I had two spots glowing in my Bone marrow.  Doc was concerned - almost enough to do a Bone Marrow Biopsy.  But then I went to the hospital for meningitis and shockingly my WBC jumped up close to the good range.  Oncologist explained those "spots" must have been my Bone Marrow working Overtime to make lots of WBC.  Made sense to me and Shane (with those CPA letters behind our names - we tend to trust the MD's).  Even two weeks later, I had blood work in his office and my WBC was very good, so he suggested cancelling the March PET scan.  That sounded reasonable to us with the good WBC coming out of the mouth of the "MD".

A month later, WBC in the toilet and I'm ready to be "doctored to death"...

So after a LOT of crying (me not Shane...) we decided we'll have more blood work on Tuesday with the Rheum.  We are realistically predicting that the WBC will continue to fall.  We also predict Rheum will still have no diagnosis.  We will demand the PET scan pronto and if the spots are still in the Bone Marrow, we think it's time to bite the bullet and have the horse kick me in the hip and do the Bone Marrow Biopsy.  It's the ONLY way to take cancer out of the picture.  Then, maybe we get we start getting second opinions on the Rheumatology side.  So if you know of an excellent Rheum in the Baton Rouge Greater Area, feel free to pass the name along.

Whoa....  this was a long post, but there was quite a bit of background info that I felt was important...Tomorrow I'll post something cute and non-medical!!  


This made me laugh for at least 5 minutes...hope it had the same effect on you!!

6 comments:

Celeste said...

We had our fundraiser for Relay for Life last night so reading your post is really hitting a few heart strings. Whenever I hear the Miley Cyrus song, The Climb, I think of my aunt and this morning I turned on the radio and it was on. Coincidence, I think not. I think of you more than you know and pray for you as well. Please don't get knocked down in the rodeo. :) You are amazing!
http://www.youtube.com/watch?v=jpTYG_Sqqdg&feature=fvst

Anonymous said...

Heather, sounds like a maze best navigated by you and Shane-the two with the best comprehensive picture. I'm rooting for your WBC. Sorry you continue to deal with this stuff. Maria

Jason Marsell said...

Stay on it, girl. We love you and miss you from Denver...wish we were closer to give real hugs.

Jeanne Pellerin said...

Heather, praying that you get the answers you need. Remember, the docs work for you!!! Keeping you, your husband and your beautiful babies in my daily prayers.

Dawn H. said...

If I didn't have pneumonia I'd be at your house every day this week, bringing you the conditioner and Coke Zero that I can get for free (cuz I am the coupon queen, baby!)... however, you don't want the germs my family is harboring! So glad to see you're posting, fitting into your high school earrings, AND demanding mind-altering drugs (well, I'm not sure that's what you called them--maybe that was a little extreme) because you deserve them, young lady. You remain the coolest! P.S. Call or email if you need a ride to the doctor or drugstore or whatever. My stint as Typhoid Mary has gotta be up soon and then I will happily chauffeur you!

Anita Houston said...

ROFL!!! I so agree!!! Sorry it's been so long friend! I am reading fiercely to catch up.