Yesterday was mostly about cancer, but the first order of the day was with my niece, her husband and their four-week old baby.
I was allowed to hold this wonderful new addition to our family as he slept, burped, looked around and cried so loud that he scared the cat.
His middle name is "Albert", after my father.
I've been thinking about my father a lot lately, especially the last months of his life as he unsuccesfully sought treatment for pancreatic cancer. It was during his treatment that I first learned that there is a difference between the words "treamment" and "cure".
Up until then, the word "treatment" had always led in my mind to "cure".
Shortly after my father's diagnosis, my father's oncologist said "There's always treatment", and as the real meaning of this statement filtered into my grieving brain, I smelled a rat.
Both my brain and the oncologist were the rats; my brain because it wanted a cure, and the oncologist because of his awful bedside manner.
Here's an example of the his awfulness.
I joined my father, mother and sister when we met with the oncologist to hear the results of the chemo. My father's cancer had started in his pancreas and had spread to his lungs and liver. He was 88 when he was diagnosed. The chemo and the cancer were wiping him out, and he chose the chemo when it was offered.
I brought a list of questions to the office visit. We were all crammed in a small waiting room with the oncologist, who said "We can stop the chemo."
My sweet Papa interpreted this as meaning the chemo had worked. His face lit up and he grabbed the doctors hand with his two hands and said emphatically "Thank you! Thank you!"
The oncologist said "It didn't work."
My father's face fell and in that instant I knew I'd never see him that happy again.
The rat disguised as an oncologist. His delivery was unforgiveable.
My list of questions were useless.
*******
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| My parents at Port Williams |
When I think about my father during the months of chemo and the few months remaining that he was able to leave his bed, I remember how fatigued he was. At first, he allowed us to take him on little field trips. I liked taking he and my mother on walks (he in his wheelchair) around Sequim.
I now think about him when I am so tired that all I want to do is lay still. I don't want to interact with others. Don't want to read. Don't want to watch TV. I'm satisfied with doing nothing.
I wonder if this is how he felt and thought.
*******
My siblings and I were able to nurse both parents during their final illnesses. It was during these times that I first noticed that no matter how much hospital and medical offices facilities try to make their public areas warm and friendly, they're not. The furniture's institutional. The art is, for the most part, cheesy. The hallways are sterile.
It gives me the creeps. I have to avoid thinking about it when I'm there. When I do think about it, I can't help but think it could be warm and friendly, but it would take someone smarter than me to figure out a solution.
*******
After visiting my niece, I had my second visit with my Naturopath. I did a download with her resident as my vitals were taken. The resident then downloaded with the Naturopath prior to her meeting with me.
She had some good recommendations. I told her about the frequent hot flashes and she recommended a new medication. She told me to take more Vitamin D. She recommended a specific hand cream to help the incredible dryness of my skin as a result of "treatment". She wants to see me next before I start radiation therapy.
*******
A few weeks ago I recieved an email from an artist who some years ago created and coordinated a lot of the public art where I work. I hadn't seen her in quite a while. She'd heard about my situation and surprised me by telling me she was going through something very similar. She suggested we meet, so we did on Thursday.
It was helpful to talk to someone else who's in a similar situation. It didn't fix anything, but it normalized my life a little. When she first walked in, I noticed she had a lot of hair. During the conversation, I saw her straighten it out. It was a lovely wig, similar to her own hair, though with dark purple highlights. She bought it as Display and Costume Supply!
I didn't consider a wig to cover my baldness. Too much work, and I would have always been self-conscious, wondering if anyone could notice. For me, wearing a wig would be lying, and it's easier for me to be honest about what's going on.
So after the Naturopath and before Crappity Chemo time, I stopped by Display and Costume Supply, in case there was an unusal wig there I could not live without. I tried quite a few on.
I didn't buy a wig. Nothing really took my fancy.
As I was driving out of the parking lot, I remembered I was heading to chemo and would get my chest port poked with the big-ass needle, so I could have the chemo infused without blowing out any veins. I pulled over to the side of the parking lot and took out the Lydocaine cream and a big plastic bandage. Like a parking lot creep, I undid a few buttons on my sweater, dabbed on the cream, slapped the plastic bandage on, buttoned up and drove to Capitol Hill.
*******
The RN who installed the IV was the one who first gave me Taxol. On that day, she said something that I've been thinking about ever since, and I took advantage of seeing her again to ask her about it.
Two weeks ago, she told me that some patients stop chemo, i.e. give up on it. Yesterday I asked her why, and she said it was a variety of reasons. She said some patients keep their diagnosis and treatment a secret, and thus don't have support. She said some patients just can't tolerate the chemo and take their chances without it. She said the ones that broke her heart were those that could no longer afford treatment.
She took my blood and I thanked my lucky stars (and my generous employer) that I have good medical coverage. I will ultimately pay hundreds for this bad trip, but not the tens of thousands it would cost if I didn't have insurance.
*******
I met with my oncologist. I told him what the Naturopath had said. He agreed with what I reported, and actually said the anti-hot flash medication was something he recommended.
This is an example of getting information from one medical professional that another doesn't happen to mention. They've all got their bits of data or recommendations or advice or information that they pass along, but there's no one source for all of it.
He was surprised how badly I felt earlier this week. That surprised me. I'm cautiously hopeful that my fatigue and crappity ailments were an anomaly. We'll see.
I asked him if I needed to keep wearing masks on buses. He said no.
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| Me being sad about not wearing masks any more |
I mosied over to the Infusion Center to get juiced up with poison. They sent me to my room and I got ready. I turned the light on over the bed, adjusted the bed so I sat up and my knees were raised, pulled out my crocheting, got my audio book and headphones primed, pulled out my leftovers, and settled in.
Why not be as comfortable as possible? If I have to be tortured, I need distractions.
Vicky the nurse came in a number of times before the chemo actually arrived from the pharmacy. She got my IV ready. I told her I wanted to put a bad cellphone photo of her on my blog.
She was eager to get me out of there so she could get home to watch Deadwood. She's pretty funny.
*******
I'm almost done here. Stay with me.
*******
So today was henna tattoo day and Carol Milne was the artist in the kitchen. Marvin Johnson came by and took far better photos than I did.
She practiced her design the night before on a wig stand.
She helped cram the henna goo into little plastic bottles for dispensing.
She displayed her multi-tasking skills by applying the henna
and talking on her cell phone.
This made me nervous.
She "knitted" me a henna hat on my head,
and the design was based on a shamrock lanyard knot.
Carol's fascinated by knitting knots.
The End.
