"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 F..ng 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.

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.