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."

Get a playlist! Standalone player Get Ringtones

Tuesday, October 6, 2009

Today is the tomorrow we worried about yesterday.

I don’t really know what day it is. Even being in your most acute state of mind in a hospital setting can make you confused.
I do have a clock, but if I want to know the date, I’m at the mercy of the nurses. Thank goodness for my blackberry for keeping me oriented. I can now confidently tell you today is Tues. the sixth.
Thank you blackberry, because there is certainly no time here EVER that is inappropriate to bust into my room to squeeze my arm, stick a rod in my throat, and then ask how I am doing.
I usually try to sleep through these periods even through they are also q&a sessions.
I know they’re doing their jobs, and really, if something bad is going to happen, it will be at night when everything is quiet and everybody is feeling secure.
Weird things do happen at night in hospitals.
Yesterday did not quite go as planned.
The CT guided needle biopsy never did happen.
I got to interventional radiology, got on the table, and after gasping and fighting for breath from traveling between stretcher to table, the good nurses starting the versed and the fentanyl to use my pain.
Only problem there is that my density somehow, magically, shrunk, and was no longer large enough to biopsy.
On the surface this sounds like good news.
Let me assure you, it’s not. The absess could have descreased due to positioning. This “spot” in my lung has been a pain in my chest since September, some nasty, pathological process is happening, and now, my health care team is after it.
Option number two is to retry a CT guided biopsy where a larger piece of lung tissue is taken to ensure that we receive an adequate amount of the offending spot to answer our questions.
Questions such as : What the hell is it and why is it in me?
More specifically, is it bacterial or fungal? And if it is easier what type is it.
Option number two is a little more invasive than what I was facing yesterday. This would require a larger incision with more healing time, a high risk of a pneumothorax whereby my lung deflates and requires a chest tube to keep it inflated along with the possibility of a chest drain for the bleeding and fluid resulting from the insult.
This is option two, because option on basically failed, I have an option three too.
This involves open cardio-thoracic surgery.
This option does not excite me as it requires a significant portion of my chest wall be opened and then a scope placed through to the offending area to gather a tissue sample which can then be biopsied to guide treatment.
I could be having my chest cracked opened, and this option would scare me. I may be paralyzed with fear if Adrienne hadn’t just died due to a fungal infection in her lungs that ran rampant because it was confused for a bacterial infection.
This is one of those “damned if I do, damned if I don’t” moments where the decisions I am given are bad and worse.
To top it all off, yesterday prior to the procedure the surgical fellow asked if I had any specific advanced directives he should be aware of.
I was stunned, speechless for a second.
Was he asking if I had a “do not resuscitate order?” Have I come that far that a DNR would be a reasonable option?
I said I had advance directives that put my husband and JW in charge of my care, but since neither were present my mom could make decisions.
This was my answer, but I’m not even sure if it was the answer to the question he asked.
I almost did blurt out the question to Dr. Meehan et al. this morning as to whether I should look into revising my decision to be a full code in light of how extensive a case I have become.
Today I don’t feel like I’m dying.
So today I didn’t ask the question.
I decided to use my body as a live health care dummy to show off all the war wounds from treatments past.
I am at a teaching hospital. I always did enjoy teaching.
I never did think the teaching would happen based on the pain I was suffering and the experiences I had been through, but hey, I think this may be a more effective method of treatment.
I humanizing a story makes it more memorable and will hopefully make the students who treat me better practitioners one day.
I had my turn to poke and prod at patients as my test subjects. What goes around comes around. Now it’s their turn.
I do know that Dr. Meehan, the current in-patient attending and my previous out-patient back-up transplant specialist post-allo, Dr. Gautier my very first, alpha hematologist and current doc who has held my hand and guided me through this whole horrible process, and Dr. Alyea, my Bean town transplant guru who rules over my body are having a meeting of the minds regarding what direction I will take sometimes soon.
My lymphoma dream team in commencing on my behalf.
Let’s cross our fingers (toes, legs too) and hope they come through for me like they have so many times before.

1 comment:

Chris said...

Hey Hillary, sorry to hear you're in the hospital. I hope they can get what they need (tissue) without digging around too much. Also hoping it's something that will resolve quickly and you can get on with being your feisty self!

Rooting for you here in Michigan :)

Chris Carr