Six Foot Four, On the Floor

It was an extra long weekend, as the whole city was preparing for Hurricane Hermine, who thankfully did not arrive in our beach community as expected. My clinic announced it would be closed for the day on Friday. Melanoma Man called as I was on my way home. He was proud that he could remember how to make a phone call. He and Ishamel had moved some things in preparation for the hurricane. As a result the cable tv was out and he was a bit frantic. When I arrived home I found that there were a few missing elements to our backyard hurricane readiness. Sandbags were in place, the pump was set up without any outlet hose. Since our yard and house flood when it rains for 24-48 hours, a functioning pump was critical. A quick trip to Ace hardware, then home to complete the pump set up and work on tv. My evening attempts to get the cable up and running were unsuccessful. Friday morning we awoke to wind, but no rain. Hermine was headed farther north. The days are long for MM and I so when 8:30 pm hits we usually seize the opportunity to get in bed. I don't remember much of Friday or Saturday. Sunday we went to church. MM wanted to walk the last 2 blocks of the journey home, so I let Melanoma Man and iMac out of the car two blocks short of home. A few minutes later imac came racing through the back yard and in through the sliding glass door to the kitchen. "Dad fell. There's a lady waiting with him." The lady just happened to be writer, fighter, mother. iMac and I raced through the backyard and a neighbor's backyard to MM. Rescue was on the way. They assessed MM, no breaks, offered transport to the hospital, which MM declined. They helped me get him in the car and made him promise to use his walker from the car to the house. Monday morning MM told me he knew he was having seizures during the night, he felt that he was deteriorating quickly, wanted me to call Bob, one of the priests from our church and our hospice nurse K. Bob was in Vermont as it turns out. By afternoon MM had lost the ability to put together sentences, and I had caught his falls 3 times. He couldn't remember to tell me he was getting up from the sofa. So I stayed in hearing distance. K came at 3:30, but was not hearing my message which was I need to be set up in the house NOW with a wheelchair, hospital bed. I told her this was moving fast, as in a brain bleed or edema. She told me to do a google search for safety tips for a person with brain tumors.She told me to read the pamphlet. Read the pamphlet? Are you kidding me? This was not a pamphlet situation. She told me I could go to Target to get a side rail for a toddler bed. This was "off the record" advice because she said it would be considered a restraint and legally she couldn't recommend that.  I told her I can't go to Target. MM is too wobbly. She told me she couldn't give me any advice regarding whether MM needed a CNA rather than Ishmael, his companion. She left me with a bag of disposable briefs and a leveraging belt. An hour later MM got up from the sofa. I ran to help him. I was right behind him. As he fell I caught him under his arms to soften and guide his landing. I called iMac. iMac helped me lift him onto the toilet, and pull off his boots and wet clothes. By this point MM was an unconscious six foot four inch long, 195# bag of horse feed stuck in a tiny bathroom. iMac and I could not move him. I remembered that Writer/Fighter/Mother had told me that both she and her firefighter husband were freakishly strong. I called. She sent her husband over. iMac, Firefighter and I carried MM out of the tiny bathroom to the bed. I told him hospice had just been here. He said call again. Nurse David arrived this time and noted the mental status changes, loss of consciousness, incontinence and inability to follow commands. "Would you be ok with admitting MM to one of our inpatient centers for symptom management?" David asked. Of course, since the only tools I had to manage him with were the leveraging belt and disposable briefs that K had left for us, me sitting on the edge of the bed to keep him from falling out and a bunch of seizure medications that he certainly couldn't swallow in his current state.

Snippets

Call Me Ishmael

July10-Ishmael's first day. I haven't read Moby Dick, but have become acquainted with the first line of text in recent weeks. July 5th I began formulating a plan that would allow me to save my last 28 days of Family Medical leave. By this time I had exhausted all of my sick leave and vacation caring for Melanoma Man during 3 brain surgeries, a week of radiation, seizures and radiation damage. MM survived it all but no longer has the skills to be home alone. I thought back to the day Mom died which also happened to be the date of MM's first seizure. It is that life insurance policy of which I am one of the beneficiaries which allowed me to bring Ishmael into our lives. If I stay home to care for MM myself I will exhaust all of my FMLA, lose my job, lose the health insurance on which my family relies. Mom, with whom I had a difficult relationship made it possible for me to pay 66% of my gross earnings toward Ishmael's salary. I can't say I know him well, but what I do know is that he is kind, he looks out for MM, he preserves MM's his dignity.

Butter's Birthday and the Smell of Cancer

August 13-Butter turned fourteen today. We took Butter, iMac and four friends to Suicide Squad, which as it turns out may have been inappropriate to take other people's kids to. It was PG13 but I did no research ahead. Oh well. MM came along too. I'm glad he was up to it. There was another hospitalization August 3-August 5. MM signed up for hospice on August 5. His pareital lobe surgical cavity has refilled with 3 cm of enhancing matter, which means it could be either a tumor or some necrotic/dead brain tissue. The 8 new enhancing companions sprinkled throughout his brain strongly suggest that the parietal lobe mass is melanoma. MM's hands began to shake on July 30, more confusion on the 31st. He decided to wait until Monday August 1 to have me call Dr. Mody. She called me back herself and mapped out the differential diagnosis, recommended he go to the ER to have the necessary tests. 

Today at the movies MM sat next to me and the smell of cancer wafted toward me again and again. I thought maybe it's something else, maybe it's not cancer. But it is, I've smelled it before. It is somewhat nauseating. I sleep with it every night. I pray for crazy things like a massive brain bleed. Yes I would like to order a fatal brain bleed for my husband, quick and fast please. It sounds crazy to a lay person, but probably not crazy to a nurse or a doctor who has had patients die brutal deaths, to wish for a peaceful drifting away rather than a struggle. I don't want my kids to see the struggle or the brutality. They already have, watching their Dad lose the ability to swallow and then get it back, lose the ability to create sensible sentences, get it back and lose it again. They have watched their Mom dress him, trim his fingernails, put his contacts in, take his contacts out, watched him refuse to get glasses. He put his oxygen tubing on backwards, so the oxygen flowed onto the back of his scalp instead of into his nose. I offered help. He slapped my hand and said "you know better than that."  I remarked "your mama must've been a hand slapper," and left the room. Then I thought to myself "who cares about the oxygen," it doesn't matter.  If he gets short of breath he'll sit up and ask for help. Some days he is grateful and sweet, thanking me for each bit of assistance. Other days he is critical and demanding. Everyday I am tired, trying to take the high road, sometimes missing the mark. I am grateful for Ishmael who comes in good cheer to be with MM each workday so I can go to work. 

Riverton

We have gone to Riverton every year for the Fourth of July since we married, except those years we were overseas.It is where MM's grandmother, Maude was raised. The original house burned down years ago. Maude and Willam built their retirement home in Riverton. MM's childhood summers were spent here. I wasn't certain we would be able to make it this year, nor was I certain he would understand if we couldn't. My packing was a disorganized mish mash with a few critical items: bathing suit, oxygen  concentrator, MM's pill box, beach ball, living will, Do Not Resusicitate order, allergy and asthma medications for the kids, durable power of attorney. 

Last night we arrived late. iMac and Butter found their cousins and were off for a game of manhunt. I brought the linens from home, Nemo and Thomas the Train. MM purchased them for Riverton along with the rickety bunk beds years ago.  I couldn't remember which boy got Nemo and which got Thomas. MM recalled that iMac had always used the Nemo sheets. These are the details that blur in my mind. MM always remembers. He tucked in the corner of a fitted sheet on the top bunk. I realized this is the last time we will make these beds together. I started to cry. Since the tumors, radiation and seizures his remarks are now more than a little bit off. "I'm really going to miss you," he said. It almost made me laugh, but didn't. As if I was going on a long trip.

The Cancer Battle

People often describe the cancer experience with words like  battle, bravery, courage, war, fight.  I never quite understood it, but I am not the patient. I do see Melanoma Man's determination and courage throughout his experience. One of the tools he uses is knowing just enough, not too much about his disease. I know too much. He doesn't remember June 10-June 18 and it is just as well. Some days he asks me three or four times, " are you going to work next week?" He has forgotten that he tried to turn the tv on with his cell phone, tried to open an envelope with a pair of glasses, tried to adjust the air conditioning in the car using the radio volume button, or open the car door with the window button, can't open jars, forgets to turn off the stove. Most importantly he has forgotten that the neurologist has said he is not to be left unsupervised. His hand eye coordination is still a little bit off, dropping things throughout the day, short of breath, yet planning to cook all next week. Still making plans which is admirable. I do understand the war analogy from the perspective of trauma and how it has changed me. I try to keep it at bay through continuous doing, taking another step, making another list. Then I find myself depleted. Sunday night was one such night. I woke up at 11 with "the headache" which isn't really a headache but more of a whole body experience of pain, chills, nausea, vomiting. I got in the car at 7 which is when Publix opens. I planned to get Coca-cola and saltines. I turned back for home after vomiting out my window a few times. I was trying to pull myself together in time to get MM to his appointment with interventional radiology at 10. I wasn't able to pull it off, so called them to reschedule. I sent MK a text around 8 or 9: "would you bring me a coke(not diet!) and some saltines?" MK brought just that and her good company and her willingness to sit with us in the living room, watching the weather channel and chatting and just being fearlessly with us in spite of our mortality.

An hour at the beach

That's where I am with iMac who turned 16 this week. I left MM at home by himself, not ideal. I made him demonstrate that he could make an outgoing call and answer an incoming call. No cooking, no operating heavy machinery. He concocted the beach outing with iMac. Once iMac and I were on board he extricated himself from the plan. iMac certainly needed it,  iMac spent the mornings this week volunteering at church with Vacation Bible School. The afternoons were spent working on physics and hanging with Mom and Dad. Just before we leave the house today, I tell MM he has made a lot of progress. He shakes his head no. It's not enough progress. He will never return to his former self. There may be improvements certainly, but nothing will be carefree.

Day 7 at home

Today sentences are clearer. He cannot remember his phone number or mine or how to use his credit card at CVS. There are periods of the day when speech gets more mixed up. He asks me if he is having a seizure. He is still speaking real words. Most of the words belong in the sentence, but the sentence structure is wrong. He can open the car door. He cannot remember how to use the remote unlock feature to get a book out of the car. His other brother Doug left today. People can be exhausting even when they are helping. Anxiety looms up in the car when I am alone for 5 minutes dropping iMac at his volunteer job and at night when I wake up. There was a month of mostly sleepless nights for me before the seizures started. I filled the time watching House of Cards, all 52 episodes. Now I have moved on to Frankie and Grace on the advice of Sara G. We are at Quest for the second day in a row. They did not draw enough blood. The labs are required for the flow study. The flow study will determine why his power port is not working. Both Lori (his infusion nurse) and I have been unable to get a blood return from the port. She suspects that the seizures which occurred in all of the muscles on the right side of his body caused the port catheter to move. Sounds likely. Melanoma Man chooses a movie for us to watch tonight, Bourne Identity, no coincidence as MM loses his identity,

One Glorious Day with the Keys

Wednesday June 8th I drove Melanoma Man to Tampa to see Dr. Etame and have his first post brain radiation MRI. We were quiet in the car going down. The MRI showed improvement in both craniotomy sites. These words appeared in the report:"No new metastatic lesions. Remainder of lesions are stable." Dr. Etame cleared him to drive again. We waited by Valet parking. I had been battling a sinus infection and cough for 5 weeks, just finishing antibiotics and prednisone 3 days before, but feeling yuck. I was happy for him to drive home. Thursday I was off to work. Melanoma Man cooked dinner almost every night this week, the first time since February. Friday June 10, 6:50 a.m. we talked about our plans for the day. MM planned to take imac to Kohl's to shop for clothes. imac and Butter are growing out of clothes at an alarming rate. imac was scheduled to leave for Nashville in a few days on a mission trip with church. Butter was scheduled to leave for Boyscout leadership training  on June 11.

Friday morning I was feeling a little better. I had been back to my doctor Thursday afternoon. He prescribed another course of antibiotics and prednisone. I was in the Allergy Shot room at work. My first four patients had come and gone. My cell phone rang, a call from imac at 9:45. I answered, which I usually don't at work. imac does not call for routine issues. He always sends a text. Today he said "Dad is having trouble talking." I told him I was on my way. I called Sara G. She was home and agreed to drive over to be with imac and MM until I arrived. I assumed, incorrectly, that this would be just like the last time in February, that full speech would return within 10-20 minutes. It did not. I advised MM of the plan. I would drive him downtown to the hospital where they would do CTscan and MRI to determine if he was having swelling or bleeding in his brain. I drove faster than usual, passing a police car on the highway and thinking that was a mistake. The stroke team assessed him within 4 minutes of arrival. He was in the CTscanner within 10 minutes. No bleeding, no clots, no blockage of arteries. The neurologist said he had global aphasia. He could neither understand, nor express language. We waited for 2 more tests. His hands got weaker. He could no longer say "Yes, No, It's ok." Those were the three things he could say when I arrived home. He could not follow commands. He had no sensation to pain. He returned from the EEG lab with his head wrapped in gauze. All the EEG probes still in place and a portable laptop which showed his brain waves in real time. The nurse asked why he still had the probes on. I overheard the EEG tech say "He's in Status." "Status Epilepticus?!" I asked. She said the doctor would come to talk to me about it. I knew it was serious, but it had been a long long time since my neurology days, which were exclusively in nursing school and as a hospital volunteer during high school. I just knew it was bad. He spent an hour making sounds, trying desperately to tell me something. Finally I said: " Do you have to pee?" He nodded his head. I felt so dumb. By 4:30 we were on the Neuro step down unit. Two IV anti seizure drugs had been administered, a third about to start. He was still in status. Sara G spent the night with the kids. The Critical Care doc came to talk to me about intubating  MM, sedating him, and putting him on a ventilator for 3 days to stop the seizure. I said No intubation, No compressions, No defibrillation. She told me there was a good chance he would die. Keep the kids home from the mission trip in Nashville and the BoyScout Leadership training in Atlanta, she said. Sometime Saturday morning the seizures stopped. He slept almost all day Saturday. When he was awake he spoke nonsense and desperately pointed at the pictures on the picture chart or the wrong letters on the alphabet chart.He would point to E while saying LLL? It was a long day. Sunday was harder. Each time I went in his room he asked for his lawyer, tried to get out of his bed while hooked up to EKG and Pulse Oximeter and various other monitors. I had to leave. They gave him IV clonipin, put him in restraints for a short time. After he calmed they assigned a sitter or companion to him full time. I went home to sleep. The next day proved nicer. The days blended and blurred and soon 6 days had passed. They were sending him home. The man I brought home doesn't remember how to open a car door, shaves with the handle of the razor if no mirror is available,  could not button or zip or read. He could talk in a fashion. The talking has gotten better each day. Today he dressed himself, except socks. The auditory hallucinations continue. I'm not sure if the visual ones do. At one point during the hospitalization we were told the Brain MRI was much worse than the one in March. Twenty four hours later, oops! We forgot to look at the Brain MRI from March. He got discharged with one correct RX, one incorrect RX and one missing RX. I should have paid more attention, now it was past 6 and the physician's office would be closed. The CVS pharmacist, Ryan, picked up on the medication error. Ryan was willing to give me a few tablets after we discussed what the usual dose would be. In the morning I called the Neurology clinic about the prescription and to schedule a hospital follow up. Initially they said I would need to call the hospital to have the prescribing physician paged. The hospital operator refused to do it. I called back to the Neurology clinic, after having left messages at the hospital that I knew would go unanswered. Tammy, the office manager, contacted the prescribing physician to make the corrections. Tammy called back to say there was a third medication for seizures the doctor had forgotten to give us. To be continued...