Saturday, December 20, 2014

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.

Friday, December 19, 2014

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."


Wednesday, December 3, 2014


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.

Monday, December 1, 2014


MM is on the schedule for radiation. Yay!


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