An Eventful Friday

I got to work at 7:45 a.m. Around 8:45 my phone started making a strange sound, like an alarm, rather than a ring. I pulled it out of my pocket. It was Melanoma Man. I answered. He was crying. He said he needed me to come home because he was having a brain freeze. I got my things together, saw my boss in the hallway, who said simply "Go, explain later." She could tell it was emergent. On my way to the car I called Sara G,, hoping she would be at home. She was home and at the ready. I was twenty five miles from home, worrying that Melanoma Man might be having a stroke. My phone rang again. I expected it to be Sara G or Melanoma Man. Instead it was Azalealand, the nursing home my Mom lives in two and a half hours away. They had not been able to reach my sister and needed to know if we wanted mom to go to the hospital. Mom's oxygen saturation had dipped into the low 70s and they weren't able to get it up by administering a higher volume of oxygen. I hit the pause button to call Johnny Reb. I didn't want to be a consensus of 1. We agreed, no intervention. I spoke with the social workers. A few minutes later sister called. I relayed my thoughts, my conversation with Johnny Reb and she was in agreement. I think it is hardest for sister and I am not sure why. For me, as a nurse the hardest part is seeing people trapped in bodies and or minds that they cannot maneuver the way they want. Maybe she feels it is her responsibility to keep Mom alive. I felt it was mine for years until the survival of my own family took over.

I arrived home to find MM chatting in the kitchen with Sara G. He explained that he had had a 15-30 minute episode of word scramble, unable to access and produce the words needed to express the thoughts. It happened while he was driving imac to school. He was worried that imac would be scared. Sara G drove to school on my behalf to reassure imac.  I remembered my days as a Candystriper at Georgetown University Hospital. I was usually assigned to the Neurology floor. They needed a lot of hands on help there, with bathing and dressing and feeding. I remember a young attorney in her late 30's, early 40's at most, with short hair, Isabella Rosselini style, pretty. She had a stroke, The nurses felt she was lonely. She couldn't speak, but she could understand. She had a brightness in her eyes that followed your words. They sent me to keep her company, to tell her stories. So I sat with her and told her stories from my 14 years on earth. She cried. I think because she so wanted to speak.

Melanoma Man began cancelling volunteer commitments while I left messages for the Neurosurgery Team at Moffitt. Jen and Ruth and Robin called back, which was AWESOME. They collected information, relayed it back to Dr. Etame, called in prescriptions for steroids to reduce brain swelling and anti seizure drugs. They advised us of next week's schedule: pre op Wednesday, craniotomy Thursday. Tonight we will tell Butter. imac will be home late, playing flute in his high school band tonight for the Music Performance Assessment. We'll tell imac in the morning. I am wishing I could be in 3 places at once, Savannah with my Mom and sister today, home with my boys, and at Moffitt in Tampa next week.

Today Part 2

I was in the parking lot at Al's Pizza. Butter and iMac had just returned to the car with a medium half cheese half pepperoni pizza. It was 4:30. Melanoma Man's appointment with Dr. Etame was scheduled at 2:15. When I hadn't heard by 3 I knew the news was bad. My phone rang. It was MM. He asked "Are you alone? I mean with the kids?" I wished I was alone in France with Jason Statham from The Transporter, but no such luck. (We watched Transporter 1,2, and 3 last weekend.)Dr.Etame said that September's tumor has doubled in size and one of the others has grown too. He is offering surgery, but neither is eligible for laser surgery, more of the traditional craniotomy, removing a 4 cm panel of skull in one region and another panel for the second tumor to access the brain and remove the tumors. That's all MM said. He was on the way to his next appointment to see Melissa at the new Moffitt McKinley building. I got off the phone. Driving home the boys chattered about Minecraft and asked not one question. At home they gobbled their pizza. I had bran flakes. iMac and I were off to the college fair. It was a madhouse. My heart wasn't in it. Neither was imac's but for different reasons. I haven't told the boys yet, which is fine since I have no answers and no plan. Cha has jumped into bed with me and in typical cat fashion tried to prevent me from typing. MM should be home in the next hour or so.

Today

A day like any other, but not really. I had planned to accompany Melanoma Man to Moffitt today, then I looked at the calendar to see all the activities Melanoma Man would ordinarily take care of and decided I had better man the fort. We were both up at 5 a.m. I slept the night straight through without awakening and worrying. We sat on the sofa drinking coffee, watching the weather channel which predicts severe winds and rain today. MM was showered and out the door by 6:15. I started waking Butter at 6, purposely making a racket in the kitchen. Wake up can sometimes be turbulent, but today it is not. I wake imac at 6:30. Butter is out the door at 7. I deliver imac to driver's ed at 7:55 a.m. Then I return home to do dishes, start a load of laundry. I do errands on my way to my routine mammogram. Figured I may as well get some of my appointments taken care of on this day off. I receive my first text of the day from MM around 10:20. He has arrived at Moffitt and is getting his wristband.

On the way home I stop at Rack Room Shoes. I am searching for a pair of black dress shoes that will fit Butter for the band competition on Friday. Another text alert received "IV access," then "CT scans done." MM will have an MRI of his brain at 12:30, then lunch in the hospital cafeteria. He's not allowed to eat before all of his scans, nothing except Banana flavored contrast medium. His appointment with Dr. Etame is at 2:15, then an appointment with Melissa in the Cutaneous Clinic at 3:15. They are outgrowing their buildings, so the Cutaneous Clinic has moved to a new building, a 10 minute drive from Neuro-oncology. Dr. Etame is usually running late, always for good reason, viewing the MRI, consulting with the radiologist before meeting with Melanoma Man. It sounds reasonable to have an MRI at 12:30 and a Neuro appointment at 2:15 pm. Usually it's not enough time to get the radiologist's reading, so things run late.

Meanwhile I am home, washing sheets, putting things away, waiting. I'll pick Butter up from Youth group at 3 and hope the shoes fit, drop him at the library for Algebra tutoring, meet imac's bus, take imac to flute, pick Butter up. Then home for dinner, which I have yet to plan. I'll be off again by 5 with imac, to the college fair at the high school. Somewhere in the midst of it all I will get news by text from Melanoma Man, good or bad.

Getting My Head on Straight

Since last summer I have been meditating and doing yoga, trying to reach some kind of solid ground or equilibrium which I can return to after a day's work. It has been helpful, but sometimes desperate. The episodes of tension headaches(which look a lot like a migraine to an outsider) had increased from my usual average of once a year to one every three weeks. Sleep had become a luxury at this point. Although tired I was spending hours in bed not sleeping each night. I stopped reading books, checking email, making things. There was just enough energy for me to ration out for my work day, but not enough left over for life. Finally I came to the conclusion that my attempts at equilibrium weren't working. This is not really a new story for me, but one that has played out over and over again in my life as far back as I can remember, which is age 3. It is no one's fault. Sometimes it comes out of nowhere. Sometimes it is triggered by a life event. I have taken it to the professionals many times, which has been difficult because it makes me feel like I haven't tried hard enough.

So a few weeks ago I found myself on the couch again, in Virginia's office. Virginia is a psychiatric Nurse Praactitioner, who came highly recommended by a psychologist I have seen for counseling. In the small world category, we both attended nursing school in Washington DC. We had some shared hospital experiences. Today she is training a student in the nurse practitioner program at University of Florida. The student asks all the questions, takes the medical and psychiatric history. It is painful and a bit awkward because it is an art the student has not yet mastered. That is why she is here, to learn this art. At the end of our hour we decide to discontinue the Prozac, which I have taken daily for 24 years, with 3 unsuccessful Prozac holidays during which I tried to go it alone. We decide on Cymbalta. So I am 4 weeks in to the Cymbalta. I am sleeping. I wake up in the morning feeling pretty good. There is no longer that feeling of dread when morning arrives.  I am reading Tattoos on the Heart by Gregory Boyle. This time I think I will finish it before the library due date.

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.