Saturday, February 25, 2012


"Tough as Nails"
–Gabby Gifford

I celebrated an important anniversary January 12th -- 2 yrs after we know cancer metastasized to my cerebral nerve(s) and silenced my left ear, I am still alive and enjoying a relatively decent quality of life (albeit different -- a "new normal"). I wanted to post then, but I was dealing with insurance issues and trying to get imaging appointments scheduled. We'd already had to wait 6 wk after I completed Cyberknife treatment (Thanksgiving), delaying when I would normally be doing the imaging.

The imaging was further delayed by scheduling issues that led to me CHANGING where I get my imaging done (after 9 years). When you're dealing with a 4-6 wk prognosis without treatment and a 6-mo prognosis with treatment, it's important that you get an appointment sooner than 4 weeks away to see if treatment worked!

Well, the imaging showed that the Cyberknife treatment worked on the lesion on my spinal cord at the C1 level. And, imaging showed that the place we are watching on my cerebral nerves is stable. HALLELUJAH! What an excellent report!

But the stress I experienced this fall and winter was not without its toll; the doctor called me right away to alert me that another lesion has appeared in my cerebellum. WHAT? Hey, you! You have no authority to be there; get out!

Apparently a new spot has arisen between Oct and Jan that is already 11x8x11 mm. I could hear the doctor's frown in his voice. So I made the flurry of rounds to the oncos and the neurosurgeon and the neuroradiologist...I did tell you this is a full-time job, right? Well, the COST of the gas and the mileage to these appointments is also quite burdensome!!! I'd already gone through the Sep 1-Aug 31 allotment from American Cancer Society by last December!

The bottom line from the rounds is that we are going to try Cyberknife on this new lesion. We cannot tell from the first round of MRIs if the lesion has penetrated DOWN into the layers of the brain or has instead stayed there at the surface. If it's stayed in the meningeal layer, we still have ammunition we can use in this fight (intrathecal drugs, chemos that cross the BBB, and that amazing Cyberknife).

I spent this week getting the specialized CT and MRI done and having the mask made that will hold me to the table. The neurosurgeon will be doing the mapping, and I plan to be on the table getting treatment before March has done more than arrive.

Thank you for all the support; I had no idea how many people are rooting for defeat of this disease!

Wednesday, February 1, 2012

Still Going

Still Here

Yes, I am still here! And, I had no idea my audience had extended as far as it has; thank you! You know that poem about the footprints in the sand? When I look back at 2011, I don't just see one set of footprints -- I see thousands, from all of you helping to lift me up! Your love is amazing.

When I first set out to write this blog, I wanted to focus primarily on hiking and the mountains. But for two years now (keep in mind the prognosis is 4-6 wk without treatment and 6 mo with treatment; I just passed the 2-yr mark since mets made it to my brain), it's just been about fighting metastasis to the brain a la whack-a-mole.

It has been, in a word, grueling. Repeatedly fighting metastasis to the brain has been the hardest thing for me to endure. Here's a brief recap of what's been going on: in November, I traveled for a couple of weeks to undergo Cyberknife to a cancerous lesion on my spinal cord at the base of the brain/C1 level. The daily travel and treatment ended just before Thanksgiving, so you can imagine what our life is like as a family (TOUGH!). I then focused on making it a good Christmas for our family; and although I was puny, I enjoyed all the company and love. I especially was excited to meet our Great-Neice for the very first time!

I feel 2012 is going to be a good year, perhaps one in which I will enjoy blissful stability/remission -- but it hasn't started off that way! My mother thinks something BIG must be coming, 'cause I sure am getting stymied at almost every turn. From ridiculous insurance issues to breaking imaging machinery to RUDE RUDE RUDE public encounters, I have had just about everything rear its ugly head trying to make me want to JUST GIVE UP.

Well, I am NOT going to give up. I am not even going to get CLOSE to giving up! I am going to fight and fight and fight until cancer understands IT IS DONE, ONCE and FOR ALL!
Well, that's as far as I got before the laptop battery died and the endless rounds of appointments took over my life again. Picking up my train of thought is getting harder to do these days, so I'll just go ahead and get this much posted. Instead of trail reports, I'll just have to settle for little posts about trailblazing through mets to the brain and leptomeningeal carcinoma.