Crazy week. Kind of checked out from updating folks. Anyway, had the MRI done Wednesday. Now the waiting begins again. Dr. Shlenck should get the results today or Monday. Most likely they won’t make any decisions until the tumor board meets on Thursday. So my guess is no news for at least a week.
The prescription they sent was wrong. I requested a new one and gave them the fax number off my business card. Now, as you might guess, I have little use for faxes in this day and age and never noticed that the number on my card was very old and no longer a fax machine here at the office. Called yesterday afternoon and gave them the right number.
So to answer the next most common question. No, I don’t have the prescription/order yet.
Soon. I hope. I’ll continue to pester them.
Just spoke to Dr. Schlenk. The tumor board reviewed my case yesterday. Short version “We are all scratching our heads.”
Path report called it (sure I’m mangling this a bit and I’ll have the written report Monday and clarify) a Fibroblastic Myofibroblastic Proliferation. They think it’s a Myofibroma. That’d be good. However, the surgery was risky and to prevent risk of stroke etc he didn’t dig deep and there’s a chance he just got scar tissue (which the above would show as) and not the actual tumor it surrounds. Part of what leads them to this conclusion is that it was so hot on the PET scan.
So, new MRI next week to check against the baseline. Then they are pondering another more invasive biopsy surgery that’ll have to include a surgical Ear Nose and Throat team.
So the battle to figure out what it is so treatment can begin continues. The battle against stress is beginning to really show on the whole family.
Last night as I sat in my normal fret about this whole thing mode a possible scenario came to mind. The results of my pathology came in last Thursday or Friday and they need to be presented to the tumor board to decide what to do next. Not a scenario I was happy to think about.
Just got voice mail from someone at the clinic. She didn’t have my results, not in the computer yet. But she did know that either this week or next my case was scheduled for the tumor board. Ugh. Now this doesn’t rule out anything good or bad I don’t think (well maybe the best case has been ruled out).
The tumor board meets every Thursday to discuss cases. So I’m hoping I’m on the agenda this week and maybe will hear something in the afternoon.
So all I really know now is there is a tumor (we knew that) but don’t know if it’s malignant or not. Status quo continues as the family continues in a hunkered down and wait on the news mode.
[Addendum] Lynette talked to the nurse and got a little bit more information. Turns out I was on the agenda for last weeks tumor board but at the end and they have a time limit. That’s why it’s unclear if I’ll make this weeks or not. I’m hoping that I’m getting bumped because I’m considered a low risk case.
Haven’t heard from Dr. Schlenk yet. I’ll call him tomorrow if I still haven’t heard anything.
Almost 3 years ago, on May 9th, I was told I had a Sarcoma by a kind of panicky doctor (always comforting). What followed was a month of comptemplating death, amputation, and various other fun things. As it turned out the early guesses by all the doctors were wrong and I got off easy. Just surgery on my arm to remove a malignant glomus (glomangiosarcoma). No chemo, no radiation, still had my arm and hadn’t lost any use of it. Was a whirlwind. Learned a lot about myself and others (the incredible amount of support both friends and strangers provided).
Coming home from surgery (it was an out patient procedure) I slept most of the way home and woke up as we turned into our neighborhood and one of my all time favorite songs, What a Wonderful World (sung, of course, by Louis Armstrong) came on the radio. Had a major impact on me and Lynette (she knows what the song means to me). Was just amazing that that song would come on when it did.
Driving home from Cleveland yesterday, still only half way home but getting ready to ditch the music and listen to the OSU v Georgetown game (meaning no more music for the trip), yet again, the song comes on. Really hard to describe the impact.
Here’s what Lynette blogged (well, it was a mass e-mail in those days) 3 years ago:
And finally:
–As I turned onto our street, one of Tracy’s all-time favorite songs
came on the radio. I thought it was an appropriate way to end the day
(and this last month): Louis Armstrong’s “What a Wonderful World.”I see trees of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful worldI see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful worldThe colours of the rainbow, so pretty in the sky
Are also on the faces of people going by
I see friends shakin’ hands, sayin’ “How do you do?”
They’re really saying “I love you”I hear babies cryin’, I watch them grow
They’ll learn much more than I’ll ever know
And I think to myself, what a wonderful world
Yes, I think to myself, what a wonderful worldOh yeah
Good night from a grateful, humble, and overwhelmed person. What a
wonderful world!
Lynette
What a Wonderful World!
Oh yeah