Sunday, March 13, 2011

The "New" Normal

Every cancer survivor tells you that the year after treatment you have to get used to the "new normal."
So what's normal? Is it normal to wake up one morning after a sleepless night wedged between your two year old son who is still holding onto a dozen helium balloons above your king size bed because he wants to be like the boy in "Up" (and it's his birthday so you let him.) Or is it normal that you roll over on the Tonka truck that he brought to bed that night, or that you can't really move because there's a needy cockapoo cradled in the crook of your bent knees as you try to lie in the fetal position. You think curling up on your side might allow you to get a good night's sleep, except your unforgiving newly implanted breasts feel like the Jean-Paul Gautier cones Madonna wore in her "Vogue" concert tour circa 1990. On the one hand, you can't really feel your breasts anymore - I imagine it is somewhat akin to the false limb feel of any amputation. On the other hand, they hurt and they don't squish and you can't do "swan" on your stomach during Pilates because you have these two unforgiving mounds across your chest that still ache from the surgery weeks after the fact.

My new normal one particular Sunday morning included an incontinent cockapoo who woke me for yet another dash down my Hugh Newell Jacobsen stark wooden staircase to the back door with stiff joints and ankles that don't bend in the morning thanks to 17 rounds of chemotherapy. Is it normal that two weeks after my final breast reconstruction, a surgery that was about as fast as a stop at a McDonald's drive-thru and did not allow for me to stay overnight in the hospital - is it normal that my valentine on February 14, just days after I had my drains removed from my own surgery, was to be sitting in an orthopedic vet's office in Springfield, Virginia across from an Outback being told that Izzy, my three year old cockapoo would need double knee replacement surgery because she was born with a genetic defect common to little dogs? Is it normal that in the waiting room there was a very elaborate board listing all of the dog specialists including radiation oncologists, neurosurgeons and cardiologists and that it was fancier than the waiting room at Georgetown's Lombardi comprehensive cancer center.

It was perfectly normal to burst into tears as the orthopedic vet, whose name happened to be Dr. Griffin, explained that the usual recovery would be 8 - 12 weeks during which Izzy would need to be immobilized so that she didn't run, dash or jump and reinsure her new bionic knees. Of course, she would not be able to climb stairs or go out to the bathroom on her own. She would need to be carried everywhere. She would need constant supervision and if we did both knees at once it would only cost me $6500, a discount for doing both at the same time. I called Greg in tears. He, exhausted coming off the overnight and thinking that he was ahead of the game this Valentine's having stopped at Safeway on the way home, to pick up a dozen roses - I explained years before the difference between store bought roses and carnations and he hadn't made that mistake since, say, Moscow. All Greg wanted was to crawl into our unmade bed and get some sleep. He thought he was off the hook that morning until I called crying from the vet's office. In his stupor he agreed I should leave Izzy to get the surgery. We both knew there never was going to be a good time to take care of this. I sobbed as I handed Izzy to Dr. Griffin. I felt like I was abandoning her to be put to sleep - she looked at me quizzically not knowing why I was leaving her or that she would be saddled with the hard plastic "cone of shame" for two weeks while her stitches healed. I couldn't look at the check-in nurse as I left the animal hospital. She would have thought someone had died. My only hope was that they would keep her as long as possible because I had no idea how we were going to immobilize her once she came home or protect her from a rowdy 2 year old, whose new favorite phrase because it gets a rise out of us is "Izzy shut-up." I had no idea how I was going to carry my 10 pound dog around when my own doctor's orders were not to carry anything heavier than a pound of flour for the next few weeks. Remember my surgery was less than 2 weeks earlier and I still had my own stitches to contend with.

That afternoon, Valentine's Day, Greg and I had already made plans to go visit our old friend Joao Silva at Walter Reed. Joao was one of the photographers whom we used to run around the townships with when we were young and foolish in South Africa. He and his band of brothers - 3 other war photographers have been immortalized in the book and now upcoming film, "The Bang Bang Club" starring Ryan Philippe. One of them killed himself after taking the iconic photo of a vulture next to a starving child in Sudan, another was shot and killed in the townships just before the end of apartheid and a third suffered months of guilt and anguish after winning a Pulitzer for taking a series of photos of a man being "necklaced", burned to death with a gas filled tire placed around his body in the townships as apartheid was ending. Joao stepped on a landmine in Afghanistan last November and lost both his legs. But he didn't lose his sense of humor or his fierce, infectious love of living and photographing the world's tragedies. In fact the Sunday Times, a South African newspaper for which he once worked, had tried to take him off the township beat. They thought that all the dead bodies and violence was getting to him. They sent him out one Sunday to take pictures in Joburg's Zoo Park. On a sunny day surrounded by manicured lawns, Joao gravitated to a wobbly duck that was clearly not well. That Sunday Joao convinced his photo editor to run a series entitled "Going…going…gone" as he captured the last moment of the duck's life. He was reassigned back to the townships and has been photographing the horrors of war ever since.

Greg and I found Joao sitting in his hospital bed surrounded by stacks of books and magazines seated in a bed that had been his home for the past 3 months. He detailed dozens of surgeries. On either side of him in Ward 32 were soldiers who had lost limbs in Afghanistan, poster children for the signature wound of these post- 9/11 land wars. Joao doesn't think of himself as a "Wounded Warrior" and he won't let you compare him to one. He says those 18 year old boys have their whole life ahead of them and they don't know if anyone is going to love them. He had a life. He has a wife and kids and he will get back on his prosthetic legs and probably win another Pulitzer. As we sat there my cellphone rang. It was a shrill ring and I dove to answer it because I knew it might be the vet. In a moment as surreal as any from the last few months, I stood in the corridor of Walter Reed outside the room of my friend who had had both his legs amputated to hear about my cockapoo. Reassured that she had pulled through her surgery alright. I told Joao what the phone call was about and he laughed. He still had a sense of humor and not an ounce of self-pity. He was the same Joao Silva sitting with an elfish grin and wicked sense of humor atop his hospital bed and both Greg and I walked out of his room feeling that there are certain spirits that just can't be contained. Legs or no legs, Joao did not feel sorry for himself and he already had big plans for what he was going to do when he got out of the hospital, even though that would likely be another 11 months.

I went home and got the kids and went to Petco and did what any rational person would do under the circumstances - bought Izzy a large crate, a bunch of toys and a Snuggie made for small dogs. We were all ready for when she came home from the hospital. And I wasn't even on painkillers. Luke played in the crate for a while when we got home. He looked like Hansel through the wire grate. The girls slept with Izzy's new toys and blanket so that she would smell us and feel secure when she returned and found herself not sleeping in the crook of my bent knees but instead immobilized in her new crate - the Gulfstream of dog crates I might add.

She slept there a total of two nights. I couldn't take the crying. It was like having an infant. I was so excited to get back to work after two weeks off to "recuperate" from my surgery. I desperately needed to get some rest.

My greatest luxury these days is to find a few minutes to write blog entries, which as you can see from the gaps in posting is not all that often. Usually after the kids go to bed. I am most productive between 10:30 and midnight. And I always jump out of my skin each night when I am seated at the dining room table, my MacBook open and a voice that sounds like it could be something out of "Twilight" says in a haunted, distorted baritone: "It's 11 o'clock…" Annalise set my computer so that it does this every hour that it is open. She recorded her voice to tell me the time. It makes me jump out of my skin every night as I sit alone downstairs with Izzy wrapped around my feet.

I guess this is the new normal. It doesn't include a lot of sleep, but it's just whacky enough to make me realize that everyday I move one step further away from having cancer be my sole focus.

Izzy got her stitches out and has the knees of a one year old. Between her knees and my bionic breasts, we are ready for just about anything.

I am so glad to be back to normal.