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.

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.

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.

The Visitors

They came from Atherton California, Reno, Nevada,  Phoenix Arizona, Birmingham Alabama, Baltimore Maryland, Washington DC, Westfield New Jersey, Reston Virginia, Westbury Connecticut,  Boston Massachussetts, and Portland Oregon. Ostensibly they came to row, an annual rowing reunion of the class of '71, of which Melanoma Man is a member. The one thing I had in common with them was Melanoma Man.

The rowing reunions started in 2002 after Steve's funeral. Many hadn't seen each other in the 31 years between college graduation and Steve's death. So it was decided then and there that they would meet annually. Due to raising children and working I had not attended the rowing reunions previously, but Melanoma Man was quite faithful in his attendance.

This year they came to us in Florida. They tried to come last year, but Melanoma Man discouraged them saying, "you are just choosing Florida BECAUSE OF THE CANCER." Seems a good enough reason to me. This year he acquiesced and it was good. I was intimidated by the idea of it all, by the idea of the wives, by the idea of how my life and specifically my living room might measure up to theirs. Me and my leaky roofed rental house, complete with tarp and sandbags to keep the rain from coming in. Growing up I was the behind the scenes support team for many events hosted by my Mom and Dad. They were great entertainers, so that backdrop loomed in my head as well. Enough is what it all comes down to with me. Am I enough. On my own the answer I usually come up with is No.

MM spent Monday through Thursday shopping and cooking. I tried to catch up on the hopeless task that is housekeeping, without being grumpy, angry or perfectionistic. I got home from work Thursday night, entering our house as I always do through our ping pong, pantry garage, laundry room. The front door has been broken for three years, so the only way in the front of the house is via "le garage." I glanced into our living and saw the IV pole, still up from Melanoma Man's infusion earlier in the day.

In the kitchen nine people plus my three people greeted me. I had met Kathy & Mike, John & CJ, Bruce, Don 13 years ago. Skip, Linda, Karen were new. I chattered nervously, pushing worry away, trying to remaining open and awake to all the people. I had seen a post on Pinterest earlier in the week that said simply, " Let's just be who we really are." Sounds simple, but still hard for this hostess with an IV pole in her living room. Gwen and Ron arrived around 7:30, straight from the airport.

Mike and Kathy had taken charge of renting two beach houses. Mac had cooked Thursday night's dinner. Karen cooked Friday night's dinner. Oz and Vicki had dinner catered Saturday at one of the beach houses. Friday Karl & Terry, Rob & Nancy, Bob and Jay arrived. Saturday Vicki and Oz arrived. 

 On Saturday night Oz presented a toast to me and Melanoma Man with wishes that we'll get to go around the board again and again. Vicki presented us with a corresponding Monopoly themed mug. I knew that they understood how hard this journey has been and will continue to be. They did not avert their eyes but took us just as we imperfectly are. I didn't know most of them at the start of the weekend.  I came to feel like these are my people by the end. That sense of community and love surrounded us. 

Things that Blew Me Away Last week and This

Every weekday morning I get up at 5, turn on the coffee maker, which has been preloaded with coffee grounds and water the night before by Melanoma Man. I spend an hour watching the weather channel, checking Facebook, reading the Skimm. At 5:45 I hit my fast forward button and spend the next hour getting myself, one kid and three lunches ready. The other kid gets ready after I leave for work.

MM had been feeling "under the weather" over the weekend, very short of breath, chills, aching all over, no fever yet, but getting a little cranky. I am friends with many of MM's cousins on FB, since MM won't use FB, it's how we keep up with some of the family and they with us. Cousin Ella had posted Lennon and Maisy singing "That's What's Up." I liked it so much I downloaded it onto my phone and listened to it on my way to work. It came in handy all week long. MM would be cranky with me for helping or he would be cranky about forgetting something or someone. I would sing a line from the song, many of which I now know by heart from the extensive car singing rehearsals I have been conducting. It was a tiring week, which culminated in nothing in particular being wrong. Let's call it a Dabrafenib storm. He has had them before as a result of this miracle drug and he will have them again. The trouble is they look an awful lot like coming down with something dreadful. I don't sleep well on storm weeks. I wake up, and eyes closed listen to his breathing, assessing the sound and whether it just requires monitoring or requires eyes open and action. He reads books, lots of books and plays solitaire on the computer, and does puzzles during the storms. He does not ask for help, or shop or cook. He doesn't want me to shop or cook either because it makes him aware that something is happening and we don't know what yet.  He thinks, maybe tomorrow he'll bounce back, but they usually last 5-10 days, not one. I make helpful suggestions like, " maybe you should give Dr. Array a call?"  I send him helpful emails that recap his symptoms, hoping he'll send them on to one of his health care providers. Honestly I can't tell. Does this the shortness of breath look like a pulmonary embolism, pneumonia, plain ole worsening alpha 1 disease, or is it pneumonitis from the drugs. Since I can't tell, have no lab in my living room, no X-ray or Ct scan or radiologist for that matter. I always wish he would consult the pros earlier than later. It is hard and tiring work being married and being nice, but Lennon and Maisy helped me to be nice. Then yesterday work colleague KW showed me this: Blind Devotion. She said I would need tissues. She was right. Last night I showed it to MM. We sat on the edge of the bed, tissues in hand watching it on my iPad, tears streaming down. Then he said this: Thank you.

Nobody Bothers Me or Why I am addicted to The Americans

I am madly in love with both Downton Abbey and The Americans. Downton Abbey is a wonderful escape into another world, for me almost like visiting a museum. It is full of clever quips, such as Mrs. Patmore's "Sympathy buttered no parsnips." The boys and I enjoy inserting little Downtonisms into our current day conversation. It's a weekly challenge. Usually it is Cousin Violet, played by Maggie Smith, who provides our phrase of the week.

I shared my love of Downton Abbey with my work colleague,TW. She, in turn, offered me The Americans. I watched seasons one and two in January so I could get up to speed in time for season three. I am utterly and entirely hooked, in large part because I was born in the 60s, grew up outside Washington DC in the 70's and 80's, when there were five television stations. The Americans has managed to work in all the appropriate cultural features of the place and time, including this advertisement which was routinely featured on WTTG when I was growing up. You will also notice the soundtrack, cars and clothes in the Americans are just so, Most familiar is that feeling perfectly captured of living two lives, one the day to day routine, the other a desperate battle.

On the surface the main characters Elizabeth and Phillip are small business owners, trying to raise a family. They do a lot of laundry, another reason I love the show. Their other story as KGB agents secretly living as Americans, puts them in constant peril.

Today I am the working Mom, taking a day off, at home on early release day, so I can pick up Butter from swim practice and iMac from band, bake Apple Pie Breakfast cake, make dinner in the crockpot, do an extra load of laundry. I am waiting for Melanoma Man's report from Tampa, after today's brain MRI and neurosurgeon visit. Everything is fine right now. I try to be in the right now.I can't remember what I had planned today besides laundry and dinner. I don't know what to have for breakfast or lunch. The phone rings. It is Butter, not feeling up to swim practice today. Then rings again, it is Melanoma Man. MRI is running behind. It is 1:20 pm and his 11:45 am. MRI has not occurred yet. They send him away to go get lunch. Back from lunch they give him an estimated MRI time of 3 p.m. His appointment to review the MRI with neurosurgeon, Dr. Etame, is at 2:45. Looks like this is going to turn into an overnight trip possibly. He hasn't taken any of his medications with him. I am warding off a headache and trying not to throw up in anticipation of news good or bad which may or may not come today. Telling myself I can do this, good or bad, together or alone. I can do this.

Locked up and the Key Dropper

Last Thursday I went to hear this woman speak at my church about forgiveness, grace, addiction, faith, doubt, and fear. Nothing too heavy really. She dropped a key, another key to unlock my heart, so I can move directly head on into the fear, which is unfortunately where the miracles happen. I was supposed to go with Melanoma Man. However Butter was in crisis. The crisis was the misplaced worksheet. MM and Butter both told me there was no use looking. They had already done that. There were dried tears and a floor strewn with papers. iMac was getting ready for karate at 6:20. I told MM that one of us needed to stay home with Butter, that he shouldn't be left alone in this emotional state. MM volunteered to stay behind. "Call MK, see if she wants to go," he said. I was hesitant because MK is so nice, and Southern, and just a tad more conservative than I. She has been one of my biggest supporters through thick and thin and in spite of me being a Yankee. I called anyway. MK had to get get her child to band and serve dinner to husband and mother. "No, I don't think I can, but thanks."

Ten minutes passed and I noticed I had a voicemail from MK. YES! She said YES! I saved a seat for her. We listened and nodded and laughed and everything seemed to apply to all of us humans out there, old and young, conservative, and liberal. 

What struck me most was the part about being moved toward what you most fear. It occurred to me that I have been hiding these past few months, locked up in my own heart. Glennon talked about going to church anyway even when in doubt, waiting it out. Seeing that God has been sending invitations all along. It's just a question of my willingness to open the invitation. I think how can I possibly not run from my fear of MM's illness, fear of raising these boys by myself. How will I get out of bed in the morning if I allow it. I realized that this little piece of internet lets me face it, move toward it, stay present for the people who love me and the people I love. So in spite of making myself this visible, and this open to judgement I will carry on.

Yesterday MM, iMac and I went to see an educational specialist. iMac has the same absent, busy, creative, wandering, mind of both his parents. This year that has gotten in his way. He has done the work, although not always following the directions, not always remembering to hand it in. There is no leeway for late work in high school, just another zero. iMac is getting discouraged. After two moms from two different walks of life recommended the same specialist we made an appointment. I thought of talking to MM ahead of time and requesting that he disclose his Cancer diagnosis. Then I scrapped the idea altogether. We would just get in a fight. He would dig in his heels and be angry and that would color his whole impression of the specialist and whether he could help us help imac.

Lots of questions were asked of both of us, such as our age, our high school, and college GPAs, etc. MM said he was sixty six, which is close, off by a year. Later that night we debriefed about the meeting I mentioned to MM that I think he is only 65. MM did the math and said, "Yes you are right." He asked me, do you think I should have told him about the Cancer? I was stunned, but played it cool. "That might be an idea," I said. MM replied, "I will email him about the Cancer." Specialist emailed back quickly, thanking him for this important piece of information about a potentially major stressor in iMac's life.

This morning I met with my Stephen minister at 7 for our usual Saturday morning beach walk. The sun was coming out after five days of gray. I returned home around 8:15. MM was in Butter's room talking about a book they are both reading. Back in the kitchen I asked MM how his morning had been. "Terrible Sarah. Yesterday I forgot how old I am. This morning I couldn't remember the name of the operetta my sixth grade class performed. I think I'm losing my mind again."

"I've been thinking that if I need to have more brain zaps, I want Dr. Rau to do it, even though he is not at Moffitt anymore. We can look him up and go see him in his new practice in Orlando." MM said.

"Yes," I said. I accepted the invitation to show up and be scared and listen and allow him to process the events of the week. I neither directed, nor fled, exhausting. After all that I took a nap. I have a title to maintain, given to me by my family, the Snooze Queen. These titles are not just handed out. You must live into them and so I did.

Happy New Year!

It is 2015. Surprisingly I am having no trouble writing 2015. I suppose I must have been ready for this one. I had a wonderful Christmas break. I took 3 days off Christmas week and 1 day off New Year's week. I didn't worry about lunch boxes, planners, homework or backpacks for two weeks. I binged on Downton Abbey during the month of December. I have always been a late bloomer. I felt the need to catch up with other Downton watchers before Season 5 started on January 4. Such lofty goals I have for myself. Speaking of goals, I am not having a New Year's resolution this year. Instead I am having a goal. My goal is to relax more. Downton Abbey aligns nicely with my aspirations for 2015.

I have been starting most days with coffee and the daily reading from Forward Day by Day, doing some Tai Chi here and there, saying my rosary now and then and art journaling. None of it on a particular schedule. If I create a schedule for these activities it will defeat the purpose. They will become resolutions, instead of goals and they may cease to produce relaxation. 

Melanoma Man got tickets for us to go hear Glennon Melton Doyle, one of my heroes, speak next week! I am ecstatic. MM returns to Moffitt Friday for "the usual," which involves labs and physical exam and usually no Big News. His next "Special," involving CT scans, MRI and often times "News," will be at the end of February.

Update from Friday's visit to Moffitt: labs are good, and no new findings on physical exam. 😊

Public Speaking- part 2

The night after my failed rehearsal for Melanoma Man I decided to try a different audience. While MM transported imac to Karate, I practiced my presentation in my living room for Butter. I received a favorable review from this twelve year old boy, although somewhat biased in my favor. "Mom, I liked it. I liked it because you have logos, ethos and pathos." I looked at him quizzically. He restated it, "Logic, ethics, and passion. That's from Aristotle Mom. I like him because he's from way back when, but his ideas are still accessible today." This is my kid?

Last night imac saw me doing dishes and heard me say I needed to do a load of laundry next. "I can start the laundry for you Mom." This is my kid too? It's extravagant really having these two. They are stepping up.

Back to the conference. I think it went well. Lots of questions at the end, a few nice remarks from colleagues. I'll find out more on Friday at our debriefing meeting. The big boss will give us our numbers from the written evaluations.

Tonight is another night before Moffitt. Melanoma Man left this afternoon, arriving at Moffitt around 4:30, in time to drink his oral contrast and receive his IV contrast for his 5:30 CT scans. In the morning he'll have labs and an MRI of his brain. Afternoon will be appointment with the neurosurgeon, who reviews his brain MRI, and then oncologist to review CT scans and labs.

This afternoon Butter texted me at work to tell me that he was home from school and has been freezing cold since third period today. He also mentioned flannel pajamas, a hoodie and four blankets were keeping him warm. Uh-oh. I left work early, 4:20, thanks to gracious co-workers. Sure enough Butter's temp was 101.

Originally I planned to work a half day tomorrow, but texted my boss to say I will be staying home with Butter. Thinking about morning I realize the adjusted plan means I don't need to get up at 5! Oh the luxury. I will sleep in until 6!

Tomorrow evening I have my second appointment with an acupuncturist. I've done this before, about 22 years ago so it doesn't give me heebie jeebies, as it might to others. It just purely makes me feel good, and sometimes feeling good can be hard to come by.

When fear knocked, Faith answered

I think of this saying often, as fear knocks on my door quite frequently. It doesn't so much matter if the fear is reasonable or unreasonable, the feeling is the same. Right now fear is trying very hard to break down the door while faith is sleeping. Wake up faith! Wake up! We are only one week away from the next CTscans, MRI, labs and doctor appointments. It is good for me to be busy during these times. I am about to have a four day, work-free weekend, I will try to show up for the kiddos, to be willing to play, to keep the faith instead of retreating into my own mind. Wish me luck.

Life is Funny

So Melanoma Man has gotten three job offers in 3 different second or third world countries in the last three months. It's not that he is looking for a job, not that he has sent resumes out, not that he could even go.  I remember how much he sparkled when he was working, how engaged he was in his work, how excited he would get about electricity and gas, energy generation and distribution. I wish I could give that back to him now. Even MM with all his optimism knows he wouldn't be able to walk from the curb to the ticket counter at he airport without respiratory distress and stopping to rest to catch his breath several times, that he wouldn't have access to the zillion dollar drugs and doctors that are sustaining his life now. I remember our first visit in 2011 to Dr. C/ pulmonologist extraordinaire. We talked about options, Alpha 1 replacement therapy and lung transplantation. As it turned out his lung function numbers at the time weren't quite bad enough. Dr. C thought based on his trajectory that Melanoma Man's numbers wouldn't be bad enough until he aged out for the transplant list at 64. Even so, Dr. C told us he would go to bat for MM, as all his other health measures were so good at the time. He thought he had a good chance of talking the transplant people into getting a lung or a pair of lungs for MM when the time came. "But," he warned us," it will put you in the poorhouse." Dr. C has always been a realist about money. He told us the full retail price of the Zemaira before MM started it. He told us we would likely pay a large sum of money each year for Zemaira, much less than retail, but still daunting. That it would not be unreasonable if Melanoma Man decided not to do the Zemaira due to cost. We did it anyway, but were grateful that Dr. C is a realist. The arrival of the Metastatic Melanoma made all of the transplant speculation irrelevant. Truth is the primary melanoma in 1998 might have disqualified him anyway. I liked to think the melanoma was ancient history, a non-issue. I decided to think that even though he had 8 additional primary melanomas in the interim. It was totally illogical of me. Much as I didn't think about a lung transplant, I secretly did think about it. I thought about all the things he could do with the boys with a set of functional lungs. The lung transplant was going to be our back door. And so it is that I am lying here in bed crying because the back door is closed and we can't go to Bosnia, knowing all the while how ridiculous I am. Goodnight.

A funk, lifting perhaps

 The other day I came across Glennon Melton's thoughts about funks. It made me smile both because I have been in one and because she referenced Tone Loc's Funky Cold Medina. My funk started in September, right about the time I switched to the NEW SHINY job. It's a great job, much less stressful, better pay, better benefits, great co-workers, less despair, less cynicism, less to worry about. There is a revolving front door with 2 of the four compartments set up with seasonal displays. Quite a contrast with the old job's front door which featured a sign that said no firearms or knives, with the addition of pictures in case you can't read. 

But you know I am a professional worrier and so I do worry. I worried about those I left behind, patients and colleagues. Would they think they weren't important, that none of it mattered to me, that they didn't matter? Would they give up their tiny little glimmers of hope, clutched tightly, hidden in a hand? Had I mattered to them, made any kind of tiny difference?

At the new job there is some visibility of my baggage, but mostly I am ON all day, baggage tucked neatly under my desk, barely visible. It is a big drain on my energy, huge in fact. I don't cry on the way to work because I don't know these new folks well enough to let them wipe my tears.

My next door neighbor's daughter had a baby girl two weeks ago. She moved in full time with her Dad next door right around the time her pregnancy became visible. She is twenty something, certainly she is old enough to have a baby and be a Mom. Her Dad put a balloon up on the mailbox: "It's a girl!" I sent a welcome baby card and received a nice card back. We chatted in the driveway about babies and umbilical cords and car detailing. She is starting her own business. It makes me happy to see her bravery and her her dedication to this new life.

I thought back on earlier funks, in particular my post baby funk. I couldn't fit shoes on my bloated feet, only slippers, refused to take narcotics after hospital discharge. I had underestimated the amount of Fentanyl still circulating in my body at the time of discharge. No problem I can handle this post C-section pain- piece of cake. Until 12 hours later, and then 24, and then 48, by which point I was pretty much raining tears most of the day. I had this beautiful, gorgeous little leprechaun of a baby, a miracle. And I was horrible, and fat and ugly, and lost and bewildered and I would NEVER be the same!! I explained all this to Melanoma Man along with the minor detail that I had forgotten my Prozac for two days in a row. The mere fact of forgetting launched a whole new wave of tears and caused me to aspirate the Prozac I was now remembering to take. Then I was sure it would burn a hole through my lung or aspiration pneumonia would ensue and what have you. Melanoma Man listened, suggested I take the Percocet, said goodnight and fell sound asleep. I was of course infuriated and misunderstood and all the drama. I came to know what he already knew, that I would never be the same again, but that I would be better.

Last Sunday at church, just the two of us. News of another cancer warrior who just got the news, "there's nothing more we can do." Melanoma Man looks as pale as he did when news of cousin Roy's death came. We had breakfast at church and were treated to a " Bless your heart," which I have always had trouble with, but now I understand why. The bless your heart people are insulated, standing on the shore, watching you bailing out your boat with the assuredness that  this will never happen to them, to their high quality boat. It is pity that is bestowed by "Bless your heart."  Mrs. Bless Your Heart introduced me to her visiting parents. "This is Sarah. She has the most precious boys. And Sarah is a...  What are you? A nurse? Oh I thought you were something more." All this on the Eve of nurses week. It makes me want to be mean. It is why I like to go to the service and then run for the hills rather than stay for breakfast or Christian formation, otherwise known as Sunday school. I am afraid I might get formed into someone like her. I have decided not to have hurt feelings, but instead I will conjure up a vision of Dana Carvey as the Church Lady every time I see this woman. That makes me smile.

Melanoma. Man's spirits and ambitions are high. He has volunteered to share the job of Scoutmaster for the Boyscout troop with another Dad. It keeps him going, being needed by the boys and watching them all grow. He is feeling better, the best I have seen him in two years in this medical limbo called "disease progression free survival."

Dreams have returned after a long absence. Three Saturdays ago I woke up feeling not quite right. MM was wary of me and asked "what's up?" Nothing I replied. " it's definitely something," he said. After a few minutes I realized I was trying not to cry. A few more minutes and dreams from the night before started floating by. I dreamt of my house filled with roaches. We call them Palmetto bugs here in Florida, but they are really just abnormally large roaches. Just behind the veneer of that dream-a dream that the angels are coming soon, not for MM, but for someone else, likely a former patient from the old job. I told MM about the angels and he said " what does that mean?" I know that if you have to ask, then I should not explain it. I let him change the subject.

Mother's Day weekend coincided with our sixteenth wedding anniversary. We hung out at home due to me having cold/cough/ sore throat. The four of us did simple things like take a trip to Ace hardware to get seeds and marigolds and then plant them together. Melanoma Man and Butter worked on a science project. MM told me how envious he was of his elementary school classmates who got help from parents with homework or even had conversations about school with their parents. I see him getting to do with our boys all the things he missed doing with his parents.

The Miracles This Month -my Messy Beautiful Life

Golf was this month's first miracle for my dear husband Melanoma Man. We are 20 months into his journey with metastatic melanoma, which is about 11 months more than predicted. MM's friend Jeff invited himself down to sunny Florida from his home in Connecticut about a week before the proposed golf excursion. I became suspicious of an impending house guest when Melanoma Man complimented me on "having a good attitude" about our recent visitors, Wayne and Rob. In the next sentence he announced that Jeff would be coming to stay with us in a week. "Fine,"  I said, "Just let Jeff know that I have raised the bar as a result of Rob's recent visit. I now expect all house guests to iron and do dishes or other assorted chores." Wayne did dishes too, but more importantly he was second in command on the all boys road trip to Orlando.

Jeff last visited about 14 months ago. MM was chock full of tumors, just 2 months into treatment. He rode in the cart mostly during 2013's golf weekend. This year MM played 17 holes on Day 1. He came home super happy on day two, having shot 40 on the first nine with two birdies. 

Melanoma Man stayed at the Cancer Hotel in Tampa last night. I can't remember the actual name of the hotel. I just remember sitting by the pool last June watching Butter and iMac play. I remember meeting lots of people by the pool. All of the people I met either had cancer or were there with a loved one with cancer. I wasn't alone anymore. They were part of my tribe even though we had just met.

On the home front last night Butter said he might kinda sorta believe in God again just a little bit. He told me his miracle story. The school book fair had been a bust. He had already read everything in his age range. After school Melanoma Man had taken the boys to the public library to do homework. Three brand new books at his reading level. He checked out all three. He said he thinks God sent the books. I think so too. By nine o'clock. butter, iMac, Cha Cha and I were tucked into our beds, having said our prayers that there would be another miracle for Melanoma Man today.

Melanoma Man was home by 5:45 p.m. today, having been scanned from neck to pelvis, blood drawn, laying on of hands, medication dispensed. Again another miracle for us. No new tumor growth. All existing tumors stable in size. Tonight he was in bed by 7, as he was for the two previous nights, still recuperating from last week's golf.
This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE.

Garbage Day- Good Life

Today is garbage day. I missed it last week. I lost a whole day last week. Monday night Melanoma Man's brother Wayne arrived from North Carolina. It was spring break for Butter and imac. Melanoma Man had promised them a trip to Universal and Aquatica in Orlando in the hopes that Wayne would be able to join them. I don't have enough time off at the newish job yet to squander precious leave hours on spring break. I'm saving them for summer or sickness, never sure which. I've started to think amazing thoughts like maybe Melanoma Man is going to be around to see imac learn to drive, to see Butter start high school. Stuff like that. I get carried away and then I feel greedy. A voice inside my head says "isn't finishing elementary school and middle school good enough for you girl?"



So last Monday Wayne arrived around 6 pm at which point Melanoma Man advised him of the plan. No previous mention of a roadtrip to Orlando had been made to Wayne. I felt like I was in good company with Wayne, someone else who would understand the constant surprise elements introduced to life by Melanoma Man. Wayne was relieved that he would not be spending the two days with Mickey and Minnie. They played miniature golf at Pirate's Cove, swam in the hotel pool. Butter and imac went on all twelve slides at Aquatica.



At two o'clock early Tuesday morning I awoke with a headache in my left eye, neck, cheek, shoulder, the beginning of a tension headache for me. I took Advil. I applied heat. I got out Bob Anderson's Stretching Book to try to halt the storm. It was too late. The vomiting started around 3 a.m. and carried on until about 11 a.m. I called in sick to work. Melanoma Man, Wayne and the boys left for their adventure around 1:30 Tuesday afternoon once my storm had passed. My storms are familiar to me. I've had them as long as I can remember, although their frequency varies. It is my basic stress response, although I have a variety of other charming responses as well.



Thursday night Melanoma Man tentatively broached the subject of my headaches and vomiting episodes, which have only been two in the past 6 months. He suggested that I work on "acceptance." I refrained from hitting him with a shoe or a dictionary or any other household object. Instead I realized that what he meant to say was "I love you." Next he asked if maybe I would just possibly consider thinking about going to see a psychologist/Ginny, pretty please? Ginny helped me through the aftermath of the war evacuation from the Republic of Georgia during the Russian/Georgian war in 2008. I saw no combat, but it was a life upheaval to say the least.

I had thought the headache/vomiting episode through pretty thoroughly. I decided that right now I have to do something routinely, not just when I feel bad,not at the eleventh hour, not after all the laundry and chores are done to calm my mind and soul. I told Melanoma Man that life is a roller coaster and I am going to try to find a way to stay calm and centered on this roller coaster. Waves of headache and nausea returned on Friday, abated, returned on Saturday. I scheduled a $40 introductory offer massage on Sunday to undo all the kinks in the muscles of my head, neck, shoulders and back. Monday night and Tuesday night I spent an hour before bed on a Yoga/stretching video. I slept better Monday night than I have slept in two years. I'm still considering the psychologist/Ginny, but I didn't want to throw $160 at her so she could tell me to do things I know I need to do. If I fail to do them repeatedly I have committed to go see her. So all of that thinking and headaching and what not made me forget to take the garbage out last week. Double garbage and recycling today. I took it out to the curb last night for good measure.



Up at 5 this morning, I made chocolate chip muffins for the boys for breakfast. I did sneak some flax meal and whole wheat flour into the muffins. I left with imac at 6:45 a.m. for the bus stop. Melanoma Man left at 7 for Tampa. Butter spent an hour in the house by himself and then got himself to the bus at 8 a.m. Both boys home by bus this afternoon to an empty house for the first time. They texted and called and did homework and what not. Growing up. I left work at 5. Good news from Melanoma Man in Tampa. His brain MRI shows only 1 of the original 8 brain tumors remains, still shrinking on the Dabrafenib and the Mekinist. I picked up pizza on the way home. The boys finished their chores, while I finished breakfast dishes. Homework done, I told them they could watch a little tv for a special treat. They chose Scooby Doo. I remember watching Scooby Doo on Saturday mornings forty plus years ago with Johnny Reb. Something reassuring about Scooby.



Then this song started going through my head, so I am sharing it with you:

I was wrong! and Ramblings about my week

The visit from Melanoma Man's friend R turned out to be actually good. Yes indeed, my initial assessment was incorrect and colored by my own insecurities. After the first 24 hours R had finished with his story. The story of a divorce he didn't particularly want from the woman with whom he shares two children, six grandchildren and almost 4 decades of memories. By day two he began to notice the fight Melanoma Man is fighting and he began to help, doing dishes, ironing imac's shirt for his band performance. He and Melanoma Man chattered with each other like a couple of elementary school girls. I could see that it was healing both of them, lightening their hearts.

My initial objection was that MM invited his friend to stay with us without discussing it with me. After 15 years of marriage this really shouldn't surprise me.Then all of the usual insecurities rained down on me. There's too much evidence of who I am in this house, too much evidence of shortcomings, things started and not finished. It doesn't look like the house of a person who has it all together and of course I don't. Then there is the mending of people. I am a people mender and sometimes take too many under my wing. R didn't seem to be any more or less broken than the rest of us.  If he was casting judgement on my homemaking skills it certainly wasn't apparent.

This week my supervisor, D said she wished I would apply for the nurse manager position. I said NO. A big part of the beauty of this job is that it is not stressful. Of course the nurse manager position would be more $. At 4 o'clock Friday afternoon the clinic refrigerator died. It is kind of a big deal because it meant quickly finding a suitable amount of real estate in another refrigerator to preserve a whole lot of temperature controlled medications. D and I rearranged and found a way. D had to stay late to make sure the new refrigerator could maintain the appropriate temperature. I was able to leave on time which was important on this day because iMac was performing as part of his middle school wind ensemble in the state music assessment. I got there in plenty of time and I guessed correctly sitting in the center third row with a perfect view of iMac. We stayed until 8:30, long enough to find out that their wind ensemble earned a Superior.

 A hectic Friday morning as Melanoma Man departed to Tampa and R departed to the airport.  I took Butter over to faithful friend MK, along with all his school stuff, and camping gear for the BoyScout campout. MK picked up both boys from school. She delivered her son and iMac back to school at 5 so they could board the bus with their fellow band members, en route to the state assessment. Her husband delivered Butter to church with camping gear to depart for the camp out. I finished work  at 5 and drove straight to the band assessment. Melanoma Man returned from his appointment with The Weber/Moffitt a little after 10 p.m. with a good report.

Saturday morning Melanoma Man drove a batch of Boyscouts, including iMac to meet up with their fellow campers. MM was home by mid day. We had a rare afternoon, evening, night and morning to ourselves. The last time we had this luxury was the first week of July when I took Melanoma Man to Tampa for stereotactic brain radiation surgery. This weekend alone was different, we weren't encumbered by the urgency of staying alive. We went to Bonefish Grill for dinner. We talked and talked and talked and just enjoyed hanging out with each other. Melanoma Man felt exceptionally well. And it was good, just pure goodness for both of us.

Anxiety-how much?

How much anxiety is just right? I have wondered this over and over again in the past few months as I try to titrate just the right mindset. On my bedside table I have books and more books. Here's what the current stack is comprised of: The Hero's Journey by Joseph Campbell, The Reenchantment of Everyday Life by Thomas Moore, Magical Journey by Katrina Kenison, God's Hotel by Victoria Sweet, Love Wins by Rob Bell. A set of rosary beads and a set of prayer beads, an episcopal equivalent tucked into a little box labeled special things. 

Two Sundays ago at the grocery store MM was moody and decided to sit on a bench and wait for Butter and me to finish shopping. The next morning he awoke with a headache at 3 am and took ibuprofen for the first time in 6 weeks. He had never had a headache in his life until the first set of brain tumors. The headaches retreated dramatically after both rounds of radiation. His breathing is significantly improved. He's started making brain tumor jokes again. I can't tell if the jokes are generalized nervousness or a cover up. The coffee pot has been left on twice and two pots have been burned on the stovetop. Last night he called me regarding evening logistics of kids, homework, a meeting at the high school and a meeting for Scouts. He was surprised by my plan to drive directly to the high school to meet iMac there. Melanoma Man had devised the plan the night before. I try not to read too much into these incidents. 

February 7th there was an appointment with Maria/Oncology nurse Practitioner,  MRI of brain, CT scans of chest, abdomen and pelvis.  The suspense is painful, tedious. I would just like to take a nap for 3 days leading up to these marathon medical appointments.  That's reasonable right? A 3 day nap. Instead I arranged lunch with Nancie, member of my personal advisory committee. 

On the day of the medical marathon around 3:30 pm, Melanoma Man sent me a text, stating that with it being a Friday lots of people leave early and thus we would have NO CT or MRI report until Monday.

Five minutes later another text, "the scans are good." I couldn't fathom how both of these could be true. I picked up the phone a minute later, finding texting an inefficient mechanism for discussing something so important. On the phone MM said, "The MRI is clean!" "What about the CT scans?" I asked. "Won't know until Monday." I was reminded of Patient #1's post about waiting days for scan results. 

At home MM proudly presented me with the official MRI report, like a kid with straight As. Two things caught my eye. The phrase "no priors for comparison" and the presence of brackets. Sloppy Friday afternoon work. There were at least 4 priors for comparison. The brackets were vestiges of a multiple choice drop down menu that had not been completed. Inside the brackets the word "blood."  But was that the word the radiologist really meant to select. If the selection were complete the brackets themselves would disappear from the document. I told myself I was being nit picky, anxious, a worrier. Put it down Sarah, stop, let it be.

The following Monday night, home from work, MM's phone rings. It is Maria returning his call from earlier in the day. I hear him say "Maria- two questions: why does it say there are no priors for comparison? And what do the brackets mean?" It makes me smile. There's my boy. There is his analytical mind and my worrying, which I haven't shared with him, is not so foolish after all. Maria promises to take the films to the radiologist who read the first four for comparison to the priors. She sees it too. It's been more than a week and Melanoma Man hasn't reported back to me any further details. Somehow I'm not rushing to ask either. We get what we get and what we've got is good. Eight months since the first set of brain tumors, when we know the average survival time after melanoma hits the brain is 5-7 months. The science of melanoma treatment is changing right in front of us and we are the beneficiaries.

We go to another Blue and Gold dinner with Cubscouts. It is our last. Now we are in BoyScout world since Butter received his Arrow of Light, went on his first Boyscout camp out with his big brother this past weekend. Friday night of the camp out Butter shares his tent with 3 friends. They practiced putting up the tent in our yard a few days before. Still with the practice they require help from iMac, who is more than thrilled to be older, wiser, more skilled. Melanoma Man attended Friday night camp out happenings and drove the hour home to sleep in our bed with me. He has a sore throat Friday night. In our bed, in the dark I ask him if he has the antibiotics the pulmonologist recommended on hand. "Why are you always trying to treat things that haven't happened?" he wants to know. Dr. C/ pulmonologist has advised him to start the antibiotics at the first sign of upper respiratory infection, so it is NOT my plan. It is the pulmonologists plan. " Boy Scout motto," I return, "Be prepared." I wonder to myself "Why you got to always live life right up to the edge?!! Why you got to wait until it's an emergency?!!" I am tired. I sleep. Saturday I walk on the beach at 7, calmest ocean I've seen in a long time, dark blue edge of sky, birds floating on the surface enjoying the rare calm. Me too. Later I treat myself to more sleep, a two hour nap, uninterrupted by boys or cat. 

Here I am

Everything has been altogether ordinary and altogether not ordinary, which is my status quo. Melanoma Man is in good spirits and his energy level seems good too. The FDA just approved a new combination therapy for recurrent, inoperable melanoma. Dabrafenib + Trametinib= braf inhibitor + mek inhibitor. He got through the prior authorization process and the Trametinib will arrive Wednesday. He's been on the dabrafenib alone since November. In the early days of melanoma when we were newly engaged and newly married I read journal article after journal article in my attempt to understand and control melanoma. Now I just hit the highlights which is infinitely better for my mental health. I feel confident about the Weber and Dr. Rau and they make us feel like people, not just statistics. Last week one of the Dads at a Boyscout event asked Melanoma Man if he is Butter's grandfather. He was crestfallen. I remarked to MM, did you tell him that you are just an unbelievable stud, keeping up with your 47 year old wife? It made him smile. The dark clouds were brushed away as I shone sunlight upon his sky. It is important for me to remember that he should be someone's grandfather, as are all his college and law school classmates. It is important because he gets out of bed everyday cheerful, making plans for our boys, encouraging them, and coaxing them in spite of fatigue, breathlessness, and joint pain.  Sometimes he pushes too hard, like trying to plan Butter's college career at Princeton. Me, I am trying not to look ahead farther than a few days. Butter, he is still talking about Heaven, if it is real, and how can I believe it, and how did I come to believe it, He wants every detail of my faith journey, but for now I sift through the memories and parcel them out. 

Other big events  in our extended family: MM's cousin Roy lost his battle with cancer two weeks ago today. I can't remember a trip to Riverton without seeing Roy, always steady, reliable, bright and humble. When I felt like such an outsider in this huge North Carolina family, Roy always pulled me to the inside, made me feel at home and part of. It's a true accomplishment because most of my outsider ness comes from within my own head. Roy turned 64 four days before he died. We saw him at Thanksgiving in Riverton. Even then he was planning a spring canoe trip down the Lumbee River and raising money for a college scholarship fund for some young man or woman from one of the poorest counties of North Carolina. MM and Roy spent summers together in Riverton, probably not together, but parallel. Cousins spoke of them in the same sentence as the cousins who survived cancer and embraced life. His death reminds me of the edge. It reminds me of the importance of Heaven. I am hoping Roy has met up with my father, JLS and my grandmother VEW. They would really enjoy each other. I like to think of them having the chance to meet.

 

Tonight I am in bed with a fever and headache. MM and Butter are watching Percy Jackson, Sea of Monsters. iMac is in Georgia freezing cold camping with scouts. I have in the refrigerator another ridiculous concoction, Black Bean brownies. Don't underestimate the importance of fiber I say. Shh, don't tell the boys!

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.

New job

I started my new job a week ago Monday.  My first 3.5 days were comprised of nursing orientation. The last job I had that included a nursing orientation was my first job out of nursing school in 1990. All the jobs in between have been sink or swim jobs. I am a swimmer so it has been fine in the long run, but it's awfully nice to know where the life raft is.

What has been lacking this week is laughter and being with people who know my story and put up with me anyway. I feel like I have to have my party dress on ALL the time in new job world. I was listening to a video clip of Brene Brown and Oprah tonight in which she said something to the effect of "you cannot choose courage and comfort at the same time." Dang!!!! I really want both right now, or maybe tomorrow would be ok. Really, never at the same time?

This weekend was busy with a Boyscout hosted camp out for the Webelos. iMac is a Boyscout and Butter is a Webelo. Melanoma Man and I discussed options.  We thought M M could spend Saturday and Sunday at the campground. Butter could share a tent with iMac while Melanoma Man came home to sleep in a bed at night. The master plan was for all the Webelo Dads to spend the night, so this would have been a deviation. Camping, getting in and out of a tent are particularly hard on Melanoma Man's breathing. Mid week Butter said "You know Dad, now that I'm about to become a Boyscout you don't go on as many camp outs as you used to."  That was all that needed to be said. Melanoma Man was in, sleeping in the tent. Decided. The campsite was close to home, about an hour away.  Melanoma Man's friend Charles would be there. In addition to being one of the most spiritual beings I have met on this earth, Charles also happens to have served as a medic in Afghanistan and Iraq. 

Home with the cat, I stayed busy, avoiding thinking as much as possible. Laundry, laundry, kitchen cleaning, grocery shopping, card making. Most of all not thinking if I could about Wednesday October 9th's schedule. MM will head to Tampa for Ct scans of abdomen and chest, and the first MRI of his brain since his radiation treatment for the brain tumors in July. He'll see The Weber, as he likes to call his oncologist and Dr. Rau, his radiation oncologist. I can't go since it's my second week in the new job and I' m busy acting like a new employee with no pesky personal problems that might impact my work. It's probably best that I don't go since MM and I don't tend to get along well at medical appointments. 

Vacation part 2- Best Ever Vacation

Hard for even me to believe how well the week turned out. On Day 5 Melanoma Man and I hit the road for Tampa at 7 a.m. We thought traffic would be heavy in Orlando, figuring there would be lots of Independence Day travelers. It was just the opposite. Arrived at Moffitt with plenty of time to spare, so we got to hang out in the radiation waiting room for a bit with other members of the Cancer Tribe. The Stereotactic Radiation Surgery itself took about 40 minutes. It must have seemed interminable to MM since his head, neck and shoulders were in a tightly fitted mask which was then bolted to the table. I asked Dr. Rau to give him oxygen during the procedure and he obliged. Later Melanoma Man thanked me for the oxygen. He said it made all the difference. We stopped at Cracker Barrel on the way home. I ordered comfort food, 2 scrambled eggs and a biscuit. He teased me about my driving, but mostly read the Economist all the way home. It' s just really hard for him to give the reigns or the wheel to someone else, even me.

The next few days were so relaxing. Every morning Melanoma man would hand me his Jacques Pepin cookbook and ask me to place my order for that night's dinner. And he felt better than he has felt in almost a year, likely due to the combination of relief, the oral steroids he took post radiation, and the mandatory temporary holiday from his Vemurafenib during radiation week.

We watched movies every night: Moneyball, Dr. Zhivago, and The Quiet Man. During the day we read books, chatted, and shopped for ingredients for the evening meal. I did absolutely no housekeeping, giving myself permission to just be. 

Wayne returned the children and cat on Monday evening. And still no side effects from radiation, fingers crossed.