Saturday, April 27, 2013

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.

Wednesday, April 17, 2013

Thank You

Melanoma Man back early tonight from Tampa, with more good news. None of the tumors have increased in size, some too small to measure. Dr. W. tells us that June through December will be the time to watch for the Melanoma to fight back. We remember back to November when Dr. W. told us of "the two guys" still here 3 years into their Vemurafenib treatment.

Tuesday, April 16, 2013

The night before Moffitt and all through the house...

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.

Tuesday, April 9, 2013

Snacks, and Shoes, and Legos! Oh my.

Sometimes it's the little things that just make my week. This week the little things are snacks, shoes and Legos. This weekend, after my dramatic realization that the Legos are overtaking my home and life, I told imac and Butter that we would make Lego display cases for their rooms. After they cleaned and vacuumed their rooms I took them to Home Depot and they put together these primitive cinder block bookcases for about 20 bucks each, or half the cost of a Lego kit. It was key that they do their own vacuuming, ensuring that when they heard the tell tale clickity clack of a lego piece getting sucked up into the vacuum, it would be a tragedy of their own creation. They were extra careful to prep the area on hands and knees ahead of vacuuming. "Oh well, too bad," I could say, but alas no clickity clack. They carried all the cinder blocks and boards into the house and assembled their shelves. I wished I had more manual labor for them to do. I repaired a lot of split rail fences, cleaned a lot of stalls and hooves as a kid and sometimes I wish I had more of that for them to do around here in sunny suburban Florida. Which reminds me, how did I end up here again?

My work shoes have been getting me down lately, so I replaced them and I much happier every time I look at my feet.

Finally snacks, the dreaded snack problem. Melanoma Man complains to me for the umpteenth time tonight that Butter does NOT like the after school snack Melanoma Man brings in the car each day.It is a different snack each day. I explain to Melanoma Man for the billionth time that it is NOT about the snack. It's about autonomy, the choosing, the  independence, being included. I offer my usual suggestion: "Why don't you have the boys pack their own snacks in the morning before they leave for school?" I am met with stone cold silence, the putting on of reading glasses and raising of book, as if to say "You are not here Laundry Thief. I cannot see you and I cannot hear you. The End." It's a simple solution and it will work, unless your goal is to compete with your 10 year old for your wife's attention. I'm not sure what the goal is, so I filled a basket with snacks, put it by the front door and asked the boys to pick one in the morning and put it in the car. Ta Da!

These small, tiny, minute and irrelevant things made my week

Friday, April 5, 2013

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.

Tuesday, April 2, 2013

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.