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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.

Good News for Christmas

Christmas came early. After 2 days of scans, labs, and doctors, the verdict is : NO new tumors. I feel as though I could curl up in bed for a long victory nap, say 2-3 days of napping. I know most people take a victory lap, but I've always been partial to napping. That's why Melanoma Man calls me "the Snooze Queen." Good to be Queen of something. Well off to bed for me, because although I dream of napping for 3 consecutive days, in reality I'll get up at 5 tomorrow to start the day and then off to work.

What to do at a time like this?

Well here we are again. Another night before Moffitt and all through the house all of our creatures are stirring. We are all a little antsy here. Seems like a good time to listen to some country music, which I don't ordinarily listen to. I heard this song by Brandy Clark on the radio on my way to North Carolina for Thanksgiving. I liked it. Maybe you will too.

Pray to Jesus by Brandy Clark


Tomorrow and the next day Melanoma Man will get CT Scans, MRI, labs, EKG performed. He will see his oncologist, radiation oncologist, neurosurgeon. We'll find out if we get another "Get out of Jail Free" pass for 2 more months.

Happy Thanksgiving

Well MM rallied and would not hear of disappointing iMac and Butter. He refused to cancel Thanksgiving travel plans, rationalizing that driving posed no problem because he would be sitting down. Driving he said would not deplete his oxygen whatsoever. Well to my thinking pneumonia doesn't care whether you are sitting, driving or lying down. The only consolation for me, that the 10 day course of Levaquin would possibly keep the pneumonia at bay. Levaquin, the same drug that saved my brother, Johnny Reb, some 15 or 16 years ago when he deteriorated in a period of two short days from fine to bilateral pneumonia in all lung fields. The fact thatJohnny Reb had no underlying health problems gave me respect for pneumonia.

I got home from work Tuesday night, leftovers. The shipment of Zemaira for his Alpha 1 Anti-trypsin deficiency had arrived finally, after a two week delay for no reason whatsoever. Melanoma Man did the footwork, spending approximately 4 hours on the phone with the insurance company, the pharmacy benefit company, the sub contractor and the sub sub contractor, the pulmonologist's office. Here are their explanations for why they did not ship on time in the order they were given: we couldn't ship without the patient's weight, we have no orders on file for you, we spelled your name wrong. The pulmonologist's office and the sub sub were on point the whole time. It was all there, the orders, the weight, everything. It occurs to me to wonder if the two week delay did not contribute to the severity of the pneumonia? In any case, unbeknownst to me, MM had planned for me to perform his infusion this Tuesday night before Thanksgiving. And oh by the way he planned to go out in the rain to get the pies for Thanksgiving after the infusion. And oh by the way he would still be leaving with kids and cat in the van in the morning.  I decided on the silent treatment for the infusion and it worked well for me. The silent treatment to ward off his instructions (which are usually incorrect) and his comparisons of me to his other nurses. Post infusion I grocery shopped for pies, an easy dinner for him to prepare for the kids upon arrival, breakfast stuff so hopefully he would not need to grocery shop. Up @ 5 I packed the coolers. Boys up at 6 packed their duffle bags. Off to work @ 7, having checked MM's oxygen saturation, pleased to see it hover @ 89-90.

The Crock Pot Fairy

Most of you are familiar with the tooth fairy, but you may not have been visited by the crock pot fairy yet. It's kind of a new thing. I was chatting with my dear friend Di on my commute home the week before last, reviewing the happenings. The happenings were that Cha Cha, our amazing heroic hunter and healer cat, climbed into Melanoma Man's lap every night after dinner. Melanoma Man was sure that Cha was coming down with something or "under the weather," as my Dad used to say. I suspected that Cha's uncharacteristic behavior signaled that Melanoma Man, not Cha, was under the weather. I thought back to the Fall of 2012, after Melanoma Man's diagnosis, but before  MM began treatment. I would awaken sometimes in the night to see Cha sitting on MM's nightstand, awake and watching over MM as he slept. I hoped I was wrong and that my cat was undergoing a dramatic personality change for no reason whatsoever. There were other clues as well. Each night I arrived home and Melanoma Man would say, " I'm sorry, I don't know what to make for dinner," or something to that effect. That's where my Crock Pot Fairy, Di, came into the picture. Di said she had two crock pots and would bring me one. 

Di and I had planned a day of crafting at my house last Saturday. Melanoma Man and Butter were planning on camping with Scouts. Friday night the chills, fever, night sweats and cough arrived. Saturday morning Melanoma Man woke up knowing the camping would be too much. I reminded him of the Zithromax prescribed by his pulmonologist for just this type of occasion. He shot me a dirty look. Then an hour later he asked for the Zithromax, still insisting on calling pneumonia "a bad cold." He saw Dr. C just 2 weeks ago. Dr. C is another gift from Di. She recommended him, having chosen him to care for her mother some years ago. Dr. C and Melanoma Man talk about all kinds of stuff.  This time they talked about grief and books. It's humanizing, having a conversation that does not strictly revolve around "the disease," whatever one's disease may be. 

Saturday afternoon, with his temperature approaching 103 in spite of ibuprofen, Melanoma Man asked me to call the on call physician at Moffitt. He remembered a cautionary remark about his new drug, dabrafenib and fever. As I suspected she recommended I take him to the ED. How to choose which ED? We medical folks don't call it an ER as they do on tv. It's an ED for emergency department. Dr. C practices at the big medical center downtown, which was also my employer until recently. The cancer docs are all 4 hours away. I was still harboring a resentment against the hospital at the beach for diagnosing my Mom with the flu when she actually had a brain aneurysm almost 14 years ago.  So I decided on the big medical center downtown. It can be a bleak and desperate place and it can also be the best. Last Saturday night with cancer, fever, chills, and pulse oxygen of 87-89 we were low on the totem pole. We waited 3 hours and then threw in the towel. The main concern was whether the cancer drug was causing the fever and whether it was doing other damage simultaneously. A complete blood count, blood chemistry and urinalysis might provide reassurance or indicate that it was time to stop the dabrafenib. In 3 hours he had his vital signs measured once and was then escorted to the " priority waiting room." I was not initially allowed in the priority waiting room, but after my 5th super friendly inquiry at the information desk the receptionist let me go back to the priority waiting room anyway. Melanoma Man remarked that he would be hate to be regarded as non-priority. Later at home his oxygen saturation was up, temp down and I felt ok about our decision to leave. During the night MM remarked  "This must be what it feels like to be a sick old man, oh right I am a sick old man." By Monday the Zithromax seemed to be doing it's job. No fever Tuesday or Wednesday, but his oxygen saturation kept dipping into the mid 80's. As you may recall we don't have oxygen at home anymore, ever since Melanoma Man returned it. Thursday at work I received a text from MM stating simply, "cold relapse." 

I arrived home 6ish to find him on the sofa reading, temperature 99, oxygen saturation 86, looking very weary, coughing, but not in respiratory distress. Sara G. Arrived 15 minutes later with dinner. She is another one of my angels. 

MM went to bed @ 7:30, but called for me every 15 minutes or so. I knew he was scared, but not yet ready to admit defeat. I put the kids to bed, did dishes, got in bed myself @ 9. MM said, " we need a plan in case I have to go to the hospital. I got up and sent a text to MK, " you still up? Can I bring the kids over if MM has to go to hospital?" She said yes, as she always does. By 9:30 MM sat up in bed, with a temperature of 102, respiratory rate in he 50's and asked me to take him to the hospital. "Better yet, let's call 911. I don't think I can make it to the car." I woke the kids, called 911, drove them the 2 blocks to MK's house with pillows and blankets and what not. Back in time to meet the paramedics.  We went to the hospital  at the beach and they did a fabulous job, so I've decided to forgive them regarding my mother's aneurysm.

MM stayed 2 nights in the critical care unit and came home yesterday. To be continued...