Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, May 7, 2010

Body Update

It wasn't all that long ago that I couldn't even sit still to enjoy the morning silence.
I was constantly fidgeting, moving, thinking of things that had to be done.
If I succumbed to my craving for coffee, the caffeine would send me flying off the roof before 7am.
Now, I can sit, relax and watch tv.
I can drink my coffee and soak in my morning dose of pessimism though the Bloomberg report or news.
That's the only pessimism I allow myself.
After this point, once X wakes up, my game face is on.
I'm lucky I've always been able to dissociate myself from my disease.
It's a talent I got from nursing.
By the way, it's Nurse's Appreciation Week.
Appreciate those nurses people!
Nursing taught me to separate the disease from the person.
As a professional this is an important aspect of holistic healing.
As a patient, it's been imperative to my psychological well being. I can see my disease as a problem outside myself that needs to be fixed. My cancer and I are not one and the same. I am not my disease no matter how much it tries to take over.
And my disease is still trying to take over.
I spent the day at DHMC yesterday, Dr. G and I dissected my lab results trying to solve the mystery as to why my hemoglobin is trending downward (it's 9.0 now) while my erythropoietin is only slightly elevated.
Good news is, it appears my kidneys are functioning ok despite the tumor that could be threatening them.
I am all ready taking folic acid to aid in production of healthy red blood cells.
I don't drink, which would alter them.
I'm going to try B12 shots, once a week for four weeks.
B12 deficiencies are generally vague in symptoms and there isn't really any contraindication to adding it to my medication regimen except I have to give myself a shot.
No problem there.
However, it's benefits are still being discovered. It could possibly help my fatigue, shortness of breath, and impaired memory.
I also paid a visit to the techs in Pulmonary Lab, who reminded me I forgot to give them photo-cred from our last visit.
Those were some damn good pictures, thanks to their fun character.
There going up now.
Dr. W (the pulmonologist) requested baseline PFTs while I'm feeling well (I didn't even take my tank to New York this past weekend!).
Results for all you who care and can interpret them (I'm not among those people today), FVC 2.91%, FEV1 0.92, Dsb 13.39, DsbHb (that's corrected for my hemoglobin of 9) 16.09.
My resting pulse oximetry was 96%, that's pretty damn good if you ask me.
I'm back for more pheresis today.


Loraine Ritchey said...

You are one terrific lady and I just want to say that the nursing staff at the Cleveland Clinic ( apart from one) in both ICUs were absolutely wonderful.I trusted them more that some of the "other" professionals :( and one in particular I will never forget although in my fog of terror at the time I never got her last name but Heidi you were more than a nurse to my were our life line.... I am sorry I never got to thank you properly and maybe one day when I am no longer emotionally incontinent and can deal with what life has dished out I will try and get in touch and let you know how truly wonderful you were as well as the nurses in H22 bed 6.thank you and to all who give comfort, including the writer of this blog.... Loraine

Loraine Ritchey said...

You inspired me to at last say thank you to those that helped my son through his journey