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.

And It Was Good

Mm's visit with the Weber on his Cancerversary, that is. 

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.

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.

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!

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.