Monday, November 25, 2013

Cords, noobs and deer

My surgery was four weeks ago tomorrow, and its aftermath has melted my cockiness. It feels like someone opened my chest and duct-taped it shut in the exhaled position. Which is just about what happened: The surgeon scraped every last iota of breast tissue, including the fascia of my chest muscle, because the cancer went to within a millimeter at the deep margin (the back of the breast).

I also had 22 lymph nodes removed, and now know more about lymph than any normal human should. The lymphatic system is a sort of shadow transport system that moves interstitial fluid and the various waste products that collect there. The lymph system helps filter debris, fight infection, and keep the body’s fluids in balance by returning filtered fluid to the bloodstream.[i]

When you zap 22 lymph nodes, it’s like damming a bunch of tributaries. If I’m lucky, alternate channels will form and keep the lymph flowing smoothly; if not, back-ups of fluid in my arm will cause swelling and discomfort known as lymphedema. Being lean reduces my risk because there is less tissue and hence less fluid in my body, but the high number of nodes removed means I’m at risk regardless. Activities that increase risk include airplane travel, saunas and hot tubs, and carrying a backpack. Great…. Thoughts of hiking the Chilkoot trail with my kids have gotten me through this year; how can I carry 60 pounds without a shoulder strap? Pack animals, my physical therapist advised. 

A more immediate problem is that I developed a side effect called axillary web syndrome, or cording. It should be temporary, but it is pretty debilitating and painful, and is currently preventing me from beginning radiation. (I literally can't raise my arm above my head, the position I need to assume while getting radiated.) I could be the poster girl for axillary cording, but in the interest of preserving a shred of my dignity I am stealing a schematic to illustrate:

The cords are the consistency of piano wires, and it feels like someone tuned mine too tight. Straightening my arm out to my side or over my head is impossible. No one knows exactly what the cords are made of,[ii] but they're believed to be some combination of necrotizing lymph and blood vessels that no longer connect to a lymph node. My physical therapist snapped three of them (they actually made an audible snap) but said I probably have 19 more.

The surgical nurse told me, when I finally got the dreaded drain removed (15 days with that thing), that I need to touch the area where my breast used to be. I had shied away from the scar and the plucked-chicken skin around it. For one thing, it was and is completely numb. She said I need to touch it to retrain the nerves and to activate the lymph system. 

For some reason it came as an epiphany that I need to touch the skin of my former breast to bring it back from the dead. But it makes sense. As cheesy as it sounds, there is clearly some universal power to touch. Babies who aren’t touched fail to thrive; studies of spousal interactions document the calming effect of touch; other studies indicate that touch – a hand on the shoulder, an encouraging pat on the back – is correlated with improved performance in a variety of settings.[iii] Bolstered by this notion, and as the scar and swelling abate, I’m getting less squeamish about the surgical area.  

Part of my alienation from the part of my body formerly known as my right breast – besides the fact that it looks like Frankenstein's forehead – is missing vocabulary. Its lack of a name adds to the feeling that it’s a no-man’s land, some kind of demilitarized zone. Plus, it's impractical. Instead of telling my surgeon, “There’s some swelling in the area where my breast used to be,” wouldn’t it be handy to say, “There’s some swelling in my noob.”  

Or my whatever. We really need a word for it. I’m officially taking suggestions. 

Fortunately, disability has its perks. A few weeks ago my friend Debbie said her husband Ben, who had reached his deer limit, offered to get me my own deer by proxy. Alaska’s proxy hunt program enables able-bodied Alaskans to hunt for the elderly, blind and disabled. My first thought was, I’m not disabled! My next thought was, YUM! 

My anemic blood is pining for clean Alaska meat. I looked up the program. An Alaska physician needs to certify that I’m 70 percent disabled. Um, ok... Does that mean I’m unable to do 70 percent of the things I usually do? It’s 70 percent harder for me? I have a 70 percent less chance than normal of killing a deer? (Seventy percent of zero is zero, but no one asked how many deer I’ve actually killed.)  

I made a phone call. “What does 70 percent disabled mean?” I asked the program guy at the Alaska Department of Fish and Game. I outlined my cancer and treatment status. I told him my present condition is temporary. He said it sounded like I’m a good candidate for the program.[iv]
My primary care doc and friend, Kate Peimann, agreed and completed the affidavit. After an absurd amount of email traffic and a lot of help from Debbie and Ben, I acquired a hunting license and deer tickets and filled out a proxy authorization form. Happy hunting, Ben! I’m so excited I can taste it … venison burger … venison chili … venison curry …

Meat, prayer, miles, hats – the support and caring from friends and family takes many forms. A friend ran a marathon for me. Another told me her in-laws in Senegal are praying for me. Thank you. I feel it. It helps me keep stretching my arm when it feels like I’m fighting steel coils; it helps me believe I will be able to bring my family back together, that we will hike the Chilkoot trail, that I will live to raise my children and beyond.

Speaking of children, you know you're cancer patient when your five-year-old makes up jokes like this one:


Who’s there?

White blood cells.

White blood cells who?

White blood cells are busy!

If you have any jokes or riddles for Alder, please send them my way! As you can see we're desperate for some new material.

[i] If for some crazy reason you want to know more, the American Cancer Society has a good overview of the lymph system and its significance in cancer:

[ii] At first I thought, we can put a man on the moon but we don’t know what these cords are made of? But the last thing you want to do to a person with axillary web syndrome is biopsy the cords. By definition, a person with axillary cording is at risk of lymphedema; any cut or infection in the affected arm exacerbates that risk because the compromised lymph system means a compromised local immune system.

[iv] I don’t know if the proxy hunt program is unique to Alaska, with its subsistence tradition and Alaska Native culture of the able-bodied providing for the community, but I think it’s great. (I'll note that it's one of several blatantly socialist policies our state government embraces.) More info here:

Portia, Katie and Rosie at the butterfly house during a Seattle extravaganza for Rosie's birthday.
The "Great Wheel" juts out 40 feet past the pier and is especially awesome at night!

Debbie and I on (in) the wheel. I'm so glad I didn't chicken out, I loved it!

Unless it's homemade N. Douglas chocolate cake, Rosie's not a cake fan. She and Alder loved the chocolate tulip shell with fresh berries and whipped cream I improvised for her family b-day dinner.
Alder and a classmate on an all-school walk to the food bank to deliver donations.
The excitement this weekend was a surprise sleepover with Alder's friend Jerry while Jerry's mom was busy birthing a beautiful baby girl! After playing Legos until nearly midnight, they biked and played at Fort Flagler for three hours on Saturday. Alder introduced Jerry to the sugar-producing magic of fairy houses.

Tuesday, November 5, 2013

Surgery, Swedish style

I have no insights to offer at the moment, so instead I offer a play-by-play of my mastectomy and axillary dissection experience for those interested in the lurid details.  

Last Tuesday I got up at 3:45am (in itself a feat for me) and took my second “surgical shower:” you wash according to your regular habits; turn the water off; wash yourself from the neck down with a non-lathering surgical soap (active ingredient: chlorhexidine gluconate); turn the water on; rinse. You do this before bed and again in the morning before surgery. It’s a loathsome process but I’m grateful Swedish is so anal in their anti-infection procedures.

I couldn’t eat or drink before surgery, couldn’t put on any lotion or make-up or jewelry, have no hair to arrange, and my clothes would soon be exchanged for scrubs, so there wasn’t much to think about before leaving the house. Except food, but I’m obsessed with food so I did my thinking in advance. I’d packed homemade granola and a box of almond milk, unsweetened dried mangoes, homemade red lentil soup, homemade gingered chicken meatball soup, homemade spiced almonds, smoked salmon, two apples, a pear, tea, and a bar of dark chocolate from Layla.

I left the house at 4:15 a.m. and drove to the ferry, which I then lazily drove onto with a handful of other drivers and a few seriously hard-core bicycle commuters. (Bainbridge bicycle-ferry commuters are The Bomb. The hills on this island are not for sissies.) I reclined the seat and semi-snoozed across Puget Sound. Have I mentioned how much I love ferry commuting?

On the other side, I drove to Swedish, parked, locked my ridiculous food cache in the car and arrived at registration at 5:30 a.m. as instructed. My dad showed up an hour later to babysit my street clothes and make sure the doctors looked legit, and by 7:30 a.m. I was in the operating room inhaling my last breaths of consciousness and hoping the surgeon wasn’t as tired as I was. He held my hand as the gas mask went on my face, a gesture I found chivalrous and humanizing.  

A few moments or hours later, the bleary colors and sounds of the recovery room enveloped me. People in green bent over me and spoke; I spoke back. More green people wheeled me around on my gurney, down hallways and into elevators and down more hallways until I was transferred to a bed in room 305. Brian and my dad appeared, as did a nurse named Kerri.  

Kerri reminded me of someone I know and like, though I can’t place who. By the time two days was over, I was lobbying her to do a locum tenens stint in Juneau. All signs point to failure; apparently she really likes her home, her part-time schedule, her volunteer work, and her husband. Kerri and I talked a lot. Frighteningly enough, I can’t remember everything I told her, and I suspect I mistook the poor woman for my best friend, therapist and sister all in one. For her part, she valiantly tended to my drain (more on that later), measured my urinary output (she declared that I have a nurse’s bladder; I told her my obsessive fluid intake during chemo stretched my bladder), and pretended to be interested in pictures of my children.    

On surgery day, I had three goals. Or I should say, my medical team had three goals for me. Written on a white board on my hospital room wall, under the preprinted heading “Goals for today,” was the following:

Pain management


Walk in hall

Being goal-oriented, I accomplished these with reasonable ease and went to sleep feeling I’d done a good day’s work.

The night was tolerable, given that I had to sleep at a 30 degree angle so gravity would pull blood and lymph in the right direction. The night nurse, Mercy, was quiet and gentle. Nonetheless, I was awakened four times: twice by Mercy for vitals, once by a young bearded apparition who claimed he was a surgical nurse and needed to check my drain site, and once by a woman who said she was a surgeon and wanted to see if I had any questions. I did not. Just about everyone asked, day and night, if I wanted drugs. I did not.

My surgeon visited in the morning. He enthusiastically pressed on my bandages to move fluids toward the drain tube. I will only say this was not pleasant. Even Kerri winced.

I ate exactly none of the carefully prepared foods I brought. In the end, the thrill of picking up an old-school corded phone and pressing 55555 to access all the free a-la-carte food I might possibly want overwhelmed my purist pretenses. Besides, what else is there to do in the hospital but get excited about the pending delivery of Seasonal Fresh Fruit Cup, Mediterranean Plate, Oven Roasted Red Potatoes and Bistro Salad? Hospital food has come a long way, baby.

Having fled the hospital the same day when I delivered Alder (residual trauma from a high-decibel night nurse after Rosie’s birth), only to regret my hasty return to dishes and a child and to-do lists, last Wednesday I dawdled at the hospital. My father was on Bainbridge and had brought a zillion-piece Lego City mining set that would occupy Alder for the rest of the millenium. No need to feel guilty, right? So I did more hall walking with Brian, more chatting with Kerri, more getting-trounced-at-rummy, and more a-la-carte ordering. Finally around 2 p.m., we said goodbye and left.

At least, we tried to leave. There was the slight problem of a dead car battery. Once we solved that problem with the aid of Carl from Maintenance, we went to Bartell’s Drugs, as I had signed up to send candy to school with Alder on Halloween for a class cookie-decorating project – yes, his school is surprisingly mellow about refined sugar and food sharing. Although I’m not a big fan of either, I find it endearing that the school is so blithely last-century about these things.  

The past week has been largely dominated by the aforementioned drain. WARNING: If you are squeamish, skip the next paragraph.

The drain is a clear plastic tube about 8 mm in diameter that relieves blood and lymph that might otherwise cause a fluid build-up. The drain begins under the skin. It wends its way around the area that used to be my breast and emerges from a hole under my armpit, where it is sutured in place. At the other end is a grenade-shaped clear plastic bulb. It's not particularly comfortable. Every few hours, or at least three times a day, we have to “strip the milk,” which means squeeze the fluid and clots down the tube into the grenade. We then measure and record volume, and flush the contents down the toilet. Thankfully, this has been Brian’s job. 

The drain remains until I produce under 30 cc’s of fluid a day. Yesterday I got below 175 cc’s for the first time, but it’s looking like I’ll have my little sidekick for a while yet.  

One woman on a breast cancer discussion board, who said she is HIV positive, wrote that she’s squeamish and almost passed out reading a description of how the drains work. For some reason the thought of this woman with cancer and HIV fainting over a drain made me laugh so hard I cried. The humanity of it all.

I'm now done with two of three components of my slash-burn-and-poison cancer treatment regime (all that remains is burning, a.k.a. radiation). The infusion nurse at my final chemo treatment asked me out of the blue, “How are you coping with the loss?”

I was momentarily flummoxed. “What loss?” I asked. It was the week of the three-year anniversary of John’s death and two-year anniversary of Ali’s death. What did it say about me on that monitor she’d been reading?

“Isn’t your surgery coming up?” she asked.

Oh, right. I was scheduled to lose my breast in 13 days. "It’s not that big a deal,” I said.

I seem to have a natural anesthetic when it comes to loss. Perhaps we all do. It wears off over time, but I suppose it protects us when the pain would be most acute, allowing us to function and laugh and begin to heal. Little by little, we let in the loss as we are ready and as time and new gifts and new strengths begin to soften the pain. Someday I may lament my missing breast, but for now it’s just kind of a science project on my chest, one I hope expunged the cancer from my body.  

At Walmart the Friday night before surgery. I am asking my friend Shona, "How did my life bring me here?"

Alder and Brian doing the pumpkin slinger at a nearby pumpkin patch.

Alder loves picking pumpkins, slinging pumpkins, carving pumpkins, making Halloween decorations, and decorating Halloween cookies. Just don't try to make him dress up.

Moments before Alder refused to go trick-or-treating. OK with me; I was two days post-op and dreading candy battles.