Sunday, November 25, 2018


I left my camera alone and just focused on the holiday this year. My brother, sister, and brother-in-law all came up to celebrate with us. No photos of the meal, but we roasted a turkey and had mashed potatoes with giblet gravy, green beans amandine, sweet potatoes with a maple-bourbon glaze, corn pudding, cranberry sauce and my family's odd traditional plate of cucumbers and olives. At the beginning of the meal, my brother-in-law said they were thankful for me and my younger son added, "And I'm thankful you're not dead." I knew what he meant, but it still startled me.
Before dessert (chocolate-bourbon-pecan pie, mixed berry pie, pumpkin pie and brownies), I cracked out a bottle of bourbon I'd been saving. Some time ago, a local package store was having a bourbon event where every day they'd advertise a very limited stock of small batch bourbons and the first people to text in could buy them. They were all pricey and I wasn't interested. Until I got the email about Burning Chair bourbon from the Savage and Cooke distillery on Mare Island, CA. Run by a former Napa Valley winemaker, the bourbon is finished in old wine barrels. I texted immediately. Because Mare Island is a decommissioned Naval base where I lived for three years as a kid. Having the two siblings with me who also lived on Mare Island made it the perfect time to break it out for a toast. To Mare Island memories, to my Dad who died almost a year ago, to family. And to giving thanks. I was thankful for all those things and for the people who I love and who love me. And you know what? I'm thankful I'm not dead, too.

Sunday, November 18, 2018

My left foot.

You may or may not recall that I woke up from my reconstruction surgery in early August with one numb foot. I was assured it would be fine in a day, and I hobbled on home. But it wasn't. After a few days, I got worried and went to see my primary care doc (This was on the table in the exam room, and the drawing of the louche muscle/bone guy made me laugh out loud.) My PCP thought that a nerve in my thigh had been knicked when they harvested fat for grafting and told me if it didn't get better soon, he'd refer me to a neurologist. I felt like the sole of my foot was a marshmallow and the inside had the intense tingling of a foot that had gone to sleep. It was most unpleasant. At that time, I could not bed the toes on that foot or support my weight with it.
Then, it started to swell up. Fearing a DVT, my primary care guy sent me for an emergency ultrasound. Thankfully, there was no evidence of a blood clot.
On my way out of that building of the hospital, I passed the medical library and saw that the therapy dogs were in residence. I made a quick detour before my next appointment to pet a couple of friendly Great Pyrenees. I saw my reconstructive surgeon the same day, and she thought it was a problem with the nerve in the tarsal tunnel at the ankle. I have had a ... calcification? ossicle? ganglion cyst? - depends on who I ask... as far back as I can remember. As a kid I used to call it my extra ankle. My surgeon's theory is that pressure was put on it when I was positioned in surgery for the fat harvesting and that it was now impinging on a nerve. She referred me to her own podiatrist.
Who said removing the ossified whatsit in my ankle should help but she couldn't guarantee it. Still, I decided to move forward with scheduling the surgery as soon as my oncologist would okay it. The podiatrist sent me for another ultrasound specifically of the lump in my ankle. Two weeks after I finished my chemo, I returned to the hospital for pre-anesthesia testing. I was braced for more blood work, but the nurse said they'd use my chemo labs instead. I'm grateful for even one less stick.
So here I am, with a foot that is very gradually coming back to life. I can at least bend my toes now and walk with only a slight limp. But it's not fully functional and it hurts to walk any distance. And there is a dull ache in my ankle where the bony lump is. It continues to swell up every day - you can see the difference - so it does not appear that it will heal completely on its own. I'm in the countdown for my fourth surgery this year, this one a week after Thanksgiving (and four weeks after my last chemo). I sure don't want to have yet another surgery, but if it allows me to start walking without pain again, it will be worth it.

Wednesday, November 14, 2018

Trust me, I won't always only blog about cancer, but...

I'm in a weird place. I've received hugs and congratulations and even gifts to mark the end of my chemotherapy. Universally, people ask if I'm glad it's over. And I am, except it doesn't feel quite over for me yet. Bell or no bell, my body doesn't know that was the last infusion. My body only knows that it was poisoned again. At Day 13 of this last cycle, the chemo agents are still coursing through my body, on a search and destroy mission for cancer cells. And healthy cells. So although I don't go back for another round, I feel at least as wrung out as I did after previous infusions. My taste buds aren't still fully on-line, my skin is sloughing off, my hair is still detaching itself, and I'm foggy-brained and tired and tearful for no discernable reason. Beginning after the third round and intensifying this time, I have post-chemo muscle fatigue, common with docetaxel. What this translates into is thigh muscles that feel like they've been filled with cement. Even walking across a room leaves me wobbly. My on-line research tells me it's due to elevated oxidants and reductions in myosin expression, mitochondrial loss and increased reactive oxygen species production. But I'm sure you knew that, right? Apparently it will last for months.

The chemo agents themselves should clear themselves from my system in 28 days, but it will take much, much longer for me to return to something approaching normal. In fact, there are side effects that won't even occur for another couple of months or more. So it's hard for me to muster up the celebratory mood everyone seems to expect from me. I'm trying, but I'm just not there yet. Someone asked me if they'd be doing tests to see if the chemo was effective and when I said they wouldn't, he wanted to know how I'd know it worked. Without thinking, I said, "If the cancer doesn't come back, it worked, if it does, then it didn't work." Judging from his expression, that was a little unsettling to hear. But it's my reality and I don't have it in me to sugarcoat it. I think the enormity of the healing ahead of me - body, mind, and spirit - is really just starting to register for me.

Wednesday, November 7, 2018

Last round.

Throughout my life, I always believed that I could never, ever do chemotherapy. The idea of being poisoned frankly terrified me and I have a pretty intense needle phobia. Not the "I have to look away" kind of phobia, but the "I'm going to lose my damn mind if you stick a needle in me" kind. The kind of phobia that makes me guarantee that I will never get a tattoo or have acupuncture. The kind of phobia that made me choose natural childbirth just to avoid a needle in my back. And yet, somehow I did it. Because when it came right down to it, I didn't like my odds without it. With my particular cancer, the 40% chance of metastases if I skipped chemo seemed little better than a coin flip to me.
At my chemo center, like many others, you get to ring a bell when you are finished. After having my port accessed, we met with the oncologist who was all smiles. He shook my hand at the end of our visit and told me to ring that bell as hard as I could when I finished and come back to see him in three months.

And then, the drugs and memory loss kick in. What I do recall is that while my husband was off fetching food for us, they brought around lunch and I had a turkey and cheese sandwich and a bag of chips. Things get fuzzy after that. He went to the cafeteria, he told me later, and called several times but I didn't answer. So he came back to the chemo room, said he'd call again from the cafeteria to tell me what my choices were. I have a vague memory of asking for a muffin. He called several times again and when I finally answered, I apparently wouldn't say anything. He chose for us, and came back with a muffin, a grilled cheese sandwich and fries. He tells me I offered him a bite of the muffin and then when he turned back, I'd devoured the remainder of it and was taking huge bites of the sandwich. And I ate most of the fries. Zero memory of any of that. I told him I remembered the first sandwich and chips and he said, "No kidding, I had to brush a bunch of potato chip crumbs off you." Yeah, don't remember that either. Maybe it was my body's way of calorie-loading before my taste buds went to hell.
Because my taste buds definitely turn on me. Starting about Sunday evening, everything tastes foul. And smells bad, too. My husband decided to make something involving onions and black beans, I think, and I was gagging just at the smell of it. And that was even with him cooking it in a crock pot in the garage. Weirdly, sweets taste especially bad to me. Fruit is okay, but things like candy and cookies are repulsive. Which is really saying something given my wicked sweet tooth.

But before that, I felt okay. The neulasta on-body injector hurt more this time and I'm not sure why. See that little cannula? That is the thing that was sticking into me for 27 hours before it started infusing. I can't tell you what a relief it was to peel it off on Saturday.
Since then, I've been mostly taking it easy and trying to medicate ahead of symptoms like nausea and bone pain. On my worst day, yesterday, I just let myself lie on the couch all day and watch Netflix. But today, I feel like I'm starting to climb back out of the pit.
The little plaque says:
"Ring this bell, three times well, and celebrate this day. 
This course is run, my treatment done, now I am on my way."

Well, it's not actually done. I have surgeries ahead and years of endocrine therapy, and I know there are no guarantees. But I am very thankful to be done with the chemo part. And that plaque is not the boss of me - I rang it four times, once for each round I completed. And yes, I DID clap for myself.