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...

On Mother's Day

Wow. It is washing over me as I sit here on the Saturday night before Mother's Day, like a movie in fast forward with no sound. My Mom died in February, the twenty sixth to be exact. Dad died 18 years ago this coming fall. In March a childhood friend posted a picture of nothing. It was so nothing that I didn't recognize it as the land my childhood house had once stood on. Now just grass, no sign of a home having ever been there. I felt the eraser sweep across my life. In March my "other mother" came to visit the day after her sister in law died, two weeks after her brother died. I am loosely calling it a visit because what it actually was a rescue mission. My other mother, who I call Molly, gave birth to me secretly almost 50 years ago. Catholic Charities took it from there, placing me in my family as the youngest of four. Molly came in March and cooked and cleaned and picked kids up from school and soothed my soul while I tended to Melanoma Man in the hospital. It was hard to let her leave. Uncool Wayne, Melanoma Man's brother came again a few weeks later. He too worked hard, swept the garage, cooked, cleaned, helped with homework, kept kids in high spirits.

Weekdays keep me at full pace, up at 5 am, home at 6 pm, homework or karate or dinner or homework with kids. Then a night of restless sleep followed by Coffee. Molly gifted me with an automatic shut off coffeemaker, in case I forget. Saturdays, after lunch, it usually hits me, the "to dos"and the seriousness of this melanoma. I am struck with an intense desire to sleep. I attempt a nap, but it is really just a time out.

It is hard to take the high road again. This week I am grateful to Uncool Wayne who was very cool. I had to hide the keys from Melanoma Man last Sunday due to sneak driving last week. I have been the recipient of the silent treatment interrupted briefly by accusational emails. I want to take the early retirement plan, the buyout with severance and perks. No such plan for motherhood and wife hood is available.The high road takes a lot of energy and I don't have much to spare. So I called Uncool Wayne who has been nothing but good and kind. I called, not for a solution, not to ask him to turn on his brother, but simply to say to someone who has already seen the worst of Melanoma Man,"I am working my ass off at every job I have. This is horrible. I am awesome. I am protecting the people of the state of Florida by keeping the keys. I am trying not to hurt my children by being mean and spiteful to him with them as witnesses." And just to cry, and be heard. He listened, he understood, he wasn't upset by my upset.

Melanoma Man tried to tell me that I am killing him by keeping him imprisoned in our house, which almost made me laugh. Never mind the 25-30, cute stay at home moms who have offered and provided transportation to the kids and MM. Never mind the Uber and Lyft accounts he set up. Never mind the smart phone we just got for him.

The wheels don't turn right anymore. Sometimes himself, sometimes not, Today flowers came for Mother's Day. He sent me flowers when we got engaged, for each pregnancy and each delivery. So exactly 5 times. And then today. The vase is purple, my favorite color. I would like it very much if there were lines defining everything, giving clarity, good over here, bad over there's. It is all a blurry mess of bad and good mixed.

Days blur together

It is Easter Monday. No school for the kiddos. Ordinarily I would be at work today. MM's home care nurse case manager will come today and a speech therapist this afternoon. MM and I were up at 5:45. He started having a few sips of coffee by mouth in the morning without choking. It is the rituals we miss. Rituals of preparing food for each other. All the driving gone, no more picking up kids in the van with snacks ready.

I worked on Tuesday. It was good to see everyone, to have a routine to follow. Uncool Wayne arrived around 4. I got home at 6:10. Wayne had taken boys to karate. 

Melanoma Man and I left just after 7 on Wednesday, after Butter had gotten on the bus, leaving uncool Wayne in charge of getting iMac to school. We stopped at a rest stop on I-75, so Melanoma Man could administer a tube feeding(lunch) just about 25 miles from Moffitt. Radiation was running a little late, but we weren't. I had a bag of magazines dropped off by Leila, to while away the time. MM said he felt weird afterwards. We picked up mashed potatos for him and salad for me to eat back at the hotel. During dinner(evening tube feeding), his hands started to shake. His whole upper body now shivering. Feverish, he asked for a blanket, breathing got faster. I had not brought a thermometer. It was a restless night for both of us, wondering if he would end up in an emergency room or hold his own. Morning brought exhaustion, but no more fever and chills. Thursday he slept most of the day, while I read or watched him nap. Friday we returned home, pretty depleted. A weekend at home was nice. Monday came fast and we were back in the car again, this time accompanied by a book on CD to fill the silent space between us on our way back to the cancer center. I brought the oxygen concentrator this time. It is a cumbersome unit that magically converts room air into oxygen which can then be delivered by nasal cannula to Melanoma Man. He uses it at night when we are home. We haven't traveled with it before. Melanoma Man objected. I told him it was to help me get a good night's sleep. Yesterday was his "last" day of radiation. The radiation tech asked him if he would like to ring the bell, a waiting room tradition for patients on their last day of radiation, a graduation of sorts. He said no, explaining to the tech that this is a journey, not a destination.

We were home by 2:15 pm. Melanoma Man hopped into bed for a nap. When the end of day finally came I sat on my side of the bed, feeling as if it was the first moment of rest in a month. I go to work today, which will be great and wonderful and scary. Scary to leave Melanoma Man unattended even though I believe he is ready for it. The weight of his well being is always with me. It is harder to carry when I am not with him.

Why I can't tell you how I feel

Because there is so much more to come, intense gets intenser. The only down time is between appointments when I am in Tampa. At home there is no downtime. There is the leaking sink in the hall bath. There is the front door handle that never works and in fact fell off last week. The rental company sends Kermit to fix it. Both Kermit and I know the door handle needs to be replaced. He has fixed it 4 times for me in the last 4 years. The fix always lasts 24-48 hours. There is laundry and groceries. There is the job I have only been to three days this month. I am thankful for my boss who has helped me navigate the painful process of applying for FMLA. There is the FMLA administrator who lost my forms, and then once they have been sent to her a second time, she tells me that my FMLA expired March 10th. She tells me about her mother's cancer when I am packing my bag to go back to the hospital on the day of Melanoma Man's second craniotomy March 11.  I think she should not be in this job. 

Now in Tampa I am missing iMac, and Butter, and Cha. There are therapy dogs outside the lab. I want therapy cats, even if they might bite. MM is in the CTscanner right now. We will go through the Chik fil a drive thru on the way back to the hotel to get my lunch. Back at the hotel I will administer MM's midday medication. He will administer the tube feeding. He has mastered it. The meds are tricky because they don't want to stay in solution and easily clog the tube. He would need 4 hands to unclog the tube himself. I think about sending Uncool Wayne, as the kids call their Uncle Wayne, next week with MM for radiation so I can be with the kids, who I have barely seen this month.