Christmas cards

What to say? I told MM I wasn't sending any this year. "Oh, what about Mrs., and Diane, and your Mom, and Lisa?" he said. OK well a few. There is always the question of what to say. "Comfort and Joy to you in the New Year!" MM said. Sounds pretty good. My shortlist knows what the year has been. I needn't say more. I look through the basket of cards received, many from from college or law school friends of MM with stories of successful, beautiful children and grandchildren. I see signs of achievement, wealth and self promotion. I know it is there, the real life behind the picture, but I can't see it.

We are alive and we are here and it is hard and we get up again and take care of each other so that perhaps we will be alive and here and together again tomorrow. Tonight we listened as MM read a short story to us, The H Street Sledding Record by Ron Carlson.

Tomorrow I hope we can watch the Polar Express. Most of all I hope the bell still rings for me.

About last night...

Thursday night December 18, we went to bed early for most people, the usual for us, 9 o'clock. It was supposed to be another night before Moffitt for us. I was awakened at 10:15 p.m. by Melanoma Man calling my name. I looked over to his side of the bed, but he wasn't there. He called again. I sat up. He was standing by the sink in front of the closet with a towel in his hand. "Will you come look at this? Is it my port?"

I could see that his shirt was soaked in blood and so was the towel, but I didn't have my glasses on so I couldn't tell if it was the port. He had been at the dermatologist earlier in the day. She biopsied a mole near his port. I put my glasses on and was so relieved that the blood wasn't coming from the port. I am not sure why that seemed such good news to me, especially given the rate at which he was bleeding, but it did seem like good news. He blew his nose. No blood from his nose. More good news. My brain processed, It is not systemic bleeding. It is not disseminating intravascular clotting. More likely it is the collision of Fragmin(his anti-coagulant), his biopsy, and possibly new blood vessels feeding a mole that was likely another melanoma. I put my left hand over the towel on his chest and my right hand on his back, like a sandwich and walked him back to the bed. We sat down on the bed. I pressed my hands together with him in between them, as hard as I could. Looking down at the bed, a pool of blood. I realized he had likely been bleeding for a long time before it woke him. He said he felt a tug on his stitches when he turned on his side, just before he fell asleep. I could smell the blood. He asked me if it was time to go to the ER. I said No, let's do 15 minutes of compression and then if it works we will do it for 15 more minutes. I started seeing stars and feeling nauseous. I asked Melanoma Man to hold pressure on his chest. I slid to the floor and broke out into a sweat, apologizing.

After a few minutes I stood up and walked to the hall closet for gauze and tape. I made another bandage to secure over the existing one. By eleven we both felt confident that it had stopped and would stay stopped. I asked him not to go to Tampa, but to go back to see his dermatologist here to have the wound re sutured and to get a new pressure bandage. He had already decided that.

He asked if he should strip the bed before we returned to sleep. I said No, these are our only sheets. I laid towels over the bloody sheets. Up at 5, we stripped the bed and I began rinsing the blood out with cold water. So much blood.MM seemed to be feeling well. I asked him to take it easy today, to drink a lot of fluids to restore what was lost.

By 9:15 this morning he had returned tot the house, having been sutured and bandaged with an ace bandage encircling his chest. He left a message for Jennifer at Moffitt: "I'm not going to be able to make it to Tampa today due to waking up in a pool of blood."

"You did not leave that message!" I said later in the day when he told me about it. "She knows I'm fine or I wouldn't be able to leave the message," he said, "Plus she was sure to call me back quickly with  a message like that."

Indeed.

Radiation

We left early Wednesday morning December 3rd, right after imac got on the bus for school. imac had been in tears about grades that are suffering. Suffering due in most part to completed assignments that lie at the bottom of the backpack or on the kitchen island or in the locker. I hated to leave him at the bus stop so discouraged. I wore my jingle bell necklace, a single silver ball on a silver chain, to remind myself of the holidays. Melanoma Man and I arrived in Tampa 12:15ish, in time to have a leisurely lunch at Jason's deli. It was packed full of USF students, faculty, cops, grandparents with grandchildren, and medical types. 

Once at Moffitt we got called back to meet with one of the Jennifers, his usual radiation oncology nurse. He has two Jennifers in medical oncology as well. I wrote down the three things I wanted to remember: MM needs to have oxygen by nasal cannula during radiation, what is the plan regarding steroids, and a baseline neurological assessment has not been performed this time as it was performed before and after both prior stereotactic radiation surgeries. The oxygen issue was easy. The steroid issue complicated with radiation oncologist recommending one approach and medical oncologist recommending another. A different radiation oncologist was sent in to do the neuro assessment, likely because the radiation oncologist assigned to MM for today's procedure is really a prostate guy, not a central nervous system guy, and probably hadn't done a neuro exam in 15+ years.

It is confirmed there are three, not two tumors, one very close to the brain stem. Jennifer says Yes I can go to work tomorrow, but do watch MM for seizures, severe headache, confusion, slurred speech etc.

Thursday I go to work.  it is a decent day. Before work I counsel MM: "keep your phone on, respond to my texts and emails promptly today. I am making sure you are ok." He agrees. Later in the evening he reports a few episodes of stabbing pain in the right temple and then twitching on the right side of his face, but now resolved. 

Friday morning I am getting ready for work. He is frowning, sitting on the sofa waiting for me to give him his Fragmin injection. "What's going on ?" I ask.

"I'm worried. I have a headache in the same spot as yesterday's pain. I feel disoriented." 

I inquire whether the disorientation is a balance/ dizziness phenomena or a thinking problem. He says it's thinking, the thinking is slower, finding words is hard. The finding words was hard on the drive home from Moffitt too, with him using he word "snack"instead of "snake", "speed dial" in place of "cruise control."

I bend down in front of him and tell him it's ok to be worried. It is ok to talk to me about the worries. It is even ok to talk to his medical team about them. He decides against ibuprofen for now. I am off to work. 

By 10 am he reports the headache is gone. He is feeling better. Friday night I administer his Zemaira infusion and we are done with all things medical for the day.

Scheduled

MM is on the schedule for radiation. Yay!

Time

Time moves slow while waiting for appointment date and time for brain radiation. It moves fast while brain tumors grow.

Out of the Fog and Into Thanksgiving

I stayed in the fog from last Wednesday until Tuesday or so.I went to work, then there was a weekend, then work again.  Melanoma Man has made two more trips to Tampa since my last post and we will make a third trip together this week. All the preparation has been done, the Novalis 1 mm cut MRI, the head CTscan, the molding of the skin tight mask he will wear during stereotactic radiation surgery. He has a new radiation oncologist, which is disappointing because we had bonded with his first radiation oncologist so well. Alas Dr. Rau moved on to another group practice in Orlando. I feel like he was a good luck charm in some way. You get attached to the teeny tiny known aspects of treatment, like the doctor you have seen before, the same barista at the Moffitt Starbucks or the valet parker. The repetition reminds you that you have been here before, done this thing, can do it again, came through to the other side. Sometimes the little changes can immobilize me, suddenly standing there wondering, "what do I do next? what is the next right thing?" I will misplace a small household item and become possessed to find it, as if my existence depends on locating it.

Things are happening, surprising things. Coffee with a newish friend for two hours on a Saturday. It renewed my strength and belief in myself.

 A last minute invitation for Thanksgiving dinner from just about the only person MM would accept it from without feeling pitied. We spent a wonderful Thanksgiving Day at someone else's house. Usually MM cooks for us for Thanksgiving, but with all the trips to Tampa there was little time to shop or prepare. I worked all day Wednesday. MM got home late Wednesday night from Tampa. No worries, we had no preparation to do for Thanksgiving.

Moments after I got MM's brain tumor email my phone dinged, a new text. I checked my phone. It was AM, not one of my regular text correspondents, but a physician I worked with for 7 years, checking in to see how things are going. I am not much for faking, "oh fine, lovely weather" and what have you. Although I can do it, having essentially been raised by professional cocktail party throwers and goers. What I heard next from AM surprised me. Her father is dying. She is on the way to see him one last time. She told me how much respect she has for me and the way I manage my life. AM is extraordinarily bright, accomplished and dare I say a bit fierce at times. I admire her sense of purpose, drive and directness toward her goals. I, on the other hand, have not lived my life with that kind of determination, clarity or planning. I have continually adapted to the people in it, rather than ask them to adapt to me. I have missed opportunities and sold myself short and just gotten by sometimes. In spite of all that I think I may have succeeded in communicating to people that I love them. 

Where to begin?

Some days I wake up not knowing where to begin. On these days I am thankful for laundry, ironing, making lunches, needing to grocery shop, and going to work. The tasks of daily life get me up and out of bed, putting one foot in front of the other over and over again.

I stayed home on Wednesday with Butter who had sore throat and fever. I tried to keep myself busy, waiting for a text or a call from Melanoma Man. Then I tried to take a nap around 1 pm, knowing that he would see Dr. Etame at 1:15 pm. I aborted my unsuccessful attempt to nap at 1:30. An email came around 2:30. His phone battery was out of juice. "Two new brain lesions, coming back to Tampa Saturday and next Wednesday. Still waiting to see oncologist and get CT scan results."

The next few days I muddled through. Each morning waking up and thinking something bad has happened, wondering for 30 seconds what that bad thing was. Brain Tumors, that's right, I say to myself in my head.

MM got home around 9 pm Wednesday and asked , "Did you tell the boys?" No, I hadn't wanted to give them partial information with no indication of the plan. MM reports no interval growth in the tumors below the neck. He hands me the brain MRI report and I see that there are 3, not 2  new brain tumors. He draws me a picture of a line with an arrow and  box on it. He said "the box is the gray zone. We are in the gray zone because I've been on these medications for 24 weeks. The meds might still be working." In my mind there is no gray zone about brain tumors and there is no doubt that the drugs have stopped working in the brain, but I do not share my thoughts on this.

Thursday morning 5:15, drinking coffee in our living room. MM realizes he would not be able to go to the Outdoor Leadership Boyscout training weekend. He pickes up his phone and dials fellow Scout Dad, Charles. I am thinking 5:15, really? Charles is the Command Master Chief at our local Navy base. MM reasons that he is sure Charles is up. He explains that he won't be able to go, but he is still grocery shopping for the camp out and will drop the food off at Charle's house later Thursday evening. I hear these words come out of MM's mouth," It's not clear how serious this all is."  Charles is also a medic and is certainly not fooled by MM's non-chalance.  

Saturday I had a day to myself with MM back in Tampa and the boys camping with scouts.. I walked on the beach at 7, met a friend at Panera for breakfast, got my haircut at 11, coffee with another friend at 1:30.

Sunday Charles calls and invites us for Thanksgiving. At first MM is inclined to say no, but then says yes, we do accept the invitation.  I am relieved. I am working all day Wednesday and MM will be in Tampa again Wednesday meeting his new radiation oncologist.