Friday, May 31, 2013

Size Matters

Melanoma Man was back at the cancer center 4 Wednesdays ago. I decided to treat myself and take the whole day off from work, instead of racing downtown and then back home in time for early release to pick up kids. What is this "early release" thing anyway. Middle school gets out at 12:50 p.m. every Wednesday. Up north when I was a kid we called that a half day and that's what we did in kindergarten, half days. I digress. After getting the kids off to school I walked on the beach for an hour and a half. Home to do laundry and other assorted household chores.

This month's cancer center visit included labs, EKG, a visit with the Oncology Nurse Practitioner, a visit with the Research Nurse Coordinator(Letitia). I emailed Letitia a week ahead of time to ask that the new skin lesions be evaluated. Oncology Nurse Practitioner eye balled them and said "probably cysts." That wasn't what I had in mind. Perhaps I should have been more specific, as in "Please have the Dermatology Nurse Practitioner or the Dermatologist look at them. Customer service people! Is there no customer service in healthcare. I know the answer to that question. No, there is not. Wouldn't it be common courtesy when your patient has driven for 4 hours to an appointment and has been bleeding money into this "out of network" cancer center, this buying of time. There is no "in network" melanoma specialist, so they've got me there. The choice is pure illusion.

My mind drifts back to the year 2000, when my mother was hospitalized for a severe headache and double vision. I flew down to Florida from DC. Standing at her bedside, talking to her internist, wondering out loud about ordering a  Neurology consult and the head CTscan. Shouldn't that have been obvious. Then the results came in, an aneurysm deep inside her brain, in the cavernous sinus. The neurologist and internist telling me that no one would operate on this. I called Bryan, my skull base surgeon friend, surely he would know. He did know and he pointed me to the Sheik, that's what I called him, really Laligam Sekhar, one of 25 surgeons in the world who might take on the job of putting my mother back together.  I remember Melanoma Man, fiercely afraid of hospitals and all things medical, pulling me out of my mother's room in the ICU to show me the "really sick people" that inhabited the rest of ICU as I cried and worried about her swollen shaved head and her wildly erratic blood pressure and her brain of course. It was midnight. I had been at the hospital since 5 a.m.  "She is going to make it, and you are coming home and going to bed." I was pregnant with imac at the time and was making my last ditch effort to turn her into a decent grandmother before he was born.Melanoma Man was right, she did make it,  but the grandmother cause at this point was hopeless.

In April Melanoma Man came home from CT scans at Moffitt declaring, "Two of my six marker tumors are no longer visible on the CT." I was encouraged, yet something in his voice told me that wasn't the whole story. This week he laid April's CT report on the kitchen counter, where I usually check for mail. The rest of the story was in it. Two of the remaining marker tumors grew in size by 20%. To me a much more significant piece of information than the two disappearing tumors. The twenty percent increase means these two previously shrinking melanomas have developed drug resistance.

I've filled these past few weeks with walks and books and even movies, getting lost in other people's stories. Fourth grade and Seventh grade come to an end next week and summer begins.

Some days it's hard to show up for real life, like the Saturday afternoon that imac and Butter were invited to see Iron Man 3 with friends. Melanoma Man knew other moms would be there to mind the children. He asked me to come home and hang out with him. I so wanted to spend the afternoon watching Robert Downey Jr. to escape into the busyness of children's schedule, to escape into the imaginary world of a movie. Just to go or be anywhere but in the last act of Melanoma Man and Laundry Thief. I did the right thing. I went home. I watched golf on tv with Melanoma Man and read my book and talked about the week's articles in the Economist. It was ordinary and yet so hard. Most of the time I end up doing the right thing. Most of the time.

Friday, May 10, 2013

Home, there's no place like...

Melanoma Man is on a road trip this weekend back to the family home in North Carolina. He comes from a place where the streets, and mini-marts and dirt roads are named after family members, where historical markers on the roadside tell stories of his ancestors. He's got roots. It's totally foreign to me. I feel hydroponic in comparison. Nevertheless, this family that gathers every Fourth of July has welcomed me ever since I was just some 25 year old he brought home. All my life I kept clicking my ruby slippers, trying to get home. I was the sickly child, the somatosizer, the oversensitive child. I just felt too much. When I wasn't fighting the Civil War in the pasture or playing basketball with my brother Johnny Reb in the driveway, I was in bed with stomach aches, sore throats, headaches, fever, vomiting. Some years I missed so much school that it was threatened that I would not be promoted to the next grade. My grades were good, excellent in fact. I was always promoted in spite of the threats.

Eventually I found home. Home was with Melanoma Man. I stopped getting sick until his travel schedule picked up significantly. Melanoma Man's work had him out of the country eighty percent of the year. I started getting sick every time he left the country. One particularly difficult night of vomiting and headache landed me in the ER for dehydration. I was pregnant with Butter at the time, but didn't know it. My pregnancy test in the ER came back negative. My ER doc's diagnosis was tension headache. After a bit he sat down next to my bed and asked: "Where is your husband?" I replied: "He's in the former Soviet Union." 
"He needs to come home, now. Can you call him?"
"No, but I can email him."
"You go home and email him and tell him he has to come home for good."

I'm not sure how this ER doctor knew the source of my ailment, but he did. I tried to put on a brave front during Melanoma Man's travels, but he saw through it. 

I have found myself  irritated, annoyed, and angry with Melanoma Man during these cancer months, trying not to need him, trying in fact to dislike him intensely. Knowing that I am losing home.

Thursday, May 9, 2013

Almost Normal

For the past four weeks things have seemed almost normal. November, December, and January felt as if we were in a nose dive heading straight for earth. Then something happened, in the canyon we leveled off parallel to earth but very very close, gliding, wondering when the fuel will run out, while we try to appreciate the view. Sunday I finished a scrapbook layout, something I haven't done since the week before August 20, 2012.  Melanoma man made dinner. The sun came out after a week of rain and running the pump in our back yard to keep the water from coming in the house. I went for a walk on the beach with my Stephen minister, Kathy.

I ran into a friend at church last Wednesday night. She has been asking if she could bring dinner for the last 3 months and every time I have said no. This week I said "YES." I put it on the calendar and Melanoma Man asked me: "Is this because of the cancer?" Well yes it is. So there.

Saturday I met a friend and we went to have manicures and pedicures. Well that's not normal for me, that's new normal.  I made Mother's Day cards for my two moms, birth and adoptive. Melanoma Man and I sat on the sofa and talked about a workshop for caregivers he attended  on Saturday. Admittedly he said I should have attended. I'll get the book.

I saw the new quarter sized black lesion on his right leg, trying to take in as much detail as I could, comparing it with the images in my brain of his past keratoacanthomas, melanomas, basal cell carcinomas, squamous cell carcinomas. This one appears to be a breed I haven't seen before. There is no reference for it in my brain. The blackness, along with another black patch worry me. I try to avert my eyes and Carry On as if I have seen nothing. His next appointment at Moffitt is next week. They will figure it out. I don't have to. Images of all the dressings I've changed, stitches I've removed, waiting rooms I've waited in flit across the screen. I try to turn it off. Be here now. Be here now. Four weeks at a time between cancer center visits, I tell myself: "Don't waste this time."  As if I can grieve ahead in advance of bad news.

This morning I wake up and remember our wedding day, fifteen years ago today, just down the street in what was then my parent's home. We packed a whole lot of living into these years.

Friday, May 3, 2013

Mother of Two, Boo Hoo

Before we married Melanoma Man and I talked about having two children, as if it was all up to us. Thinking we were in charge of all the variables, and because we said so things would just happen the way we planned. The fact of the melanoma was there from the start. I pushed it aside, tried not to look. Two years after we married imac was born. Again it was a planned event. I planned to use self-hypnosis to get through labor. My walking partner, Judy, mother of three, physician and epidemiologist had done it. So I figured I could too. Judy's Dad was a psychiatrist and had taught her self hypnosis. She used it for the birth of all three of her children. My friend Marianne was a Doula and a Bradley method instructor at the time. The evidence was all  around me that natural childbirth was feasible. After a bit I found a class, HypnoBirthing, one state away. Melanoma Man was game. We spent 8 weeks with six other couples watching videos of women quietly giving birth. There was no resemblance whatsoever to what I witnessed during my labor and delivery rotation in nursing school. I decided to believe in Hypnobirthing anyway. We had guided imagery scripts to practice with and a cassette tape, a t shirt and a pen with the Hypnobirthing logo. We did our homework, practiced. Pretending to give birth is like pretending to be dying I'm guessing. The pretend version really doesn't do it justice.

Imac's due date came and went. I had a doctor's appointment on his due date. Dr. B determined, "Nope it won't be today, not dilated." He gave us a time frame, after which, if labor had not begun, he would induce. I left the office crying. Dr. B. knew of my plans to use HypnoBirthing and to his credit he was not critical, offered no opinion, let me know I could change my mind at any time. That afternoon Melanoma Man and I went on a long hike, ate spicy food, did everything we could think of to induce labor. Nothing. Ten days would pass. On the tenth day I woke up around 5 a.m. feeling crampy. This is it. This is the day! Melanoma Man started in with the HypnoBirthing scripts around 7 a.m. We timed contractions and went to the hospital around 11 a.m. when the contractions had reached the frequency that warranted it. To my dismay I was only 2 cm dilated, zero percent effaced. I was advised to walk the halls, which I did for 2 hours. Then we were sent home. "How will I know when it's time to come back?" I asked. The labor and delivery nurse replied, "Oh you'll know. You will know."

Dutifully Melanoma Man read the scripts, checked on me. I didn't feel like I was on a pink cloud. I didn't feel like I was going to be ok and soon I started vomiting. The vomiting broke whatever little bit of spell the hypnosis might have cast and it continued every 20-30 minutes or so for the next 19 hours.  Back at the hospital I  wouldn't let Melanoma Man go to the cafeteria for dinner and I wouldn't let him eat the snacks I packed for him either. After 20 minutes or so, he said he was "stepping down the hall to the nurse's station." I knew he was going to the cafeteria, but I liked the idea that he was just down the hall, not two floors down in the cafeteria. Although I was in no medical danger whatsoever I became convinced that I was going to die and this is why it was absolutely imperative that Melanoma Man NOT leave the room. I thought that dying would be OK really. I thought Melanoma Man would do just fine as a single Dad. By this time I had already thrown in the towel on Hypnobirthing,  asking my labor and delivery nurse for whatever relief modern medicine could afford me. "Not yet, too soon," she said.

Around 10 pm the anesthesiologist arrived to put in the epidural. I was prepped, in position sitting on the side of the bed,with my back beta-dined and ready. A contraction started. I asked him to wait. "No, this is the best time to put in an epidural, during a contraction," he said. I was doubtful. Next the pitocin drip to try to strengthen the contractions. Around 3:30 a.m. Dr. H came in and said imac had still not dropped and that I was only 4 cm and not effaced. He recommended a C-section, to be performed by his partner when she arrived at the hospital after a full night of sleep. Imac was delivered at 8:38 a.m. At this point I had decided to retract my earlier decision to have two children. One would be just fine.

At home I took everything too seriously. I couldn't watch the news or the television show ER or anything which might include bad outcomes or danger. I was stunned by the responsibility of this one baby, this one baby that I would leave at home to go back to work in 5 weeks. Melanoma Man ran the show for the first month, during which I was totally irrational. He had baby care down in a week. Thoughts of melanoma returned. I remembered a patient I'd had, showing up 5 years out from her first melanoma with a tumor in her jaw. I thought maybe I could manage raising one child by myself, but certainly not two. Twenty years as a litagator, he won that argument, as he has won most. I finally fessed up to Melanoma Man just last week, once our two children ages 10 and 12 were in bed: "you know the real reason I didn't want to have two kids was my fear of the melanoma coming back and me doing this on my own. Now I can't imagine imac without Butter or Butter without imac."