Time, stark, bright, white, fast

March 11: I left home more than a day ago, with Melanoma Man heading for the local ER. The family friend, C, who happens to be a physician stopped by for a visit and realized what I too knew, that MM was deteriorating. C was clear, concise, direct. She asked if she should leave, if she had said too much. I said No, he needs to hear it and not from me. We had some phone calls with Moffitt on Monday and Tuesday. There was talk of the right frontal lobe tumor being responsible for his new symptoms, facial paralysis, difficulty swallowing and difficulty with the fingers in his left hand, MM having faith in his Moffitt team didn't want to involve any other medical players in his care. He didn't want anyone else's advice, only Moffitt's and even that might not have been enough. He asked me to call his internist which I did, knowing I would get no useful response. They have no urgent appointments available with any provider. They can take a message. I say no thank you, knowing how long it will take for the message to get to someone with the skills and education to understand it. I am not too disappointed because I know this is not the help he needs. MM did hear us, the friend and I. He gave his explanation of why he didn't need to go to the hospital. After a few hours of mulling it over he said he was ready to go. C called her friend A at the hospital. A met us in the emergency room, ordered the head CT, had the radiologist and neurosurgeon on standby to review. They reviewed the CT and ordered an MRI. The frontal lobe tumor had doubled in size since 2/24/16 and the amount of swelling was just wow, so much more than the MRI I looked at with Dr. Etame just 6 days ago. All this with no headache. MM looked frail and seemed sad all week. It is hard to tell what portion of this is due to being worn out by fighting and what portion of his mood is injury to his frontal lobe.

March 11, at 8 pm, 27 hours after we arrived at the hospital MM was wheeled into the operating room in our home town, far from Moffitt, but in good hands. The surgeon is the father of one of imac's classmates. In years past we stood on the soccer field sidelines watching iMac and his son play soccer. I am relieved by the quiet of the surgical waiting room. Everyone has gone home. At 9:45 pm Dr. H came in. The tumor was out. 

On the fear of crying

Crying gives me a headache, so I haven't cried for awhile. The headache came anyway, last night in the Marriott, lying in bed next to Melanoma Man. Both of us not sleeping. We are supposed to be joyous and elated and we will be, but now we are just exhausted and disoriented. As if we have been to some far away planet and things changed here on earth while we were gone. We'll get home today to see iMac, Uncool Wayne, and Cha. We'll see Butter tomorrow when he returns from camping. I'm trying not to think about the upcoming week, but I have to. There is work. There is the job I didn't apply for last week because I couldn't get my head in the game. And there is driving. Melanoma Man is banned from driving, so there are a lot of places I need to get the kiddos to while I am at work.

The brothers in-law

My Mom passed away last Friday night with my sister at her side. I have received emails from all of the Anderson cousins with their memories of Mom from younger, happier days. I will clear out the memories of mom in the 17 years since Dad died and fill in the space with these stories and more of my own. Dad would have turned 88 this coming Sunday. I think they will celebrate together. The position at work that I have been waiting for just opened up. I am supposed to be applying online today or yesterday or the day before. I am at Moffitt Cancer Center in the Pre Anesthesia Testing waiting room with Melanoma Man. I can't get hooked up to wifi so the job application will have to wait until tonight after a day of waiting rooms. The brothers-in-law arrived yesterday. D, a flurry of activity, making biscuits, cleaning my kitchen, fixing my broken front door. W, who happens to be both nurse and lawyer, practicing with the Epi pen trainer in case Butter accidentally ingests pomegranates or pine nuts. Melanoma Man leaves a typed treatise on the kid's schedules. I leave a handwritten one. I purchased a tracfone for W, who will stay the whole time. W has a house phone back in North Carolina, but doesn't believe in cell phones. Since we have no landline at home it is essential. The kids will have to show him how to use it. 

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.