Anxiety-how much?

How much anxiety is just right? I have wondered this over and over again in the past few months as I try to titrate just the right mindset. On my bedside table I have books and more books. Here's what the current stack is comprised of: The Hero's Journey by Joseph Campbell, The Reenchantment of Everyday Life by Thomas Moore, Magical Journey by Katrina Kenison, God's Hotel by Victoria Sweet, Love Wins by Rob Bell. A set of rosary beads and a set of prayer beads, an episcopal equivalent tucked into a little box labeled special things. 

Two Sundays ago at the grocery store MM was moody and decided to sit on a bench and wait for Butter and me to finish shopping. The next morning he awoke with a headache at 3 am and took ibuprofen for the first time in 6 weeks. He had never had a headache in his life until the first set of brain tumors. The headaches retreated dramatically after both rounds of radiation. His breathing is significantly improved. He's started making brain tumor jokes again. I can't tell if the jokes are generalized nervousness or a cover up. The coffee pot has been left on twice and two pots have been burned on the stovetop. Last night he called me regarding evening logistics of kids, homework, a meeting at the high school and a meeting for Scouts. He was surprised by my plan to drive directly to the high school to meet iMac there. Melanoma Man had devised the plan the night before. I try not to read too much into these incidents. 

February 7th there was an appointment with Maria/Oncology nurse Practitioner,  MRI of brain, CT scans of chest, abdomen and pelvis.  The suspense is painful, tedious. I would just like to take a nap for 3 days leading up to these marathon medical appointments.  That's reasonable right? A 3 day nap. Instead I arranged lunch with Nancie, member of my personal advisory committee. 

On the day of the medical marathon around 3:30 pm, Melanoma Man sent me a text, stating that with it being a Friday lots of people leave early and thus we would have NO CT or MRI report until Monday.

Five minutes later another text, "the scans are good." I couldn't fathom how both of these could be true. I picked up the phone a minute later, finding texting an inefficient mechanism for discussing something so important. On the phone MM said, "The MRI is clean!" "What about the CT scans?" I asked. "Won't know until Monday." I was reminded of Patient #1's post about waiting days for scan results. 

At home MM proudly presented me with the official MRI report, like a kid with straight As. Two things caught my eye. The phrase "no priors for comparison" and the presence of brackets. Sloppy Friday afternoon work. There were at least 4 priors for comparison. The brackets were vestiges of a multiple choice drop down menu that had not been completed. Inside the brackets the word "blood."  But was that the word the radiologist really meant to select. If the selection were complete the brackets themselves would disappear from the document. I told myself I was being nit picky, anxious, a worrier. Put it down Sarah, stop, let it be.

The following Monday night, home from work, MM's phone rings. It is Maria returning his call from earlier in the day. I hear him say "Maria- two questions: why does it say there are no priors for comparison? And what do the brackets mean?" It makes me smile. There's my boy. There is his analytical mind and my worrying, which I haven't shared with him, is not so foolish after all. Maria promises to take the films to the radiologist who read the first four for comparison to the priors. She sees it too. It's been more than a week and Melanoma Man hasn't reported back to me any further details. Somehow I'm not rushing to ask either. We get what we get and what we've got is good. Eight months since the first set of brain tumors, when we know the average survival time after melanoma hits the brain is 5-7 months. The science of melanoma treatment is changing right in front of us and we are the beneficiaries.

We go to another Blue and Gold dinner with Cubscouts. It is our last. Now we are in BoyScout world since Butter received his Arrow of Light, went on his first Boyscout camp out with his big brother this past weekend. Friday night of the camp out Butter shares his tent with 3 friends. They practiced putting up the tent in our yard a few days before. Still with the practice they require help from iMac, who is more than thrilled to be older, wiser, more skilled. Melanoma Man attended Friday night camp out happenings and drove the hour home to sleep in our bed with me. He has a sore throat Friday night. In our bed, in the dark I ask him if he has the antibiotics the pulmonologist recommended on hand. "Why are you always trying to treat things that haven't happened?" he wants to know. Dr. C/ pulmonologist has advised him to start the antibiotics at the first sign of upper respiratory infection, so it is NOT my plan. It is the pulmonologists plan. " Boy Scout motto," I return, "Be prepared." I wonder to myself "Why you got to always live life right up to the edge?!! Why you got to wait until it's an emergency?!!" I am tired. I sleep. Saturday I walk on the beach at 7, calmest ocean I've seen in a long time, dark blue edge of sky, birds floating on the surface enjoying the rare calm. Me too. Later I treat myself to more sleep, a two hour nap, uninterrupted by boys or cat. 

What the sidewalk said on Saturday

Made my day

This music video by pharrell Wiiliams http://youtu.be/y6Sxv-sUYtM

Cure for the flu!! Alert alert

I have been laid up in bed for 3 days with the flu. Felt a little strange on Friday afternoon,soles of my feet hurt when I woke up Saturday. By noon I was aching all over. Four o'clock fever, headache, dizziness and cough. Whoo that was fast. I got my flu shot in September as all good nurses do. Perhaps a different strain  of flu. I weighed my options, to go to urgent care for an official diagnosis and possibly Tamiflu prescription or just hang out in bed. Since I don't have any of the high risk conditions associated with complications from the flu and the Tamiflu only reduces duration by 1-2 days I decided to hang out in bed, playing keep away with Melanoma Man and the kids. Nothing attracts a fan base like a sick and feverish Mom in bed. The keep away approach was unsuccessful. More of a boy magnet, something I never perfected in my youth. Today was MLK day, so kids home from school. iMac with several large homework assignments to mope around about. IMac had "forgotten" to disclose these assignments 7-10 days ago. This always leaves me furious with MM, as in WTF are you doing to help the kids learn organizational skills? Then guilty, as in cancer guilt. It is a miracle that I did not spew my anger and disappointment all over the house. iMac has completed oodles of work today and I managed not to destroy anyone's ego, except perhaps my own.

Day two of flu/ Sunday, the tears came. Something I don't like about being still, the tears come, and bring with them regrets and grief. It occurs to me that I don't have much to show for my life. Yes here comes the drama. Just to make myself feel a little bit crappier I recall that I was ranked third in my senior graduating class from high school. The student ranked second, just one notch above me, founded Ebay. And back to the tears, crying gives me a headache, so it is best to do in the morning, preferably on the way to work. Then I have a whole day for the swelling to go down and a chance at a good night's sleep without a headache. Crying on the way to work was a great solution there for awhile, when. I worked with the best Advisory Committee ever,  Cici, Nancie, Ann, and Vicki who were always able to patch me back together in 15-30 minutes. So no car crying for me since starting the new job September 30th. 

Tomorrow morning I plan to cure my flu and my attitude by going to work and being useful. I could probably even get away with some car crying. I could tell my new co-workers " My face is just puffy from being sick." They might even believe me.

Read it

Magical Journey by Katrina Kenison. You will be glad you did.

Here I am

Everything has been altogether ordinary and altogether not ordinary, which is my status quo. Melanoma Man is in good spirits and his energy level seems good too. The FDA just approved a new combination therapy for recurrent, inoperable melanoma. Dabrafenib + Trametinib= braf inhibitor + mek inhibitor. He got through the prior authorization process and the Trametinib will arrive Wednesday. He's been on the dabrafenib alone since November. In the early days of melanoma when we were newly engaged and newly married I read journal article after journal article in my attempt to understand and control melanoma. Now I just hit the highlights which is infinitely better for my mental health. I feel confident about the Weber and Dr. Rau and they make us feel like people, not just statistics. Last week one of the Dads at a Boyscout event asked Melanoma Man if he is Butter's grandfather. He was crestfallen. I remarked to MM, did you tell him that you are just an unbelievable stud, keeping up with your 47 year old wife? It made him smile. The dark clouds were brushed away as I shone sunlight upon his sky. It is important for me to remember that he should be someone's grandfather, as are all his college and law school classmates. It is important because he gets out of bed everyday cheerful, making plans for our boys, encouraging them, and coaxing them in spite of fatigue, breathlessness, and joint pain.  Sometimes he pushes too hard, like trying to plan Butter's college career at Princeton. Me, I am trying not to look ahead farther than a few days. Butter, he is still talking about Heaven, if it is real, and how can I believe it, and how did I come to believe it, He wants every detail of my faith journey, but for now I sift through the memories and parcel them out. 

Other big events  in our extended family: MM's cousin Roy lost his battle with cancer two weeks ago today. I can't remember a trip to Riverton without seeing Roy, always steady, reliable, bright and humble. When I felt like such an outsider in this huge North Carolina family, Roy always pulled me to the inside, made me feel at home and part of. It's a true accomplishment because most of my outsider ness comes from within my own head. Roy turned 64 four days before he died. We saw him at Thanksgiving in Riverton. Even then he was planning a spring canoe trip down the Lumbee River and raising money for a college scholarship fund for some young man or woman from one of the poorest counties of North Carolina. MM and Roy spent summers together in Riverton, probably not together, but parallel. Cousins spoke of them in the same sentence as the cousins who survived cancer and embraced life. His death reminds me of the edge. It reminds me of the importance of Heaven. I am hoping Roy has met up with my father, JLS and my grandmother VEW. They would really enjoy each other. I like to think of them having the chance to meet.

 

Tonight I am in bed with a fever and headache. MM and Butter are watching Percy Jackson, Sea of Monsters. iMac is in Georgia freezing cold camping with scouts. I have in the refrigerator another ridiculous concoction, Black Bean brownies. Don't underestimate the importance of fiber I say. Shh, don't tell the boys!

Christmas Time

Another Christmas. We got another. I didn't expect it really. I haven't felt so Christmassy this year. We got tickets to see A Christmas Carol, a one man show performed at our church last Friday. It was my idea. I came home from work and didn't feel like going at all, but I did go. I was glad to have gone, to have resisted the inertia. It was a spectacular performance. And two Saturdays ago, the office Christmas party. I had wanted to go, and then I didn't. The new job is good, great even. It takes tremendous amounts of my precious introvert energy to be the new nurse in the new job. It has been 6+ years since I've been new anywhere. I made it through to my 90 day evaluation with the Director of Nursing two days after Christmas. I worked on Christmas Eve morning and got out by 1 pm, just in time to meet Melanoma Man and the boys at the two o'clock service. I arrived early enough to get a great seat where I could watch and hear iMac play Holy Night on flute with an organ accompaniment. iMac has been a little bummed out that I haven't been able to take any extra days off during his winter break. I'm flattered that he misses me at 13 1/2 years old. Yesterday he wanted to go to the movies with me, to see Frozen. It was Disney, animated musical, some conflict, good prevails. A nice tidy package, just what we needed, some assurance, some predictable outcomes. Melanoma Man had an uncharacteristic amount of energy and cooking last week. It reminded me of the good ole days when he cooked every night, grocery shopped and the laundry was done and the homework was done. It all slipped away gradually enough that I had forgotten what it felt like. I didn't get my Christmas cards out this year, got the tree up, but without ornaments, couldn't find my Christmas stocking at all. It was enough, the tree had lights. I am madly in love with my tree because the branches are hinged and fall right into place AND it is pre-lit. The lights are the thing for me, that's where the magic is. I let the kids leave their Christmas toys and games, their blankets and pillows all over the living room floor on Christmas Day. There was no room for this sort of imperfect nonsense in my mother's holidays, events, celebrations. Sometimes I act just like her without meaning to, but not this year.  I didn't make room for perfection, not one bit. It was a mess, a peaceful and joyful mess. We had Christmas dinner at A & K's with 3 of their adult children, a girlfriend, a girlfriend's mother. Likely A's last Christmas here. She will be marrying K and moving back to their hometown this summer. They have known for 45 years, what's the rush?

New Year celebrations and resolutions loom. We spent it at home, which is my idea of a great New Year's. I have no gigantic plans for 2014, no list of fantastic accomplishments from 2013. Just that we made it. We made it this far. Today dear friend Rosemarie asked me if I make resolutions. Hmm. On the spot I decided that in 2014 I am showing up for life, just show up. Easier said than done. Home with MM and boys today, showing up meant letting iMac read Calvin & Hobbes to me out loud over and over and over again. I'm not sure why he thinks this is so much fun, but he does and I don't. At some point I just could NOT show up for this anymore. I watched half of It's a Wonderful Life, which is also a huge showing up victory for me. I aspire to sit through an entire movie at home some day. So. I have amended my resolution to "Show up and Set limits!" That will encompass just about anything. I've been in a creative slump for some months now, since starting the new job. I think I'm coming out of it. I  entered into some kind of a self evaluation/critical mode at work which infected pretty much my whole life and got in the way of writing, scrapbooking, and card making. 

For Melanoma Man there are memory lapses and what I call "filling in the blanks." Filling in the blanks is when Melanoma Man plugs in a word or someone's name because it sounds like it might fit in the story or the sentence, but he can't really remember what is supposed to go there. I roll with it mostly, or supply the missing details if he seems open to it. 

Cha Cha has climbed into Melanoma Man's lap every single night since MM's pre Thanksgiving  hospitalization. It's not clear to me exactly why. The answer at least was not provided by the last set of scans and labs. Next week MM will be back @ Moffitt for routine follow up, no scans so probably not a very informative visit.

Tonight I  arrive home to find MM watching Hunger games with iMac and Butter. Butter has his hands over his face, peeking through. I can tell from his expression and the soundtrack that it will be a late night for this Mama and Butter. He is as tall as his 8th grade brother, but a little more tender. Show up, that's what I'll do. I may end up in his room for the night. But I'm setting limits, I refuse to stay awake to fend off the bad guys that haunt us. I will sleep.