Lost in a Bad Neighborhood

That's where I've been lately. Unfortunately I take these dark alleys with me wherever I go, because this bad neighborhood is  of my own making in my very own head. Sometimes I get lost there, even though I designed much of it myself. There are words and numbers in these alleys, like Median Survival time. This is where the hurt feelings and the bad decisions in my life lie.

The pace of life seems to have picked up since Melanoma Man's brain tumors popped up. I spent a good week being furious with him and feeling utterly powerless and mad at myself for being mad at my cancer patient. There is lots of waiting, some of it necessary, some not so necessary. Joel, a friend of Melanoma Mans for 38 years, was in town from California visiting last Wednesday and Thursday. Joel was the Best Man at our wedding. Melanoma Man deferred his consultation with the Radiation Oncologist until this Wednesday due to Joel's visit. I suspect he will defer the procedure itself when they try to schedule his stereotactic brain radiation during Fourth of July week. "Fourth of July week? No absolutely can't do it. We'll be in Riverton, family picnic, reunion, can't miss it." Riverton on the fourth is, a gathering of 200 or so of Melanoma Man's relatives for a picnic, catching up, swimming in the Lumbee. These are the reasons to live, visits from friends, hanging out with family, sharing stories and memories. I remind myself that it's about the living, it's about the people, not the procedures.

Saturday morning when I awoke the word "forgiveness" popped into my head. I know that this is the way out, out of my head.

On the way home from dinner with Joel on Thursday the conversation turned to valet parking. Butter chimed in from the back seat, "They have valet parking at the cancer center." This was it, Melanoma Man's opportunity to break the news to Butter and imac. He told the kids about the brain tumors. imac was silent. Butter wanted to know, "Will they get it all? Will more come back?" When we answer truthfully Butter acts like he can't hear us. He has started kneeling on the kneeler at church when it is time for the prayers of the people instead of reading Calvin & Hobbes. He is praying fervently.

Saturday

I forgot my hair appointment today, which is out of character. A bit of stress on the brain, anticipating the upcoming Cancer Center appointments. Not nearly as dramatic as the time I left the keys in the Cadillac, with the engine running and the car unlocked ALL DAY at work. I'm sort of famous at work for this, at least with the medical center security staff. I was once again reminded that I have an angel the day that happened. It wasn't even cancer that evoked that response. It was my health insurance company. Waiting for approval on Melanoma Man's Zemaira which treats his Alpha 1 Anti-Trypsin deficiency. We waited about 9 weeks and then no one could tell us what it would cost us out of pocket. We found out the hard way when a bill for $10,000 came in the mail 6 months after he started treatment. It's a steal compared to the full retail cost, which is about $96,000/year.  Saturdays are usually crazy for me under the surface, trying to inconspicuously wash all the sheets and clothes, sweep, mop, clean bathrooms etc when melanoma man isn't looking. Last night cleaning kitchen counters Melanoma Man walks in with THAT face on. It's a face that makes me want to smack him, but I never do.  "I feel so unworthy," he says and then I feel a little guilty for my thought crime.

"Too late for that. I already love you, you can't give it back. Just accept it." I said

"Look at this," he shows me his swollen elbow. It has a pouch of fluid that feels like a water balloon just under the skin. "What is it?" He says.

"A ruptured bursae I suspect. Does it hurt?"

"It's been hurting for 4 days, but mostly it's scary, not knowing what it is. My shoulders hurt too. I can barely lift my arm."

"Yup, that's probably bursitis too, just not ruptured."

"And I ache all over. My book is in the car, but I was too tired to get it."

It must be terrible to be betrayed by your body. He apologizes for what he perceives as complaining. I don't see it that way. "You are not supposed to carry all the burdens by yourself," I say. I don't say, but I do think " you act like such an asshole when you are pretending to be fine." 

Next week 2 days in Tampa for CT scans, MRI, labs, EKG, physical exam and results. More results. I took the two days off from work so I could stay home with the kids. My plans foiled again. "I'm taking the boys with me. You don't need to take off from work," he said.

"I am coming on this trip," I said. Too bad so sad. He is such a control freak. He changes the plan again, so I change my work schedule again. I'm not going to have it, him taking the kids by himself with a very high likelihood that the tumors will have grown.

Today we have the afternoon, evening, and night to ourselves. Friends A & K have invited the boys for an overnight. They are practicing their grand parenting skills or so they say. I think they are really just practicing extreme kindness and thoughtfulness. They have 5 grown boys between them. It's been years since we went on a date or had any time to ourselves. It was possible to do every week when we lived overseas and our dollars went a long way. Here in the USA it's more of an investment.  He is so in love with the boys that I have often felt like an outsider. 

Back when he was managing energy projects in developing countries he managed a lot of people. When he counseled staff about work performance he always started with a compliment before proceeding into what was supposed to be constructive criticism. Unfortunately he has applied this technique at home as well. Every "I love you," followed with "but..." So much so that I would do almost anything to avoid hearing the first half of the sentence because I knew what was coming. I get on his nerves and he gets on mine. That's where my fantasy of having my own cottage in the backyard came from. I just don't particularly see the point of telling him what his flaws are,  so I have never done it. Most of us already know our own flaws by heart. Whenever I might tell him I love him he would ask why. "Because, that's why, so there, love is a verb, now I have to provide supporting evidence? Are you kidding me?" The evidence is that I see the flaws, all of them. And I'm still here. I'm still here.

So with no kids to manage we had a picnic of carry out from Moe's and watched The Help in our living room. I sat still for the whole movie. If you know me you know that this is a miracle, this sitting still. My To Do list is almost always running in the background. Tonight for the first time since before we married he said " I love you," without the "but." It was worth sitting still for.

Legos have taken over, I want a place of my own

I suspect there are other working moms like me who come home to backpacks and jackets lying in the hallway, living room overtaken by legos, kitchen island covered in books, apples, legos, mail, a pair of boy scout pants that has needed hemming since the beginning of time. I say "working moms" because in my imagination the stay at home moms have got it all under control and would never let this happen in their house. Some days it feels like it's the final straw. Yes I think, it must be time for me to move out and get a place of my own. Somewhere along the way I got lost in the creation of this family.

I surrendered the Mom job to Melanoma Man years ago. Honestly I think I'm better at it too. Although to give him his credit he's done beautifully in the Dad role. In the evenings and on the weekends I take the Mom job back, bit by bit, trying to instill a bit of my way of doing things into the people in this house. I am usually only temporarily successful, with things returning to the usual state of affairs by the time I walk back in the door the following day.

I remember my Mom alerting us when my Dad left the office. It was a 25 mile commute for him, so that gave us time to pull things together. No toys, books, coats, debris in the living room, dining room, or kitchen. Everything put away or in your room by the time Dad got home. Now I really get it, as I trip over oodles of other people's belongings on my way into this house.

I think somehow that books will help me accomplish my goals, so I'm working my way through these two books:

1  Cleaning House: A Mom's Twelve Month Experiment to Rid Her Home of Youth Entitlement  and
2  The Crumpled Paper Was Due Last Week .

I'll report back on my progress. I'm still recovering from spring break when I worked while Melanoma Man, imac, and Butter stayed home and trashed the house. Now that Melanoma Man is in a relatively stable period and I'm no longer in crisis management mode, all the things I always wanted in this marriage and this family have bubbled up to the top. It is clear that it ain't gonna happen and I was a fool to think it ever would. Each truth is revealed in it's own time. This truth revealed either too early or too late.

Songs of Easter

Up at my usual weekday wake up time, 5:40 a.m., this Easter Sunday morning. The boys were surprisingly easy to get out of bed. Fifty five degrees out and a clear sky. We bundled into the van with our folding chairs and jackets, heading for the beach. I walk on the beach every week with Kathy, my Stephen minister. She says faith in God comes easier when you are looking at the ocean or the Alps. I haven't been to the Alps yet.

Easter service started at 6:45 this morning, in the dark with this song: Here is Our King, followed by In the Name of Love. The songs broke through and I felt it all. Most days I am a kite barely tethered by my kite string to the reality of my day to day. That way of living has it's pluses and minuses. I can still see what's going on, but I can't feel anything good or bad. Today thankful that oldest son, imac, carried Melanoma Man's chair to the beach for him, this time unprompted by me.

By 9:45 a.m. the boys (imac and Butter) and I are at a friend's Easter Egg hunt. I am surprised that imac at twelve is willing and eager to participate. Halloween was a no go this year, " I'm too old for that Mom." I wonder what the critical difference is between Halloween and an Easter Egg hunt that makes the egg hunt plausible for this twelve year old boy. No costume required? That could be it. imac announces in the back of the car, "I like to help the little kids who can't find any eggs." Hmm, altruism. Happily, at the end of the hunt I find him sitting on the lawn sorting through and tasting his candy just like any other "little kid."

There is no special meal at our house for Easter, which I think is just as well. Yesterday Melanoma Man went looking for a leg of lamb at Winn Dixie and came home empty handed. "Yet another reason I don't like Winn Dixie," he said. Our local Publix has been torn down. A new one to be built in it's place. I am relieved, not so secretly. I can't stand lamb or the smell of it, nor can the kids. No special meal to prepare, Melanoma Man can sit on the couch and watch golf this afternoon, eating Tostitos with Winn Dixie Chipotle salsa, the one thing Winn Dixie does right. He is flu-ish and achey today, as he is two or three days of each week.

imac, Butter and I spend the afternoon in our backyard playing badminton with no net and soccer with no goals. I'm not terribly coordinated or athletic. They don't care. I think they just enjoy seeing me play, laughing at their goofy mom, having no agenda or "to do" list.

In the evening we watch Meet the Robinsons, which is one of my all time favorite movies. I haven't seen a "real" movie in about 12 years, since imac was born. Just Pixar and Disney. The movie ends with this song: Little Wonders. My day has been filled with them, these small hours, the little wonders. Best of all I showed up for them.

Groceries

It was a good week for Melanoma Man. He worked his way all the way to the bottom of the piles of paper that have covered his desk for as long as I can remember. A burst of doing and organizing that reminded me so much of the nesting we women do in the weeks just prior to the birth of our babies. Trying to make everything just so, just right, worthy of the new life that will dwell in the space of our homes and our hearts.

Over the past 5 weeks I started to think that Melanoma Man's grocery shopping days were over. He loves to grocery shop and cook too. We had 2 aborted trips to Winn Dixie last week, with him making it just inside the door before stopping to catch his breath. I looked at him, I looked at the motorized grocery carts, and back at MM. I couldn't do it. I couldn't suggest the obvious. It would have devastated him. So instead I said : "You wait here. I'll just dash through the store for a few quick things." And he said: "OK." He lets me carry the groceries now too because walking, breathing and carrying are too much for him most days.

He called me at work 6 times yesterday during his shopping spree. I couldn't tell if it was for reassurance or out of delight that he could do it. "The store is vast."

So proud he was, smiling when I got home. He had been of value, made a contribution, evidence of being still here, still an integral and necessary player.

"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.

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."

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."

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.