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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Sunday, October 18, 2009

Ugh (or UGG) Update

I’m still in the hospital. I resisted my I can do everything myself urge. I stayed away from “being a Hillary,” and I did not bull doze my way out of the hospital despite really, really wanting too.
I had several calls trying to intervene on my decision to leave the hospital.
Surprisingly, none of these calls came from my surgical team even though my complaints included an air leak (whole in my lung) and severe shortage of breath walking short distances (80 laps around the pod= 1 mile, I could take two laps and have a room air oxygen saturation of 88%, you can do the math).
To be honest, I was scared to go home too. I would walk to the bathroom, stand up to brush my teeth, and be gasping for breath and then shaking until I could get back to my bed and nasal cannula (for my oxygen).
I live ten miles from the nearest hospital.
Your brain can theoretically go five minutes sans oxygen without resulting in permanent damage from hypoxia.
I wouldn’t have made it. Maybe I would have made it alive, but that scenario is worse. I could have survived breathing but brain damaged, unable to speak, walk, move, and/or care for myself.
But I really thought I was just being weak. The doctors were telling me I was fine. I didn’t need oxygen, etc.,etc.,etc.
I just feel like a big whiner.
Now, I realize my hemoglobin was 8.5 on October 15th and hasn’t been checked again since that date.
I was definitely fighting an uphill battle.
Hemoglobin are the cells in the body that carrying oxygen around. A low number means less oxygen carrying capacity resulting in shortness of breath.
Generally a hemoglobin less than 9 may be transfused. The only reason this is the decisive number is because 9 is the number that medicare/aid will reimburse for.
Maybe this number has risen on its own, but maybe my body has responded to the 3 years of chemo, 2 transplants, radiation, steroids, and stress and couldn’t quite rally the response needed to up that number.
No wonder I’ve been struggling.
I’m tired, hurting, and upset. Yes, I did breakdown and start Christmas shopping. It made me feel better. I did buy UGGS for someone. . . for half price at
Worse, I’m frustrated because pathology came back NEGATIVE!
I was right when I called it a “snotoma.”
The biopsy grew NOTHING, no fungus, no bacteria, NOTHING.
How the hell are we supposed to intervene and fix NOTHING?
I’ll tell you: the surgery alone was my treatment.
The tongs on the scope were able to break through a crusted barrier that had surrounded the previously infected area, sealing it off from my body and allowing the schmutz to drain out.
The liquid whatever was likely compressing a bronchiole causing the pain and previous shortness of breath.
After that, it’s all me: walking, deep breathing, and praying the whole that was made didn’t seal up so I could keep the functional area.
The abscess resided over my upper right lobe.
I like that lobe. If I had to chose between a problem with the left and the right upper lobe, I would chose the left. It’s smaller.
But no, because I am a walking, talking example of murphy’s law it would be the better lobe to go.
I finally prayed to God and tell him I couldn’t take it anymore. I want to tap out or cry uncle. This is not a fun game.
I hear that God only gives you problems you can handle. Sometimes, I wish he didn’t trust me so much.
I think he’s listened.


Anonymous said...

Don't never give up...

Anonymous said...

Perfect decision to stay put. Thinking of you all the time. Keep fighting. You know you can. If you can go Christmas shopping you must be improving