Thursday, January 31, 2013

Leaving is Messy-written in 2012

It was this past Friday that she left this world. I was her nurse for the last 5 years and I hardly knew her. Many days I think I did a shabby job of it. “It,”  being convincing, coaxing, encouraging her to live, convincing her to swallow the same pills day after day after day. She could only do it for at most a month in the time I knew her and that was a stretch. She was always sure that she didn’t want to die. She was never sure what it takes to live. With each swallowed pill an implied confession: “I have AIDS, I have AIDS, I have AIDS.” A confession she could not tolerate for days in succession. And it was not even her confession to make. It was the confession of her mother, who left her eighteen and a half years ago. It was something handed down from one generation to the next.

She had the biggest beautiful doe eyes and a raspy voice when she chose to speak. More often than not, she opted not to speak. She stopped calling for a month. I later found out that I had hurt her feelings when I told her “YOU are disappearing before my eyes.” My apology was delivered to her by her sister, since she would not speak to me.

Last July I realized that it was already over. Her words clung to life, but her inactions predicted an early death. They never matched, ever, the words and actions. It was tricky, new caregivers, usually a new hospice nurse or social worker would call me elated, excited: “You’ll never believe this. She doesn’t want to die! She wants to take the pills.” 

And I would tell them that she never wanted to die, she always wanted to live. Look in her closet, just open the door I asked. And when the caregivers finally did, bottle upon bottle of life saving prescriptions tumbled from her closet. “See, it’s not me. I’m not the one holding her back.”

I had to change. I wanted to stick by her, even if it was messy. I remembered my father’s Mayo Clinic doctors abandoning him and any memory of him once they saw their treatments fail. Her last week I did not visit daily. I just couldn’t muster it. On the last day I was there. I whispered in her ear “You are loved.” I wanted to tell her that the angels were coming, but I didn’t want to scare her. She didn’t know about the angels yet. But now she does.

Wednesday, January 30, 2013

Bedtime Songs

Tonight Youngest Son's Room Bedtime:

W: "Mom tell me about your Dad. What was he like?"
Me: "He sang to me every night, if I was still awake when he got home."
W: "What songs mom, what songs?
Me: "All my favorites: Five Foot Two, Eyes Are Blue, Please Don't Sell My Daddy No More Wine, Old 97, Two Little Girls in Blue, The Green Green Grass of Home, Tie a Yellow Ribbon Round the Old Oak Tree."
W: "Mom, how old were you when he died?"
Me: "32"

And I think how lucky I am to have had him as my father for thirty two years. If you'd like to hear him sing to you too, then go here:

and here:

Monday, January 28, 2013

Thoughts on Love

Valentine's Day coming up. Not really my favorite holiday. I prefer Groundhog Day, find it more hopeful. Valentine's Day seems so forced and not really made for people with all our flaws and broken parts.

Remember when you were young? Remember lists of boyfriend criteria, qualities or characteristics you desired? The thing is that Melanoma Man and I never had the qualities on the other's list. So we had to throw the list out. He envisioned a tall willowy blonde, ambitious and aggressive. I envisioned someone in the ballpark of my age range, protective, not super tall, not super thin . A person who would take care of things, plan, let me be in charge of the house and the kids and where we would live. In 1995 melanoma man decided quite suddenly that he was in love with me. We'd known each other for 4 years. I know 4 years doesn't qualify as sudden for most folks, but it seemed downright impulsive to me. Maybe he had a fever and would be better the next day? Each day he called and repeated that same annoying phrase, "I love you Laundry Thief." Only he didn't call me Laundry Thief then, nor does he now. He used my full given name and title every single time he called to tell me that he loved me, which was every day. It was getting ridiculous.Of course I did love talking to him. He was my best friend, still is. We had already had 2 breakups. I didn't think I had another reconciliation and breakup in me. So I drew my line in the sand: "I can talk to you under one condition: you may not tell me you love me. And that's final." To which he replied, " well that is just not possible."

And so it was. We did not speak again for the next 2 years. In the fall of 1997 a mutual friend casually mentioned that she had seen Melanoma Man, that he was leaving the very next month for a job in Armenia. I thought about it for 48 hours before I picked up the phone. Would he recognize my voice? I was perhaps even more nervous than the first time I called him 4 years earlier to ask him out on our first date. We talked for 2 hours, lots to catch up on. "So what are your plans?" he said.
"Plans? I don't have a plan."
"Call me back when you do."
I called back the next morning, "dinner, tonight?" And that was that, pretty much decided in a Mexican restaurant in Rosslyn Virginia. We spent every evening together for the next week before he began the first 6 weeks of his new job .We were officially engaged upon his return, in spite of our numerous imperfections and incompatibilities. Three days post engagement ,7 am,we sat in Gayle's office and got the news of the first melanoma. He tried to talk me into cashing out while I was ahead. But what about all those "I love yous." I finally believed him. There was no turning back for me.

Friday, January 25, 2013

"Oh Blah Dee, Oh Blah Dah, Life Goes On"

A few sleepless nights I've had, attributable to the academic, Pathophysiology and the practical, Melanoma Man's deteriorating respiratory status. He stops at the doorway of the kitchen to catch his breath, doing the dishes results in intracostal and supraclavicular retractions. I check his pulse ox, just because sometimes the numbers help me confirm my view of reality. Standing up Pulse Ox=81, after sitting on the couch for 5 minutes, back up to his baseline of 92. He returned the oxygen concentrator 9 months ago. "I don't need that thing. It's too expensive."

 He looks grey and stricken and he chatters on and on: "Why haven't we had so and so over for dinner?" I am disgusted and incredulous. I would like to kick him in the shins and shake him and say "Because you have cancer." I am restrained and I follow my rule, which is to only use the F word at work. Instead I say something like: "Because our house looks like a dumpster," which makes him sad. It flys in the face of his view of what is happening, which is nothing, nothing at all. No problem.

MM called me around 2 p.m. to tell me that our new insurance company doesn't use Curascript to dispense the Vemurafenib. I thought I had this all taken care of, when I gave him the new card, contacted the insurance liaison, notified all the providers, notified the new insurance company of his diagnoses and medications on December 12, 2012. The two specialty pharmacies for my insurance company, Shands and ICORE can't get the drug. MM spends two hours on the phone. Walgreens specialty pharmacy ends up being the answer. First it must go to the review committee of course. Our last review committee took 8 weeks to decide. He runs out on Sunday.

"You know Laundry Thief, you have to be careful. People will start treating me like an invalid if they know I have cancer." He's told a few people now. Today I told another, DD, a pharmacist friend from work and church.

Sitting at my desk at work. That is all. I've done it all. There are no more emergencies or crises, no more calls I feel compelled to make. I've gotten us as far as I can and strangely I don't get upset. Because I know. I know the drug won't save him. It will give him something to do, an action to take. It buys a smidge of time. Without it we wouldn't have had this last Christmas.

 I get home to hear MM on the phone with my pharmacist friend DD: "No, no it's not that bad. I don't have any symptoms. The drugs are working. Laundry Thief and I got 15 years we weren't supposed to get."

The only part that's true is the fifteen years. We shouldn't have gotten them but we did and we got two great kids out of the deal. And in that vein I withdrew from graduate school today, so there will be a little time for me to spend with my two great kids and Melanoma Man before our time is up.

Wednesday, January 23, 2013

Garbage Day

It's 5:24 a.m., Wednesday, which I remind myself is "Garbage Day." I'm supposed to be studying, writing  a paper on Acute Myeloid Leukemia. My brain won't settle down. The images and words of yesterday flit across the screen of my mind. It was a school holiday, oldest son not home yet from Scouting Camp Out. Melanoma Man decided to take youngest son to Harry Potter World for the day-ambitious.

At work I received texts and photos from Melanoma Man every 45 minutes or so, throughout the day: "More walking" and "I'm dead meat" just two of the many. Interspersed photos of smiling youngest son. Worry, worry  and I so wish Melanoma Man would not say things like "I'm dead meat."

Reunited last night: me home from work, oldest home from camping, MM and W back from their adventure with a Chocolate Frog and Bernie Bots jelly beans and memories.

In the bath, W calls to Melanoma Man, "Dad would you read to me? I brought your chair and my book to the bathroom so you can read to me."

Melanoma Man heeds the call, up from the sofa, stops at the doorway of the kitchen to catch his breath, dutifully reads to our young son for 5 minutes or so. Then back to the sofa to rest. I step in to pick up the reading where MM left off. W: "Mom, I wish Dad didn't have this sickness. Will he get better mom?"

Instead of saying "We've had our better. Now comes our worst," I say "I don't know. I don't know." It is a lie. I DO know, but I cannot say: "These are the good times babe. These are the good times."

Friday, January 18, 2013

May and December

Last night I stepped outside the front door in bare feet, which is usually a reasonable thing to do in Florida in January. The temperature was dropping, the driveway cold, a little wind, crisp air. I looked up into the sky, clouds racing by, breathing in the cold air, feeling free for a just a moment in my driveway. Free of burdens or worries or cares. Then I remembered my baby birds inside the house and how I am here to teach them to fly. Some days I push too hard, rushing them, and wishing I were more grown up myself. Wishing I had been a better planner, less of a follower, more of a leader, less acquiescing,  more demanding. As if any of this would have prepared me for today, in this house, in this life.

I sit on the sofa tonight, demand  Melanoma Man hold my hand. He complies. There is less, a smaller hand, a weaker hand, less each day. By next week the mustache will be gone. I've never seen him without it. He's had a mustache since 1975 I think. But I wasn't there in '75. I was busy working through the fourth grade.

Now I understand finally about May and December. They didn't seem so far apart when we were 25 and 42, 28 and 45, 32 and 49. It's my springtime, time to gear up for the next 40 years. Three months ago when he told our baby birds about the cancer being back,"Don't worry, I'm not losing my leaves yet, not yet."

Shoulder Cactus

Five weeks into Vemurafenib Melanoma Man asked me to look at a new growth on his left shoulder. "What does it look like?" said he. "Can't say, like nothing I've ever seen before. Maybe something you'd find on the moon or maybe a shoulder cactus?" I've seen a lot of stuff, much of it on Melanoma Man: 9 primary melanomas, a zillion basal cells, a few squamous cells.

Melanoma Man advised later that he thinks the shoulder cactus is called by a German name, but he can't recall. Sent me a text today regarding his new calf cactus: Keratoacanthoma. Fancy.

Thursday, January 17, 2013

Word Salad for Breakfast

Our kitchen this morning. Oldest son to Dad/Melanoma Man: "Dad will you be the egg chef this morning?"

Melanoma Man, in his element in the kitchen, loves such requests. He knows that the Laundry Thief's version of scrambled eggs just don't hold a candle to his. Laundry Thief has NOT stolen the kitchen from him.

"Here are your potato chips!" Melanoma Man exclaims proudly.

"Dad, did you mean to say potato chips?"

A cloud of worry comes over Melanoma Man's face. It's his third word mix-up in the last day. An Ivy League educated English literature major and former litigator, where are the words going?

Thursday, January 10, 2013

Buying Time

Winter 2006
We sat in the exam room of the International Clinic with our South African doctor, as he placed the chest x-ray films on the light box. Melanoma man was 2 weeks into this bout of pneumonia. We were worried, silently not mentioning to each other the two things that lurked in our box of worries: lung cancer and metastatic melanoma. I walked up to the light box, not believing what I saw, which was nothing, nothing at all, no tumor, but black dead air space where there should have been lung tissue. Pointing to the gaping black space in his lung, I whispered to the doctor: "What is this?" He replied: "I don't know." South African doctor wanted to know when we would be returning to the West, to the first world. Advised spiral cut chest CT with contrast as soon as we returned to the States. 

Then began yearly bouts of pneumonia, and avoidance of chest x-rays, CT scans and the like. Melanoma Man was NOT going to let any diagnostic studies take away his life, his joy, his family.

Spring 2009
Sitting in the Memorial Garden of my church with my dear friend and Family Practice physician Dr. B. Melanoma Man was sick again. I went through every piece of data I could think of: pulmonary function test results, number of respiratory illnesses, lab results, and of course the x-ray from 2006. Dr. B. thought pulmonary bullous disease secondary to alpha 1 anti -trypsin deficiency. How to diagnose, how to treat? I did my research and presented the options as gently as I could to Melanoma Man. NO, NO, NO he would not go.

Fall 2011. Melanoma Man, a persistently happy thinker and dreamer of dreams, decided it was time. Time for the pulmonologist. He first noticed the shortness of breath in 1998, as we hiked the Canadian Rockies on our honeymoon. It made sense, he had been a smoker in his former life after all. This time was different, he didn't recuperate the way he had in the past. It was a 3 month wait to get in to Dr. C, pulmonologist. Dr. C. and the Melanoma Man immediately struck up conversation, some friends in common, a shared generation, no white coat, smart but folksy. It wasn't my job anymore to figure out what was wrong and fix. A burden was lifted. Melanoma Man trusted and respected Dr. C. Dr. C confirmed that Dr. B. was indeed correct: Alpha 1 Anti trypsin Deficiency and pulmonary bullous disease.

Winter 2012. Melanoma Man underwent same day surgery for installation of his Power Port, an oxygen compressor arrived at the house, medical supplies began arriving, weekly infusions of Zemaira began after 8 weeks of being in the Review Committee at our insurance company. Still no one from our insurance company could tell us what it would cost us because it was outsourced to a subcontractor and then a specialty pharmacy. "I'm not sure if it applies to your deductible. It's not on formulary. We'll find out after we bill it."

July 2012. The bills  begin to arrive, $10,000 to be paid by us, a tiny fraction of the overall cost, but HUGE nonetheless. What other services do you pay for after having received them for 6 months, without knowing the cost? By this point we are pretty invested because it seems to be working, buying more time for Melanoma Man to be here with us.

August 20, 2012 I'm at work, 3 o'clock, busy clinic. Melanoma Man calls me on the cell. I'm in clinic. It's noisy, we are busy. Melanoma Man says: "Can you go sit down at your desk and call me back?" Hhhm. That's strange. Yes I can. I sit. I call. I listen. "The lesion Gayle took off 2 weeks ago is metastatic melanoma." I am in disbelief. There have been 9 primary melanomas in 15 years. Why I wouldn't expect this day to come?

January 2013 Three months into a  dose escalation study of XL 888 and Vemurafenib: the 3 largest tumors have shrunk by 40%, some tumors are no longer visible, some tumors have remained static. Melanoma man is now growing what I affectionately call Cacti, strange new growths like nothing I've ever seen. A medication side effect. He's 10 pounds lighter. His mustache is falling out, eyebrows too. He picks the kids up from school, helps with homework, goes to Scouts, re-reads favorite books A little more time, a little more time. His is living in the moment. He does not worry as I do, or fret about how much time. He just drinks in the gift of it all.