Risk

I don't think of myself as much of a risk taker. The biggest risks for me were getting married and having children. I remember me at 8 1/2 months pregnant thinking I'd rather not go through with it, knowing it was too late, knowing how ridiculous I was being. At the same time being sure that plenty of women before me had wanted to turn back too. It just seemed like too much risk, to love yet another person, too too much.

I was not sure how to turn myself into the type of mother who lives in a Pottery Barn catalog. The catalogs kept coming, Pottery Barn and Pottery Barn Kids. Crate and Barrel too. After awhile I stopped looking, heaving them to the recycle bin without so much as turning back the cover. The catalogs were full of safety and certainty and served only to remind me of the risks I was taking with these people who were becoming my family.

Last week thinking about all the changes going on at work and thinking about Girl number three, I thought to myself " I can't do this anymore."

Girl Number three is dying, the third in a series of young women that I have Case Managed. Although it doesn't feel like case management. It feels like my title should be Suicide Witness. All the tools of health laid out before them: pill boxes, free medications that work, check lists, encouraging phone calls, physicians, social workers, pharmacists, and psychologists and nurse.Yet they still march smartly toward death.

A text arrived on my phone from V, the other lucky case manager in my clinic. V manages the adults. I manage the children. If they are closing in on death I won't let them transfer from the pediatric to the adult side of the clinic even if they are 20 years old. I just think it's best to stick by them. The text from V is a job description. She knows I've got to get out. V calls my desk phone to see if I have filled out the online application. I edit my resume and have V and Dr. Ann look it over. Application submitted. Two days later a call comes to set up an interview. Wednesday morning I spent two and a half hours meeting with the folks at my prospective employer. There are windows. The staff bathrooms are clean. The commute is a little shorter. The patients aren't terminal. They are simply allergic. It feels like where I am supposed to be. I'm thinking about what to wear if I get a second interview when my phone rings. It's the offer, sooner than I expected and $5 more per hour than my current salary. I am happy, sad, exhausted, elated. I'm getting out. I am leaving people I love behind. I am choosing a job with potential, that will be infinitely better for me and the kiddos. I worry too about Melanoma Man and how long he can keep up the after school activities, homework, dinner prep. Whether this is a risk I should be taking at this time. V sends another text to me on interview day reminding me that there is no right time. So I stop waiting for all the planets to align just right and I accept the job.

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.

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.

Strangers for Dinner

I should have been worried about cleaning the house on Monday night. Melanoma Man invited the entire Cub Scout den, their parents and siblings to our house for dinner this past Tuesday night. I guess this is part of his Carpe Diem. I seriously considered having my boss drum up some kind of work crisis. Since I work in a clinic which has a closing time rather than on a hospital floor, it would be difficult to finagle such a crisis. Tuesday is a weeknight for God's sake. No one invites this many people over on a week night when the only able bodied person in the household is downtown until 5. Melanoma Man has been issuing such invitations without consulting with me since we were married and it has been driving me crazy ever since. He claims I have a bad attitude. This handsome label is applied to me anytime my opinions or views are not aligned with his, which is more than 50% of the time. Most of the time I keep my opinions to myself, having given up trying to be heard years ago. I spend 40 plus hours a week tending to people, then who knows how many more hours on my own 3 people and cat at home. NO, I do not find it relaxing, interesting or entertaining to have a houseful of people already waiting for me when I get home. I am an INTROVERT underneath it all and this type of occasion is not my forte.

I showed up. It was ok, just as my advisory committee at work(Cici and Nancie) had promised. Most folks don't know about Melanoma Man's melanoma or alpha 1 anti-trypsin deficiency and he doesn't want them to know. That leaves me to pick up the slack so he can maintain the illusion. But this time I had allies, a select few other Cub Scout parents with whom Melanoma Man has shared his secret medical battles. The six of them acted as set up crew, cook, referee, and clean up committee with no questions asked. So it was that I didn't see all the strangers, all the kids and parents that I don't know. I only saw Charles and Bob and Oona and Denise and Rob and Maria.There was a reason for me to show up, to see these six and to see that I am not alone.

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.

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.

"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.

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."

Today is the day

Today is the day. I am the Laundry Thief and my husband,  Melanoma Man is four hours away at the Cancer Center. He had his brain MRI and his chest and abdomen CT scans with contrast today. Tomorrow the news, is the experiment working, cancer shrinking, cancer growing? It can be a lonely business. We talked on the phone tonight. He is in the  Residence Inn with a fever. He is alone. I am home with oldest son and youngest son and cat and job. So much of this we have to do on our own. I suppose it gets us used to being separate again, just Laundry Thief and just Melanoma Man, rather than Husband and Wife as we have been for the last 15 years. 

A newly married Muslim woman at work asked me for marriage advice last week. We'd only just met and she seems to be about 25 years old so I couldn't tell her too much. Coming from a different culture I wasn't sure how to advise so I said:  1) Choose to be happy rather than right. If your husband can believe that the good ideas are his, even though they were yours, things will go so much smoother. 2) Have lots of girlfriends. You will need them.

 I didn't say: have sex 3 times a week regardless. It will be the glue that keeps you together when difficult times come and they will come. I didn't tell her about the tests: the death of parents, the birth of children, the evacuation from war, the loss of job, the loss of health, the loss of everything that used to define you. It's too much to tell. 

A new me emerges. She was in there all along. The tests bring her out. I want to tuck her in under the comforter and fix her tea and keep her safe, but I  cannot. I  have to let her out into the world so that others may see her live.