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."
Monday, October 13, 2008
I had my first scheduled out patient infusion yesterday. Somehow, being the lucky woman I am, I got put on the early morning schedule. My first dosing time was 7:30 for my methotrexate. My time today was 8:00 am for my velcade.
I can see the rationale of being scheduled for these times. I’m taking pains to isolate myself, and the dirtiest, most populated place I have been since Oct. 3 is the clinic.
The clinic, really is in theory, not cancer patient friendly, but I haven’t heard any other suggestions of how to make the health care system more user friendly. My exposure to possible infections through the clinic is a well recognized issue. Dana Farber seems to recognize this and educates fairly successfully on how to minimize my risk.
I wear a mask and gloves always. I pull the curtain around my chair to create a barrier. The nurses should be sitting me in an isolated location, like in a corner. I sit myself as far away from other people as possible.
I don’t chit-chat. I don’t socialize. This is especially hard.
I love cancer patients. I love their curiosity. I love the boldness of their questions to other patients. It’s comradely. I can see myself in them.
I’ve been asked “Is that a cancer that kills you?” right after giving my name and my diagnosis.
How many people have wanted to ask me that but didn’t. There’s a no holds barred philosophy. We’ve all ready been exposed and humiliated, and we don’t feel like we have the time not to cut to the important topics. We are too tired, too overloaded, and overwhelmed not to get to the information we want and quickly.
I get treatment details, thoughts, and emotions that I never received as a professional.
I’m happy I’ve been allowed to view this side, the patient’s side.
Yes, happy, that’s what I said.
It’s a perspective few are given. It will make me a whole person.
Life looks different from lying on a stretcher or sitting in the infusion chair, not just emotionally, but from a visual perspective. I don’t think this fact is considered when addressing patients. You don’t know what it’s like until you’ve been on the other side.
My favorite quote used to be “We’re all lying in the gutter, but some of us are staring at the stars.” I’m staring at the stars.
It is still difficult for me to be sitting in a room and to have a group come to inspect me (I call them the doc and their doclings), and discuss my case without allowing me to interact.
My interaction is generally limited to answering questions regarding my symptoms, but I can’t allow that. I need to know what they’re thinking and if their opinions agree with mine.
I’m compulsive when it comes to knowledge.
So I treat my doctors like people. Shocking, I know, and I get their opinions immediately.
It’s a little bold, but it is what is best for me.
I also don’t hold to the idea that the residents are smarter than I am. If they’re getting taught about my body, I should be educated too.
I’ve never really been a jealous girl. I’ve, in general, received what I wanted in life, but I am starting to hate a little bit on the residents, the PAs, and the NPs, especially the ones who are close to my age. If you are within ten years of me, you’re on my shit list. You have what I want, and I can’t have it.
I try to keep these feelings under wraps, but I did have it out with my first NP when I came to Boston.
She’s older than I am, with short hair, and cute clothes. She’s urban. She facilitates research for a living. She has a personality similar to mine. She could be me, in 15 years, and I decided she had what I wanted and didn’t appreciate it.
I have never, in my life, felt like that before.
The process of starting my clinical trials was difficult. I got “lost” in the system for about 5 weeks. I had a friend, call a friend, and then another friend on my behalf. They found me quickly, but I was pissed. I was treated like I was a dumb ass who didn’t get how the system worked when I was trying to get myself found.
Then I found out the trials only had twenty patients. How do you lose one of twenty?
Anyway, so I came down for my montage of tests, only to wait an hour and a half for this woman, to be told that my tumor had shrunk in size, and she didn’t know if I qualified for the study.
Not a problem.
Then she said, “I’m not going to do your bone marrow biopsy today. You’ll have to come back for that some other time.”
Oh, hell no. I told her that riding in a car for 6 hours was much more painful and inconvenient than drilling that 14 gauge needle through my hip and extracting my marrow. The process would take two seconds, and the scars were all ready there to guide her.
She said that if she did the test and I didn’t qualify, then I would have a painful procedure done that was unnecessary.
I informed her that bone marrow aspirations are not that painful, and if she didn’t do it, I had left the Celtics parade for no reason.
She was stunned. Apparently, in her twenty years of practice, she’d never had a patient get pissed about not doing a bone marrow biopsy.
I lost the fight. I ended up hauling my ass down to Boston on July 3, the day before my sister’s wedding, and the Friday before my treatment was set to begin.
I calmed myself down, and told her how I felt. I apologized. I was misbehaving. I really do like her. Now, we’re good.
So, I’m trying to keep my feelings in check. It’s hard when I have to see all these cute little woman with their great jobs and young families living a life that I can’t have.
I don’t have this issue with my doctors. They can have their degrees from their first rate colleges. I’m not really interested as long as they don’t treat me like I’m an idiot.
Being treated like an idiot is a pet-peeve of mine. Not much makes me want to slap a person more quickly.
So there’s my confessional for the day. I’m tired. I have other ideas to move on to after my lunch, my nap, and some phone time.