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.
Thursday, November 28, 2013
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.
Monday, November 18, 2013
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...