Shouldn't we be accustomed to the roller coaster nature of being diagnosed with cancer by now? It's crazy. The last two and a half months have included the deaths of 4 people in my Survivor's Group, my father's passing after a struggle with Alzheimer's and dementia, and my own CT scan indicating a recurrence of tumor in the operating bed of my pancreas - that is one heck of a Screaming Eagle drop.
Clarence and Joyce were a couple of people that helped me find an even keel when I first joined the group. Clarence had that rock solid faith that some have that gives them the strength to face the most miserable circumstances with great peace. He had one lung left when I first met him and it "wasn't much good". Joyce came from a more secular direction in her struggle with her disease, maintaining her gentle and sympathetic attitude no matter how large the fearful lumps at her lymph nodes became. Simone came to the group later with a great zest for living and a clear understanding (and extremely muted) grasp of the short time she had left in her struggle. The last guy only made it to group twice, I think - angry as all get out at the injustice of leaving his beautiful young twin daughters.
The last time I saw my Dad he asked who I was at least 6 times over the weekend. We had a great time that I will hold in my heart forever. It was after my diagnosis, which I chose not to share with him, and he still whipped out some great jokes, clever stories, and the fascinating intricately remembered snippets of family history that are often more available to Alzheimer's patients than how to eat chips with dip. Dad passed the first week in July.
My CT scan on July 23rd show a wee 75 mm spot on the operating bed of my pancreas. It's about the same place that showed some activity last November. During our meeting (me, Vicki, and my brother Patrick) with Chemo Kaufman, he offered me "months" of life, options of pain management or if I "really wanted", he'd give some more chemo, and he suggested that we contact hospice. Wow. We stopped on the way home and had some (a lot?) great tequila that still remains unidentified by brand.
While I initiated wrapping up some of the details and thought about what to do with the apparently short time I had left, I also fired Chemo Kaufman, researched clinical trials that might be appropriate for me, thought about who I wanted for my outside-of-Kaiser second opinion, asked my radiation oncologist Dr. Lampenfeld to re-evaluate my records with a thought to giving me more radiation or maybe the 'Cyber Knife', and hooked up with Dr. Arora (nickname to be determined). Arora came recommended by a number of people in my group and especially Joyce. He was confident that we had a number of treatment options that would be helpful to me and he gave me a fistful of trials that
he thought might work for me. He and I acknowledged that pancreatic cancer sucks, big time, but looked far more positively at a future, regardless of the difficulty in getting there.
After calling all of the trial people, it turned out that I wasn't qualified for any except possibly a vaccination trial at the University of Chicago. So I made an appointment with the esteemed Dr. Hedy Kindler at the University to coincide with the family's visit to Chicago to remember my father, at the Bomberpalooza. I thought she could give me a second opinion
and give the yea or nay on their trials. Following a truly great party with nearly every Thomas Paul Cosgrove relative in attendance, and a couple days of golfing with the brothers at the most idyllic location in Wisconsin, my entourage and I steamed into Hedy Kindler's office for some talk.
Dr. Kindler actually referred to my previous diagnosis of palliative pain care and hospice as "nutty". I could have kissed her. She said that I have plenty of treatment options, none of which are currently necessary. She is not completely convinced that my cancer has recurred. The spots on my pancreas and the "slight, so slight", statistically insignificant, increase in my tumor marker increases could be a result of damage done to my guts by the radiation and chemo treatment I took at the end of last year. And while I may theoretically be qualified for the trials she is overseeing, she doesn't think that I am currently sick enough to be enrolled.
So now what? I got home from Chicago and Dr. Lampenfeld has scheduled me for a PET scan aimed at figuring out if radiation is an option. I have an appointment with Arora ostensibly to determine with him what my course of treatment is going to be. But Kindler doesn't think I need to start any treatment right away. All of the doctors think that cancer's still a part of my life that sucks, and I need to be mindful of it and listen to what my body tells me. Kindler kindly added the caveat that a headache is usually just a headache - it doesn't very often indicate tumors in your brain.
I guess I'll get the PET scan and see what's up. Kindler is anti-radiation, and pled with me to get a second opinion if the first one came back encouraging using the cyber-knife.
Until then.
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