Saturday, July 14, 2018

The Cancerland Diaries (with apologies to David Sedaris)

When I first got diagnosed, I did a little light reading. And even with all the guidebooks, it's still like being dropped off in a foreign country you've never heard of. The currency in your wallet has no value, you don't speak the language (which has a strange grammatical structure all its own), you don't know the customs or the laws. And when you step off the plane and into this new land, the authorities confiscate your passport so that you cannot leave. Welcome to Carcinomistan, and you'd better plan on staying.

Some of the things that happen are inconsequential, but odd. Among other things, the hospital sent a walker home with me when I was discharged. It wasn’t until later that day that I looked at it and wondered why on earth they’d done that. After all, it was my arms that weren’t working - my legs were fine. What they should have sent me home with was an adult-sized version of a baby walker. You know the ones with a hard plastic tray all the way around, a sling seat, and wheels? Those are leg-powered and I remember my own kids scooting around in one. Plus I could have snacks, meds, and my iPad within easy reach at all times. It would be helpful to have a tray in front that swings out and a high-backed, cushioned seat that reclines for naps. I think there is a definite marketing niche for these.

Another strange thing is that part where upper body nudity becomes very casual. Every specialist I visit has me gown up and then spends some time examining my incision scars and in-progress reconstruction. I joined a couple of Facebook mastectomy support group and suddenly my feed was filled with pictures of mismatched breasts, necrotic nipples, ragged scars, and tattoos. I've had to unfollow the groups so that I only see those posts when I go to that group's page.
And pain. It's just my constant companion. Apparently it varies depending on where tissue expanders are placed, but mine are under the skin and hurt all the time. All. The. Time. The tabs at the top have curled up and poke into the underside of my skin, the stitches into the soft tissue pull with each breath,  the edges are sharp all the way around, and my skin feels stretched to the breaking point. In fact, it's almost become a curiosity to me, so I made a count-forward calendar on my phone to see how long the pain will last. All I can do is hold on until it's done.
And then there are the electric shocks, which I'm told are the nerves in the skin regenerating. We'll just say it's both startling and unpleasant. One day I picked up my phone and touched the home button to unlock it when a wave of shocks went through me. I reflectively clutched the phone and gasped. Siri thought I was laughing and he helpfully laughed back. Thanks, Siri.
Finally there are the weird, clueless and downright inconsiderate things people feel moved to say. I can't count the number of times someone has immediately told me about someone in their life who has died of breast cancer. Not helpful. Or suggested that it's "so easy to cure these days." Well, actually, it's not a curable cancer. The best you get is "no evidence of disease" because there is always a chance that rogue cells have bypassed the lymphatic system and are quietly setting up a colony in your bones or liver or brain. Or people who tell me how they would feel or what they would do in my situation. As if anyone can know that. Or the "free boob job" jokes that make me want to pick up anything within reach and clobber the person. Or this classic that was said to me, "Oh, that's terrible. Will they have to cut both your breasts off?" What the actual fuck would compel someone to make that comment?
But, there are blessings. Friends who have landed in this strange country before me and can offer invaluable support and advice on navigating this disease. Other friends who give me rides to doctors' appointments and sit with me while the oncologist talks about possible treatments. Flowers and cards and gifts that started arriving my first day back and continued for a couple of weeks. Food delivered to lighten the load. People checking in by text and email to see how I'm doing. Well wishes and prayers from too many people to count.
And this guy. Because when I got pulled into the cancer vortex, my husband took my hand and went under with me. In addition to taking care of me, he has shouldered all of the housework and cooking in the weeks since the surgery. He flushed my drains tubes and changed dressings, looks at my mangled body without flinching (something I cannot yet do myself), and is endlessly patient and loving in the face of my fear and grief. And when I apologize for being in constant pain and a burden he stops me in my tracks, wiping away my tears and telling me, “I am ALL in. No matter what happens. We can do this.” I can’t imagine a better partner in this strange land.

Friday, June 22, 2018

Emerging from the vortex.

Well. I guess I was even less prepared than I knew. The hospital experience was, you know, a hospital experience. We had to be there at 5:30 a.m. for a nuclear medicine ordeal that was grossly under-represented as being "like a couple of bee stings." I'm going to call bullshit on that and let it go. Three hours later, radioactive material snug in my sentinel lymph nodes and prepped with an IV, I went into surgery. Which, although I didn't know until later, lasted seven hours. I spent another three in recovery while they gave me bag after bag of fluids trying to get my BP to an acceptable level.

My husband and my son's fiancée sat with me that evening, and my husband spent the night sleeping in a chair next to me, a reversal of our experience after his stroke. And then they discharged me around lunch time. I was so glad to be home and wrote a post on Facebook saying so.

And then all hell broke loose. Five days later, I came up for air long enough to post this:
"I was just glad to be home from the hospital. Sure, I was in a lot of pain and had limited mobility, but I had help and encouragement and I was ready to heal. And the Universe heard and said “You think you’ve got this? Ha ha! Fuck you! How about I see your breast cancer and raise you unrelenting migraines? How about I put your skull in a vise for days and reduce you to a shivering, puking husk of a person? Then how about I finally ease up for a few hours to give you hope that you’ve turned a corner, then wallop you again? Still think you’ve got this?”
Well, Universe, I can only say that If I were a prisoner of war, I’d have long since given up any secret I knew just to Make. It. Stop."

And then I retreated again, pulled back into the storm. I had spent nearly a week throwing up everything I ate and reeling in pain. Finally last Monday, my surgeon told me to come in and she suggested that maybe my narcotics were actually triggering the migraines. I switched to ibuprofen and very gradually life started to feel a little more like life. But only a tiny bit. I still hurt like crazy. I hate sleeping propped on the couch and maneuvering around drain tubes and having them flushed out twice a day. I hated setting an alarm to take an antibiotic every four hours around the clock. I hated lying awake with my skin on fire and counting the minutes until daylight.  In some ways I hit bottom Wednesday when I wanted to punch anyone who was telling me to be strong. Because I have discovered that people can react pretty badly when you aren't. I think it's overwhelming to be exposed to someone else's pain and many people just pull away. And hell, I didn't like me either. I didn't know if I even wanted to make it. I will tell you plainly that I was in a very dark place.

But yesterday rolled around and I went in to see the plastic surgeon. She was able to remove two of my four drain tubes, which helped a little, in spite of the fact that it was a remarkably painful procedure. It was quick, but an astoundingly sharp pain. I may or may not have yelled, "Fuck!" Even so, I am eager to get the other two removed and get on with the reconstruction process.

Even beyond the pain, which rolls over me in an electric way, it's just hard. I can't look at myself. I don't feel whole. I can't reach things or lift. I have a schedule loaded with appointments with surgeons and oncologists and decisions ahead about treatment. I have procedures and surgeries still to come and a long path of healing. I find myself reassessing relationships and thinking a lot about how I want the rest of my life to be.

Before you encourage me to look at the bright side, let me say that I am keenly aware of the blessings in my life. And I'll get to those. But this cancer business truly sucks with a suckage unimaginable. I feel like I am slowly making my way to calmer waters and letting myself just float for now.

Sunday, June 10, 2018

"The changing of sunlight to moonlight, reflections of my life."

The day after I got my invasive breast cancer diagnosis, I headed into work and flipped on the radio as I drove. They were playing a song I've not heard in many years, the only hit of The Marmalade, from 1969, called "Reflections of my Life." The lyrics at the moment I turned the radio on were:

"The world is
A bad place,
A bad place,
A terrible place to live.
Oh, but I don't want to die.
All my sorrows,
Sad tomorrows,
Take me back to my own home.
All my crying,
Feel I'm dying, dying,
Take me back to my own home."


I probably don't need to tell you I cried all the way to work. (And pretty much off and on every day after that for the next week or so.) But when I got home that day and looked up the song, I also found a recent remake by the lead singer, Dean Ford. It is much more compelling from an older voice and now the song centers me and brings me comfort. I hear it now as a rueful acceptance that life is tough and yet is still worth holding on to.

At the Joyful Flight exhibit, I was particularly fascinated by this mirrored hummingbird. The reflections caused its appearance to change depending on where you stood to look at it. At first, with all the green, I thought it was filled with holes and then realized instead it was covered in round mirrors. I want that to be me - not defined by cancer or what is taken from me, but reflecting back what is good and life-affirming around me.
People have assured me that I am strong and brave enough to handle the path I find myself on.  I have felt anything but that. Then I remembered what I have often told my own patients - that being brave isn't about being unafraid. When you aren't afraid, courage isn't even required. Bravery is about doing what you need to do in spite of your fear. So I am leaning hard into my fear and moving forward. My first surgery is in the morning, and again I ask for your good thoughts to guide the hands of my surgeons and carry me through whatever treatment and recovery is ahead. Life has been brought sharply into focus for me and I hope to come out the other side of all this stronger and more appreciative of life in all its messy glory.

"I'm changing, arranging,
I'm changing,
I'm changing everything,
Everything around me."

Friday, June 8, 2018

Home again.

So just briefly... we had a lovely time in Aruba, and made it back home (flight delays, blah, blah, blah) this morning instead of yesterday. But the travelogue will have to wait - we have things we need to do here this weekend to get ready for Monday's surgery and my son and his fiancée coming over Sunday. I will do the Aruba posts when I have nothing but time in a week or so.

Friday, June 1, 2018

Taking the surgeon's advice.

Prior to my diagnosis, we'd planned to take several days to go to the beach and our airfare and room were already paid for. As it happened, it was precisely when they'd have scheduled my surgery. We asked and the surgeon said, "Go." One week wasn't going to make a difference and I won't be going anywhere for quite awhile afterwards. So we're listening to her and heading out. Since the airline charges even for carry-on baggage, we are both taking only one "personal item" (a bag not to exceed 18 x 14 x 8 inches, including handles) and travel lightly. I plan to spend the next six days eating good seafood, staring at the ocean, and trying to get myself into a mental space for what's ahead for me. Back in a week.

Wednesday, May 30, 2018

More of the university gardens.

In addition to the hummingbird statues, we enjoyed just walking around the gardens and then out along the river. We walked about 4 miles that day and have made a commitment to walking some every day possible. The garden entrance has some lotus ponds, which had a variety of white and pink blooms.
A robin posed for me on this iron sculpture of roses.
The gardens are divided into areas, including a kitchen garden with herbs, vegetables and fruits.
There are ponds scattered throughout, including some with brightly-colored koi and others with large turtles. Later, as we walked along the river, we passed dozens of snapping turtles, sunning themselves on logs in the water.
I believe this is Quan Yin, the boddhisatva of compassion who represents the divine feminine. Yet another thing in the gardens, along with the carved wood hummingbird, that I had to refrain from stealing.
A juvenile squirrel caused its mother some turmoil, racing away and having to be corralled again. When we approached, they both darted up the trunk of a tree and then froze, pretending to be invisible.
In the children's section was a fairy garden, with tiny houses tucked in amongst the rocks and plants.
Nearby was an enormous iron grasshopper.
The kids' area included an exhibit of insect-eating plants. Because what child isn't fascinated by plants that can eat bugs? Okay, fine, I'm fascinated by it, too.
 No idea about this sculpture but it had some vaguely Celtic carvings and also reminded me of something you might see in Central or South American ruins. Maybe an altar of some sort.
Crape myrtle trunks. I planted a few crapes at my house and look forward to when they develop this beautiful peeled look.
Another young squirrel foraged near us while we sat on a hanging bench swing. When it finally found a nut, it ran up to snack in the branches above.
Back out by the lotuses again. May we all stay rooted in the earth and flower in the light.

Sunday, May 27, 2018

Good luck birds.

Surgery plan in place and a couple of weeks to wait, we decided to take part of our weekend to visit the new hummingbird exhibit, "Joyful Flight," at the university gardens.
Artists were provided with a wooden hummingbird form and could paint or decorate it as they wanted. Scattered around were signs with hummingbirds facts. For instance, a hummingbird's wings move 38-78 beats per second (more when diving).
This one looked a little melancholy in spite of its admonition to love life. Like me right now, I guess - I do love life, and I'm also sad.
I loved this ceramic-covered bird. It's hard to see but the pieces of ceramic that cover it are carved in patterns.
The sign for this one identifies it as a king, but when I saw it, I said, "Oh, I like the queen hummingbird!" I'm sticking with my interpretation.
This metallic-covered version includes spoons, chains and other odds and ends. The placement near an old truck and gas pump is perfect.
This bird was by a little pond. Weighing less than a penny, they are fast and can be aggressive. Indeed, I've watched tiny bold hummers duke it out over territory and mates and buzz my head when the feeder runs low. Hummingbirds will even use their long, sharp beaks like little shivs and stab each other in the throat when fighting. Now that's fierce!
At one with the trees around it on one side of this bird,
and decorated with delicate vines and birds on the other. Not all were decorated differently on either side and I appreciated the effort.
A modern bird, covered in CDs. As good a use for discarded discs as I've ever seen.
Another hummingbird fact - proportionally, they have the biggest brains of any bird. They can remember flowers they visited and often return to the same feeders each year.
This hummingbird speaks to the hippie in me, living life on its own terms. I especially liked the yarn fringe on his cap.
Cosmic hummer. A friend told me he'd be conversing with the Cosmos on my behalf so this is clearly his bird. In some traditions, hummingbirds are seen as healers, appearing to people in need.
Possibly my favorite, a hummer of carved and colored wood. I'd put this one in my garden if I could. Representing both fearlessness and lightness of being, these hummingbirds were a timely message for me. I will need all the courage and joy I can get for the months ahead.