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...

Something new-art journaling

Time

Time is both slowing down and speeding up simultaneously. While this week seems like the longest week ever, six weeks from now seems too close and too soon. Melanoma Man and I made the trip down to Tampa on Wednesday. We left home around 9:30 a.m. and returned at 9:30 p.m. Neighbor and friend extraordinaire, MK, was waiting up for us in the living room having already gotten the boys washed and scrubbed and into bed.

MM and I had a great day in spite of the purpose of our trip. We talked and talked about news and books and life and the kids. There were few interruptions. I was reminded of all that I love about him. That made me a little bit mad because it is that love that makes this all hurt so very much.

We met with Dr. Rau before the stereotactic brain radiation. I warned Melanoma Man ahead of time that I had questions and that I planned to ask them and get them answered without him interrupting me. He was on good behavior, having been forewarned. The four tumors I had heard about were now five tumors. They were indeed small, but now showing up in the temporal and parietal lobes in addition to the frontal lobe, making their march across MM's brain.

We are on a 6 week leash this time, instead of the usual 12 week schedule. MM will have a repeat brain MRI in 6 weeks. It's a lot of pressure, making the most of these snippets of time, being always aware that we are on the clock.

Saturday MM heads to another campout with our Webelo, Butter, and fellow scouts. Brain surgery Wednesday, camping Saturday. Who would have thought?

A week in the life

It's hard to know where to begin. So I'll begin with last Monday. iMac and his friend Z were the Masters of ceremonies at the Boyscouts Court of Honor. iMac earned his Life Scout rank. Tuesday was fairly low key. Wednesday brought intensity. My first week administering allergy shots at the new job and my first patient to have anaphylaxis at the new job. Having worked in an allergy clinic setting 10 years ago it was not entirely unexpected. I just didn't expect it the first week. I got off work late. MK picked up the kids for me since MM was at Moffitt getting CT scans and and MRI. The incoming text from MM at 5:30, stated simply " call me." Unfortunately his "call me" texts are either a BIG issue or an irrelevant one. I knew this one would be big. First the good news the first three brain tumors are gone. Then the bad news, 4 new brain tumors in multiple lobes of the brain. It doesn't matter that I expected this news . I am stunned nonetheless. The clock is speeding up again and I am not ready. Wednesday night MK drops the kids off. I am waiting for their questions. The questions never come. I am relieved. I don't have to tell them yet. They know already, just as I did. Wednesday night I dream of Melanoma Man standing up from his desk, taking a step toward me and falling. I wake up with a broken heart. Thursday MM returns in time to pick up iMac and Butter from school. Still they don't ask. MM and I sit on the sofa trying to decide when to tell them. MM says Sunday night. I say Saturday so they have time at home with both of us before they have to go back out into the world and be brave. After dinner Saturday night at the island in the kitchen I raise the topic of MM's scans. MM takes the cue and provides the details. Butter gets up from the island and gets tissues first for his big brother, then for his father, and last for himself. We sit in silence for a moment with our tissues and our tears.

Today MM is back in Tampa having his 1mm MRI and having his new radiation mask made. Next week I will take him to Moffitt for what will be his last stereotactic radiation brain "surgery." His oncologist is changing his drug regimen in the hopes that the new drug will cross the blood-brain barrier. I will be at work trying to make a good impression, and missing my "advisory committee" from my last job. The advisory committee kept me afloat. It's hard to swim without them.