Meeting the Gastroenterologist
Here's what the George Carlin page-per-day calendar says for today:A meltdown sounds like fun. Like some kind of cheese sandwich.I'm not having a meltdown, but I need to remember that for when I do.
Yesterday was a really great day. I was at Dana Farber most of the day but I did some Christmas shopping with my mom and ate lunch at the Cheesecake Factory which is always a good time.
I learned more about my chemo treatment. I'll have chemo and radiation through Mid-December and will get another 5-day push in January... and another 5-day push in February. So by March-ish maybe I'll feel like a human being again. And I finally know the dates of things. They were keeping them from me like some sort of secret for whatever reason.
The best part of the day was meeting with the gastroenterologist.
Dr. Stoffel is wonderful, and made me realize I should have seen her a looooooonng time ago. But what did I know? She explained to me how my stomach is working now and why it is doing the things its doing.Donna: "Why does it seem like they don't know how to handle her at the Farber?"
Dr. Stoffel: "No, they wouldn't know, this surgery is extremely uncommon."
Donna: "They couldn't figure out why she was so sick."
Dr. Stoffel: "It's completely understandable..."
When you think about it, imagine how few people have stomach cancer where surgery is possible. Very few. Most are terminal. And of those who can have surgery, most times the cancer is at the bottom of the stomach. More rare is on the side. Mine was the most rare by being at the top. In order to cut "within the margins" my esophagus had to go too. So it's almost like I had surgery for esophogeal cancer. Except even THOSE people get to keep their entire stomachs. It was nice to meet someone who was sympathetic and understanding. Yes, this does suck and it will suck going forward for some time. Once chemo is over I'll likely be able to find some kind of normalcy. And that's very promising.
And get this... She thinks I *NEED* a craftmatic adjustable bed. And we might be able to get INSURANCE to get it for me because she said she'll sign off. Prescription bed, I love it!!
I finally got hooked into a care coordinator (that took MONTHS!!) who's supposed to help me get into a stomach cancer support group if one exists (which I doubt), help find transportation, and really just help with whatever I think I need. I have been asking for a coordinator since I arrived at the hospital in early September!
Anyway, yesterday was such a great day I'm going to live vicariously through it for the next few days. Today hasn't been very good but I'm trying not to pay attention. :)
posted by Jen at
3:16 PM
8 comment(s):
Whoo-hooo!!! I'm excited for you - that must be a relief to finally be able to talk to someone who understands how you're feeling (and, not least importantly, why). Glad to hear.
By
Anonymous, at
10/27/2005 4:49 PM
A much better reaction than the "you shouldn't be this sick" folks! Glad to hear you've got her on your side and it sounds like she will be a huge help to you.
It must have felt good to get out of the house and do a little shopping.
By
Anonymous, at
10/27/2005 5:26 PM
ooooooooo .. that was weird I was just doing some internet searches on craftmatic beds or those wedge pillows I mentioned to you before.. was going to try to convince you to give it another thought...
I know this all sucks - I REALLY hate that all this is happening to you.... But you're doing really great. I'm so proud of you. Keep your chin up...stay strong.
BTW - I agree with Grandad (as I told you before) you're an amazing writer, you should write a book!
By
Anonymous, at
10/28/2005 12:22 AM
It's great to hear that you finally have found a doctor who is symphatetic and also very knowledgeable! And that you will get a prescription bed, and a coordinator! (You do have to wonder why that took so long... must be hospital disorganization.) Have a good weekend!
By
Anonymous, at
10/28/2005 9:18 AM
You & your mom must have such great times. Try shopping at Whole Foods Market. You will be pleasantly surprised at the varity of rehydrant drinks that are available. Their food is also chem free. At this point, you have an ample amount of chems in your system. You have a tiny stomach & I have *no* large intestine. We make great neighbors huh.
Take care & be good to yourself
Janice
By
Anonymous, at
10/28/2005 4:57 PM
So pleased you had a promising day and that bed deal sounds great...*grin*
Minerva
By
Minerva, at
10/28/2005 5:40 PM
linda said . . .
Did Karen mention you needed convincing? !!!
My vote is go for the adjustable bed--can she 'prescribe' a tempurpedic mattress or at least a tempurpedic wedge? . . . Hopefully you will be able to get some better rest or even 'hibernate' this winter.
I'd like to say "ditto" to A. Karen's remarks that you should write a book.
You are an inspiration to lots of us who are not dealing with such a difficult illness too. Maybe the secret is figuring out what we can control in life and what we can't and roll with the waves . . .
Thinking of you . . .
cousin linda
By
Anonymous, at
10/28/2005 7:44 PM
Did you hug that doctor? How nice to find someone that seemed to get not only how you've been feeling, but why too.
Can't wait to see pictures of you in your new prescription bed! Hmm, I wonder how long insurance takes to get that paperwork through the pipeline? Hopefully asap.
Jenn Crane
By
Anonymous, at
10/29/2005 7:55 PM
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