Monday, November 23, 2015

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. 

Monday, November 16, 2015

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.