Monday, May 26, 2014

Cream Cheese in the pantry?!!!

It's the little things people, like opened soft spread cream cheese in the pantry in Florida? No no you say, that isn't right. Me too. That's what I say too. Don't get me wrong. I am the person who will absent mindedly throw a sock away in the wastebasket and put a dirty tissue in my sock drawer. The cream cheese in the pantry? It wasn't me. just sayin....

Sunday, May 25, 2014


We are having a quiet Memorial Day weekend! The steroids are working for Melanoma Man. No more fever, no more chills. He restarted the Dabrafenib and the Mekinist Friday. There is the alternating speeding up and slowing down which is almost constant. I have watched MM increase his volunteering commitments over the past four weeks, while simultaneously he loses ground on groceries and cooking, depleting himself entirely on the science project, the scout merit badge assistance, the planning of things at church and scouts. There is no ego boost in groceries or cooking, no implication that you were worthwhile on this earth. It feels as if the race is on again, the race with death. As if to say " I am too busy now death. My work is not done here. Move along."  There is the metallic taste and the hoarseness of the voice. He tries to act casual when he asks if these are side effects of the steroids. The answer is No, they are not. There is the 15 pound weight gain, which he tries to ascribe to over indulging, which he is not. It's all in one place, all in the abdomen. Then of course there that tricky combination of my imagination and my medical intuition, always at war with each other. All this I must set aside. Next month's visit to Moffitt won't likely explain any of it, as Melanoma Man will not disclose these symptoms to his physicians. He is scheduled only for labs and physical exam in June. June will mark one year since the first brain tumors appeared. July's visit to Moffitt will include the works, CT scans of chest/abdomen/pelvis, MRI of brain, evaluation by Neurosurgeon and Radiation oncologist. So I carry on. I am grateful for work and the busyness it brings and grateful even for the mindless chore of laundry. Here is a glimpse of what I do for therapy. I make things. I keep creating, trying to  balance the losses: Cards for Spring and Summer

Wednesday, May 21, 2014

Quick update

Day 1 of drug holiday and steroids: No Fever for the first time since last Friday! Whoo HOO 

Tuesday, May 20, 2014

Is it only Tuesday?

It is only Tuesday. Last night, another night of shivering and increased respiratory rate for Melanoma Man. The episodes last 15-30 minutes each time. I lie awake counting his breaths sometimes, assessing the wetness of his cough, wondering if it is infection or just excess fluid built up in the lungs. Then falling asleep on the job in my very own bed. Morning light makes everything seem a little more doable. Lunches made, chocolate chip muffins baked for the boys, a load of wash started. I think for a minute of suggesting that MM contact Dr. Weber with an update on his symptoms, but I say nothing except "have a nice day." Later in the morning I get a text from MM. He has been at the elementary school listening to the morning announcements. Butter is the top reader for the whole school, having read the most books and earned over 1000 accelerated reader points. MM says he is off to get his haircut next and various other errands. He is upbeat. Around 2 he sends an email asking me to go to the middle school parent orientation. He has a fever and chills again. This time he agrees to the drug holiday and the steroids. I go from work to school, to pharmacy to grocery to home. MM is asleep on the sofa under blankets. I meant to go to bed by 8 tonight myself, but am still pleased with nine.

Monday, May 19, 2014

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." 

Saturday, May 17, 2014

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.

Friday, May 16, 2014

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.

Monday, May 12, 2014

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.