Day +644: A new day, a new way, I knew I should see it along.

“The sky is clearing and the night has gone out.
The sun, he come, the world is all full of light.
Rejoice, rejoice, we have no choice but to carry on.

“The fortunes of fables are able to sing the song.
Now witness the quickness with which we get along.
To sing the blues you’ve got to live the tunes and carry on.”

9/4/12: No news yet but the last post was such a downer, I think an interim update is in order. Michael and I had a roller coaster of a weekend with thoughts and emotions all over the place. 

Then I did what I do. I searched the web, I read, I analyzed, I sought a logical sequence of events, a cause and effect, a path from there to here and from here forward. Of course all the conjectures will remain conjectures, never provable, never certain. But the mathematical part of my brain must still do this, futile as it may be, before it will rest and yield to the pragmatist I am at heart. 

Then I did what I do. I thought of the potential test results – best, worst or in between – and devised a plan. So no matter what, I will carry on because that is what I do. No matter if the plan changes along the way – of course it will! But I am more at ease that I won’t feel pressured into a hasty decision in the process. I’ve thought things through ahead of time. This makes me calm and ready to face anything.

I saw my hematologist and did blood work this morning. My PET scan is tomorrow afternoon, and I’ll probably get the results Thursday afternoon or Friday morning when I see my ENT again. I have a consultation with an otolaryngologist (I learned a new word) at the Johns Hopkins Head and Neck Cancer Clinic on Friday afternoon. Depending on the outcome of the Hopkins consult, I may reschedule the endoscopy. I’ll keep you all posted.

“Ooh, I love to dance a little side step.” ***

For those who have asked if this cancer is related to the MDS, the answer is “not really maybe indirectly sort of.” Squamous cell cancer (SCC) is probably best known as a type of skin cancer but is also the most common type of head and neck cancer and can occur anywhere there are epithelial cells (lungs, esophagus, bladder, sex organs, etc.). It’s completely distinct from the blood cancer. However, statistically, there is a higher incidence of SCC among those with autoimmune disorders, those who are immune compromised, or those who’ve had a transplant of any sort. There are theories and studies regarding reasons and correlations (such as chronic GvHD, chemotherapy, immunosuppressants) but apparently nothing definitive. At least one study suggests that patients with AML/MDS harbor a constitutional tendency towards the development of SCC. I am also at higher risk for head and neck cancer because I used to smoke and because my grandmother had head and neck cancer (although I don’t know if hers was SCC).

***Bonus tagline. Michael and I had a good laugh tonight watching the film clip that goes with this song. Extra credit if you name the film and actor.


September 4, 2012
WBC: 11.7 (norm 3.0-11.2)
Granulocytes (~ANC): 6.4 (norm 1.4-9.0)
Platelets: 259 (norm 130-382)
RBC: 4.80 (norm 3.90-4.90)
HGB (hemoglobin): 16.0 (norm 11.5-14.3)
HCT (hematocrit): 48.1 (norm 34.2-42.2)
Bilirubin: 0.8 (norm 0.0-1.2)
Alkaline phosphatase, S: 115 (norm 25-150)
AST: 25 (normal 0-40)
ALT: 22 (normal 0-40)


  1. Karen I am soooo sorry to hear the latest news!! All my best to you.

    I think you can get mouth cancer from mouth GVHD.


  2. I think enough is enough. This too shall pass. And I hope very soon. I hope it is not serious. Stay strong!
    Love you. <3

    I checked the tagline. I bet David knows it. 🙂

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