Friday, June 17, 2016

And six months later...

1. Unremarkable
    29 May 2016

If you're me or my metster friends, unremarkable is a miraculous word. If a scan report says an organ is unrmarkable it's very, very, very good news.

Today is the two-year anniversary of my metastatic recurrence diagnosis. This puts me at the start of  the median survival time for MBC of two to three years. I'm not sure how to think about this anniversary. I'm happy, because as I expressed on the radio the other day (see prior post for link), twice in the last two years I was sure I'd be dead in the next couple of months. That hasn't happened and for that I'm incredibly grateful - for plain old dumb luck, for my amazing medical, surgical, and radiation oncologists, for my husband, kids, family, and my family of friends, for my yoga teacher who has become my friend.

Let me explain the luck part. My radiation worked to clear my brain of lesions, and my drugs seem to keeping keeping all of my organs clear of lesions as well. This is not always the case for everyone. As many of you know, my biggest cancer pet peeve and research fantasy is the randomness of response to treatment. Some of us do well on what I've had, and some of our cancers don't respond to the same treatments, or in some cases get worse. My poor oncologist is left to start me on a treatment and as he explains every time, response all depends on the biology of my particular cancer, my singular, individual biology. Arrrgghhh. To me this is the frustration of all of us. We start a treatment and unlike getting lab results in a couple of days, we wait months for enough time to pass to be able to see changes on our imaging.

As to the title of this post:

"When a radiologist describes an imaging study as 'unremarkable' or a finding in an imaging study as 'unremarkable'the radiologist is saying that the study or finding is either 'normal' or has abnormalities that are of no significance to the patient in that situation."

2. Shit hits the fan... again. 
17 June 2016

Not so fast. Just a mere six weeks or so after a clear brain MRI I felt some vertigo and asked to have this scan a month early. Local MRI showed four new brain lesions which we arranged to have gamma knifed. Gamma knife is about the worst procedure I've had. Like something out of an old Star Trek a metal frame is attached to the head with four screws (bolts, nails, railroad spikes?). Two are placed on either side of the forehead and two in the back of the head. Local anesthesia tries but never quite gets there. Then a much more detailed MRI in the frame, where the image slices are much thinner so that sites unseen on regular MRI become visible, to look for more hidden lesions. Then the waiting game, in the frame of course, while the radiation oncologist, neurosurgeon, and medical physicist plan the treatment off of the MRI. 

This time, I was going in for four lesions, which take about 20 minutes each to zap. I was looking at about an hour twenty on the table. Do you think this fucking cancer cares about my plans? My tired daughter/chauffeur waiting for me? My peace of mind? Anything about me but killing me? Not so much. Turns out I spent five hours on that table having 22 lesions gamma knifed. One bathroom break added in. All in all, about seven hours wearing the Star Trek frame. I think I might have set some sort of record, but I have no idea. The cowboys at the rads clinic must have concluded that since I can't have whole brain radiation again that they would just go for it. I picture Dr. Kee, Dr. Adler, and the physicist whose name escapes me engaging in a huddle, coming out, doing a big chest bump, and hiking the ball. They were rock stars, as were the nurses and even an aromatherapy lady spritzing me with lavender and telling me to breathe as they bolted the frame on. I was loopy (Ativan and Oxycodone), most of the time but I sensed that there was always some combination of this group around me, making sure I was doing OK. I wasn't (who would?), but as we like to say at my house, it was "good enough for who it's for."

Anyway, Thai food for Ani and me was the reward then my calm, competent, awesome heroic daughter drove me home. I had a headache on the way home and through bedtime but as with my first gamma knife I felt fine the next day. You'd think I'd be quite the mess but the up side to this treatment is such minimal after effects.

3. Rough Spring

The end of high school for my youngest was rough, as it is for a lot of seniors. He made it though so in the midst of the brain mets debacle was graduation week, family from out of town, awards night, parties, the graduation itself. I got my original mets diagnosis a couple of weeks before my daughter graduated, and had started chemo by her graduation date. June of 2015, no graduations but 18 brain tumors and whole brain radiation. My poor hubs absolutely DREADS this time of year now. I do too. Oh yeah! Let's add in a knee surgery for Jon a couple of weeks before graduation. Our friends were there for us, as they always are, cleaning, mowing the lawn, cooking, getting ready for a party we were having a little trouble getting ready for ourselves. My gratitude and love for this group of chosen family knows no bounds. 

4. Liminal

Our little family seems to muddle through, though sometimes I feel like the comic book drawing with just one person under a raining cloud and everyone else in the sunshine. That's my place in between. I just finished a lovely graphic memoir of living with MBC by Toronto artist Teva Harrison. It's called "In-Between Days." She writes, "I occupy the liminal spaces, slipping between unnoticed. It's like living in the shadows." I'm terminal, but surprisingly not dead yet. It's a strange place to be. I love my friends, and it's awkward to say these honest things for fear of making people sad or too careful about what they say around me. I know (I hope) that my people know there is nothing they should change or squelch on my behalf. Most of me loves basking in the stuff of life (much of it hilarious) that I'm sure to hear at ladies' night tonight. But I find myself feeling confused by the conversations going on around me, especially when they reference the future. I get confused anyway, with all the brain shit going on, but I'm filled with a sad clarity when I have no idea how to participate in conversations about next year, or hair turning gray, or getting older - the things that people talk about in the concrete spaces where I don't live any more.

5. Trials

If you want to get a headache start looking for a clinical trial. The system is extremely difficult for patients. The trials I see are ones that exclude me, either for the autoimmune disease I have or for the cancer drugs I've already taken. It's just part of the shit show. Hopefully when I see Dr. Raish we can hone in on something that can control my brain a little better. I'm looking at the drug neratinib, and hoping to get it through expanded access, as my pretreatment with capecitabine excludes me from the phase III trial. 

That's about it and not nearly it after five months of not writing. I hope I can focus and write more regularly, starting with reporting back the news of next week. For this moment, happy to have both my children at home with us, happy to get dressed and go to yoga class, happy my husband is so awesome, happy to be alive.


  1. Hopefully they just put Neratinib out there soon. I didn't know it was in phase III. What a whirlwind. *Hugs*

  2. Beautifully written. From an amazingly beautiful friend....
    I am happy to live in the in-between with you sister....