Friday, January 29, 2016

When Routine Medical Visits Become Worrisome

As you may or may not know, I live in Boise, Idaho. My CML oncologist is at UCLA and my gynecological oncologist is in Palm Springs. (borderline ovarian serous tumors 10 years ago) Needless to say, travel for medical check ups have become a part of my life.

On occasion, I roll in and roll out of these appointments unscathed; everything status quo; other times there are hitches.  The visit with my CML oncologist went pretty much as I anticipated; moderate pleural effusion in both lungs.

I say that I expected this because for the past six months I have been taking 140mg of Sprycel, six days a week, as opposed to five days a week, to try and get my PCR back to a ".0something" number. Three months ago it was .074, the best PCR I have had in eighteen months.

My body tolerates 140mg five days a week quite well, but every once in a while, I want better numbers and go for the gusto, upping my dose! This typically results in a great PCR, but also pleural effusion! Guess I can't have the whole ball of wax!

My next appointment was to the gynecological oncologist; this visit has been so routine for 10 years, that I never expect there to be a hitch; but this time: FOOLED YA!!

My CA125, a blood test that is used by gynecologist as a tumor indicator, was elevated. I guess up to 33 is "normal" and mine was 102. Not extremely elevated, but given my history, a CT scan was ordered "just to be safe". Grrrrrrrrrr....

As luck would have it, apparently I have 4-5 mm diameter spiculated nodule without calcification and a 3 mm diameter calcified nodule of the right middle lobe. What ever the heck that means! Hopefully NOT lung cancer!

Having to keep on top of CML is difficult enough, I cannot even imagine dealing with another serious illness!

So, here I go on another medical journey, I have already sent my CT report to my internal medicine physician in Boise, have an appointment with her on Tuesday and she has sent in a referral to a pulmonologist.

I am trying not to lose too much sleep, and trying not to give in to the what ifs', but I have to say "what the @$#!? " has come out of my mouth more than one occasion!
I often wonder whether or not I am just plain dense, and therefore have many lessons still to be learned, many challenges to overcome, or if  I am just an integral part of someone elses' learning process and journey. Either way, I certainly wish that I could catch a break!

Looks as if 2016 is starting off with a BANG!!

Blessings to all; please keep me in your thoughts and prayers if you have room, as I see many more tragic journey's than my own......


  1. I'll be keeping you in my thoughts and prayers. It isn't fair that you have to go through yet another challenge, but you will triumph! I look forward to hearing a positive update soon.

    Are you following Dr. Paquette to Cedars Sinai? I am and it was very strange walking out of UCLA for the first time in 19 years without a follow up appointment. End of an era.

    1. Yes, Virginia, I am!!! It was weird, huh?
      I forgot to ask him, but guessing PCR's will be in the international scale.

  2. I love you, my friend. I read this and started praying with all of my might.

    1. Thanks, Lucilla...doesn't it just figure? lol Love you, too!

  3. Thinking of you Michele - never sit still - imagine what you would get then - a cold bum - Just keep dancing - Biggest hugs - Sue Hurt

    1. Thanks, Sue,
      This certainly was not something I expected! lol

  4. Keep your head high you will overcome this obstacle.I tell myself this everyday I too have been going through a living nightmare to the point wherei thought I was going insane nobody believes me and the story if muscle cramps think it's a sympathy trip .Well it has cost me my job no income since Aug my works disability hasn't paid me a dime because my Cancer Dr said my problems are not from Gleevec even tho its posted all over side effects of this damn diseases medication.So lawyer invoved now then sueing ins co.too.People do not realize what we go through to lead a normal life the pain the setbacks the emotional scars everyday life has changed we have good days we have bad bad days but we can only take so much then we snap which I think I have done I've almost depleted my retirement fund and now I'm fighting back full force. I didn't ask for this damn disease I don't want to die which I will if don't take this drug so why would I make up stories about this I'm 60 yrs old I'm a survivor and I will overcome any obstacle you put in front of me . I didn't live this long to knocked down all of a sudden by cancer. We are strong we will fight may have setbacks we will overcome and we will kick this cancer in the ass. I won't be made an ass of trying to screw an ins co and I will fight them til the end .They dint know what it's like and I would never wish this disease on my worst enemy until now you live my pain then decide if I'm truthful or being a crybaby .Sorry feel better now. One step forward two back but we will overcome this we are survivors we can beat this

    1. Hi Mary,

      So sorry for all that you are going through! It really is unbelievable just how debilitating this disease can be; I am sure you get the "But you don't look sick" comments, too!
      IT can certainly be frustrating. I am pretty sure that CML is in the disability eligibility list.
      I will see if I can find it.

      Please take care of yourself and keep me posted!



Bricks for the Brave!!