Yesterday, I went to my appointment with Dr. Patil, my primary Oncologist. Mom and Lori came also because I am their only entertainment. I had hoped that a definitive treatment plan would come out of this visit, but alas... That wasn't to be. Everything rides on the Octreotide scan being performed next Wednesday. This scan will definitively state whether my primary cancer is a carcinoid of the mesentery or a small cell tumor involving the bowel. Also, it will show if two possible spots on my pelvic bone are metastasized around the ilium.
There are three possible scenarios.
1) Small cell tumor in the primary would lend itself to radiation for my arm and about six months of aggressive chemo.
2) Carcinoid primary, pelvic bone involved; then radiation to my arm and possibly my pelvic bone. Surgery is possible, but not necessarily so. No Chemo, but a biological shot in the butt once a month for possibly 5 years.
3) Carcinoid primary, pelvic bone not involved; then radiation to my arm. Surgery to remove carcinoid in the mesentery. No Chemo, but a biological shot in the butt once a month for 2 - 3 years.
Dr. Patil told me that I'd eventually become bored with coming to his office.
Tomorrow morning (Sunday), I have an MRI scheduled at St. Vincent's of my whole left arm. This is being done to get the exact tumor location in my arm. It shouldn't take long after that to begin radiation on my arm. This is what I'm most looking forward to, because even writing today's blog is very painful.
I'm scheduled for a follow-up appointment with Dr. Patil on 10/10/08 to determine what the other course of treatment will be. The chances are really good that I will get no chemo, and therefore not lose my hair (much to everyone's disappointment). Mom will drive up for this appointment, but alas... Lori will be in Idaho. I will have to recount the dialogue in that appointment to Lori using interpretive dance. I may even through in a ribbon dance if it is specially good news!
Overheard in 2016!
6 years ago
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15 comments:
Someone suggested that I have Colleen and Mom tape the appointment so that I won't miss out on any of the fun. I am very sad that I won't be there for the "Big Reveal" (I'm not talking about the proposed "Butt Shots") I will have to console myself with fun visits with daughter,nieces, nephews, aunts and uncles.
Ask Lindsey about full-moons... she's pretty good and some gross ones.
I'm really glad that this is starting to be narrowed down to specifics.
I vote for number 3. Sounds the easiest to me. Only 2-3 years of butt shots and no chemo!
I'd also appreciate it if you set up a video camera on a shelf so we can all see you do your ribbon dance!
Interpretive dance! Colleen, this could be a great opportunity to bring back the spirit of the beatnik poetry craze of 1980's Meridian!
I could don my little black beret, grow back my goatee, ( it's easier these days,) and dust off my bongos!
The room is dim, lit only by one...flickering...candle. You enter and...
Butt shots!
"beatnik poetry craze of 1980's Meridian" Oh Susan, what a great oxymoron! I'm putting that on my favorites list of oxymorons. After I organize my ribbons.
You can borrow some of Claire's "hair" ribbons..."hair" in quotes because she still doesn't really have any. And if you want to add some tap dancing to the interpretive/ribbon dance equation, you know where to find me. If you don't have to do chemo and lose your hair - horray!!! Although i was looking forward to the dreadlocks....
I found a great site for carcinoid cancer with good information, support group and everything. So go here if you want to find out more about carcinoid cancer. http://www.carcinoid.org/pcf/index.shtml
I wonder if they have a special carcinoid handshake and cerimonial beanies for the conferences???
Colleen-I was thinking that even if you didn't need chemo (hopefully you don't) you could still use this as an excuse for a chance to shave your head if you wanted to. Or another wild and crazy haircut. Or really you can use this an excuse for any outlandish behaviour and when people ask, you can just say, I have a tumor I can do whatever I want.
I've had several people try to get me to shave my head anyway. Mom wants me to practice by cutting my hair above my shoulders.
I've been opening my bills, and its been an eye opener. The CT and MRI scans from one day alone were over $7,000. Remember how expensive healthcare is when you decide to drop or go without insurance. Remember this also when it comes time to vote. My insurance and I won't be billed the full amount because of contractually obtained lower rates. However, if I was indigent and not covered by insurance, everyone else would would be billed for the entire amount through higher insurance premiums.
When this is all said and done, the fully loaded bill could easily top $50,000.
Today, Lori and I went to get my left arm MRI at St. Vincent's. This is an "open" machine, which was supposed to be better on me position wise than the standard cylindrical MRI machine. It was just shorter is all. I was still squeezed, however, I got to keep my arm to my side, and not bent at an unnatural angle above my head. I wonder what today's scan will cost.
But Shots -- hummmmm -- bet you could sell tickets to that one lower the out of pocket costs. I know about the costs - Thank goodsness for insurance even if they can't get it right. Just forked out $65 for Rodger's pre surgery prep kit the insurance didn't cover because some of the ingrediants were natural. Go figure. Rodger was looking for an ink pen to right stay above this line -- guess which line he was drawing on his lower tummy area. Hey don't forget I am being held captive at St. V being in charge of another Butt circus (cute though)which is starting at 5:30 am tomorrow with the main surgery attraction at 7:30 am.
Colleenie,
I have a question...
Will you be using curling ribbon?
If so, What color?
Just askin.....
When has anything ever stopped Aunt Colleen from being outlandish? She doesn't need tumors as an excuse.
Hey Colleen, I worried about your silly putty. Have you asked the doctor how all of the scans and radiation is going to affect that? I'd hate for it to dry up, then you might need an excuse to be outlandish.
Wouldn't it be funny if Colleen didn't have to have chemo so she didn't think she was going to lose her hair, but then I filled her shampoo bottle with nair and she lost it anyway??? Just asking......
I am getting my radiation dose right with you... its just at a nuclear power plant.
I am getting my radiation dose with you... it's just at a nuclear power plant.
Since Colleen was going in today to get going on herarm radiation Chantile had an assingment for me yesterday. When Colleen told her boss that she'd be getting radiation on her funny bone he told her that he hoped the silly putty wouldn't leak out. When Chantile heard that there was a small crack in Colleen's humerous she got quite concerned. So I had to go buy some silly putty for Colleen to take with her so that if any of the silly putty in her funny bone did indeed leak out during the radiation, she could replace it, because we don't want every other sentence coming out of her mouth to be un-funny!
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