Weekends were made for...fever and chills?

Friday morning MM awoke, sat on the edge of the bed longer than usual, said "I feel out of it." Ten minutes later on the sofa sipping coffee I checked his oxygen saturation, 86. "How did you know?" Past experience tells me that when he feels out of it he's not getting enough oxygen to his brain. He texts me at work mid day: "91." I am relieved. I accidentally send the text meant for friend Nancie to MM, "meet you out front at 12." He texts back "hug?" Strange that Nancie is late for lunch and strange that MM would send a virtual hug. Then I realize my first mistake. I am happy for the hug and send one back to MM to which he  replies "huh?" It's all clear now. He was not sending a virtual hug. He was wondering where we had agreed to meet at 12.

Saturday MM wakes with fever. I lay out the ibuprofen and antibiotics prescribed by Dr. Cury for occasions such as these. I don't even have to explain to him about preserving what lung function is left. He takes the antibiotic without protest.

MM arranges for another Scout Dad to supervise the volunteering Boy Scouts at the library. I deliver buckets and scrub brushes to the library for the Scout's service project. Then home to gather boys to shop for a birthday present for dear friend and neighbor. Three o'clock birthday party at the neighborhood pool for friend turning 14. Girls are invited. Girls, really, already? I am adult chaperone number three for the pool segment of the evening. Then the kids return to the celebrant's house to watch The Avengers, eat pizza and cake. MM spent the day on the sofa, no return of fever.

Sunday morning we are all up early. MM says he is going to stay home from church, save his energy for the scout planning meeting tonight. The boys vote for the early service, 7:45 a.m. and we are off. Back home by 9 a.m. I start cooking, laundry and prepping for the week and am mostly done by 12. Lunch is served, laundry in process, the house a disaster. Off at 2:30 with Butter to Scout Advancement, until 5. Home at 5:30 MM running a fever again. I deliver imac to the Scout planning meeting at church for next year's camping schedule. The father of yesterday's birthday celebrant will bring imac home.Off to Shell to get gas for the week and then Publix to get fruit and such to pack in the boy's lunches this week. In Publix I get a text from Angel friend Sara saying she is at Publix can she get me anything. We meet in aisle 2. She agrees to be on call Sunday night in case I need to take MM to the hospital

I survey the living room to assess exactly how fast I can clear the Lego, backpack, flue, sneakers, Yukelele , flute debris to clear a path for potential paramedics and stretcher should the need arise in the night. I try not to be mad at the kids for being kids and I try not to be mad at MM for being sick.

MM mentioned that his mustache is growing back, as is the hair on his head. He is pleased. I find myself wondering if the hair is growing back, is the cancer growing back too?

This morning MM emails the Weber. Immediate reply with concrete guidelines received. MM does NOT follow the guidelines. Instead he tells me the fever and chills are over. He is better. He does not need to take a 48 hour holiday from his cancer drugs as recommended by the Weber. The cancer drugs = LIFE for MM. He cannot fathom stopping them for even a day or two.

We talk on the phone on my commute home. He assures me his is better. He will take the boys to tonight's scout meeting. I arrive home. He says he is worse, since right after he got off the phone with me. He will take the boys and I will pick them up. When I return home with boys Melanoma Man is looking for extra blankets. It is 79 degrees in the house with comforter on bed, now winter blankets. I am not convinced that he is better.

I get MM settled in bed then get watermelon for the boys. Butter says Watermelon makes him sad because he remembers that cousin Roy always cut up the watermelon for the kids at Riverton. We saw Roy at Thanksgiving and a month later he was gone, having lived his life right up to the edge in spite of his years long battle with cancer. Butter says he's not sure he wants to grow up anymore. "You know why Mom? Because after awhile the world stops giving you things and then it starts taking them away." 

Mother's Day

Saturday(day before Mother's Day) I had been fighting the onslaught of grass pollen season as it warms up and trees wane and weeds begin to heat up a bit too. Not sleeping much at night. Being horizontal resulting in coughing. The four of us went to the grocery store. Not many shoppers, but two that I noticed right off. The woman, 70ish, white hair, pushing the cart, whispering to the boy, then fussing at him. The boy, actually a man 25-30ish, hers, but still her boy. He wore camo pants, combat boots, black tshirt, hat, and multiple items that I will call knife holsters. The knife holsters were clearly filled with knives. More knives than a person needs for a trip to the grocery store. I didn't see any guns. That was some reassurance. Boy and mother argued. He removed things from her basket, explaining to her in detail why she should not purchase this or that item. 

We headed for the dairy section. I circled back for a forgotten item and spotted the boy/man unrolling a sheath of plastic produce bags down the length of the canned goods aisle floor and then purposefully rearranging the canned goods. 

I met Melanoma Man, Butter, and imac at the checkout. I stopped to speak with the manager on my way out. There were so few shoppers, others may not have noticed. I explained about the knives, the produce bags, the reordering of canned goods and said I had seen no violence, but perhaps a tad too many knives. I suggested the manager might want to look into it and exited the store as calmly as I entered.

It was no coincidence that it was the day before Mother's Day. It was a reminder to me of what my mother endured in the mothering of her first child, He Who Must Not Be Named,' our very own Dark Lord. I wonder how she managed and how the three of us that followed managed. But managed we did and manage we do.

Telling the Truth

Hairdressers, co-workers, healthcare providers. Telling the Truth. It's a problem I have, telling my truth. Sometimes I forget that the truth is not well accepted. Saturday morning three days after we got the initial brain tumor news, my hairdresser or stylist, K asked " How are you?" Maybe we are to call them stylists? That must be for celebrities, not moms who get their hair done at the salon because of it's proximity to Winn Dixie. She cries through the whole cut, and blow dry. I am exhausted by it. I shouldn't have told her. Two weeks ago I saw k for the last time. She is moving back home to Nashville. She is one of two fantastic hairdressers I have had in my almost 48 years. The first was E at a Salonu Gozelik in Baku Azerbaijan, too long of a commute from Florida. K says she's leaving me in good hands with Lilly. I'll start fresh with Lilly. There will be no talk of brain tumors. A clean slate, just another short brown and white speckled head of forty something hair I will be.

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: