Locked up and the Key Dropper

Last Thursday I went to hear this woman speak at my church about forgiveness, grace, addiction, faith, doubt, and fear. Nothing too heavy really. She dropped a key, another key to unlock my heart, so I can move directly head on into the fear, which is unfortunately where the miracles happen. I was supposed to go with Melanoma Man. However Butter was in crisis. The crisis was the misplaced worksheet. MM and Butter both told me there was no use looking. They had already done that. There were dried tears and a floor strewn with papers. iMac was getting ready for karate at 6:20. I told MM that one of us needed to stay home with Butter, that he shouldn't be left alone in this emotional state. MM volunteered to stay behind. "Call MK, see if she wants to go," he said. I was hesitant because MK is so nice, and Southern, and just a tad more conservative than I. She has been one of my biggest supporters through thick and thin and in spite of me being a Yankee. I called anyway. MK had to get get her child to band and serve dinner to husband and mother. "No, I don't think I can, but thanks."

Ten minutes passed and I noticed I had a voicemail from MK. YES! She said YES! I saved a seat for her. We listened and nodded and laughed and everything seemed to apply to all of us humans out there, old and young, conservative, and liberal. 

What struck me most was the part about being moved toward what you most fear. It occurred to me that I have been hiding these past few months, locked up in my own heart. Glennon talked about going to church anyway even when in doubt, waiting it out. Seeing that God has been sending invitations all along. It's just a question of my willingness to open the invitation. I think how can I possibly not run from my fear of MM's illness, fear of raising these boys by myself. How will I get out of bed in the morning if I allow it. I realized that this little piece of internet lets me face it, move toward it, stay present for the people who love me and the people I love. So in spite of making myself this visible, and this open to judgement I will carry on.

Yesterday MM, iMac and I went to see an educational specialist. iMac has the same absent, busy, creative, wandering, mind of both his parents. This year that has gotten in his way. He has done the work, although not always following the directions, not always remembering to hand it in. There is no leeway for late work in high school, just another zero. iMac is getting discouraged. After two moms from two different walks of life recommended the same specialist we made an appointment. I thought of talking to MM ahead of time and requesting that he disclose his Cancer diagnosis. Then I scrapped the idea altogether. We would just get in a fight. He would dig in his heels and be angry and that would color his whole impression of the specialist and whether he could help us help imac.

Lots of questions were asked of both of us, such as our age, our high school, and college GPAs, etc. MM said he was sixty six, which is close, off by a year. Later that night we debriefed about the meeting I mentioned to MM that I think he is only 65. MM did the math and said, "Yes you are right." He asked me, do you think I should have told him about the Cancer? I was stunned, but played it cool. "That might be an idea," I said. MM replied, "I will email him about the Cancer." Specialist emailed back quickly, thanking him for this important piece of information about a potentially major stressor in iMac's life.

This morning I met with my Stephen minister at 7 for our usual Saturday morning beach walk. The sun was coming out after five days of gray. I returned home around 8:15. MM was in Butter's room talking about a book they are both reading. Back in the kitchen I asked MM how his morning had been. "Terrible Sarah. Yesterday I forgot how old I am. This morning I couldn't remember the name of the operetta my sixth grade class performed. I think I'm losing my mind again."

"I've been thinking that if I need to have more brain zaps, I want Dr. Rau to do it, even though he is not at Moffitt anymore. We can look him up and go see him in his new practice in Orlando." MM said.

"Yes," I said. I accepted the invitation to show up and be scared and listen and allow him to process the events of the week. I neither directed, nor fled, exhausting. After all that I took a nap. I have a title to maintain, given to me by my family, the Snooze Queen. These titles are not just handed out. You must live into them and so I did.

Happy New Year!

It is 2015. Surprisingly I am having no trouble writing 2015. I suppose I must have been ready for this one. I had a wonderful Christmas break. I took 3 days off Christmas week and 1 day off New Year's week. I didn't worry about lunch boxes, planners, homework or backpacks for two weeks. I binged on Downton Abbey during the month of December. I have always been a late bloomer. I felt the need to catch up with other Downton watchers before Season 5 started on January 4. Such lofty goals I have for myself. Speaking of goals, I am not having a New Year's resolution this year. Instead I am having a goal. My goal is to relax more. Downton Abbey aligns nicely with my aspirations for 2015.

I have been starting most days with coffee and the daily reading from Forward Day by Day, doing some Tai Chi here and there, saying my rosary now and then and art journaling. None of it on a particular schedule. If I create a schedule for these activities it will defeat the purpose. They will become resolutions, instead of goals and they may cease to produce relaxation. 

Melanoma Man got tickets for us to go hear Glennon Melton Doyle, one of my heroes, speak next week! I am ecstatic. MM returns to Moffitt Friday for "the usual," which involves labs and physical exam and usually no Big News. His next "Special," involving CT scans, MRI and often times "News," will be at the end of February.

Update from Friday's visit to Moffitt: labs are good, and no new findings on physical exam. 😊

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.