More than half-way on the No-Shopping challenge.

Let's just say the no-shopping year challenge hasn't been the primary thing on my mind of late. But I haven't posted about it since the end of April, so I'll just do a quick update. In May, in advance of the mastectomy, I bought some of the things I was told I'd need for recovery - a wedge pillow, straws, soft pj's the open in the front. The things I would need to sleep propped up and navigate with extremely limited arm range. I came home and dutifully colored in that date's square in pink to show I'd shopped. Then my husband stepped in. Those were not discretionary items, he insisted, those were medical expenses. And he was right. And I was even temperate about those expenditures - one thing I bought was an old school zip-front house dress for $7. I cut holes in the pockets from the insides to put the bulbs of my drains tubes into. That thing was flat ugly, but cheap and practical. I tell you though, when I wore it I felt like I was a cigarette and a glass of sherry away from being my Gangeen.

EXPENDITURES
   May - July         Year to Date      Category                              
      $0                       $0                    Clothing                                                   
      $0                       $0                    Shoes                             
      $0                       $0                    Accessories                                       
      $0                       $0                    Cosmetics         
      $0                       $0                    Kitchen items                 
      $0                       $0                    Gadgets/electronics 
      $0                       $0                    Furnishings
      $0                       $0                    Books 
      $0                       $0                    Shrubs/trees
      $0                       $0                    Non-necessary household goods 

We're almost to the end of July, so I'm including it since I feel confidant that I won't be shopping in the next couple of days. For gardening, I'd only included shrubs and trees and had planned to buy some annuals for a couple of pots out front the way I do every year. And then decided that even that wasn't necessary.

For the pot that I usually put mums or other seasonal flowers into, I dug up a patch of mystery plants that weren't a good fit for where I'd originally put them. At the point that I stuck them in the pot they'd not yet bloomed, so I was very pleasantly surprised when these beauties emerged.

I had one other empty pot on the front porch and I decided to make a topiary-like thing. I had a set of three pieces of bamboo wired at the top that had come with some other plant. I cut some ivy from the back yard and twined it up the bamboo poles. It's grown quite a bit and adds a little height to the plantings. And all free!

Food was never part of the no-shopping year and while we mostly eat at home, yesterday we'd spent all day working on various projects and decided to pick up some catfish and onion rings at the neighborhood diner. Apparently the fish was so hot that it melted right through the container. My husband said, "What are the chances that none of that styrofoam is melted into our fish?" I just shrugged and said, "I don't know. Maybe it will give me cancer."

My adjusted life.

In between surgeries, I have returned to something approaching normalcy. (Note this photo has nothing to do with anything - it's just Hodr being weird.) I went back to work too soon, for a couple of very short days after four weeks. It was a mistake. But the next week I was a little more ready worked four mediumly-full days. The biggest issue was just being able to drive the 45-minute commute. Fifteen minutes of my drive are in heavier traffic and I had to wait until I could extend my arms in front of me. I keep a folded up towel in the car to put between my chest and the seat belt. It's been nice to see my patients again and to hear that I've been missed. I've scheduled myself a break in the middle of each day to nap, which helps.

After weeks of staring at the weeds taking over my gardens, I decided to tackle the worst of them last week. For the bigger limbs on shrubs and wisteria vines, I showed my husband where to cut and he wielded the loppers. I pulled up a bunch of weeds, but only things that came up easily from the ground. Other weeds I just cut off at ground level and I will deal with their roots after I'm recovered from my second surgery. I ended up with this pile to be hauled away by the city. And no, I didn't lose my shoe, it's just there for scale.

As I've been able to focus a little more, I've moved away from the stash of free books I'd been storing on my ipad and picking up some books that require a bit more brain power. My current read is about how human exceptionalism in the field of paleoanthropology leads to sometimes absurd theories about evolution. Not that I'm not also reading novels, of course.

And I have spent a great deal of time just watching the little world of my yard. Out every window, there are birds and small mammals to keep me entertained. We keep the bird feeders filled and set out peanuts for the squirrels and blue jays. And of course, the rabbits love the clover lawn.

So that's where I am these days. Working a little, watching the world go by, and waiting for my next surgery in a couple of weeks.

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.

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.

"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."

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.

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.