Coup in the Kitchen

The coup began last Sunday afternoon. Melanoma Man saw me looking through my notebook.He asked if I was menu planning for the week. I was, as I have been for the last 7 weeks or so. We have a zillion cookbooks, but the things I really cook are in the notebook. MM uses cookbooks when he cooks. He's all Jacques Pepin and Julia Child. Hard to believe he was the king of carry out and didn't know how to cook just a year or two before we met. 

MM got out his menu planning paper and sat down with me to plan. I took an inventory of our raw ingredients and then just let him run with it. Monday when I got home there was dinner, and Tuesday too, leftovers on Wednesday, and Thursday. He grocery shopped, little mini trips, rather than one big trip. I think he was trying to show me that I could go to Leslie's funeral, that he could man the fort. 

I coached the boys on how to be helpful in my absence. Butter is usually a decent helper unless he is starving or experiencing the delightful mood swings of adolescence, which occur at least twice daily. iMac protests a bit about doing dishes, but I know he is bluffing. MM had had his best week yet since brain surgery, so while some days I have felt worried just leaving to go to work, this week has been almost worry free. 

Can't sleep

I can't sleep. My friend Leslie always recommended keeping a pad of paper and a pen on your bedside table to jot down the thoughts that kept you wake. It is Leslie who wakes me . We attended ninth through twelfth grade as two members of the tiny class of '84. I think there were thirty two of us in all. We attended the same college freshman year and were roommates. I left after the first semester. I was a bridesmaid in her wedding. I was a visitor in the hospital after her third open heart surgery. She was simply resilient. By 23 she had already lost her Mom to a massive heart attack. By 28 she had divorced her first husband, which was a relief to us all. She also underwent her third open heart surgery at 28. I think the surgeon was Dr. Weintraub, but maybe he was her cardiologist, not her cardiac surgeon? I do remember going with her to see Dr. Weintraub. Leslie was born with a not quite right heart. She had her first open heart surgery at age 5, at Mayo in Rochester. Surgery # 2 & 3 at Georgetown at ages 14 and 28. Two weeks ago she posted that she had been having symptoms since summer that caused her concern. She saw her cardiologist once, then twice. After the second visit he referred her to a cardiac surgeon at Hopkins. She was scheduled for a valve replacement at Hopkins on December 18th. But alas she didn't make it. I couldn't really tell from her post two weeks ago how dire the situation was, figuring she's a pro at this. I remember visiting her at Georgetown in the cardiac care unit after surgery #3, visitation was limited. I was waiting for my turn and out walked Wayne, class of '83. I remember Leslie telling me that Wayne had come to see her daily at the hospital when she underwent her second surgery at age 14. I saw Wayne come out of that unit and I thought it's a done deal. Those two are getting married. It was my turn to visit now. She was a little loopy post op and as white as Snow White. Even though I am a nurse I still have the hardest time seeing "my" people in a hospital bed. As I was leaving her room I kissed her on the forehead. She replied "thanks mom." That's who she needed at that moment in time. I was glad to play the part. 

She did marry Wayne. They adopted two children. We kept up on Facebook mostly, catching up on what the kiddos were up to. Her son, K, attended Philmont Scout Ranch in New Mexico this past summer one week before my son. Later in the summer she messaged me that K was working as a camp counselor at my friend Niki's family owned camp. Niki and I have known each other since age 3 and 5. Small world.

Just two weeks ago Leslie posted on Facebook that she was in right sided heart failure and had scheduled her fourth open heart surgery for another valve replacement on December 18. I sent her a card with a prayer card and a poem. I had no doubt that her resilience would bring her through this. Yesterday I learned that  she is the first of our class of '84 to depart this earth. 

Laundry Thief Steals Dinner

Since the brain surgery, I have encroached upon another of Melanoma Man's household responsibilities, which is shopping for and cooking dinner. MM has always enjoyed cooking and has had every intention of making dinner, but more often than not it seems to be too much for him. I accidentally, on purpose stop by the grocery store on my way home, just in case. He accepts this with a grace I haven't seen before. I pre-wash the dishes and let him know I will do dishes if he isn't up to it. About half the time he is up for doing dishes. 

The episodes of achiness, malaise, cough, fever and chills have visited more frequently and stayed longer. They respond nicely to the five day steroid tapers and then a few days later the symptoms are back. MM's pullmonologist put it in perspective this week when he said over the phone: "Hey I am just thrilled to be talking to you on the phone. My other patient's with lung disease as severe as yours are either dead, or can't get out of bed." MM was a little shocked by this, but I wasn't. My nurse friend Sara says "sheer will, that's what he's made of." 

We made the trip to Tampa and back this week. I took two days off from work so I could go with him. He feigned protest, but it wasn't convincing. We arrived Tuesday at 3:30, spent a couple of hours getting labs, CTscans, brain MRI. Dinner, hotel, bed. I kept trying to let go of outcomes but it didn't work. The tension headache woke me at 3, vomiting followed at 5. I felt better by 7. We left the hotel at  8:30. We saw Dr. E the neurosurgeon first. He was serious, but not dire. He printed pictures of MM's brain for us, showing us the shrinkage and good response of the parietal tumor. He showed us the frontal lobe tumor which has grown 1 mm, not too much, still watch and wait. He scheduled MM for repeat MRI and office visit in 3 months. MM said "You are going to be here in 3 months, right? Dr. E replied," I'm taking it one day at a time." I took that to mean he's being courted by other institutions. We just get so attached, even if they don't. It was hard to lose Dr. Rau and Dr. Weber to the next phases of their careers, so my fingers are crossed that Dr. E will stick it out.

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. 

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.

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."

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.