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:

Knock-knock.

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.

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[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: http://www.cancer.org/cancer/cancerbasics/lymph-nodes-and-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.

[iii] This article describes some examples: http://www.nytimes.com/2010/02/23/health/23mind.html?_r=0

[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: http://www.adfg.alaska.gov/index.cfm?adfg=huntlicense.proxy

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.