Friday, February 26, 2016

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.

Wednesday, February 24, 2016

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.


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.

Thursday, February 18, 2016

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.