Saturday, December 20, 2014

Christmas cards

What to say? I told MM I wasn't sending any this year. "Oh, what about Mrs., and Diane, and your Mom, and Lisa?" he said. OK well a few. There is always the question of what to say. "Comfort and Joy to you in the New Year!" MM said. Sounds pretty good. My shortlist knows what the year has been. I needn't say more. I look through the basket of cards received, many from from college or law school friends of MM with stories of successful, beautiful children and grandchildren. I see signs of achievement, wealth and self promotion. I know it is there, the real life behind the picture, but I can't see it.

We are alive and we are here and it is hard and we get up again and take care of each other so that perhaps we will be alive and here and together again tomorrow. Tonight we listened as MM read a short story to us, The H Street Sledding Record by Ron Carlson.

Tomorrow I hope we can watch the Polar Express. Most of all I hope the bell still rings for me.

Friday, December 19, 2014

About last night...

Thursday night December 18, we went to bed early for most people, the usual for us, 9 o'clock. It was supposed to be another night before Moffitt for us. I was awakened at 10:15 p.m. by Melanoma Man calling my name. I looked over to his side of the bed, but he wasn't there. He called again. I sat up. He was standing by the sink in front of the closet with a towel in his hand. "Will you come look at this? Is it my port?"

I could see that his shirt was soaked in blood and so was the towel, but I didn't have my glasses on so I couldn't tell if it was the port. He had been at the dermatologist earlier in the day. She biopsied a mole near his port. I put my glasses on and was so relieved that the blood wasn't coming from the port. I am not sure why that seemed such good news to me, especially given the rate at which he was bleeding, but it did seem like good news. He blew his nose. No blood from his nose. More good news. My brain processed, It is not systemic bleeding. It is not disseminating intravascular clotting. More likely it is the collision of Fragmin(his anti-coagulant), his biopsy, and possibly new blood vessels feeding a mole that was likely another melanoma. I put my left hand over the towel on his chest and my right hand on his back, like a sandwich and walked him back to the bed. We sat down on the bed. I pressed my hands together with him in between them, as hard as I could. Looking down at the bed, a pool of blood. I realized he had likely been bleeding for a long time before it woke him. He said he felt a tug on his stitches when he turned on his side, just before he fell asleep. I could smell the blood. He asked me if it was time to go to the ER. I said No, let's do 15 minutes of compression and then if it works we will do it for 15 more minutes. I started seeing stars and feeling nauseous. I asked Melanoma Man to hold pressure on his chest. I slid to the floor and broke out into a sweat, apologizing.

After a few minutes I stood up and walked to the hall closet for gauze and tape. I made another bandage to secure over the existing one. By eleven we both felt confident that it had stopped and would stay stopped. I asked him not to go to Tampa, but to go back to see his dermatologist here to have the wound re sutured and to get a new pressure bandage. He had already decided that.

He asked if he should strip the bed before we returned to sleep. I said No, these are our only sheets. I laid towels over the bloody sheets. Up at 5, we stripped the bed and I began rinsing the blood out with cold water. So much blood.MM seemed to be feeling well. I asked him to take it easy today, to drink a lot of fluids to restore what was lost.

By 9:15 this morning he had returned tot the house, having been sutured and bandaged with an ace bandage encircling his chest. He left a message for Jennifer at Moffitt: "I'm not going to be able to make it to Tampa today due to waking up in a pool of blood."

"You did not leave that message!" I said later in the day when he told me about it. "She knows I'm fine or I wouldn't be able to leave the message," he said, "Plus she was sure to call me back quickly with  a message like that."

Indeed.


Wednesday, December 3, 2014

Radiation

We left early Wednesday morning December 3rd, right after imac got on the bus for school. imac had been in tears about grades that are suffering. Suffering due in most part to completed assignments that lie at the bottom of the backpack or on the kitchen island or in the locker. I hated to leave him at the bus stop so discouraged. I wore my jingle bell necklace, a single silver ball on a silver chain, to remind myself of the holidays. Melanoma Man and I arrived in Tampa 12:15ish, in time to have a leisurely lunch at Jason's deli. It was packed full of USF students, faculty, cops, grandparents with grandchildren, and medical types. 

Once at Moffitt we got called back to meet with one of the Jennifers, his usual radiation oncology nurse. He has two Jennifers in medical oncology as well. I wrote down the three things I wanted to remember: MM needs to have oxygen by nasal cannula during radiation, what is the plan regarding steroids, and a baseline neurological assessment has not been performed this time as it was performed before and after both prior stereotactic radiation surgeries. The oxygen issue was easy. The steroid issue complicated with radiation oncologist recommending one approach and medical oncologist recommending another. A different radiation oncologist was sent in to do the neuro assessment, likely because the radiation oncologist assigned to MM for today's procedure is really a prostate guy, not a central nervous system guy, and probably hadn't done a neuro exam in 15+ years.

It is confirmed there are three, not two tumors, one very close to the brain stem. Jennifer says Yes I can go to work tomorrow, but do watch MM for seizures, severe headache, confusion, slurred speech etc.

Thursday I go to work.  it is a decent day. Before work I counsel MM: "keep your phone on, respond to my texts and emails promptly today. I am making sure you are ok." He agrees. Later in the evening he reports a few episodes of stabbing pain in the right temple and then twitching on the right side of his face, but now resolved. 

Friday morning I am getting ready for work. He is frowning, sitting on the sofa waiting for me to give him his Fragmin injection. "What's going on ?" I ask.

"I'm worried. I have a headache in the same spot as yesterday's pain. I feel disoriented." 

I inquire whether the disorientation is a balance/ dizziness phenomena or a thinking problem. He says it's thinking, the thinking is slower, finding words is hard. The finding words was hard on the drive home from Moffitt too, with him using he word "snack"instead of "snake", "speed dial" in place of "cruise control."

I bend down in front of him and tell him it's ok to be worried. It is ok to talk to me about the worries. It is even ok to talk to his medical team about them. He decides against ibuprofen for now. I am off to work. 

By 10 am he reports the headache is gone. He is feeling better. Friday night I administer his Zemaira infusion and we are done with all things medical for the day.

Monday, December 1, 2014

Scheduled

MM is on the schedule for radiation. Yay!

Time

Time moves slow while waiting for appointment date and time for brain radiation. It moves fast while brain tumors grow.

Sunday, November 30, 2014

Out of the Fog and Into Thanksgiving

I stayed in the fog from last Wednesday until Tuesday or so.I went to work, then there was a weekend, then work again.  Melanoma Man has made two more trips to Tampa since my last post and we will make a third trip together this week. All the preparation has been done, the Novalis 1 mm cut MRI, the head CTscan, the molding of the skin tight mask he will wear during stereotactic radiation surgery. He has a new radiation oncologist, which is disappointing because we had bonded with his first radiation oncologist so well. Alas Dr. Rau moved on to another group practice in Orlando. I feel like he was a good luck charm in some way. You get attached to the teeny tiny known aspects of treatment, like the doctor you have seen before, the same barista at the Moffitt Starbucks or the valet parker. The repetition reminds you that you have been here before, done this thing, can do it again, came through to the other side. Sometimes the little changes can immobilize me, suddenly standing there wondering, "what do I do next? what is the next right thing?" I will misplace a small household item and become possessed to find it, as if my existence depends on locating it.

Things are happening, surprising things. Coffee with a newish friend for two hours on a Saturday. It renewed my strength and belief in myself.

 A last minute invitation for Thanksgiving dinner from just about the only person MM would accept it from without feeling pitied. We spent a wonderful Thanksgiving Day at someone else's house. Usually MM cooks for us for Thanksgiving, but with all the trips to Tampa there was little time to shop or prepare. I worked all day Wednesday. MM got home late Wednesday night from Tampa. No worries, we had no preparation to do for Thanksgiving.

Moments after I got MM's brain tumor email my phone dinged, a new text. I checked my phone. It was AM, not one of my regular text correspondents, but a physician I worked with for 7 years, checking in to see how things are going. I am not much for faking, "oh fine, lovely weather" and what have you. Although I can do it, having essentially been raised by professional cocktail party throwers and goers. What I heard next from AM surprised me. Her father is dying. She is on the way to see him one last time. She told me how much respect she has for me and the way I manage my life. AM is extraordinarily bright, accomplished and dare I say a bit fierce at times. I admire her sense of purpose, drive and directness toward her goals. I, on the other hand, have not lived my life with that kind of determination, clarity or planning. I have continually adapted to the people in it, rather than ask them to adapt to me. I have missed opportunities and sold myself short and just gotten by sometimes. In spite of all that I think I may have succeeded in communicating to people that I love them. 

Thursday, November 20, 2014

Where to begin?

Some days I wake up not knowing where to begin. On these days I am thankful for laundry, ironing, making lunches, needing to grocery shop, and going to work. The tasks of daily life get me up and out of bed, putting one foot in front of the other over and over again.

I stayed home on Wednesday with Butter who had sore throat and fever. I tried to keep myself busy, waiting for a text or a call from Melanoma Man. Then I tried to take a nap around 1 pm, knowing that he would see Dr. Etame at 1:15 pm. I aborted my unsuccessful attempt to nap at 1:30. An email came around 2:30. His phone battery was out of juice. "Two new brain lesions, coming back to Tampa Saturday and next Wednesday. Still waiting to see oncologist and get CT scan results."

The next few days I muddled through. Each morning waking up and thinking something bad has happened, wondering for 30 seconds what that bad thing was. Brain Tumors, that's right, I say to myself in my head.

MM got home around 9 pm Wednesday and asked , "Did you tell the boys?" No, I hadn't wanted to give them partial information with no indication of the plan. MM reports no interval growth in the tumors below the neck. He hands me the brain MRI report and I see that there are 3, not 2  new brain tumors. He draws me a picture of a line with an arrow and  box on it. He said "the box is the gray zone. We are in the gray zone because I've been on these medications for 24 weeks. The meds might still be working." In my mind there is no gray zone about brain tumors and there is no doubt that the drugs have stopped working in the brain, but I do not share my thoughts on this.

Thursday morning 5:15, drinking coffee in our living room. MM realizes he would not be able to go to the Outdoor Leadership Boyscout training weekend. He pickes up his phone and dials fellow Scout Dad, Charles. I am thinking 5:15, really? Charles is the Command Master Chief at our local Navy base. MM reasons that he is sure Charles is up. He explains that he won't be able to go, but he is still grocery shopping for the camp out and will drop the food off at Charle's house later Thursday evening. I hear these words come out of MM's mouth," It's not clear how serious this all is."  Charles is also a medic and is certainly not fooled by MM's non-chalance.  

Saturday I had a day to myself with MM back in Tampa and the boys camping with scouts.. I walked on the beach at 7, met a friend at Panera for breakfast, got my haircut at 11, coffee with another friend at 1:30.

Sunday Charles calls and invites us for Thanksgiving. At first MM is inclined to say no, but then says yes, we do accept the invitation.  I am relieved. I am working all day Wednesday and MM will be in Tampa again Wednesday meeting his new radiation oncologist.

Tuesday, November 18, 2014

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.

Wednesday, November 5, 2014

Public Speaking

I'm not a fan of being the speaker. So this Saturday I am speaking at a conference. I did not particularly volunteer for this speaking engagement. In fact I was originally scheduled to be in Atlanta this weekend in the audience listening to other speakers, who are in fact, not me. Melanoma Man's Pulmonary Embolism debacle and another recent health issue that lasted 10 days persuaded me to cancel my registration to attend the Atlanta conference. Four days out of town leaving imac, Butter and Melanoma Man to there own devices just doesn't seem prudent. Word got out around the clinic, that I wasn't going to Atlanta. Soon thereafter I received an email from an influential Nurse Practitioner/co-worker within my institution who is orchestrating a local conference for nurses. The email thanked me and all the other speakers for volunteering to speak at said conference.  The email was also sent to the Director of Nursing and the Nurse Manager of my division. A few minutes later I received an email from the Orchestrator with slides for my presentation. A rock and a hard place. That's where I am. Also aggravated.

I reviewed the slides. I didn't like them. I did a little research in between patients. I discussed and reviewed my slides with my physician and nurse colleagues. Tonight I asked Melanoma Man if I could practice, if he would be my audience. I was 60 seconds into my presentation, when Melanoma Man said "Is that on your slides, what you just said?"

"Yes," I replied.

"You know they can read. Your audience, they can read." This seemed like a good stopping point to me.

That's great, perfect in fact. Then there is no need for me to speak at all, just put my slides up and let 'em read.

What in God's name was I thinking when I asked MM to be my audience? Don't answer that, but do wish me luck on Saturday.




Tuesday, October 14, 2014

After the storm

Friday September 19th, we arrived home from Moffitt Cancer Center around 4 to our two sweet boys and Cha Cha. Medi home met me at the house with an oxygen compressor and some "to go" tanks. I took one look at the "to go" tanks and thought those will be the "hidden in the closet" tanks. They are not of the cute small backpack canister style. They are gigantic. The compressor is smaller than our last and a little less noisy. I wonder how long before MM calls Medi Home to return them.  Butter wants to discuss first things first. "It's about Dad's birthday cake. I know you're probably tired and might not feel like making the cake today." No, I assure him today is the day. I am making the cake. It is a birthday to celebrate!

Saturday I gave MM his daily Fragmin injection around 7. I joke with him that nothing says good morning like a good cup of coffee and a shot in the stomach. After lunch I administered the Zemaira infusion, which ordinarily would have been done by Kathleen on Friday morning, but we were still in Tampa. Saturday MM took the boys to the library and to get a movie from Redbox. Sunday he is at church at 9 a.m as usual. Monday night he leads the Boyscout meeting. He says he feels like a demolition derby car, windshield shattered, a tail light out, rear bumper damaged, but still in the race.

I felt like a cat with a sand spur in my paw all morning, trying to get comfortable, then ignoring my mood, then trying to attack my mood more aggressively, gnawing at my paw to try to get it out, whatever it was. I tried making cards, doing laundry, cleaning, taking a shower. Nothing worked. The tears came as easily as if I were a post-partum Mom. I don't like the tears because they give me a headache, and make my face puffy.  I develop the dreaded faceache, close relative of the headache. Sometimes the tears just go on and on and on well beyond their allotted time. Not today, as quickly as they came, they left. I was thankful the storm had passed.

The storms keep coming for me, day after day. Sometimes I am disproportionately angry with my grocery cashier who implies that the teriyaki beef jerky is NOT on sale, when it most certainly is ON SALE. Otherwise why would I have purchased this many packages of Teriyaki beef jerky, I ask you? It seems like a bigger outrage than it is. A song or a rainstorm will have me in tears in a second. There is that strong desire to tell whiny people what I actually think of their whining. Each morning I wake up, wow, another day, wishing I could go back to bed, grateful I have a job that gets me out of bed. The job, and the daily routine, getting up @ 5, reading, making lunches, shower, getting Butter out of bed, leaving a note for imac, driving to work, working. Laundry, lest we forget laundry. All of that is my tightrope. On one side of the tightrope, despair, on the other anger. Sometimes I fall off into despair. I overcompensate trying to get back on the rope landing on the other side. I think of Cirque du Soleil, which I have had the good fortune to see twice in Orlando. On either end of the tightrope, a tiny platform for rest. So I give myself permission to get in bed @ 8, to do yoga for twenty minutes instead of cleaning the bathroom, to sit and read or recite the rosary. It's my time on the platform.

P.S. Melanoma Man is using his oxygen all night long, almost every night, and feeling much better.

Tuesday, September 23, 2014

Scary Eyebrows

Thursday night in the hospital MM was well enough for me to have the conversation about how crazy it was for me to acquiesce to his fierce independence in driving himself to Tampa Wednesday. The docs had already explained the risks to him, of having an MI secondary to the PE, of losing consciousness while driving, of dying, wrecking etc. But only I could explain scary eyebrows to him. "Scary eyebrows"  is how I know his oxygen debt is severe. His facial expression changes. He looks afraid. His face says something different from his words and mostly it is expressed in his eyebrows. I explained to him that when I suggest that he needs to contact his physician, or that I need to drive him somewhere it is not merely generalized anxiety that drives my suggestions. It is scary eyebrows and scary eyebrows are serious. I said what I had to say knowing all the while that I would not be heard. I said it anyway.

Friday morning I stopped at Panera to pick up a spinach, bacon soufflĂ© and cappuccino for MM's birthday breakfast in the hospital. He asked how my night was. I told the truth, which is that I cried for an hour and then slept straight through until morning. 

Thursday, September 18, 2014

Road trip!

As you know Monday was rough what with Melanoma Man's Extreme shortness of breath. Tuesday he faked it a little better, but still couldn't get his pulse Ox above 87. Wednesday, another hard morning to witness, with him refusing my offer to go with him to Tampa. My gut was that he would be in hospital before the end of the week, possibly in Tampa. At three o'clock a text from MM stating, "They put me on oxygen! They are all excited about my pulse Ox. They put me on oxygen," as if to say where do they come up with these ideas? Doctors are sooooo alarmist.  I replied, " I am not surprised." A second text bearing good news," MRI and CT scan show no new tumors, but would you call me?"  

I was on Allergy shot duty at work, so handed over my crown to Tracy, in order to call MM back. He started with the usual disclaimers and then said "I am getting admitted, pulmonary emboli." So in a way MM was right yesterday or whatever day that was when he said he was worried that his lungs were filling up, just not with tumors, but blood clots instead. Pulmonary emboli would be the most obvious option in a differential diagnosis for sudden onset of shortness of breath and oxygen desaturation. Yet it hadn't occurred to me. Perhaps because I am so tired or just can't even think about more complications. Perhaps because of past Emergency Room visits during which one or another ER doc did a  work up for pulmonary emboli, and each time it was not that. Left work early, home to talk to and feed boys, I awaited the arrival of nurse friend Sara G. The boys took the news of the hospitalization and my trip to Tampa pretty well. Butter requested a guarantee of medical success in dealing with the clots. I didn't have one, but I do have a lot of confidence in Moffitt, so I used that angle. 

I stayed at the cancer hotel last night. Today just hanging out in MM's hospital room. There have been walking tests, more of a breathing test than a walking one, an echocardiogram, Doppler of his calves. The respiratory therapist was nice. I just wish she hadn't told the story about her one other Alphal 1 Anti-trypsin deficiency patient. The story about  the  mother with the late diagnosis after she had deteriorated to the point of being on a ventilator. Yes she got a lung transplant, which was a decent ending to the story. MM will not be a candidate for that ever, due to his age and his concurrent cancer diagnosis. It was the part about the woman's three daughters that got me. All three tested positive for the alpha 1 anti-trypsin deficiency. Thanks for that. Melanoma. Man and I just stared at her speechless. I myself say stupid things all the time so I try to let it go. When you or someone you are close to has something rare and horrible people love to share their encounters with your rare horrible disease. They can't help it. They are trying to create a bridge, but sometimes it feels like a cliff they just pushed you off of. Hey people, time to take that bridge back to the drawing board. It's not working for me.

It looks like we will get to go home tomorrow, MM's birthday. I will make the chocolate cake with caramel frosting and toasted pecans, his favorite.

Wednesday, September 17, 2014

Being a Witness

Monday morning it was hard to leave the house. Melanoma Man, Butter, and iMac returned from the Boyscout trip to Richmond Sunday midday. MM was happy, but depleted, a hint of a developing cough. Monday morning gray with a Pulse Ox of 85 on awakening, and still 85 still an hour later. his pulse Ox usually climbs back up to 90 or 91 after he has been upright for a while, but not on this day. Coughing , nausea, and all the strange whistles, creaks and wheezes. I checked to be sure he had a full course of Zithromax at home. I knew he wouldn't start it on my say so. I knew he wouldn't tolerate my staying home to take care of him either. " Send Dr. Cury an email to see if you should start the Zithromax. And Dr. Weber too while you are at it, just in case this is the beginning of a drug reaction like last time." By one o'clock Dr. Cury came through with the answer I wanted, "Start the Zthromax." MM recalled the ambulance ride and hospitalization of last November and didn't want to repeat it. Mid morning an email arrives in my inbox. It is from MM. He is worried that drugs aren't working anymore, that his lungs might be full of tumors again. 

MM let the boys take the bus to and from school. I had already grocery shopped and done a little cooking Sunday. Just a week before I had brought MM to tears by making a menu plan. "You're doing it again. You're taking all my jobs," he said. Well yes I was, but not with the intent of being hurtful. On our previous trip to Publix together, MM, breathless from walking the distance from the parking lot to the grocery carts said "I think I'll sit this one out." He waited for me on the bench at the front of the store while I shopped.

I know when he gets to Moffitt today they will offer him a wheelchair when they see how breathless he is. More than likely he will decline. I offered to accompany him, being careful not to say that I could "take" him to Moffitt. No, he will go it alone. There will be news, good or bad. He will hear it alone.

Sunday, September 14, 2014

Scared

I saw this on Pinterest or Facebook this week and thought "hmm, good idea,"
.
Putting it into practice is quite another task. Melanoma Man turns 65 this week. Don't let fate find out because he wasn't supposed to make it to his 64th birthday. He spent the weekend with 16 Boy Scouts and a few other parents on a train to Richmond where they toured the city, toured Civil War battlefields, reenacted, played laser tag, drove Go Karts, went to the movies and camped out. Phew. I am not sure how he did it, but he sounded delightfully happy by phone and text. He interrupts anxiety with gratitude and busyness all the time.Somehow I seem to think I can get ahead of, be prepared, get everything in order, ready for the storm, but I never quite get there. In addition to turning 65, it is a Moffitt week for Melanoma Man. CT scans, labs, brain MRI and oncologist. If I get extra anxious ahead of time, will that mean good news? Like I have payed my fear and anxiety dues in order to get a good outcome? Part of me believes that. Today I am going to try to prepare differently by replaying happy memories,

While we are on the subject of memories and the Civil War, I share with you a picture of me and Johnny Reb about 38 years ago fighting the fight. I hope you like my outfit. I think the bell bottoms go splendidly with the hat and coat, don't you?

Thursday, August 28, 2014

waiting

This week I wait via phone and text and airwaves with my dear friend KML, whose side. I would like to be by right now. KML and I became friends over weddings, and pregnancies, and husbands cancers. She is tall and blonde, and thin, extroverted, bright and quick witted. I seem to have a tendency toward befriending tall blonde women, me the Robin to their Batman. It was her extroversion that formed the friendship. We had mutual friends, crossing paths frequently. We both married late-ish. Her wedding scheduled a month before mine, and then mine jumped ahead two months. She called me right after iMac was born, wanted to see the baby, hear about the birth etc. I said "OK, sure, come on over."  At this point I was wondering who is this chic? I don't even know her.

I remember visiting her brand new baby A, meeting her Mom and Dad and T her best friend from her Baltimore days. We both had a history with Baltimore. Her husband's cancer came just 6 weeks after the birth of baby A. The treatment was aggressive and the recovery arduous. They returned to a sort of new normal for a few years before the radiation damage began to kick in so very hard. She was there for me through all of my depressions and I tried to be there as much as I could for her. Sometimes I was 5 miles away, 9 time zones away, 800 miles.

I spent an hour with her in a coffee shop in Annapolis 3 weeks ago. To be in her presence was to be restored. We talked of her husband's health and my husband's health. Me feeling a little guilty for the extra time MM and I are getting, as they are running out of time right now. Today she sits with husband D 800 miles from here at his hospice bedside, vent removed, feeding tube out. I am wishing and praying and crying in a way I didn't expect. Sending prayers out for KML and D tonight, and not quite believing that it is our generation's turn for loss.

Friday, August 22, 2014

Tuesday, August 19, 2014

Cancerversary Number Two

It's the first week of school. Butter and iMac seem energized by the school experience so far, fingers crossed. Tomorrow is MM's two year Cancerversary. I haven't mentioned it to Melanoma Man, nor he to me. He is en route to Tampa for early morning labs and office visit with The Weber. This morning he saw his pulmonologist for his semi-annual follow up. Thursday he will have a wide local excision of his tenth primary melanoma.

Two years ago tomorrow-I was at work in clinic, three o'clock when Melanoma Man called or texted to ask me to call him from my desk when I had some down time. I remember telling Ann almost immediately. Ten minutes later I received a call from Moffitt Cancer Center in Tampa to set up MM's first appointment. I gave them his number instead. Sometimes I remember to let him do his own thing instead of trying to run all the medical affairs of the family, but it is still hard. Ann asked if I might like to speak with her Ex, a pediatric oncologist, just to get my head on straight and get a game plan. Her Ex confirmed Moffitt would be the best place for MM, recommended that we could get a lot of diagnostic testing done locally first. We made some attempts to do so, but the hassle and red tape of doing the imaging locally and the doctoring four hours away was a headache. It would have saved us thousands of dollars, but we would have ended up in a heap in the middle of some medical center hallway weeping. The thousands saved, not because Moffitt is so much more expensive, but because it was out of plan. Since there were exactly Zero physicians in plan that had an expertise in Metastatic Melanoma, we ruled out the "in plan" option.  I began to seriously think about getting a new job, a job with health insurance that would cover MM's care. Really I was too boggled to even look for work at the time, but found my way to the new job eventually with the help of Vicki and Ann and lots of encouragement from Nancie and Cici.

Tonight in the kitchen we are checking supply lists, signing permission slips and agreements to abide by the rules of the various middle and high school teachers,  packing back packs. Butter and iMac want to know the story of how MM and I met and how we ended up getting married. They report that "Dad left out a lot of parts of the story."

"No he was just telling his part of the story, which is quite a different one from mine," I say.

Monday, August 11, 2014

The Splinter

It is our second to last night with Molly and Saint Bob. They have come over to take the boys tubing  on an inflatable thing called a Skibob. Butter and iMac help Saint Bob prep the boat. I am to be the spotter, the person who will let Bob know that a kid fell off or what have you. Butter, who rarely wears shoes, alerts me to a splinter on the bottom of his great toe. I removed another splinter yesterday and figure this one will be the same. He walks over to show me the splinter which is huge and tightly lodged in the bottom of his calloused toe. Butter and I trek back to the house looking for splinter removal supplies. Molly provides a needle, a precise and tiny pair of fine point tweezers and some neosporin. Butter and I set up on the sofa on the screen porch. The splinter won't come out in one piece. It would be better if I had a blade to slice open the callous, but I don't, so I have to use the needle to break the skin that lies over the length of the splinter. It is tedious and painful, but no bleeding. Halfway through the procedure Melanoma Man comes out on the porch with fatherly advice about wearing shoes on the dock and a touch of "I told you so" in his voice. Butter starts to cry, which could easily be due to the tugging and tearing I am doing, but. I know it's not. I cut the excess callous off with some elementary school style scissors, wash the wound and apply neosporin and a bandaid that I know will fall off within the minute. Butter and I walk to the end of the dock, awaiting the return of Saint Bob, Molly and iMac in the boat.
"Why did Dad say that!!" He demands. Initially I reply,"I don't know honey." He repeats his question twice.
This time I answer," Because he's jealous that I am such an awesome surgeon, working on short notice with inadequate tools to save the day! It's like this, he came upon the scene and thought , what value can I add to this situation? I know, helpful advice, that's my specialty." All this was said in my "pretending I'm your Dad" voice, which caused Butter to erupt into laughter. Butter boards the Ski Bob smiling, curls blowing in the wind, and singing at the top of his lungs.

Later at the house both Butter and Melanoma Man report to me separately that Butter had revealed his hurt feelings to MM and that MM has apologized.

The Week

The week
Monday-We arranged to meet Johnny Reb,wife K and son Sam at the air and space museum@ Dulles airport. I haven't seen them since a week before Sam's birth 2 years ago. Today we have planned our Northern Virginia activities, which include this mini reunion and a visit to see Gayle. Gayle is Melanoma Man's first dermatologist. She is smart and tenacious and always goes the extra mile for us. She diagnosed his first primary melanoma 16 + years ago and also found and diagnosed his metastasis August 8 2012. I haven't seen her in 14 years. She comes out to the waiting room and hugs me, Butter, and iMac, even though she is not a hugger. "He's a miracle, you know," she says and I do know. Then she tells me to take out the stitches above his right eyebrow in 7 days. "It wasn't there in February," she says. Instantly I read her meaning. This will be another melanoma. We return to Annapolis and stop for dinner at our favorite pizza place, Ledo's pizza.

Tuesday-Molly comes over and takes iMac and Butter kayaking. Butter has decided there are bull sharks in this river that drains into the Chesapeake Bay. iMac tells him there are not, and just stop worrying. Butter explains earnestly that it's not that easy to just turn the fear off. In the evening bob takes the boys tubing in the same river. The excitement of tubing overcomes the fear of the bull sharks that do not reside in this river.

Wednesday-K and family came to Annapolis to spend the day. iMac can't wait to share his plan with K. K's children are 2,4, and 6 years of age. iMac recommends that she should have another baby RIGHT now, so that in two years time she will have a 2,4,6 and 8 year old. Then iMac announces that we can chant, "two, four, six, eight! Who do we appreciate? K!" K takes his humor in stride. I think we should just appreciate her right now. There is swimming in the river, card playing, races in the yard and playing tag amongst the cousins.

Thursday-We had thought of going in to town to the Newseum, but several people recommended the International Spy Museum. There is morning summer homework for iMac, which is due the first week of 9th grade. Next Molly, butter, iMac and I drive to the nearest Metro station, buy farecards and take the Orange line into Metro center. I am transported to my days in nursing school when I took the redline from Shady Grove to Brookland/CUA. Moving forward in time a few years I am taking the redline from Friendship Heights to Metro Center, changing trains and disembarking for work at Foggy Bottom, occasionally taking the Metro to the Estern Market stop after work, where Melanoma Man would meet me and take me the few blocks back to his house for dinner. It's been more than twenty years. Then poof we have arrived we are at our destination. The Spy museum was a hit. There were exhibits that tied in with the movie D Day, which we saw on Monday at Air and Space. Walking back to the metro, waiting patiently for the walk sign to cross the street, sirens and some marked, some unmarked black vehicles whiz by. Butter. Wants to know what that is all about. We talk about motorcades, and who gets a motorcade, and if it is the President, why would he ever want or need to leave the White House. Where is the White House and can we go? Not this trip, but perhaps another. At our return station I try to add money to our cards at the exit fare, because we bought an off-peak round trip and returned at 3:15. See station attendant the exit fare machine says. He asks if we have been to a museum today and we say yes. The cards have been demagnetized he says and let's us through the side gate with no additional fare. Melanoma Man has spent the day back at the house, working on a presentation for a conference at church. I start working on dinner right away. Melanoma Man calls to me, saying "come, sit with me on the porch." I comply. " Gayle called," he says," It's a melanoma. But it's not Metastatic! It's a new primary." I think this is primary number 10, but I lost count years ago. We chat about logistics briefly, as in who should do the wide local excision. He says Lutz. I say, "absolutely not!" MM says, " He's a MOHS surgeon." 

"Exactly I say. He operates on Basal cell carcinomas. The MOHS technique by definition is tissue sparing. We don't want tissue sparing. We want them to take as much tissue as possible, that is why they call it WIDE local excision, not delicate, petite local excision." I will be happy with a general surgeon. He kind of wants to return to the plastic surgeon he has seen before, but it's not in our plan and would cost a fortune. The plastic surgeon's office was efficient and specialized in kissing ass, but mostly made me feel like throwing up. When we were there last, a woman in the waiting room who had taken way too much Xanax gleefully asked me what I was having done, as she waited for her procedure. "I'm the patient. I am having a melanoma removed," said Melanoma Man. I understood that the women in the waiting room were hurt, but not in the same way As MM. I could not bring myself to empathize with them. "Just keep your mouth shut," I said to myself in my head over and over again until we left.

Saturday, August 9, 2014

A bump in the road

That is what I'm going to call it, Melanoma Man's 10th primary melanoma tumor. It's not that it is irrelevant or that I think there is any chance in the world that melanoma will be eradicated from his body. Just compared to the brain, lung, abdominal, subcutaneous and lymph system tumors of the past two years this one is a small potato. I still feel kind of rejuvenated from my week of vacation, as if I've had a jump start. I am ready to Carry On!

Friday, August 8, 2014

The week

The week
Monday-We arranged to meet Johnny Reb,wife K and son Sam at the Air and Space Museum @ Dulles. I haven't seen them since a week before Sam's birth 2 years ago. Today we have planned our Northern Virginia activities, which include this mini reunion and a visit to see Gayle. Gayle is Melanoma Man's first dermatologist. She is smart and tenacious and always goes the extra mile for us. She diagnosed his first primary melanoma 16 + years ago and also found and diagnosed his metastasis on August 8 2012. Melanoma. Man has religiously attended his follow up appointments with Gayle every six months for the last sixteen years, even when we lived on another continent. I haven't seen her in 14 years. She comes out to the waiting room and hugs me, Butter, and iMac, even though she is not a hugger. "He's a miracle, you know," she says and I do know. Then she tells me to take out the stitches above his right eyebrow in 7 days. "It wasn't there in February," she says. Instantly I read her meaning. This will be another melanoma. We return to Annapolis and stop for dinner at our favorite pizza place, Ledo's pizza.

Tuesday-I walk to Starbucks with. Butter. He talks non-stop, about Super Heroes mostly what he learned from comic books at Boyscout camp. He talks about how all the Superheroes have dead parents, killed by evil villains. Molly comes over and takes iMac and Butter kayaking. Butter has decided there are bull sharks in this river that drains into the Chesapeake Bay. iMac tells him there are not, and just stop worrying. Butter explains earnestly that it's not that easy to just turn the fear off. In the evening Bob takes the boys tubing in the same river. The excitement of tubing overcomes the fear of the bull sharks that do not reside in this river.

Wednesday-K and family came to Annapolis to spend the day. iMac can't wait to share his plan with K. K's children are 2,4, and 6 years of age. iMac recommends that she should have another baby RIGHT now, so that in two years time she will have a 2, 4 ,6 and 8 year old. Then iMac announces that we can chant, "two, four, six, eight! Who do we appreciate? K!" K takes his humor in stride. I think we should just appreciate her right now. There is swimming in the river, card playing, racing in the yard and playing tag amongst the cousins.

Thursday-We had thought of going in to town to the Newseum, but several people recommended the International Spy Museum. There is morning summer homework for iMac, which is due the first week of 9th grade. Next Molly, Butter, iMac and I drive to the nearest Metro station, buy farecards and take the Orange line into Metro center. I am transported to my days in nursing school when I took the red line from Shady Grove to Brookland/CUA five days a week. Moving forward in time a few years I am taking the red line from Friendship Heights to Metro Center, changing trains and disembarking for work at Foggy Bottom, occasionally taking the Metro to the Eastern Market after work, where Melanoma Man would meet me and take me the few blocks back to his house for dinner. It's been more than twenty years. Then poof we have arrived. We are at our destination. The Spy museum was a hit. There were exhibits that tied in with the movie D Day, which we saw on Monday at Air and Space. Walking back to the metro, waiting patiently for the walk sign to cross the street, sirens and some marked, some unmarked black vehicles whiz by. Butter wants to know what that is all about. We talk about motorcades, and who gets a motorcade, and if it is the President, why would he ever want or need to leave the White House. Where is the White House and can we go? Not this trip, but perhaps another. At our return station I try to add money to our cards at the exit fare. We purchased off-peak round trip tickets but returned during peak hours at 3:15. See station attendant the exit fare machine says. He asks if we have been to a museum today and we say yes. The cards have been demagnetized he says as he let's us through the side gate with no additional fare. Melanoma Man has spent the day back at the house, working on a presentation for a conference at church. I start working on dinner right away. Melanoma Man calls to me, saying "come, sit with me on the porch." I comply. " Gayle called," he says," It's a melanoma. But it's not Metastatic! It's a new primary." I think this is primary number 10, but I lost count years ago. We chat about logistics briefly, as in who should do the wide local excision. He says Lutz. I say, "absolutely not!" MM says, " He's a MOHS surgeon." 

"Exactly I say. He operates on basal cell carcinomas, not melanomas. The MOHS technique by definition is tissue sparing. We don't want tissue sparing. We want them to take as much tissue as possible, that is why they call it WIDE local excision, not delicate, petite local excision." I will be happy with a general surgeon. He kind of wants to return to the plastic surgeon he has seen before, but it's not in our plan and would cost a fortune. The plastic surgeon's office was efficient, glamorous and specialized in kissing ass, but mostly made me feel like throwing up. When we were there last, a woman in the waiting room who had taken way too much Xanax gleefully asked me what I was having done, as she waited for her procedure.  Melanoma Man piped up "I'm the patient. I am having a melanoma removed,"  I understood that the women in the waiting room are hurt, but not in the same way as MM. I could not bring myself to empathize with them. "Just keep your mouth shut," I said to myself in my head over and over again until we leave.

Sunday, August 3, 2014

Vacation

As I remove my sandals, which are barely shoes at all, I hear the TSA agent counseling me, " you're not over 75 I assume? You didn't need to take your tablet out of your bag. It's not a laptop." He is full of himself this morning, or perhaps wishing he was in another job. Always having been an anxious traveler and a rule follower I feel surprisingly relaxed today and think whatever. Passing the airport bookstore I run into Lucien from church, who taught Sunday school to both Butter and iMac when they were first graders. She is pure magic and goodness and gives me a hug, remarks to me how well Melanoma Man looks these days, remarks on my grace, which I am reticent to accept. I have time to get coffee. 
Waiting in front of Starbucks for my skim latte, there is Heather with her family. She is all inclusive, frequently opening her home and heart to me, and so many others from different cultural and educational backgrounds, not requiring a resume, pedigree, a bank statement, or a list of accomplishments from me or others.

Boarding my flight, there is Bob M., recently retired priest from our church, en route to see daughter and grandchild. I hear the message. I am not alone.

I barely remember what we did on our trip North last year. Then I recall it was a much bleaker time, 3 weeks post brain radiation. I was still worrying about the potential of bleeding brain tumors, of radiation side effects, whether the radiation would work. Both boys had sore throats and colds, one boy was feverish and not sleeping. I had a urinary tract infection and a yeast infection. Mostly I couldn't wait to go home. Playing at relaxation was exhausting last summer. I feel it will be different this year. Both Melanoma Man and I are a bit more relaxed. Both of us cheery and light during the day, but haunted in our dreams. Last week I dreamt of being in a rural farmhouse with my brother Johnny Reb during a torrential storm. There was flooding and we were desperately planning an escape to safety for his young son and wife. The same night Melanoma Man dreamt he had lost our youngest son Butter in an international airport.

My plane lands. I am always surprised when the plane makes contact with the ground, pleasantly so. I call Bob S. On my cell. He is waiting in the cell phone lot for my call. Bob is my birth mother's husband and he is a Saint I think. We catch up on news and then reminisce about our first meeting almost 14 years ago. He says he liked me from the get go. He just had a feeling he says. I am feeling lucky to have this day in which Molly and Bob will care for me. Melanoma Man and the kiddos arrive tomorrow.

Saturday, August 2, 2014

the River

The river sweeps me along. It no longer matters if what stirred up the current is real or imagined. What matters most is the strength of the current and that it is taking me with it swiftly away from where I belong until I remember to stand up and say STOP. I stand up and look around, having said STOP, and I see that the sky is clear, the grass green, no wind or clouds for that matter. I saw a sign on Pinterest recently that said simply this: " Don't feed the fears." Not feeding the fears is hard. It is resistance. It is the opposite of what comes naturally to me. I read a recent post by Patient #1. His melanoma tumors continue to shrink, Yay! But there is a new tumor on his adrenal gland. Suddenly I am off balance. I have never met Patient # 1, yet his story represents possibility, and hope and living out each day we are here.  It is several days before I realize the current has got me and I am heading downstream fast. The fears having been snacking secretly. One of the reasons I can never go back to read what I have blogged about is the fears. I suspect they are waiting for me inside of recorded raw memories. I can barely stand to look back. I am in disbelief and delight that Melanoma Man is enjoying the best health he has been in within the last two years. There are glimpses and peeks of where we started and where we are today.

Friday, July 25, 2014

Fourth of July one year later

The weather was idyllic after Hurricane Arthur moved up the coast. Breezy, seventies and eighties. No rain on the drive up 95 on July 3rd.  Hardly any traffic either! We celebrated Independence Day in our traditional manner with an estimated 180  of Melanoma Man's extended family. The Riverton 4th of July celebration, includes parade and picnic and kids swimming in the river with various cousins. This year Larry, ex-husband of Lucy, persuaded the local fire department to participate in our family parade. Melanoma Man and I missed the festivities last year due to his brain radiation surgery. At the picnic many relatives surprised to see Melanoma Man here. When asked " How are you?" Melanoma Man always replies cheerfully "just fine, happy to be here!"

I made numerous treks from house to river and back throughout the day. The trips back and forth by myself make the whole event more plausible for me. I'm not the type who enjoys a crowd. On one of my returns to the house I found Melanoma Man in the living room with his cousin Nick, Lucy's brother. "I came over to hear about melanoma!" Nick said. I know it's true. He really did come to hear about melanoma. Nick's sister Lucy, also Larry's ex-wife, died of melanoma more than 20 years ago. Nick was diagnosed with primary melanoma this year himself. I say hello and head to the porch to hang out with Cha kitty to prevent myself from intruding on their fellowship, from interjecting my story into Melanoma Man's. There are few people that Melanoma Man will share his whole story with and Nick is one of those few.

Walking back from the river on the fifth I spot a bright red pick up in front of Mamie's house. I know it must be Evelyn and Bob. The house has been uninhabited at least for the past 22 years, which is as long as I have been coming to Riverton. Mamie was Bob's Mom and Melanoma Man's great aunt. Every July they return. Evelyn sweeps and tidies up the yard. They talk of fixing up the house on the inside. Bob is a cancer guy too. I'm not sure what to call those folks who haven't been cured, but live with their cancer and medications to subdue it. He has a form of chronic leukemia. Bob mentions that he had a melanoma removed from his left cheek, and that his mother Mamie too had a melanoma on her left cheek.

MM is looking and feeling remarkably well this summer. The Mekinist and Dabrafenib have been good to him. His color is good. His hair is growing back, especially the all important mustache. He got a good report from Moffitt in July, no new tumors. He plans each day with the boys the night before, merit badges and reading in the morning, then a swim, or errands, and usually a movie picked up from the library.  He delights in them and they in him. There is dinner every night prepared by MM as his offering to me. 

Wednesday, July 2, 2014

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.

Sunday, June 29, 2014

That calendar could save your life

It's that time of year when I start to think "maybe if I get a new calendar I'll be better able to manage my life." I've tried paper, electronic, Franklin Covey, 7 Habits, you name it. There's no calendar called "This is for you: caregiver, caretaker, carrying too many messy things and people." No "your life is going to be a breeze" calendar. I wasn't so much looking for a breeze, just a break. I've put some heavy things down, like my old job. I have tried not to pick up new heavy things, as demonstrated by the fact that I did not apply for the opening for nurse manager of my division. I'm in the process of starting a little etsy business. Hey I thought I was supposed to be putting things down, instead of picking them up? I was making excuses or explanations to my dear friend Di, as to why I haven't opened my shop yet. She carefully, and logically pointed out that the Etsy shop will be my fourth job, Full time RN, Mom, and Wife being jobs one, two, and three. Ah perspective, thanks for that. I keep feeling like I never finish anything and am rushing myself to prove a point to me, that I can follow through. 

I have had a good couple of days. Melanoma Man, iMac, and Butter are in Riverton. Sometimes I waste these rare times alone being sad, sometimes being mad. This time neither. Breakfast with my Stephen minister yesterday, followed by pedicure. Late afternoon haircut with Lily. Lily is my new favorite hairdresser. I'm pretty faithful, but Koran my previous hairdresser left for Nashville and gave me Lily. I got a good deal. I made several trips to the Salvation Army with old fan, humidifier, outgrown clothes, board games for littler kids. I washed and dried all sheets, comforters, clothes, towels. More significantly I put ithem all away and made the beds. When I felt discouraged at the state of the house in general I wrote down all I had done and the discouragement lifted.

Topping it all off, I selected a new calendar at Staples, just in case this is really the one that will make order out of chaos. ;)

Thursday, June 19, 2014

Missteps and blunders abound

School is out! We had a frenzy of the middle school drama show, fifth grade talent show, BoyScout Court of Honor, fifth grade graduation, eighth grade graduation, 24 hour trip to Orlando, and Melanoma Man's follow up with the Weber at Moffitt Cancer Center. During all that MM seemed to be swapping words out, gave me directions to a location we had been to together 2 days before, short term memory seemed to be a little off. I raised the subject of memory loss with MM. After my third attempt he said "I'm losing my mind." He joked, " What did you say your name was again?" Deflecting any talk of aberrations. 

I overstepped my bounds perhaps, emailed Dr. Weber 2 days before MM's appointment. MM handled it better than I expected. With not much more to lose, I didn't care so much if he was mad or furious or hurt. it was just the opportunity to just maybe find out early if these oddities are the result of radiation or of new tumors. The chance for an early MRI, the chance for radiation treatment if tumors were small enough. Seeing how much he is enjoying living, being here with me and the boys. I just wanted to buy some more time. As everyone, except perhaps for me, already knows, MM did not see this as an opportunity to intervene early. So we wait for our regularly scheduled program of MRI and CTscans in mid July. 

All is calm here in comparison to other recent months. Yet I have the sense that there is a murderer napping in the hall closet and I am too tired to stay on watch in case he wakes.

Saturday, June 14, 2014

Afraid you are leaving or that I am lost

That is it. The work of my life, to learn to stop being afraid you are leaving. Dorothy and her ruby slippers, trying to go home. She brings me to tears to this day. Standing in a living room, someone else's living room 23 years ago. Dorothy came on the screen once again the tears came streaming down. My housemate, bewildered by the deluge of tears. Getting lost at every milestone: graduations, marriage, the birth of a child, the death of a parent, a move, a job changed. Each time unsettled, needing to remind myself that I am there,  that I am me, that this is as home as it gets, that I wouldn't feel so lost if didn't hold on so tight.

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

Better

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.

Thursday, April 10, 2014

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.






Wednesday, March 26, 2014

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:

Thursday, March 13, 2014

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.