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The End

Melanoma Man passed away on September 28th with the Laundry Thief at his side.

High Maintence with Dr. OC

So it turns out Dr. O's name actually starts with a C, but I am determined to call him Dr. O. Tonight he came in, surprised to see Cha, imac, Uncool Wayne visiting. He says he has never seen a cat here, just dogs. Probably because cats are often  non-compliant with entry into cat carriers.

The social worker still has a plan for discharge to home on Tuesday, hospital bed delivery Monday. Best news of all today is that Call Me Ishmael is still available to help us at home and is up for the additional level of care. As it turns out Ishmael is working towards becoming a Certified Nursing Assistant so actually looks forward to learning to care for a more complex Melanoma Man and to the continuity of staying with the same patient over time.

My boss is working with me to help me preserve my remaining FMLA

Homecoming Preparation

The wheels are in motion for MM's return to home. I need to clear out living room furniture: an old sofa handed down from my parent's retirement home in West Virginia. I remember taking MM there while I was still figuring him out before the first of two breakups. The figuring took me a good 20 years. Now I will move that old sofa out for good. I remember my Dad and wish he were here. Monday a hospital bed, wheelchair and other ecoutrements will arrive. Tuesday MM himself will arrive, barring further complications before then. 

Beagle Scouts and more

Yesterday was long. Melanoma Man was feeling good, awake, alert. It took a very long time to determine exactly what he was trying to say, but he was trying to say a lot. Molly leaves tonight Uncool Wayne arrives tonight. I worked a mini day: 9-2 today. Still trying to save my remaining FMLA days. MM is eating again and talking non-stop. I slept every night while Molly was here. Hopefully the same will be true once Wayne arrives. The docs at the inpatient hospice are buying me some time by tweaking his meds. That allows them to keep him longer. He still can't walk but can't remember that he can't walk. He cried off and on all day yesterday. The funny parts are still there. For 45 minutes he kept telling me " Mike Pence is a  Beagle Scout." I was thinking about Tippy and Tiger and other beagles I have known picturing them having their scout meetings. I don't think they would have let Mike Pence into their troop, do you? Surprisingly,  "Mike Pence is a Beagle Scout" actually means "Would you take my contacts out?" It took me 45 minutes to figure that out. I think they have the same rhythm, those two statements. Try it. Mike Pence is a beagle scout. Would you take my contacts out.

My Molly

It is Sunday morning. Melanoma Man looked a little better yesterday, a little more color in his face. I spent the day with him. My Molly, who is my birth mother, arrived Friday night. I don't talk about Molly much because I almost feel as if it will jinx her and none of it will be real. More often I feel disloyal, like a cheating spouse, receiving kindness I don't deserve. She took the boys to the beach yesterday morning, while my friend Kris brought over every cleaning supply known to man and two friends to help. Kris, Heather and Stephanie spent 3 hours cleaning my house, even steam cleaning my rugs. They made breakfast for us before the cleaning began.

When awake Melanoma Man asked to go home all day. On the drive home Butter asked, " is Dad still dying?" Yes. The social worker came to see me and discuss Medicare criteria for inpatient hospice stays. She was nice, but some of what she said wasn't true. While Dr. O had said they would keep MM until the end, the nurses and social workers are ushering us out the door. iMac is anxious. He says he doesn't know how we could do it, perform the level of care that MM requires. Social work has talked about a long term care facility. Images of my mom, stuck in her non- working body and unable to speak in the nursing for 7 years pop into my head. I reassure myself that this can't possibly go on for years. I get out the calculator to try to figure out the cost of a CNA at home to help me, upwards of $500 a day. I can't move him on my own. It always takes two people to pull him back up in his hospital bed after his 6'4" self has scrunched  down to the bottom of the bed. I tell myself to just take things one day at a time. I am able to do that only about 10% of the time. It is 6:49 am. I am about to get dressed to go see him. When I arrive each morning he is usually a little frantic, wondering where I have been during the night. I have slept better this week than I have since August 3rd, which is the day he returned home from his last hospitalization. 

Update from Dr. O

Whew! Yesterday Dr. C was here. Today Dr. O. Dr. O said "We are keeping him here. We can keep him comfortable. You can't care for him at home and the kids can't. I'm sure you've been fed information that has led you to believe that you need to care for him at home. This level of care is just too burdensome and cannot be expected of you." 

I had asked the boys bout their wishes and collectively they decided they would be most comfortable with their Dad dying at a hospice center rather than at home. Still I thought we would have to do a transfer back home in the interim and it worried me, how we could do it. Now that worry has been lifted and I am so thankful.

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...

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.

Time, stark, bright, white, fast

March 11: I left home more than a day ago, with Melanoma Man heading for the local ER. The family friend, C, who happens to be a physician stopped by for a visit and realized what I too knew, that MM was deteriorating. C was clear, concise, direct. She asked if she should leave, if she had said too much. I said No, he needs to hear it and not from me. We had some phone calls with Moffitt on Monday and Tuesday. There was talk of the right frontal lobe tumor being responsible for his new symptoms, facial paralysis, difficulty swallowing and difficulty with the fingers in his left hand, MM having faith in his Moffitt team didn't want to involve any other medical players in his care. He didn't want anyone else's advice, only Moffitt's and even that might not have been enough. He asked me to call his internist which I did, knowing I would get no useful response. They have no urgent appointments available with any provider. They can take a message. I say no thank you, knowing how long it will take for the message to get to someone with the skills and education to understand it. I am not too disappointed because I know this is not the help he needs. MM did hear us, the friend and I. He gave his explanation of why he didn't need to go to the hospital. After a few hours of mulling it over he said he was ready to go. C called her friend A at the hospital. A met us in the emergency room, ordered the head CT, had the radiologist and neurosurgeon on standby to review. They reviewed the CT and ordered an MRI. The frontal lobe tumor had doubled in size since 2/24/16 and the amount of swelling was just wow, so much more than the MRI I looked at with Dr. Etame just 6 days ago. All this with no headache. MM looked frail and seemed sad all week. It is hard to tell what portion of this is due to being worn out by fighting and what portion of his mood is injury to his frontal lobe.

March 11, at 8 pm, 27 hours after we arrived at the hospital MM was wheeled into the operating room in our home town, far from Moffitt, but in good hands. The surgeon is the father of one of imac's classmates. In years past we stood on the soccer field sidelines watching iMac and his son play soccer. I am relieved by the quiet of the surgical waiting room. Everyone has gone home. At 9:45 pm Dr. H came in. The tumor was out. 

On the fear of crying

Crying gives me a headache, so I haven't cried for awhile. The headache came anyway, last night in the Marriott, lying in bed next to Melanoma Man. Both of us not sleeping. We are supposed to be joyous and elated and we will be, but now we are just exhausted and disoriented. As if we have been to some far away planet and things changed here on earth while we were gone. We'll get home today to see iMac, Uncool Wayne, and Cha. We'll see Butter tomorrow when he returns from camping. I'm trying not to think about the upcoming week, but I have to. There is work. There is the job I didn't apply for last week because I couldn't get my head in the game. And there is driving. Melanoma Man is banned from driving, so there are a lot of places I need to get the kiddos to while I am at work.

The brothers in-law

My Mom passed away last Friday night with my sister at her side. I have received emails from all of the Anderson cousins with their memories of Mom from younger, happier days. I will clear out the memories of mom in the 17 years since Dad died and fill in the space with these stories and more of my own. Dad would have turned 88 this coming Sunday. I think they will celebrate together. The position at work that I have been waiting for just opened up. I am supposed to be applying online today or yesterday or the day before. I am at Moffitt Cancer Center in the Pre Anesthesia Testing waiting room with Melanoma Man. I can't get hooked up to wifi so the job application will have to wait until tonight after a day of waiting rooms. The brothers-in-law arrived yesterday. D, a flurry of activity, making biscuits, cleaning my kitchen, fixing my broken front door. W, who happens to be both nurse and lawyer, practicing with the Epi pen trainer in case Butter accidentally ingests pomegranates or pine nuts. Melanoma Man leaves a typed treatise on the kid's schedules. I leave a handwritten one. I purchased a tracfone for W, who will stay the whole time. W has a house phone back in North Carolina, but doesn't believe in cell phones. Since we have no landline at home it is essential. The kids will have to show him how to use it. 

An Eventful Friday

I got to work at 7:45 a.m. Around 8:45 my phone started making a strange sound, like an alarm, rather than a ring. I pulled it out of my pocket. It was Melanoma Man. I answered. He was crying. He said he needed me to come home because he was having a brain freeze. I got my things together, saw my boss in the hallway, who said simply "Go, explain later." She could tell it was emergent. On my way to the car I called Sara G,, hoping she would be at home. She was home and at the ready. I was twenty five miles from home, worrying that Melanoma Man might be having a stroke. My phone rang again. I expected it to be Sara G or Melanoma Man. Instead it was Azalealand, the nursing home my Mom lives in two and a half hours away. They had not been able to reach my sister and needed to know if we wanted mom to go to the hospital. Mom's oxygen saturation had dipped into the low 70s and they weren't able to get it up by administering a higher volume of oxygen. I hit the pause button to call Johnny Reb. I didn't want to be a consensus of 1. We agreed, no intervention. I spoke with the social workers. A few minutes later sister called. I relayed my thoughts, my conversation with Johnny Reb and she was in agreement. I think it is hardest for sister and I am not sure why. For me, as a nurse the hardest part is seeing people trapped in bodies and or minds that they cannot maneuver the way they want. Maybe she feels it is her responsibility to keep Mom alive. I felt it was mine for years until the survival of my own family took over.

I arrived home to find MM chatting in the kitchen with Sara G. He explained that he had had a 15-30 minute episode of word scramble, unable to access and produce the words needed to express the thoughts. It happened while he was driving imac to school. He was worried that imac would be scared. Sara G drove to school on my behalf to reassure imac.  I remembered my days as a Candystriper at Georgetown University Hospital. I was usually assigned to the Neurology floor. They needed a lot of hands on help there, with bathing and dressing and feeding. I remember a young attorney in her late 30's, early 40's at most, with short hair, Isabella Rosselini style, pretty. She had a stroke, The nurses felt she was lonely. She couldn't speak, but she could understand. She had a brightness in her eyes that followed your words. They sent me to keep her company, to tell her stories. So I sat with her and told her stories from my 14 years on earth. She cried. I think because she so wanted to speak.

Melanoma Man began cancelling volunteer commitments while I left messages for the Neurosurgery Team at Moffitt. Jen and Ruth and Robin called back, which was AWESOME. They collected information, relayed it back to Dr. Etame, called in prescriptions for steroids to reduce brain swelling and anti seizure drugs. They advised us of next week's schedule: pre op Wednesday, craniotomy Thursday. Tonight we will tell Butter. imac will be home late, playing flute in his high school band tonight for the Music Performance Assessment. We'll tell imac in the morning. I am wishing I could be in 3 places at once, Savannah with my Mom and sister today, home with my boys, and at Moffitt in Tampa next week.

Today Part 2

I was in the parking lot at Al's Pizza. Butter and iMac had just returned to the car with a medium half cheese half pepperoni pizza. It was 4:30. Melanoma Man's appointment with Dr. Etame was scheduled at 2:15. When I hadn't heard by 3 I knew the news was bad. My phone rang. It was MM. He asked "Are you alone? I mean with the kids?" I wished I was alone in France with Jason Statham from The Transporter, but no such luck. (We watched Transporter 1,2, and 3 last weekend.)Dr.Etame said that September's tumor has doubled in size and one of the others has grown too. He is offering surgery, but neither is eligible for laser surgery, more of the traditional craniotomy, removing a 4 cm panel of skull in one region and another panel for the second tumor to access the brain and remove the tumors. That's all MM said. He was on the way to his next appointment to see Melissa at the new Moffitt McKinley building. I got off the phone. Driving home the boys chattered about Minecraft and asked not one question. At home they gobbled their pizza. I had bran flakes. iMac and I were off to the college fair. It was a madhouse. My heart wasn't in it. Neither was imac's but for different reasons. I haven't told the boys yet, which is fine since I have no answers and no plan. Cha has jumped into bed with me and in typical cat fashion tried to prevent me from typing. MM should be home in the next hour or so.

Today

A day like any other, but not really. I had planned to accompany Melanoma Man to Moffitt today, then I looked at the calendar to see all the activities Melanoma Man would ordinarily take care of and decided I had better man the fort. We were both up at 5 a.m. I slept the night straight through without awakening and worrying. We sat on the sofa drinking coffee, watching the weather channel which predicts severe winds and rain today. MM was showered and out the door by 6:15. I started waking Butter at 6, purposely making a racket in the kitchen. Wake up can sometimes be turbulent, but today it is not. I wake imac at 6:30. Butter is out the door at 7. I deliver imac to driver's ed at 7:55 a.m. Then I return home to do dishes, start a load of laundry. I do errands on my way to my routine mammogram. Figured I may as well get some of my appointments taken care of on this day off. I receive my first text of the day from MM around 10:20. He has arrived at Moffitt and is getting his wristband.

On the way home I stop at Rack Room Shoes. I am searching for a pair of black dress shoes that will fit Butter for the band competition on Friday. Another text alert received "IV access," then "CT scans done." MM will have an MRI of his brain at 12:30, then lunch in the hospital cafeteria. He's not allowed to eat before all of his scans, nothing except Banana flavored contrast medium. His appointment with Dr. Etame is at 2:15, then an appointment with Melissa in the Cutaneous Clinic at 3:15. They are outgrowing their buildings, so the Cutaneous Clinic has moved to a new building, a 10 minute drive from Neuro-oncology. Dr. Etame is usually running late, always for good reason, viewing the MRI, consulting with the radiologist before meeting with Melanoma Man. It sounds reasonable to have an MRI at 12:30 and a Neuro appointment at 2:15 pm. Usually it's not enough time to get the radiologist's reading, so things run late.

Meanwhile I am home, washing sheets, putting things away, waiting. I'll pick Butter up from Youth group at 3 and hope the shoes fit, drop him at the library for Algebra tutoring, meet imac's bus, take imac to flute, pick Butter up. Then home for dinner, which I have yet to plan. I'll be off again by 5 with imac, to the college fair at the high school. Somewhere in the midst of it all I will get news by text from Melanoma Man, good or bad.

Getting My Head on Straight

Since last summer I have been meditating and doing yoga, trying to reach some kind of solid ground or equilibrium which I can return to after a day's work. It has been helpful, but sometimes desperate. The episodes of tension headaches(which look a lot like a migraine to an outsider) had increased from my usual average of once a year to one every three weeks. Sleep had become a luxury at this point. Although tired I was spending hours in bed not sleeping each night. I stopped reading books, checking email, making things. There was just enough energy for me to ration out for my work day, but not enough left over for life. Finally I came to the conclusion that my attempts at equilibrium weren't working. This is not really a new story for me, but one that has played out over and over again in my life as far back as I can remember, which is age 3. It is no one's fault. Sometimes it comes out of nowhere. Sometimes it is triggered by a life event. I have taken it to the professionals many times, which has been difficult because it makes me feel like I haven't tried hard enough.

So a few weeks ago I found myself on the couch again, in Virginia's office. Virginia is a psychiatric Nurse Praactitioner, who came highly recommended by a psychologist I have seen for counseling. In the small world category, we both attended nursing school in Washington DC. We had some shared hospital experiences. Today she is training a student in the nurse practitioner program at University of Florida. The student asks all the questions, takes the medical and psychiatric history. It is painful and a bit awkward because it is an art the student has not yet mastered. That is why she is here, to learn this art. At the end of our hour we decide to discontinue the Prozac, which I have taken daily for 24 years, with 3 unsuccessful Prozac holidays during which I tried to go it alone. We decide on Cymbalta. So I am 4 weeks in to the Cymbalta. I am sleeping. I wake up in the morning feeling pretty good. There is no longer that feeling of dread when morning arrives.  I am reading Tattoos on the Heart by Gregory Boyle. This time I think I will finish it before the library due date.