Friday, June 28, 2013

Melanoma Man vs. Young Healthy Radiation Oncologist

And the winner is... Young Healthy radiation oncologist!!!!! He was a long shot to win, but he did it. I don't really know if the doc was young except from his pic on the website. I didn't go to this appointment, attempted, but was quickly overruled by the MM. Gotta pick my battles. Stereotactic brain radiation has been scheduled for July 3rd. And I'm driving as mandated by radiation oncologist. I love it when people with authority back up my decisions. I think "well I am a genius after all. Didn't go to Princeton, but what I've got is worth more."  I like to tease Melanoma Man about his fancy Princeton education.

The house has been quiet since Sunday when iMac left for the church mission trip. Last Saturday was imac's 13th birthday. He wanted to go to Aquatica waterpark in Orlando. This is my second favorite waterpark. The first being Wild Wadi in Dubai. It was the first time iMac and Butter have been there without Melanoma Man. We brought an extra set of parents and one extra kid to pad things out a bit. Melanoma Man was there for the birthday eve dinner, birthday breakfast and present opening. After breakfast he drove home so he and ChaCha could watch golf on tv, safe from the sun. I obsessively applied sunscreen to the kiddos every 90 minutes. I so wanted to whisper in the ears of the sleeping sunbathers, "Mela-noH-maH, it's coming to get you." Most folks wouldn't consider that friendly, so I refrained. These days when I walk on the beach I have an urge to throw large towels over people, like I'm some kind of new superhero coming to their rescue.

So I'm getting ready for my VAY CAY TION. Lots of people have said things today like: "Have a great vacation!" and "Enjoy your time off!" I'm driving the kids to stay with Uncle Wayne while Melanoma Man and I return to Tampa for his brain radiation. Have a great vacation? Really?

Tuesday, June 25, 2013

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.

Friday, June 14, 2013

Bad Karma

I wonder if there is a weekly quota on bad karma? If so I may have met my quota just now. Whoo Hooooo! The good news is that I am fine. Bad news, just got rear ended in a torrential downpour. The offender appears to have continued on their merry way without so much as a "Hello, how do you do? Here's my contact information and my car insurance." It really would have been thoughtful, don't you think?

Read this

A beautiful post by Patient #1's wife, Jen, on being a caregiver

Caregiving by Jen, wife of Patient #1

Wednesday, June 12, 2013

Brain Mets

That's cancer talk for "the melanoma has metastasized to the brain." I was expecting something "not great" today, but yet unprepared for Melanoma Man to have 2 new brain tumors that weren't there just 8 weeks ago.

I started the day sitting by the hotel pool with Butter and imac, stopped in the lobby for towels and overheard the receptionist say "Ninety percent of our business comes from Moffitt Cancer Center." More evidence poolside where I chatted with 2 sixty something women, both with long grey hair and glasses. I could just picture them at a Grateful Dead concert for some reason. One there with her husband, a bone marrow transplant recipient, the other there by herself for radiation of what she simply called "my tumor." She looked lonely and she had no teeth. I kept fighting with myself, should I engage in conversation or pretend I am wearing my invisibility cloak? The answer was clear. I asked her where she was from, when she was diagnosed with cancer. It was good that I did. She had been sick for awhile, but no health insurance. She had a job, but when her son got sent to jail the household income was cut in half. She couldn't afford to pay her car note or utilities on just her salary alone. Her car got repossessed. She couldn't get to work. She got fired. A neighbor took her in. The neighbor could tell she was in pain, that something was wrong. The neighbor took her to the health department. They said they couldn't do anything. The neighbor took her to a rural health clinic run by a charitable organization. Two weeks later Moffitt accepted her as a patient, knowing she has no way to pay them. The neighbor, Wow, that was just what I needed to hear. She enjoyed watching Butter and imac play in the pool and told me that she has an eleven year old granddaughter. We wished each other well.

An hour later Melanoma Man, Butter, imac and I were at the CRU(Clinical Research Unit). Then to Starbucks in the lobby until time to see The Weber in the Cutaneous Clinic. That's what Melanoma Man calls his oncologist, Dr. Weber. A minute before we got called back Melanoma Man leaned over and asked "What if the news is bad, what about the boys?" I had thought about micromanaging this issue, but realized that these oncology folks know how to handle this. We were escorted to an exam room, someone brought a gown in, Dr.Weber peeked his head in, then Jan appeared. "Dr. Weber has some things to talk to you about so I'll take the boys back to the waiting room."

Melanoma Man looked shocked, as if the possibility of bad news had been very very remote. He was speechless for a moment. The Weber came in and said: "Well the news is not horrible, but it's not good." He laid out a plan for getting a more detailed MRI and then a stereotactic radiation. 

I went out to the waiting room while Melanoma Man scheduled the MRI. I thought for sure Butter and imac would ask "Is everything ok? How's Dad?" Not a peep out of either of them. So we have a little time to digest the information before we tell the boys.

Sunday, June 9, 2013


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.