Saturday, September 26, 2015

For Better or Worse, In Sickness and in Health

A late posting from October 2, 2015-These are the promises we make. Intellectually they are easy promises to make. We usually think they are hard promises at the time the vows are spoken. We are self congratulatory and so committed amidst flowers, music, friends and cake. Living them imperfectly, trying again when I fall short, no longer theoretical. Words cannot capture the attachment made to the spouse who both infuriates and delights you through the years. The pain felt as I watch him head straight into the storm of illness and treatments and mortality with book in hand. He always has a book or two with him in which he can duck away for a moment of peace.

A week ago today  I was leaving the ICU, taking the C elevator down to the lobby and then to the gold valet and back to the hotel. MM is feeling good, quiet, a little more tentative.

We made our return trip to Tampa last Wednesday, left home at 6 a.m., returned home at 8 p.m. Trusty Rose, MK, Kathy, and Sara wove together the daily routine for iMac and Butter. It was a peaceful trip for us. We were not afraid. We expected no new revelations today. Waiting in the Oncology exam room MM asked, "Why do you think Dr. E wouldn't comment on the other four tumors?" I had wondered when Melanoma Man would notice. I said "I think they pose no immediate danger to you. It is too soon to address them. I think he needs to see if they have stablized in size on the next MRI or if they will grow."

At home this weekend there is that desire to forget the brain tumors and to return to a time before tumors. I find I am a little more capable of achieving peace during the in between times. This is good, because there is no way my mind, spirit or body could sustain the level of fear, tension, anger and sadness that mix together and periodically fill my mind. I wonder if it is the meditation, your prayers, the yoga. It does not matter. I am grateful. 

Thursday, September 24, 2015

Part 1 done

Surgery done, surgeon happy. MM is being extubated now. I have the familiar feeling of exhaustion, the kind you get being awake more than 20 hours during international travel with a asthmatic toddler on your shoulder. I'll go back to recovery in a few minutes to see Melanoma Man. After a bit he will head up to the Neuro ICU.

Wednesday, September 23, 2015

Trampolines in the waiting room

Last Saturday I had the chance to jump on a mini trampoline. Now I think I'm in love and I must have one. Right now, in fact, in this MRI waiting room. A mini trampoline would be just the thing to while away the time. This is the fourth waiting room of the day. Maybe each one should have a different activity, coloring books in one, crochet in another? MM's spirits remain high, though I saw some glints of alarm when he heard mention of the neuro intensive care unit. Then again when he realized he had understated the usual hospital stay by 24 hours. I made three days of arrangements for kids. A few quick texts and friends have stepped in to cover day 4. Then again some concern when the nurse said this: No Driving for two weeks and then only if cleared by Neurosurgeon. Looks like I need to do a little more planning and arranging. MRI done tonight at 6:45 pm, then on to Chipotle for dinner. It was my first time at Chipotle and it was a good choice, not fast food, not restaurant food, but real food. Next stop was CVS. Snickers for Melanoma Man, York peppermint pattie for me. I was feeling nostalgic for the 70's and the "get the sensation" television ads. I am also highly suggestible and there they were at the checkout beckoning. 

Call from home-raining cats and dogs, looks like the "new" drainage system put in last week by the land lady won't handle the rain. It's up to the sandbags. I like to keep some sandbags on the patio, you know, just in case. Unfortunately the drainage guy unhooked our fabulous duck taped Jeri rigged pump when he was digging his fancy dysfunctional trench. Now iMac and butter are trying to reinstate our pump system to it's former glory in the dark, in the rain. I suppose this is some kind of learning opportunity? Perhaps the lesson for me is don't forget to hook up the pump before you leave home. Or maybe the lesson is who cares about a flooded kitchen, dining room, and two bedrooms, or perhaps the lesson is " whew, glad we are renting."

Sunday, September 6, 2015

Circling the airport

That's what we do to bide our time as we await LITT(laser interstitial thermal therapy). I may have used this analogy before, but forgive me because I can never go back to read what I have written in the past. Beverly called a week after the initial diagnosis having gotten the stars and planets aligned, which is no small feat. I thought we had agreed that we would take the first available time slot. I was at work when Beverly called. She offered him the 10th and then the 14th. He  said no to both because he will be too busy with the libray booksale.

On  the phone after 5 pm he told me that he had refused the first two dates and had accepted the 24th. I said "No, just NO. This is about priorities. You call Beverly back and ask for the first date." My after thought was that perhaps he is tired and really just wants to stop treatment. And then, why did I even say that? He cannot hear me. I had calmed down significantly by the time I got home. I asked MM of maybe he was ready to stop. He looked alarmed and said No, emphatically no.

The next day he was assigned a new surgery date, September 24. Two days later, another call from Beverly. The radiologist isn't available on the 24th. At this point no surgery date. This week he forgot Butter's math tutoring and imac's flute lesson. Butter & iMac reminded him. He left the stove on twice. Beverly called two days ago and confirmed surgery for the 24th. Yesterday he told me he's having nausea and sometimes his right foot drags. I noticed his handwriting change last week. This morning he asked me how many brain tumors he has had in total. Eleven total, 5 right now. On the way to church I decide I am going to be cheerful. I will play tricks on myself. I'll put on makeup and church clothes and act as if. Home from church I slip into a cleaning frenzy without realizing it. In so doing, as is often the case, I seem to have created a bit of chlorine gas. There was a touch of bleach in the rinse water for dishes. Then I wiped out the sink with a Seventh generation disinfecting wipe, immediately recognized that familiar smell and feeling. Opened all the doors, turned on the fan, ran the water in the sink, took the kids outside. MM said he didn't smell it, so he wasn't getting up form the living room sofa. It was primarily over the kitchen sink, so I didn't fret about MM. Mostly I was disgusted with myself. I couldn't fool me anymore with fake cheerfulness, how would I fool them into not seeing the  fear.