Waiting in the upstairs hallway of our church parish last night, the very same hallway I waited in last October. This night is relatively peaceful, waiting for imac, the BoyScout. In October I waited for imac, the flutist. October's hall waiting was interrupted by Melanoma Man's phone call with the official confirmation by the oncologic surgeon that MM's lungs contained multiple tumors. I knew multiple meant "too many to count." He was upbeat during the call, as usual. It is both maddening and endearing how upbeat he is. Maddening because I carry the burdens of reality. Endearing because it allows him to relish all the little moments with me and the boys.
At work today I am thinking. Now he is in MRI, now CT scan, now Clinical Research Unit. Not thinking of much else, except for things like: my friend Sara is picking imac up from school, now she is picking up Butter. She sends a text to let me know the boys are at her house playing ping pong. Another text from Melanoma Man: "scans done, hotel."
Four thirty, finally time to go home. Not that work has been particularly hard today. Just that Moffitt days break up the bits of normal and remind us all of cancer. These past three weeks MM has really seemed almost himself again, like a guy who only has Alpha 1 Anti-Trypsin Deficiency and 28 % lung function. This is positively relaxing for me compared to being married to the guy with Alpha 1 Anti-Trypsin Deficiency and Metastatic Melanoma.
I did have the best pedicure I've ever had in my whole life on Saturday. And no one called me while I was out. Not one kid, called from the Kidphone to say: "Mom, I'm bored. Mom, when are you coming home. Mom he's looking at me. Mom, Dad is mean." It was truly a gift. I'm pretty certain God was involved. He was reminding me how lucky I really am. He was reminding me that it was my 25th sobriety anniversary and that without that I'd have none of these characters in my life.
Tomorrow more news. We'll get CT scan results of abdomen, chest, and pelvis. We'll get MRI results of brain.We'll find out if we just bought 8 more good weeks until the next set of scans. At work, I'll try to remember that I am at work and I'll try to remember to work, while I wait for my text of test results from Melanoma Man.
Showing posts with label alpha 1 anti-trypsin deficiency. Show all posts
Showing posts with label alpha 1 anti-trypsin deficiency. Show all posts
Tuesday, April 16, 2013
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.
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.
Subscribe to:
Posts (Atom)