Wednesday, January 20, 2016

Crap After Crap and a Good Life in Between

This seems to be the nature of living with metastatic disease. We get a little break between scans (sometimes), then we deal with the crap the scans reveal. In between times are good. For me I mostly feel really good. So that’s lucky.  

I had gamma knife surgery yesterday to zap four small lesions in my brain. I won’t know until scans in three months reveal how well it worked, though it is thought to be a very effective treatment. Regardless, for the next three months I can sort of ignore it all, unless actual symptoms reveal a problem. I haven’t even had symptoms yet, of any of the cancer, aside from the original early stage lump and the little lump in my neck that foretold a metastatic recurrence. I like the ignoring part. Nothing about my life will improve if I think about it all the time, so I choose not to. 

So, to the gamma knife. Doctors do NOT like administering whole brain radiation more than once, so I have basically used up that option. Not that I want more, as the cognitive impairments have been becoming more apparent as time goes on. I like my brain! I hate to see it being fucked with, but choices aside from the WBR were basically nil at the time.  Fortunately the lesions found in my MRI were gamma knife-able.  

Basically gamma knife is targeted radiation to only the lesions so as not to damage healthy brain tissue. It involves having a frame
essentially bolted to the head: two screws(?), nails (?) – I don’t know what they were really. The worst part by far was the ginormous syringes full of Novacaine they shot in at each site before they made holes in my head. There were two sites on my forehead and two more on the lower back of my head. Through most of the last three years I have sucked it up and taken what has been thrown at me. Those motherfucking shots hurt so damn much I blubbered and cried behind the frame.  Even with the pre-meds of Ativan and Oxycodone, even with the numbing cream, even with my pretty high pain tolerance.

This all occurred after yet another MRI, this one having images (slices) every millimeter rather than the norm of every five millimeters.  Here’s where they found the pesky fourth lesion to zap, a nice bonus of one that won’t have grown for three months while I wait for more scans.

Then… Believe it or not, I sat in a room with my head bolted to a frame while the radiation oncologist, the neurosurgeon, and the medical physicist planned the treatment based on the fresh MRI. Turned out there was a complicated case before me so the wait was who-knows-how-long.  I was wearing scrub pants that must have been a size XXXXL and a gown tied in the back which of course kept untying, as they always do.

At left is the space helmet-y thing they put on me so the medical physicist could somehow measure whatever it was he needed to measure. Each lesion took about 20 minutes to zap so about an hour and twenty for the procedure in a fairly uncomfortable position. I didn’t really feel anything, which goes for radiation procedures while they’re happening. I was then wheeled back to whatever room my head got poked to take the frame off. And that was that. Jon and I left and drove the two hours home. After sleeping until noon today, I felt pretty normal, practiced yoga, tested my balance during said practice and it was pretty ok. 

So… None of this seems very pink to me. My friends with MBC and I tolerate gazillions of procedures that seem like science fiction to
prolong our lives.  I and many of these women blog, post pictures, tweet, yell at politicians (Rand Paul sucks by the way) and former Komen CEO Nancy Brinker, because we all know we have been mostly forsaken in the breast cancer conversation of the last few decades.  With the founding of METUP and the Metastatic Breast Cancer Project things just may be looking up for us. Hopefully Joe Biden adds to the positives by allocating and reallocating big dollars for mets research.  After all, it is the metastatic cancer that actually kills. No one ever died from a tumor in her/his breast.  

I am SO looking forward to attending my second Living Beyond Breast Cancer Conference for Metastatic Breast Cancer Patients in April. I long to spend in-person time with the friends I made there last year, who have continued to be my online sisters in the interim. I don’t know what I would do without them. To be able to say whatever you want about this shit to people who understand completely and deeply is precious. To have and to give empathy as opposed to sympathy is also precious. And to be able to make jokes about all this is also precious. 

So we will continue to live our precious lives and make the most of the time doing what we love, cultivating our favorite relationships, and of course watching the Pats win the Superbowl.  Though if I’m realistic it’s going to go the Panthers way.

And just for kicks, Louie thinking he's waiting for dinner. More kicks: fresh tattoo! It is the second half a Lucille Clifton poem, Blessing the Boats.

may you open your eyes to water
water waving forever
and may you in your innocence
sail through this to that