3/20/12

Scheduling

I'm all about the scheduling right now.  When do I do what, when do I take what, when will we know what... things keep changing, things get put off or pulled forward, things get added and subtracted, and I have to keep track of it all pretty darned closely.

One new thing added is steroids, after my nice 2.5 month vacation from the rotten things.  So back to the bloating and the multiple chins and blood sugar problems (again!)... but on the other hand, the headaches and nausea are considerably better, the dizziness is less, and I'm able to eat again.  And even better, I don't seem to want to slip off into Nap Time on a constant basis.  It's all a trade-off...

As for the brain mets: my consultation with the radiologist at the UofMN is next Wednesday, and then the radiation treatment (probably Gamma Knife) will start very early on April 4.  It's a one-time treatment, but fairly complicated, so it will take a while.  Theoretically I will go home either the same day or after only one overnight, assuming everything goes as planned.

Pretty amazing when you think about it.  Just a few years ago treatment for tumors deep in the cerebellum would have been very risky and largely unsuccessful, but stereotactic radiation procedures have advanced a lot in a short period of time.  My surgeon is one of the most experienced in the country for this sort of procedure, so I'm in good hands and can hope for as good a result as possible under the circumstances.

I don't have all the information yet, and of course every patient is different and outcomes cannot be predicted very accurately, but my understanding is that it will probably take another month or so before the full effect of the radiation will be known - I imagine I'll have to have another MRI at that point.

So that's all the information I can give at the moment.  The only other bit of news to report is that I will be continuing with the treatment of Afinitor and Exemestane throughout April.  I won't have the PET/CT scan until around the same time as the MRI, but my funny old tumor marker test showed that the trend seems to be going in the right direction, so Dr. Bouncy is hopeful that the treatment is working fairly well - at least on some of the tumors, if not all (the very painful hip/pelvic tumor still seems to be growing, as does the one on my spine, but the ones in my ribs seem less painful).

Tumor markers are a very rough 'guesstimate' sort of thing - they don't tell you which tumors are doing what, how many tumors there are or where, and sometimes they just plain don't reflect reality in any way.  They are simply an occasionally useful indicator of how much tumor activity there may or may not be at a given time.  In my case there was a huge flareup in my tumor marker test at the end of December, at the same time that my scans indicated that there was a huge progression (growth in size, number, and/or activity levels of tumors).  In my case the tumor markers went from 11.x in October to 85.x in December, and now it's at 57.x    

Now, I had lots of big ol' tumors in Oct. when it was at a mere 11, so 57 isn't anything near a miracle.  And those brain tumors cropped up in the meantime.  So you can see that it's a very rough indicator, indeed.  Still, the downward trend in the past couple months is a small ray of light, and we'll take what we can get.

I'll keep reporting as I can, and if the time comes that I can't, I'll try to have my mom or darling man sub for me a bit.  Wish me luck!

5 comments:

krex said...

I do wish you luck and think of you often .

Ellen said...

I think of you often, Eileen, and think that your blog is such a resource. I know it must be painful sometimes to write because sometimes it's painful to read, but I've learned so much that I never knew about cancer and how it affects one life and all the lives around that one life. I hope I never have to go through something like this and I sure as hell wish you weren't going through it, but your blog is a resource and I have shared it with friends who have received the dreaded diagnosis as such. I do think of you often and wonder how you're doing and how your family is doing. I'm glad you're getting time with Lorelei - happy time is never wasted time. Hugs and prayers from NY.
Ellen P.

Nancy K. said...

At least you're in good hands for your surgery. That's good to know.

I do wish you the best and will keep sending prayers and positive thoughts your way...

Nancy K. said...

P.S. I go in tomorrow for my six month follow-up (mammogram) since my mastectomy. I have to admit, I'm a bit nervous. But YOU give me courage!

laurie said...

Wishing you more and bigger rays of light very soon. xo