Things that Blew Me Away Last week and This

Every weekday morning I get up at 5, turn on the coffee maker, which has been preloaded with coffee grounds and water the night before by Melanoma Man. I spend an hour watching the weather channel, checking Facebook, reading the Skimm. At 5:45 I hit my fast forward button and spend the next hour getting myself, one kid and three lunches ready. The other kid gets ready after I leave for work.

MM had been feeling "under the weather" over the weekend, very short of breath, chills, aching all over, no fever yet, but getting a little cranky. I am friends with many of MM's cousins on FB, since MM won't use FB, it's how we keep up with some of the family and they with us. Cousin Ella had posted Lennon and Maisy singing "That's What's Up." I liked it so much I downloaded it onto my phone and listened to it on my way to work. It came in handy all week long. MM would be cranky with me for helping or he would be cranky about forgetting something or someone. I would sing a line from the song, many of which I now know by heart from the extensive car singing rehearsals I have been conducting. It was a tiring week, which culminated in nothing in particular being wrong. Let's call it a Dabrafenib storm. He has had them before as a result of this miracle drug and he will have them again. The trouble is they look an awful lot like coming down with something dreadful. I don't sleep well on storm weeks. I wake up, and eyes closed listen to his breathing, assessing the sound and whether it just requires monitoring or requires eyes open and action. He reads books, lots of books and plays solitaire on the computer, and does puzzles during the storms. He does not ask for help, or shop or cook. He doesn't want me to shop or cook either because it makes him aware that something is happening and we don't know what yet.  He thinks, maybe tomorrow he'll bounce back, but they usually last 5-10 days, not one. I make helpful suggestions like, " maybe you should give Dr. Array a call?"  I send him helpful emails that recap his symptoms, hoping he'll send them on to one of his health care providers. Honestly I can't tell. Does this the shortness of breath look like a pulmonary embolism, pneumonia, plain ole worsening alpha 1 disease, or is it pneumonitis from the drugs. Since I can't tell, have no lab in my living room, no X-ray or Ct scan or radiologist for that matter. I always wish he would consult the pros earlier than later. It is hard and tiring work being married and being nice, but Lennon and Maisy helped me to be nice. Then yesterday work colleague KW showed me this: Blind Devotion. She said I would need tissues. She was right. Last night I showed it to MM. We sat on the edge of the bed, tissues in hand watching it on my iPad, tears streaming down. Then he said this: Thank you.

The long and the short of it

The elation of no NEW brain Tumors wore off pretty quickly this time. Dr. Etame noted that the left temporal lobe tumor is still present, appears stable in size. He went through the images one by one with Melanoma Man on Wednesday, with a caution that the official reading by the radiologist is still pending. Separately today MM and I checked the electronic record, still no radiology report.

I found a new acupuncturist, since my last one moved to Colorado in December. As usual I tried to tough it out, but have not been entirely successful. The days are mostly fine, but nights are filled with bad dreams and nightmares. 

Last week the nightmare was me trying to find my eldest son in the children's hospital. In the dream my eldest also had melanoma, and had just undergone surgery. I was not allowed entry into the hospital unless I took all my clothes off and left them in security. I was the only lost naked person wandering the hospital halls. Let's just say that even in my dreams I am no Cindy Crawford. The only thing we have in common is that we are both 48. There was one person in the dream who would acknowledge me and help me find my son, TW. TW is one of my real life colleagues and is also kind and helpful in real life.

Last night's nightmare involved Melanoma Man fixing something on our roof. He had the brilliant idea to get to the roof by holding on to the garage door, pressing the garage door opener and riding the door to the top. In the dream things didn't go well with the garage door. MM made it to the top and was then catapulted to the pavement. We were in West Virginia for some reason. I knew to call 911, but couldn't remember where we lived. Of course I couldn't remember where we lived, because we have never lived in West Virginia! 

So in the morning I will walk on he beach with my Stephen minister. I'll say my prayers. I'll try out a new acupuncturist. Sweet dreams to all.

More time

Brain MRI is clean. We got more time. We can go around the board again!

Nobody Bothers Me or Why I am addicted to The Americans

I am madly in love with both Downton Abbey and The Americans. Downton Abbey is a wonderful escape into another world, for me almost like visiting a museum. It is full of clever quips, such as Mrs. Patmore's "Sympathy buttered no parsnips." The boys and I enjoy inserting little Downtonisms into our current day conversation. It's a weekly challenge. Usually it is Cousin Violet, played by Maggie Smith, who provides our phrase of the week.

I shared my love of Downton Abbey with my work colleague,TW. She, in turn, offered me The Americans. I watched seasons one and two in January so I could get up to speed in time for season three. I am utterly and entirely hooked, in large part because I was born in the 60s, grew up outside Washington DC in the 70's and 80's, when there were five television stations. The Americans has managed to work in all the appropriate cultural features of the place and time, including this advertisement which was routinely featured on WTTG when I was growing up. You will also notice the soundtrack, cars and clothes in the Americans are just so, Most familiar is that feeling perfectly captured of living two lives, one the day to day routine, the other a desperate battle.

On the surface the main characters Elizabeth and Phillip are small business owners, trying to raise a family. They do a lot of laundry, another reason I love the show. Their other story as KGB agents secretly living as Americans, puts them in constant peril.

Today I am the working Mom, taking a day off, at home on early release day, so I can pick up Butter from swim practice and iMac from band, bake Apple Pie Breakfast cake, make dinner in the crockpot, do an extra load of laundry. I am waiting for Melanoma Man's report from Tampa, after today's brain MRI and neurosurgeon visit. Everything is fine right now. I try to be in the right now.I can't remember what I had planned today besides laundry and dinner. I don't know what to have for breakfast or lunch. The phone rings. It is Butter, not feeling up to swim practice today. Then rings again, it is Melanoma Man. MRI is running behind. It is 1:20 pm and his 11:45 am. MRI has not occurred yet. They send him away to go get lunch. Back from lunch they give him an estimated MRI time of 3 p.m. His appointment to review the MRI with neurosurgeon, Dr. Etame, is at 2:45. Looks like this is going to turn into an overnight trip possibly. He hasn't taken any of his medications with him. I am warding off a headache and trying not to throw up in anticipation of news good or bad which may or may not come today. Telling myself I can do this, good or bad, together or alone. I can do this.

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.