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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Saturday, October 25, 2008

Coming Home PTSD

I’m anxious. I’m glad I have my blog as an outlet, because I think I have post traumatic stress. I’m not post anything. I’m still waiting for the shoe to drop. I’m waiting for the bad news. I’m waiting for the setback, my reoccurrence, anything awful.
I’m home now, and I’m amazed at what health care professionals depend on patients to self report. For example, I need to watch my temperature, anything over 100.5 I must immediately report. My life depends on it.
Any redness, itchiness, or oozing from my central line must be reported before I get septic and become confused. This can occur very quickly. One time, my line go infected, I didn’t realize I was in trouble until I called the doctor and wasn’t coherent. By the time I reached the ER, my blood pressure was 50/30 (120/80 is normal) from the diffuse dialation of my circulatory system as a response to the bacteria.
I felt great from the endorphins. I was very relaxed. It’s a comfortable way to go down. It’s quick I vote septicemia for my death, in my 80s.
It took 4 liters of saline to compensate for the dialation, but it didn’t, my blood pressure remained 60/30. I got an overnight in the ICU where I got the rigors (uncontrollable shaking from fever, seizure-like).
Three days later when I decided it was time for my body to suck it up, I played mind over matter and took a nice hot shower. I ended up naked, passed out on the floor. I couldn’t reach the pull chord.
When I did the nurses kept saying I fell and needed to stay in bed.
I kept saying I just sat down in the bathroom because I felt light headed. I sounded like every single one of my patients who had ever experienced the same problem.
The nurses countered with the fact that I was naked, sleeping on the floor, but I had my story and I was sticking to it.
I need to report any rashes, that could indicate GVHD. Any change in bowel habits, any sores, excessive vomiting, neurological problems, urinary retention, sever pain, etc., etc., etc.
All I can say is if our providers are so dependent on us to relay our symptoms, patient education needs to be improved. It needs to be made interesting.
I have a 5 page essay outlining how patient education needs to, and will, eventually be changed. I’ll bore you with it some other time.
I feel like I have a lot to say. I’ve researched my situation like my life depended on it. I can’t go down and take my information with me. I need to get my thoughts out.
I wonder if I’m pleasing God, and if this is what he has in mind, and if it is, then do I get a pass from all the scary side effects. I’ll have to reference Fr. Stan on that one.
I’m also (gasp) starting to make plans for the future. I need to stop immediately. I’ve made plans before. Then I relapse, I have a set back, and the news is so much more difficult to take because I have started to think about my bright future.
I’ve been accepted on four different occasions to graduate school. My first relapse occurred after I started my classes. Those people have graduated by now. Every other time, I’ve relapsed immediately after my acceptance. I’m not applying anymore, but then why did I bust my ass to get my 4.0, graduate number one in my class, and rack up all sorts of latin awards?
I am stalked by grad schools. Everyday I get job offers in the mail, mail from colleges recruiting me, and medical bills. I don’t even have a license.
Then I think about how I’ll get my license, do I take the class or challenge the test? Who cares? I don’t need a license right now.
I should be planning my canceration, where I go someplace warm and foreign to celebrate my survivorship.
But no, I’m planning out my dream job in my head and working out the details, like what grant I’ll write and who I’ll smooze to create the position I designed.
I don’t work to live, apparently, I live to work.
Currently, I’m trying to get attention to the issues that we as patients face. I want my ideas to be exposed in a young, urban, sassy way (ala me). I hope people are listening and considering what I may have to offer in the future.
There has been a change in the demographic of cancer, it is becoming younger. This is an observation, it is also a fact. Art is beginning to imitate life, and there has been an insurgence of education and support groups geared to the 18-40 set. I want to take it up a notch.

1 comment:

Lina said...

you know, it's ok to work to live. that's what i do all the time. but "live to work" should rather say, live to dream and accomplish those dreams. dreaming requires work. I'm beginning to understand that more. And it's ok to dream, isn't it? I miss you and I hope you get better soon. Then I'll drag Roxy to drive up to see you. Or in a couple of months, we can go on another island vacation...heheh.