Friday, December 20, 2013

Christmas Time

Another Christmas. We got another. I didn't expect it really. I haven't felt so Christmassy this year. We got tickets to see A Christmas Carol, a one man show performed at our church last Friday. It was my idea. I came home from work and didn't feel like going at all, but I did go. I was glad to have gone, to have resisted the inertia. It was a spectacular performance. And two Saturdays ago, the office Christmas party. I had wanted to go, and then I didn't. The new job is good, great even. It takes tremendous amounts of my precious introvert energy to be the new nurse in the new job. It has been 6+ years since I've been new anywhere. I made it through to my 90 day evaluation with the Director of Nursing two days after Christmas. I worked on Christmas Eve morning and got out by 1 pm, just in time to meet Melanoma Man and the boys at the two o'clock service. I arrived early enough to get a great seat where I could watch and hear iMac play Holy Night on flute with an organ accompaniment. iMac has been a little bummed out that I haven't been able to take any extra days off during his winter break. I'm flattered that he misses me at 13 1/2 years old. Yesterday he wanted to go to the movies with me, to see Frozen. It was Disney, animated musical, some conflict, good prevails. A nice tidy package, just what we needed, some assurance, some predictable outcomes. Melanoma Man had an uncharacteristic amount of energy and cooking last week. It reminded me of the good ole days when he cooked every night, grocery shopped and the laundry was done and the homework was done. It all slipped away gradually enough that I had forgotten what it felt like. I didn't get my Christmas cards out this year, got the tree up, but without ornaments, couldn't find my Christmas stocking at all. It was enough, the tree had lights. I am madly in love with my tree because the branches are hinged and fall right into place AND it is pre-lit. The lights are the thing for me, that's where the magic is. I let the kids leave their Christmas toys and games, their blankets and pillows all over the living room floor on Christmas Day. There was no room for this sort of imperfect nonsense in my mother's holidays, events, celebrations. Sometimes I act just like her without meaning to, but not this year.  I didn't make room for perfection, not one bit. It was a mess, a peaceful and joyful mess. We had Christmas dinner at A & K's with 3 of their adult children, a girlfriend, a girlfriend's mother. Likely A's last Christmas here. She will be marrying K and moving back to their hometown this summer. They have known for 45 years, what's the rush?

New Year celebrations and resolutions loom. We spent it at home, which is my idea of a great New Year's. I have no gigantic plans for 2014, no list of fantastic accomplishments from 2013. Just that we made it. We made it this far. Today dear friend Rosemarie asked me if I make resolutions. Hmm. On the spot I decided that in 2014 I am showing up for life, just show up. Easier said than done. Home with MM and boys today, showing up meant letting iMac read Calvin & Hobbes to me out loud over and over and over again. I'm not sure why he thinks this is so much fun, but he does and I don't. At some point I just could NOT show up for this anymore. I watched half of It's a Wonderful Life, which is also a huge showing up victory for me. I aspire to sit through an entire movie at home some day. So. I have amended my resolution to "Show up and Set limits!" That will encompass just about anything. I've been in a creative slump for some months now, since starting the new job. I think I'm coming out of it. I  entered into some kind of a self evaluation/critical mode at work which infected pretty much my whole life and got in the way of writing, scrapbooking, and card making. 

For Melanoma Man there are memory lapses and what I call "filling in the blanks." Filling in the blanks is when Melanoma Man plugs in a word or someone's name because it sounds like it might fit in the story or the sentence, but he can't really remember what is supposed to go there. I roll with it mostly, or supply the missing details if he seems open to it. 

Cha Cha has climbed into Melanoma Man's lap every single night since MM's pre Thanksgiving  hospitalization. It's not clear to me exactly why. The answer at least was not provided by the last set of scans and labs. Next week MM will be back @ Moffitt for routine follow up, no scans so probably not a very informative visit.

Tonight I  arrive home to find MM watching Hunger games with iMac and Butter. Butter has his hands over his face, peeking through. I can tell from his expression and the soundtrack that it will be a late night for this Mama and Butter. He is as tall as his 8th grade brother, but a little more tender. Show up, that's what I'll do. I may end up in his room for the night. But I'm setting limits, I refuse to stay awake to fend off the bad guys that haunt us. I will sleep.

Wednesday, December 4, 2013

Good News for Christmas

Christmas came early. After 2 days of scans, labs, and doctors, the verdict is : NO new tumors. I feel as though I could curl up in bed for a long victory nap, say 2-3 days of napping. I know most people take a victory lap, but I've always been partial to napping. That's why Melanoma Man calls me "the Snooze Queen." Good to be Queen of something. Well off to bed for me, because although I dream of napping for 3 consecutive days, in reality I'll get up at 5 tomorrow to start the day and then off to work.

Monday, December 2, 2013

What to do at a time like this?

Well here we are again. Another night before Moffitt and all through the house all of our creatures are stirring. We are all a little antsy here. Seems like a good time to listen to some country music, which I don't ordinarily listen to. I heard this song by Brandy Clark on the radio on my way to North Carolina for Thanksgiving. I liked it. Maybe you will too.

Pray to Jesus by Brandy Clark

Tomorrow and the next day Melanoma Man will get CT Scans, MRI, labs, EKG performed. He will see his oncologist, radiation oncologist, neurosurgeon. We'll find out if we get another "Get out of Jail Free" pass for 2 more months.

Thursday, November 28, 2013

Happy Thanksgiving

Well MM rallied and would not hear of disappointing iMac and Butter. He refused to cancel Thanksgiving travel plans, rationalizing that driving posed no problem because he would be sitting down. Driving he said would not deplete his oxygen whatsoever. Well to my thinking pneumonia doesn't care whether you are sitting, driving or lying down. The only consolation for me, that the 10 day course of Levaquin would possibly keep the pneumonia at bay. Levaquin, the same drug that saved my brother, Johnny Reb, some 15 or 16 years ago when he deteriorated in a period of two short days from fine to bilateral pneumonia in all lung fields. The fact thatJohnny Reb had no underlying health problems gave me respect for pneumonia.

I got home from work Tuesday night, leftovers. The shipment of Zemaira for his Alpha 1 Anti-trypsin deficiency had arrived finally, after a two week delay for no reason whatsoever. Melanoma Man did the footwork, spending approximately 4 hours on the phone with the insurance company, the pharmacy benefit company, the sub contractor and the sub sub contractor, the pulmonologist's office. Here are their explanations for why they did not ship on time in the order they were given: we couldn't ship without the patient's weight, we have no orders on file for you, we spelled your name wrong. The pulmonologist's office and the sub sub were on point the whole time. It was all there, the orders, the weight, everything. It occurs to me to wonder if the two week delay did not contribute to the severity of the pneumonia? In any case, unbeknownst to me, MM had planned for me to perform his infusion this Tuesday night before Thanksgiving. And oh by the way he planned to go out in the rain to get the pies for Thanksgiving after the infusion. And oh by the way he would still be leaving with kids and cat in the van in the morning.  I decided on the silent treatment for the infusion and it worked well for me. The silent treatment to ward off his instructions (which are usually incorrect) and his comparisons of me to his other nurses. Post infusion I grocery shopped for pies, an easy dinner for him to prepare for the kids upon arrival, breakfast stuff so hopefully he would not need to grocery shop. Up @ 5 I packed the coolers. Boys up at 6 packed their duffle bags. Off to work @ 7, having checked MM's oxygen saturation, pleased to see it hover @ 89-90.

Monday, November 18, 2013

The Crock Pot Fairy

Most of you are familiar with the tooth fairy, but you may not have been visited by the crock pot fairy yet. It's kind of a new thing. I was chatting with my dear friend Di on my commute home the week before last, reviewing the happenings. The happenings were that Cha Cha, our amazing heroic hunter and healer cat, climbed into Melanoma Man's lap every night after dinner. Melanoma Man was sure that Cha was coming down with something or "under the weather," as my Dad used to say. I suspected that Cha's uncharacteristic behavior signaled that Melanoma Man, not Cha, was under the weather. I thought back to the Fall of 2012, after Melanoma Man's diagnosis, but before  MM began treatment. I would awaken sometimes in the night to see Cha sitting on MM's nightstand, awake and watching over MM as he slept. I hoped I was wrong and that my cat was undergoing a dramatic personality change for no reason whatsoever. There were other clues as well. Each night I arrived home and Melanoma Man would say, " I'm sorry, I don't know what to make for dinner," or something to that effect. That's where my Crock Pot Fairy, Di, came into the picture. Di said she had two crock pots and would bring me one. 

Di and I had planned a day of crafting at my house last Saturday. Melanoma Man and Butter were planning on camping with Scouts. Friday night the chills, fever, night sweats and cough arrived. Saturday morning Melanoma Man woke up knowing the camping would be too much. I reminded him of the Zithromax prescribed by his pulmonologist for just this type of occasion. He shot me a dirty look. Then an hour later he asked for the Zithromax, still insisting on calling pneumonia "a bad cold." He saw Dr. C just 2 weeks ago. Dr. C is another gift from Di. She recommended him, having chosen him to care for her mother some years ago. Dr. C and Melanoma Man talk about all kinds of stuff.  This time they talked about grief and books. It's humanizing, having a conversation that does not strictly revolve around "the disease," whatever one's disease may be. 

Saturday afternoon, with his temperature approaching 103 in spite of ibuprofen, Melanoma Man asked me to call the on call physician at Moffitt. He remembered a cautionary remark about his new drug, dabrafenib and fever. As I suspected she recommended I take him to the ED. How to choose which ED? We medical folks don't call it an ER as they do on tv. It's an ED for emergency department. Dr. C practices at the big medical center downtown, which was also my employer until recently. The cancer docs are all 4 hours away. I was still harboring a resentment against the hospital at the beach for diagnosing my Mom with the flu when she actually had a brain aneurysm almost 14 years ago.  So I decided on the big medical center downtown. It can be a bleak and desperate place and it can also be the best. Last Saturday night with cancer, fever, chills, and pulse oxygen of 87-89 we were low on the totem pole. We waited 3 hours and then threw in the towel. The main concern was whether the cancer drug was causing the fever and whether it was doing other damage simultaneously. A complete blood count, blood chemistry and urinalysis might provide reassurance or indicate that it was time to stop the dabrafenib. In 3 hours he had his vital signs measured once and was then escorted to the " priority waiting room." I was not initially allowed in the priority waiting room, but after my 5th super friendly inquiry at the information desk the receptionist let me go back to the priority waiting room anyway. Melanoma Man remarked that he would be hate to be regarded as non-priority. Later at home his oxygen saturation was up, temp down and I felt ok about our decision to leave. During the night MM remarked  "This must be what it feels like to be a sick old man, oh right I am a sick old man." By Monday the Zithromax seemed to be doing it's job. No fever Tuesday or Wednesday, but his oxygen saturation kept dipping into the mid 80's. As you may recall we don't have oxygen at home anymore, ever since Melanoma Man returned it. Thursday at work I received a text from MM stating simply, "cold relapse." 

I arrived home 6ish to find him on the sofa reading, temperature 99, oxygen saturation 86, looking very weary, coughing, but not in respiratory distress. Sara G. Arrived 15 minutes later with dinner. She is another one of my angels. 

MM went to bed @ 7:30, but called for me every 15 minutes or so. I knew he was scared, but not yet ready to admit defeat. I put the kids to bed, did dishes, got in bed myself @ 9. MM said, " we need a plan in case I have to go to the hospital. I got up and sent a text to MK, " you still up? Can I bring the kids over if MM has to go to hospital?" She said yes, as she always does. By 9:30 MM sat up in bed, with a temperature of 102, respiratory rate in he 50's and asked me to take him to the hospital. "Better yet, let's call 911. I don't think I can make it to the car." I woke the kids, called 911, drove them the 2 blocks to MK's house with pillows and blankets and what not. Back in time to meet the paramedics.  We went to the hospital  at the beach and they did a fabulous job, so I've decided to forgive them regarding my mother's aneurysm.

MM stayed 2 nights in the critical care unit and came home yesterday. To be continued...

Friday, October 25, 2013


Time is both slowing down and speeding up simultaneously. While this week seems like the longest week ever, six weeks from now seems too close and too soon. Melanoma Man and I made the trip down to Tampa on Wednesday. We left home around 9:30 a.m. and returned at 9:30 p.m. Neighbor and friend extraordinaire, MK, was waiting up for us in the living room having already gotten the boys washed and scrubbed and into bed.

MM and I had a great day in spite of the purpose of our trip. We talked and talked about news and books and life and the kids. There were few interruptions. I was reminded of all that I love about him. That made me a little bit mad because it is that love that makes this all hurt so very much.

We met with Dr. Rau before the stereotactic brain radiation. I warned Melanoma Man ahead of time that I had questions and that I planned to ask them and get them answered without him interrupting me. He was on good behavior, having been forewarned. The four tumors I had heard about were now five tumors. They were indeed small, but now showing up in the temporal and parietal lobes in addition to the frontal lobe, making their march across MM's brain.

We are on a 6 week leash this time, instead of the usual 12 week schedule. MM will have a repeat brain MRI in 6 weeks. It's a lot of pressure, making the most of these snippets of time, being always aware that we are on the clock.

Saturday MM heads to another campout with our Webelo, Butter, and fellow scouts. Brain surgery Wednesday, camping Saturday. Who would have thought?

Sunday, October 13, 2013

A week in the life

It's hard to know where to begin. So I'll begin with last Monday. iMac and his friend Z were the Masters of ceremonies at the Boyscouts Court of Honor. iMac earned his Life Scout rank. Tuesday was fairly low key. Wednesday brought intensity. My first week administering allergy shots at the new job and my first patient to have anaphylaxis at the new job. Having worked in an allergy clinic setting 10 years ago it was not entirely unexpected. I just didn't expect it the first week. I got off work late. MK picked up the kids for me since MM was at Moffitt getting CT scans and and MRI. The incoming text from MM at 5:30, stated simply " call me." Unfortunately his "call me" texts are either a BIG issue or an irrelevant one. I knew this one would be big. First the good news the first three brain tumors are gone. Then the bad news, 4 new brain tumors in multiple lobes of the brain. It doesn't matter that I expected this news . I am stunned nonetheless. The clock is speeding up again and I am not ready. Wednesday night MK drops the kids off. I am waiting for their questions. The questions never come. I am relieved. I don't have to tell them yet. They know already, just as I did. Wednesday night I dream of Melanoma Man standing up from his desk, taking a step toward me and falling. I wake up with a broken heart. Thursday MM returns in time to pick up iMac and Butter from school. Still they don't ask. MM and I sit on the sofa trying to decide when to tell them. MM says Sunday night. I say Saturday so they have time at home with both of us before they have to go back out into the world and be brave. After dinner Saturday night at the island in the kitchen I raise the topic of MM's scans. MM takes the cue and provides the details. Butter gets up from the island and gets tissues first for his big brother, then for his father, and last for himself. We sit in silence for a moment with our tissues and our tears.

Today MM is back in Tampa having his 1mm MRI and having his new radiation mask made. Next week I will take him to Moffitt for what will be his last stereotactic radiation brain "surgery." His oncologist is changing his drug regimen in the hopes that the new drug will cross the blood-brain barrier. I will be at work trying to make a good impression, and missing my "advisory committee" from my last job. The advisory committee kept me afloat. It's hard to swim without them.

Thursday, October 3, 2013

New job

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

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

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

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

Friday, September 27, 2013


I haven't been able to write these last few weeks because I've been holding back the feelings. When I write or scrapbook I feel all the feelings. Sometimes it is too much. Sometimes it makes me feel alive, really here, really living this life, instead of watching myself live this life from afar.

Melanoma Man's health has been relatively stable. His moods have not. I have been performing his Zemaira infusions for a few months now, but hit a bump in the road a few weeks ago, having some difficulty accessing the port. It all came together in the long run. I contacted my nurse friend Sara to come over and troubleshoot. We started a peripheral IV since we had port difficulties again. I honestly think it is just me being psyched out by Melanoma Man. The following Friday I had his official infusion nurse, Kathleen come over to help. I accessed the port with no difficulty. Melanoma Man has not been kind, refraining from speaking to me for two days after the first debacle. Then implying with words and tone that I am some kind of incompetent idiot in front of Kathleen. I announced that I would be in the kitchen while he talked trash because I didn't need to hear it, already knowing what he thinks of me. A moment later Butter joined me in the kitchen and asked " What is Dad talking about Mom?" I replied " I don't give a damn what your father has to say about me." Butter went to his room, sad and upset that I used the word "damn" until I told him he could fine me a quarter every time I cussed. I don't consider damn to be a bad word. Butter however is a purist. The quarter made all the difference in his mood. Money talks.

Yesterday was my last day at the job I began in January 2007. They gave me a wonderful send off breakfast. There were tears and hugs and cards and well wishes. As dysfunctional as we were, my work family has seen me through so much. I can't really imagine going through the day without them by my side. On Monday I'll give it a try. We will see if I can swim on my own.

Thursday, September 5, 2013


I don't think of myself as much of a risk taker. The biggest risks for me were getting married and having children. I remember me at 8 1/2 months pregnant thinking I'd rather not go through with it, knowing it was too late, knowing how ridiculous I was being. At the same time being sure that plenty of women before me had wanted to turn back too. It just seemed like too much risk, to love yet another person, too too much.

I was not sure how to turn myself into the type of mother who lives in a Pottery Barn catalog. The catalogs kept coming, Pottery Barn and Pottery Barn Kids. Crate and Barrel too. After awhile I stopped looking, heaving them to the recycle bin without so much as turning back the cover. The catalogs were full of safety and certainty and served only to remind me of the risks I was taking with these people who were becoming my family.

Last week thinking about all the changes going on at work and thinking about Girl number three, I thought to myself " I can't do this anymore."

Girl Number three is dying, the third in a series of young women that I have Case Managed. Although it doesn't feel like case management. It feels like my title should be Suicide Witness. All the tools of health laid out before them: pill boxes, free medications that work, check lists, encouraging phone calls, physicians, social workers, pharmacists, and psychologists and nurse.Yet they still march smartly toward death.

A text arrived on my phone from V, the other lucky case manager in my clinic. V manages the adults. I manage the children. If they are closing in on death I won't let them transfer from the pediatric to the adult side of the clinic even if they are 20 years old. I just think it's best to stick by them. The text from V is a job description. She knows I've got to get out. V calls my desk phone to see if I have filled out the online application. I edit my resume and have V and Dr. Ann look it over. Application submitted. Two days later a call comes to set up an interview. Wednesday morning I spent two and a half hours meeting with the folks at my prospective employer. There are windows. The staff bathrooms are clean. The commute is a little shorter. The patients aren't terminal. They are simply allergic. It feels like where I am supposed to be. I'm thinking about what to wear if I get a second interview when my phone rings. It's the offer, sooner than I expected and $5 more per hour than my current salary. I am happy, sad, exhausted, elated. I'm getting out. I am leaving people I love behind. I am choosing a job with potential, that will be infinitely better for me and the kiddos. I worry too about Melanoma Man and how long he can keep up the after school activities, homework, dinner prep. Whether this is a risk I should be taking at this time. V sends another text to me on interview day reminding me that there is no right time. So I stop waiting for all the planets to align just right and I accept the job.

Tuesday, August 27, 2013

Back to School

Back to School/ Sunday August 18th
Just back from shopping at Staples with Melanoma Man for school supplies. Butter starts fifth grade and iMac starts 8th grade tomorrow. We are coming up on the one year anniversary of Melanoma Man' s diagnosis with metastatic melanoma.

MM reported back to me after his August visit with the Weber, "All the tumors are gone in my chest and abdomen!" 

"That' s great, " I said just like that. No exclamation point from the Laundry Thief. Two weeks later he gave me the CT report that came in the mail. As I had already presumed the tumors are still there, stable in size. Then a confession of sorts from MM, " The Weber wants me to have an MRI of my shoulder and brain in two weeks. I just don't see why he wants to do the brain so soon. The plan was October. It doesn't make any sense." His left shoulder has been out of whack for the last four months.

I' m sure it does make sense. I ask him to contact Dr. Weber, which he finally does after five days. He sends me the email response as evidence. The Weber says we'll wait until October. He must be as tired of arguing with Melanoma Man as I am.

Last Tuesday night MM was giving unsolicited pointers to Butter about what kind of attitude Butter should have regarding school starting. Butter has difficulty sleeping every single year for a week before school starts. It means me getting up for one more song, one more pat on the back, one more glass of water.  I just try to ride it out, do what needs to be done. This Tuesday night MM has had enough of the interruptions and responds as he often does with a lecture for Butter. It is gasoline on the fire. Since I am the only fireman in the house I figure it shouldn't bother MM. Forty five minutes later I' ve got Butter down from his anxiety high and he is asleep. Back in the living room I remind MM that Butter is just being Butter and that it will be better soon. This remark is apparently uncalled for and there is an email from MM waiting for me when I arrive at work in the a.m. chastising me for my criticism, ending with the words "Shame on you." I wrote back , "have a nice day." Later in the afternoon I call MM trying to mend fences I ask, "Can we start over?" He replies "I don't want to date you anymore."  

I am perplexed by his response so I consult with Cici, one third of my my advisory committee. She tries to convince me that his comments and behavior are out of line, that just because he has cancer doesn't mean he can act like a jerk. She recommends confrontation. I'm not a good fighter, especially out loud in person.  Of course MM is a professional fighter, a litigator, so I'm no match. All I'm up to is a one line email, " if you don't want to date me anymore, then let's cancel the marriage." 

I arrive home to see a pile of library books, fiction, about marriage on the coffee table. The Wife by Meg Wolizter looks promising. She decides to leave him at 32,000 feet above the Atlantic Ocean after 40 years of marriage. MM asks for a hug when I come in the door. " No. We're not dating or married anymore,remember?" I say.

" That's not what I meant. I meant we shouldn't date. We should be married."  Yeah right, that's what he meant.
Never in our married or unmarried life has this alpha dog asked me for a hug.

Shopping at Staples today he hands me a 3 ring binder, reading from the school supply list, "3 prong folder with pockets."

" Looks like a 3 ring binder. We need those too. Four of them," I say while thinking to myself that his brain is on the fritz. At home I find a drawer full of MM's past years attempts at the 3 prong 2 pocket folder. This item on the school supply list has always stumped him. So maybe the brain is still ok? Saturday night he sat on the sofa with headache and nausea instead of eating dinner. Sunday he said he felt almost nauseous all day. Still he tells those that ask that the has no visible tumors on his last CT scan, which is an interesting interpretation and certainly does not match the radiologist's interpretation.

Friday, July 12, 2013

Happy Happy Joy Joy

I love birthdays. And today it is my birthday. Forty seven years ago today I was born to the Virgin Molly at Columbia Hospital for Women. The hospital is long since gone, now turned into condos. I spent a week there and then on to St. Anne's Home for Infants and Unwed Mothers until I made it to the home of JLS and JWS on Morrison Street in NW DC. They gave it all they knew, were there for the fevers, the tears, the terribles and the terrifics,  which is all I could really ask for anyway. I turned out ok. Twenty eight years later the Virgin Molly got the courage to go to court to see if maybe they could find me. I did not yet have the courage and quickly developed hives from my ankles to my neck along with unrelenting insomnia. Not until I was carrying imac around in my very own belly did I muster up the courage. I was blessed because the Virgin Molly is the real deal, a class act and we've now had 13 years of getting to know each other.

I had a homemade card from Melanoma Man and Butter awaiting me this morning. imac made me a Mother's Day card, which he apologetically said he lost in his bedroom. I told him "It's not really lost if it's in your bedroom. I accept Mother's Day cards anytime of year. We'll find it."

Then at work I returned from my morning meetings to find my desk covered in birthday confetti, streamers, banners, balloons, cards, homemade granola and gifts.

Even Dustin Hoffman made me happy this week. Also making me happy this week are Regina Spektor and Macklemore & Ryan Lewis . Hope you are having a happy week too!!

Friday, July 5, 2013

Vacation part 2- Best Ever Vacation

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

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

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

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

Tuesday, July 2, 2013


Vacation Day 1
Butter, Cha Cha and I hit the road shortly before 10 this morning, arriving in Riverton 4ish. The river is high this year, higher than I remember in the 20 years I've been coming. Melanoma Man, iMac, and cousin Maddy are on the front porch to greet us when we arrive.  They have been waiting for us to go to the river. Melanoma Man drives, with imac and Butter. Maddie rides her bike. I finish unpacking and then walk down the familiar dirt road lined with  dwellings that range from cottage to cabin to house, and past the rows of growing grapes on my right and rows of corn on my left. I am wearing my favorite hat, the one Ella sent. Ella is not here yet, but I am delighted to see Mary McNeill, Janet, and Mary Mac already at the river. Mary McNeill and I talk about books. I record her recommendations on my phone.

Melanoma Man drives back to the house with the kids while I chat for a few more minutes before making my way back to the house.

When I get home I find him in the kitchen, pale, short of breath and sweaty getting dinner ready for kids. "I think tacos are too complicated," he says. 

" How bout if I make the tacos and you go sit on the side porch with the boys."
"Ok," he agrees without protest.

A few minutes later a beigy, tan pick up pulls into the front yard and out steps Duncan. There is no talk of cancer, but all 3 of us know that cancer is the impetus for the visit. It is a welcome visit nonetheless. Melanoma Man says it is the equivalent of the hugs he receives at church since news of his cancer started seeping out. I tell him it is ok. "People love you. Let them."

Later on another pick up arrives. This time Tommy steps out with a loaf of homemade cinnamon bread made by Jan. Brothers Wayne and Doug stop by as well.

Vacation Day 2
iMac and Butter are getting accustomed to being brothers again after a full week apart. I spent the night fitfully, mostly due to an over active cat. Cha Cha had spent his whole day in the car and he had lost time to make up for, leaping from the floor onto the 5 foot tall dresser and then onto my pillow from there seemed to be a good way to spend his night time. I let him out more than once. When ready to come in he would arrive just outside the bedroom window, leaping up to bang on the screen. I gave up around 5, hit the button on the coffee maker and stepped out onto the screen porch to find Cha Cha's gift for me, a now deceased young rabbit. I found a piece of cardboard to slide him onto and walked to the edge of the woods for an impromptu gravesite. Cha ran behind me all the way, as if to say "That's not trash Mom! Don't throw it out."

Melanoma Man snuck off to the grocery store while the kids and I walked and biked to the river. He came home exhausted, dark purplish circles around his eyes, but pleased to have been of service. I offered to make dinner. "No I would like to," he said. "Spaghetti Bolognese!"  

I remembered my Dad coming home from work one night telling Mom about the delicious "pasta" he had for lunch at some downtown DC restaurant. "Pasta? Are you talking about spaghetti? Since when do we call spaghetti pasta?" The memory made me smile and think to myself, "noodles with meat sauce."

After finishing the meat sauce preparation Melanoma Man, Butter,iMac, and cousins Maddy and Jackson ventured to the river for afternoon swim. It is so hot here in the Sandhills of NC with no AC in the summer that the twice daily dips in the cold Lumbee are a necessity. I'm so spoiled that it's hard for me to think of it as a vacation without AC. The White House as the family calls it, is vacant most of the year. Dust and pollen and sometimes petrified squirrels crop up in the house when it is empty. Brother Wayne evicted several families of mice prior to our arrival. In addition the kitchen and bathroom had recently had a good scrub down, so there was less work for me to do this year. I focused on the side porch, sweeping cobwebs, dust, dirt, pollen, wiping down pollen encrusted furniture and airing out cushions. Then I set my mind to the front porch. Cha running behind something small and scared, pounced and almost instantly his second rabbit of the day was dead. It was an affront really. Here I was trying to create order out of chaos, clean out of filth. Here was my cat, stealing this rabbit's life. And I started to cry, not so much for the rabbit, but for the loss of innocence, as I thought about sweet Butter and iMac and all the things I cannot spare them.

Vacation Day 3
Although it rained most of the days the boys managed to get plenty of river time with their cousins, along with a few bike rides around the block, as we say of the dirt road down to the river. Wayne came over in the morning with an ingenious Plan B. His plan is so good that we are now calling it Plan A. Plan A involves Melanoma Man recuperating at home. Wayne will bring the children and the cat home on the weekend. He's left it up to me to break the news of our plan to Melanoma Man, which I think I should do in the morning.

Vacation Day 4
Another night with not much sleep for MM. He called me to the side porch to talk where kid's weren't eavesdropping. "I don't think I should come back to North Carolina the day after radiation. It's just too much"

"Super!" I replied before telling him that Wayne had already hatched a plan and that Wayne and I were in cahoots. He thanked me and Wayne for making him the beneficiary of our plan.

Butter was fine with the plan, freedom from Mom & Dad! iMac cried, but wasn't so distressed that he wanted to go to Moffitt with us tomorrow.

It rained and rained and rained all the way down 95. I don't recall having ever driven through so much rain than I have in the past 3 weeks.

Friday, June 28, 2013

Melanoma Man vs. Young Healthy Radiation Oncologist

And the winner is... Young Healthy radiation oncologist!!!!! He was a long shot to win, but he did it. I don't really know if the doc was young except from his pic on the website. I didn't go to this appointment, attempted, but was quickly overruled by the MM. Gotta pick my battles. Stereotactic brain radiation has been scheduled for July 3rd. And I'm driving as mandated by radiation oncologist. I love it when people with authority back up my decisions. I think "well I am a genius after all. Didn't go to Princeton, but what I've got is worth more."  I like to tease Melanoma Man about his fancy Princeton education.

The house has been quiet since Sunday when iMac left for the church mission trip. Last Saturday was imac's 13th birthday. He wanted to go to Aquatica waterpark in Orlando. This is my second favorite waterpark. The first being Wild Wadi in Dubai. It was the first time iMac and Butter have been there without Melanoma Man. We brought an extra set of parents and one extra kid to pad things out a bit. Melanoma Man was there for the birthday eve dinner, birthday breakfast and present opening. After breakfast he drove home so he and ChaCha could watch golf on tv, safe from the sun. I obsessively applied sunscreen to the kiddos every 90 minutes. I so wanted to whisper in the ears of the sleeping sunbathers, "Mela-noH-maH, it's coming to get you." Most folks wouldn't consider that friendly, so I refrained. These days when I walk on the beach I have an urge to throw large towels over people, like I'm some kind of new superhero coming to their rescue.

So I'm getting ready for my VAY CAY TION. Lots of people have said things today like: "Have a great vacation!" and "Enjoy your time off!" I'm driving the kids to stay with Uncle Wayne while Melanoma Man and I return to Tampa for his brain radiation. Have a great vacation? Really?

Tuesday, June 25, 2013

Lost in a Bad Neighborhood

That's where I've been lately. Unfortunately I take these dark alleys with me wherever I go, because this bad neighborhood is  of my own making in my very own head. Sometimes I get lost there, even though I designed much of it myself. There are words and numbers in these alleys, like Median Survival time. This is where the hurt feelings and the bad decisions in my life lie.

The pace of life seems to have picked up since Melanoma Man's brain tumors popped up. I spent a good week being furious with him and feeling utterly powerless and mad at myself for being mad at my cancer patient. There is lots of waiting, some of it necessary, some not so necessary. Joel, a friend of Melanoma Mans for 38 years, was in town from California visiting last Wednesday and Thursday. Joel was the Best Man at our wedding. Melanoma Man deferred his consultation with the Radiation Oncologist until this Wednesday due to Joel's visit. I suspect he will defer the procedure itself when they try to schedule his stereotactic brain radiation during Fourth of July week. "Fourth of July week? No absolutely can't do it. We'll be in Riverton, family picnic, reunion, can't miss it." Riverton on the fourth is, a gathering of 200 or so of Melanoma Man's relatives for a picnic, catching up, swimming in the Lumbee. These are the reasons to live, visits from friends, hanging out with family, sharing stories and memories. I remind myself that it's about the living, it's about the people, not the procedures.

Saturday morning when I awoke the word "forgiveness" popped into my head. I know that this is the way out, out of my head.

On the way home from dinner with Joel on Thursday the conversation turned to valet parking. Butter chimed in from the back seat, "They have valet parking at the cancer center." This was it, Melanoma Man's opportunity to break the news to Butter and imac. He told the kids about the brain tumors. imac was silent. Butter wanted to know, "Will they get it all? Will more come back?" When we answer truthfully Butter acts like he can't hear us. He has started kneeling on the kneeler at church when it is time for the prayers of the people instead of reading Calvin & Hobbes. He is praying fervently.

Friday, June 14, 2013

Bad Karma

I wonder if there is a weekly quota on bad karma? If so I may have met my quota just now. Whoo Hooooo! The good news is that I am fine. Bad news, just got rear ended in a torrential downpour. The offender appears to have continued on their merry way without so much as a "Hello, how do you do? Here's my contact information and my car insurance." It really would have been thoughtful, don't you think?

Read this

A beautiful post by Patient #1's wife, Jen, on being a caregiver

Caregiving by Jen, wife of Patient #1

Wednesday, June 12, 2013

Brain Mets

That's cancer talk for "the melanoma has metastasized to the brain." I was expecting something "not great" today, but yet unprepared for Melanoma Man to have 2 new brain tumors that weren't there just 8 weeks ago.

I started the day sitting by the hotel pool with Butter and imac, stopped in the lobby for towels and overheard the receptionist say "Ninety percent of our business comes from Moffitt Cancer Center." More evidence poolside where I chatted with 2 sixty something women, both with long grey hair and glasses. I could just picture them at a Grateful Dead concert for some reason. One there with her husband, a bone marrow transplant recipient, the other there by herself for radiation of what she simply called "my tumor." She looked lonely and she had no teeth. I kept fighting with myself, should I engage in conversation or pretend I am wearing my invisibility cloak? The answer was clear. I asked her where she was from, when she was diagnosed with cancer. It was good that I did. She had been sick for awhile, but no health insurance. She had a job, but when her son got sent to jail the household income was cut in half. She couldn't afford to pay her car note or utilities on just her salary alone. Her car got repossessed. She couldn't get to work. She got fired. A neighbor took her in. The neighbor could tell she was in pain, that something was wrong. The neighbor took her to the health department. They said they couldn't do anything. The neighbor took her to a rural health clinic run by a charitable organization. Two weeks later Moffitt accepted her as a patient, knowing she has no way to pay them. The neighbor, Wow, that was just what I needed to hear. She enjoyed watching Butter and imac play in the pool and told me that she has an eleven year old granddaughter. We wished each other well.

An hour later Melanoma Man, Butter, imac and I were at the CRU(Clinical Research Unit). Then to Starbucks in the lobby until time to see The Weber in the Cutaneous Clinic. That's what Melanoma Man calls his oncologist, Dr. Weber. A minute before we got called back Melanoma Man leaned over and asked "What if the news is bad, what about the boys?" I had thought about micromanaging this issue, but realized that these oncology folks know how to handle this. We were escorted to an exam room, someone brought a gown in, Dr.Weber peeked his head in, then Jan appeared. "Dr. Weber has some things to talk to you about so I'll take the boys back to the waiting room."

Melanoma Man looked shocked, as if the possibility of bad news had been very very remote. He was speechless for a moment. The Weber came in and said: "Well the news is not horrible, but it's not good." He laid out a plan for getting a more detailed MRI and then a stereotactic radiation. 

I went out to the waiting room while Melanoma Man scheduled the MRI. I thought for sure Butter and imac would ask "Is everything ok? How's Dad?" Not a peep out of either of them. So we have a little time to digest the information before we tell the boys.

Sunday, June 9, 2013


I forgot my hair appointment today, which is out of character. A bit of stress on the brain, anticipating the upcoming Cancer Center appointments. Not nearly as dramatic as the time I left the keys in the Cadillac, with the engine running and the car unlocked ALL DAY at work. I'm sort of famous at work for this, at least with the medical center security staff. I was once again reminded that I have an angel the day that happened. It wasn't even cancer that evoked that response. It was my health insurance company. Waiting for approval on Melanoma Man's Zemaira which treats his Alpha 1 Anti-Trypsin deficiency. We waited about 9 weeks and then no one could tell us what it would cost us out of pocket. We found out the hard way when a bill for $10,000 came in the mail 6 months after he started treatment. It's a steal compared to the full retail cost, which is about $96,000/year.  Saturdays are usually crazy for me under the surface, trying to inconspicuously wash all the sheets and clothes, sweep, mop, clean bathrooms etc when melanoma man isn't looking. Last night cleaning kitchen counters Melanoma Man walks in with THAT face on. It's a face that makes me want to smack him, but I never do.  "I feel so unworthy," he says and then I feel a little guilty for my thought crime.

"Too late for that. I already love you, you can't give it back. Just accept it." I said

"Look at this," he shows me his swollen elbow. It has a pouch of fluid that feels like a water balloon just under the skin. "What is it?" He says.

"A ruptured bursae I suspect. Does it hurt?"

"It's been hurting for 4 days, but mostly it's scary, not knowing what it is. My shoulders hurt too. I can barely lift my arm."

"Yup, that's probably bursitis too, just not ruptured."

"And I ache all over. My book is in the car, but I was too tired to get it."

It must be terrible to be betrayed by your body. He apologizes for what he perceives as complaining. I don't see it that way. "You are not supposed to carry all the burdens by yourself," I say. I don't say, but I do think " you act like such an asshole when you are pretending to be fine." 

Next week 2 days in Tampa for CT scans, MRI, labs, EKG, physical exam and results. More results. I took the two days off from work so I could stay home with the kids. My plans foiled again. "I'm taking the boys with me. You don't need to take off from work," he said.

"I am coming on this trip," I said. Too bad so sad. He is such a control freak. He changes the plan again, so I change my work schedule again. I'm not going to have it, him taking the kids by himself with a very high likelihood that the tumors will have grown.

Today we have the afternoon, evening, and night to ourselves. Friends A & K have invited the boys for an overnight. They are practicing their grand parenting skills or so they say. I think they are really just practicing extreme kindness and thoughtfulness. They have 5 grown boys between them. It's been years since we went on a date or had any time to ourselves. It was possible to do every week when we lived overseas and our dollars went a long way. Here in the USA it's more of an investment.  He is so in love with the boys that I have often felt like an outsider. 

Back when he was managing energy projects in developing countries he managed a lot of people. When he counseled staff about work performance he always started with a compliment before proceeding into what was supposed to be constructive criticism. Unfortunately he has applied this technique at home as well. Every "I love you," followed with "but..." So much so that I would do almost anything to avoid hearing the first half of the sentence because I knew what was coming. I get on his nerves and he gets on mine. That's where my fantasy of having my own cottage in the backyard came from. I just don't particularly see the point of telling him what his flaws are,  so I have never done it. Most of us already know our own flaws by heart. Whenever I might tell him I love him he would ask why. "Because, that's why, so there, love is a verb, now I have to provide supporting evidence? Are you kidding me?" The evidence is that I see the flaws, all of them. And I'm still here. I'm still here.

So with no kids to manage we had a picnic of carry out from Moe's and watched The Help in our living room. I sat still for the whole movie. If you know me you know that this is a miracle, this sitting still. My To Do list is almost always running in the background. Tonight for the first time since before we married he said " I love you," without the "but." It was worth sitting still for.

Friday, May 31, 2013

Size Matters

Melanoma Man was back at the cancer center 4 Wednesdays ago. I decided to treat myself and take the whole day off from work, instead of racing downtown and then back home in time for early release to pick up kids. What is this "early release" thing anyway. Middle school gets out at 12:50 p.m. every Wednesday. Up north when I was a kid we called that a half day and that's what we did in kindergarten, half days. I digress. After getting the kids off to school I walked on the beach for an hour and a half. Home to do laundry and other assorted household chores.

This month's cancer center visit included labs, EKG, a visit with the Oncology Nurse Practitioner, a visit with the Research Nurse Coordinator(Letitia). I emailed Letitia a week ahead of time to ask that the new skin lesions be evaluated. Oncology Nurse Practitioner eye balled them and said "probably cysts." That wasn't what I had in mind. Perhaps I should have been more specific, as in "Please have the Dermatology Nurse Practitioner or the Dermatologist look at them. Customer service people! Is there no customer service in healthcare. I know the answer to that question. No, there is not. Wouldn't it be common courtesy when your patient has driven for 4 hours to an appointment and has been bleeding money into this "out of network" cancer center, this buying of time. There is no "in network" melanoma specialist, so they've got me there. The choice is pure illusion.

My mind drifts back to the year 2000, when my mother was hospitalized for a severe headache and double vision. I flew down to Florida from DC. Standing at her bedside, talking to her internist, wondering out loud about ordering a  Neurology consult and the head CTscan. Shouldn't that have been obvious. Then the results came in, an aneurysm deep inside her brain, in the cavernous sinus. The neurologist and internist telling me that no one would operate on this. I called Bryan, my skull base surgeon friend, surely he would know. He did know and he pointed me to the Sheik, that's what I called him, really Laligam Sekhar, one of 25 surgeons in the world who might take on the job of putting my mother back together.  I remember Melanoma Man, fiercely afraid of hospitals and all things medical, pulling me out of my mother's room in the ICU to show me the "really sick people" that inhabited the rest of ICU as I cried and worried about her swollen shaved head and her wildly erratic blood pressure and her brain of course. It was midnight. I had been at the hospital since 5 a.m.  "She is going to make it, and you are coming home and going to bed." I was pregnant with imac at the time and was making my last ditch effort to turn her into a decent grandmother before he was born.Melanoma Man was right, she did make it,  but the grandmother cause at this point was hopeless.

In April Melanoma Man came home from CT scans at Moffitt declaring, "Two of my six marker tumors are no longer visible on the CT." I was encouraged, yet something in his voice told me that wasn't the whole story. This week he laid April's CT report on the kitchen counter, where I usually check for mail. The rest of the story was in it. Two of the remaining marker tumors grew in size by 20%. To me a much more significant piece of information than the two disappearing tumors. The twenty percent increase means these two previously shrinking melanomas have developed drug resistance.

I've filled these past few weeks with walks and books and even movies, getting lost in other people's stories. Fourth grade and Seventh grade come to an end next week and summer begins.

Some days it's hard to show up for real life, like the Saturday afternoon that imac and Butter were invited to see Iron Man 3 with friends. Melanoma Man knew other moms would be there to mind the children. He asked me to come home and hang out with him. I so wanted to spend the afternoon watching Robert Downey Jr. to escape into the busyness of children's schedule, to escape into the imaginary world of a movie. Just to go or be anywhere but in the last act of Melanoma Man and Laundry Thief. I did the right thing. I went home. I watched golf on tv with Melanoma Man and read my book and talked about the week's articles in the Economist. It was ordinary and yet so hard. Most of the time I end up doing the right thing. Most of the time.

Friday, May 10, 2013

Home, there's no place like...

Melanoma Man is on a road trip this weekend back to the family home in North Carolina. He comes from a place where the streets, and mini-marts and dirt roads are named after family members, where historical markers on the roadside tell stories of his ancestors. He's got roots. It's totally foreign to me. I feel hydroponic in comparison. Nevertheless, this family that gathers every Fourth of July has welcomed me ever since I was just some 25 year old he brought home. All my life I kept clicking my ruby slippers, trying to get home. I was the sickly child, the somatosizer, the oversensitive child. I just felt too much. When I wasn't fighting the Civil War in the pasture or playing basketball with my brother Johnny Reb in the driveway, I was in bed with stomach aches, sore throats, headaches, fever, vomiting. Some years I missed so much school that it was threatened that I would not be promoted to the next grade. My grades were good, excellent in fact. I was always promoted in spite of the threats.

Eventually I found home. Home was with Melanoma Man. I stopped getting sick until his travel schedule picked up significantly. Melanoma Man's work had him out of the country eighty percent of the year. I started getting sick every time he left the country. One particularly difficult night of vomiting and headache landed me in the ER for dehydration. I was pregnant with Butter at the time, but didn't know it. My pregnancy test in the ER came back negative. My ER doc's diagnosis was tension headache. After a bit he sat down next to my bed and asked: "Where is your husband?" I replied: "He's in the former Soviet Union." 
"He needs to come home, now. Can you call him?"
"No, but I can email him."
"You go home and email him and tell him he has to come home for good."

I'm not sure how this ER doctor knew the source of my ailment, but he did. I tried to put on a brave front during Melanoma Man's travels, but he saw through it. 

I have found myself  irritated, annoyed, and angry with Melanoma Man during these cancer months, trying not to need him, trying in fact to dislike him intensely. Knowing that I am losing home.

Thursday, May 9, 2013

Almost Normal

For the past four weeks things have seemed almost normal. November, December, and January felt as if we were in a nose dive heading straight for earth. Then something happened, in the canyon we leveled off parallel to earth but very very close, gliding, wondering when the fuel will run out, while we try to appreciate the view. Sunday I finished a scrapbook layout, something I haven't done since the week before August 20, 2012.  Melanoma man made dinner. The sun came out after a week of rain and running the pump in our back yard to keep the water from coming in the house. I went for a walk on the beach with my Stephen minister, Kathy.

I ran into a friend at church last Wednesday night. She has been asking if she could bring dinner for the last 3 months and every time I have said no. This week I said "YES." I put it on the calendar and Melanoma Man asked me: "Is this because of the cancer?" Well yes it is. So there.

Saturday I met a friend and we went to have manicures and pedicures. Well that's not normal for me, that's new normal.  I made Mother's Day cards for my two moms, birth and adoptive. Melanoma Man and I sat on the sofa and talked about a workshop for caregivers he attended  on Saturday. Admittedly he said I should have attended. I'll get the book.

I saw the new quarter sized black lesion on his right leg, trying to take in as much detail as I could, comparing it with the images in my brain of his past keratoacanthomas, melanomas, basal cell carcinomas, squamous cell carcinomas. This one appears to be a breed I haven't seen before. There is no reference for it in my brain. The blackness, along with another black patch worry me. I try to avert my eyes and Carry On as if I have seen nothing. His next appointment at Moffitt is next week. They will figure it out. I don't have to. Images of all the dressings I've changed, stitches I've removed, waiting rooms I've waited in flit across the screen. I try to turn it off. Be here now. Be here now. Four weeks at a time between cancer center visits, I tell myself: "Don't waste this time."  As if I can grieve ahead in advance of bad news.

This morning I wake up and remember our wedding day, fifteen years ago today, just down the street in what was then my parent's home. We packed a whole lot of living into these years.

Friday, May 3, 2013

Mother of Two, Boo Hoo

Before we married Melanoma Man and I talked about having two children, as if it was all up to us. Thinking we were in charge of all the variables, and because we said so things would just happen the way we planned. The fact of the melanoma was there from the start. I pushed it aside, tried not to look. Two years after we married imac was born. Again it was a planned event. I planned to use self-hypnosis to get through labor. My walking partner, Judy, mother of three, physician and epidemiologist had done it. So I figured I could too. Judy's Dad was a psychiatrist and had taught her self hypnosis. She used it for the birth of all three of her children. My friend Marianne was a Doula and a Bradley method instructor at the time. The evidence was all  around me that natural childbirth was feasible. After a bit I found a class, HypnoBirthing, one state away. Melanoma Man was game. We spent 8 weeks with six other couples watching videos of women quietly giving birth. There was no resemblance whatsoever to what I witnessed during my labor and delivery rotation in nursing school. I decided to believe in Hypnobirthing anyway. We had guided imagery scripts to practice with and a cassette tape, a t shirt and a pen with the Hypnobirthing logo. We did our homework, practiced. Pretending to give birth is like pretending to be dying I'm guessing. The pretend version really doesn't do it justice.

Imac's due date came and went. I had a doctor's appointment on his due date. Dr. B determined, "Nope it won't be today, not dilated." He gave us a time frame, after which, if labor had not begun, he would induce. I left the office crying. Dr. B. knew of my plans to use HypnoBirthing and to his credit he was not critical, offered no opinion, let me know I could change my mind at any time. That afternoon Melanoma Man and I went on a long hike, ate spicy food, did everything we could think of to induce labor. Nothing. Ten days would pass. On the tenth day I woke up around 5 a.m. feeling crampy. This is it. This is the day! Melanoma Man started in with the HypnoBirthing scripts around 7 a.m. We timed contractions and went to the hospital around 11 a.m. when the contractions had reached the frequency that warranted it. To my dismay I was only 2 cm dilated, zero percent effaced. I was advised to walk the halls, which I did for 2 hours. Then we were sent home. "How will I know when it's time to come back?" I asked. The labor and delivery nurse replied, "Oh you'll know. You will know."

Dutifully Melanoma Man read the scripts, checked on me. I didn't feel like I was on a pink cloud. I didn't feel like I was going to be ok and soon I started vomiting. The vomiting broke whatever little bit of spell the hypnosis might have cast and it continued every 20-30 minutes or so for the next 19 hours.  Back at the hospital I  wouldn't let Melanoma Man go to the cafeteria for dinner and I wouldn't let him eat the snacks I packed for him either. After 20 minutes or so, he said he was "stepping down the hall to the nurse's station." I knew he was going to the cafeteria, but I liked the idea that he was just down the hall, not two floors down in the cafeteria. Although I was in no medical danger whatsoever I became convinced that I was going to die and this is why it was absolutely imperative that Melanoma Man NOT leave the room. I thought that dying would be OK really. I thought Melanoma Man would do just fine as a single Dad. By this time I had already thrown in the towel on Hypnobirthing,  asking my labor and delivery nurse for whatever relief modern medicine could afford me. "Not yet, too soon," she said.

Around 10 pm the anesthesiologist arrived to put in the epidural. I was prepped, in position sitting on the side of the bed,with my back beta-dined and ready. A contraction started. I asked him to wait. "No, this is the best time to put in an epidural, during a contraction," he said. I was doubtful. Next the pitocin drip to try to strengthen the contractions. Around 3:30 a.m. Dr. H came in and said imac had still not dropped and that I was only 4 cm and not effaced. He recommended a C-section, to be performed by his partner when she arrived at the hospital after a full night of sleep. Imac was delivered at 8:38 a.m. At this point I had decided to retract my earlier decision to have two children. One would be just fine.

At home I took everything too seriously. I couldn't watch the news or the television show ER or anything which might include bad outcomes or danger. I was stunned by the responsibility of this one baby, this one baby that I would leave at home to go back to work in 5 weeks. Melanoma Man ran the show for the first month, during which I was totally irrational. He had baby care down in a week. Thoughts of melanoma returned. I remembered a patient I'd had, showing up 5 years out from her first melanoma with a tumor in her jaw. I thought maybe I could manage raising one child by myself, but certainly not two. Twenty years as a litagator, he won that argument, as he has won most. I finally fessed up to Melanoma Man just last week, once our two children ages 10 and 12 were in bed: "you know the real reason I didn't want to have two kids was my fear of the melanoma coming back and me doing this on my own. Now I can't imagine imac without Butter or Butter without imac."

Saturday, April 27, 2013

Strangers for Dinner

I should have been worried about cleaning the house on Monday night. Melanoma Man invited the entire Cub Scout den, their parents and siblings to our house for dinner this past Tuesday night. I guess this is part of his Carpe Diem. I seriously considered having my boss drum up some kind of work crisis. Since I work in a clinic which has a closing time rather than on a hospital floor, it would be difficult to finagle such a crisis. Tuesday is a weeknight for God's sake. No one invites this many people over on a week night when the only able bodied person in the household is downtown until 5. Melanoma Man has been issuing such invitations without consulting with me since we were married and it has been driving me crazy ever since. He claims I have a bad attitude. This handsome label is applied to me anytime my opinions or views are not aligned with his, which is more than 50% of the time. Most of the time I keep my opinions to myself, having given up trying to be heard years ago. I spend 40 plus hours a week tending to people, then who knows how many more hours on my own 3 people and cat at home. NO, I do not find it relaxing, interesting or entertaining to have a houseful of people already waiting for me when I get home. I am an INTROVERT underneath it all and this type of occasion is not my forte.

I showed up. It was ok, just as my advisory committee at work(Cici and Nancie) had promised. Most folks don't know about Melanoma Man's melanoma or alpha 1 anti-trypsin deficiency and he doesn't want them to know. That leaves me to pick up the slack so he can maintain the illusion. But this time I had allies, a select few other Cub Scout parents with whom Melanoma Man has shared his secret medical battles. The six of them acted as set up crew, cook, referee, and clean up committee with no questions asked. So it was that I didn't see all the strangers, all the kids and parents that I don't know. I only saw Charles and Bob and Oona and Denise and Rob and Maria.There was a reason for me to show up, to see these six and to see that I am not alone.

Wednesday, April 17, 2013

Thank You

Melanoma Man back early tonight from Tampa, with more good news. None of the tumors have increased in size, some too small to measure. Dr. W. tells us that June through December will be the time to watch for the Melanoma to fight back. We remember back to November when Dr. W. told us of "the two guys" still here 3 years into their Vemurafenib treatment.

Tuesday, April 16, 2013

The night before Moffitt and all through the house...

Waiting in the upstairs hallway of our church parish last night, the very same hallway I waited in last October. This night is relatively peaceful, waiting for imac, the BoyScout. In October I waited for imac, the flutist. October's hall waiting was interrupted by Melanoma Man's phone call with the official confirmation by the oncologic surgeon that MM's lungs contained multiple tumors. I knew multiple meant "too many to count." He was upbeat during the call, as usual. It is both maddening and endearing how upbeat he is. Maddening because I carry the burdens of reality. Endearing because it allows him to relish all the little moments with me and the boys.

At work today I am thinking. Now he is in MRI, now CT scan, now Clinical Research Unit. Not thinking of much else, except for things like: my friend Sara is picking imac up from school, now she is picking up Butter. She sends a text to let me know the boys are at her house playing ping pong. Another text from Melanoma Man: "scans done, hotel."

Four thirty, finally time to go home. Not that work has been particularly hard today. Just that Moffitt days break up the bits of normal and remind us all of cancer. These past three weeks MM has really seemed almost himself again, like a guy who only has Alpha 1 Anti-Trypsin Deficiency and 28 % lung function. This is positively relaxing for me compared to being married to the guy with Alpha 1 Anti-Trypsin Deficiency and Metastatic Melanoma.

I did have the best pedicure I've ever had in my whole life on Saturday. And no one called me while I was out. Not one kid, called from the Kidphone to say: "Mom, I'm bored. Mom, when are you coming home. Mom he's looking at me. Mom, Dad is mean." It was truly a gift. I'm pretty certain God was involved. He was reminding me how lucky I really am. He was reminding me that it was my 25th sobriety anniversary and that without that I'd have none of these characters in my life.

Tomorrow more news. We'll get CT scan results of abdomen, chest, and pelvis. We'll get MRI results of brain.We'll find out if we just bought 8 more good weeks until the next set of scans. At work, I'll try to remember that I am at work and I'll try to remember to work, while I wait for my text of test results from Melanoma Man.

Tuesday, April 9, 2013

Snacks, and Shoes, and Legos! Oh my.

Sometimes it's the little things that just make my week. This week the little things are snacks, shoes and Legos. This weekend, after my dramatic realization that the Legos are overtaking my home and life, I told imac and Butter that we would make Lego display cases for their rooms. After they cleaned and vacuumed their rooms I took them to Home Depot and they put together these primitive cinder block bookcases for about 20 bucks each, or half the cost of a Lego kit. It was key that they do their own vacuuming, ensuring that when they heard the tell tale clickity clack of a lego piece getting sucked up into the vacuum, it would be a tragedy of their own creation. They were extra careful to prep the area on hands and knees ahead of vacuuming. "Oh well, too bad," I could say, but alas no clickity clack. They carried all the cinder blocks and boards into the house and assembled their shelves. I wished I had more manual labor for them to do. I repaired a lot of split rail fences, cleaned a lot of stalls and hooves as a kid and sometimes I wish I had more of that for them to do around here in sunny suburban Florida. Which reminds me, how did I end up here again?

My work shoes have been getting me down lately, so I replaced them and I much happier every time I look at my feet.

Finally snacks, the dreaded snack problem. Melanoma Man complains to me for the umpteenth time tonight that Butter does NOT like the after school snack Melanoma Man brings in the car each day.It is a different snack each day. I explain to Melanoma Man for the billionth time that it is NOT about the snack. It's about autonomy, the choosing, the  independence, being included. I offer my usual suggestion: "Why don't you have the boys pack their own snacks in the morning before they leave for school?" I am met with stone cold silence, the putting on of reading glasses and raising of book, as if to say "You are not here Laundry Thief. I cannot see you and I cannot hear you. The End." It's a simple solution and it will work, unless your goal is to compete with your 10 year old for your wife's attention. I'm not sure what the goal is, so I filled a basket with snacks, put it by the front door and asked the boys to pick one in the morning and put it in the car. Ta Da!

These small, tiny, minute and irrelevant things made my week

Friday, April 5, 2013

Legos have taken over, I want a place of my own

I suspect there are other working moms like me who come home to backpacks and jackets lying in the hallway, living room overtaken by legos, kitchen island covered in books, apples, legos, mail, a pair of boy scout pants that has needed hemming since the beginning of time. I say "working moms" because in my imagination the stay at home moms have got it all under control and would never let this happen in their house. Some days it feels like it's the final straw. Yes I think, it must be time for me to move out and get a place of my own. Somewhere along the way I got lost in the creation of this family.

I surrendered the Mom job to Melanoma Man years ago. Honestly I think I'm better at it too. Although to give him his credit he's done beautifully in the Dad role. In the evenings and on the weekends I take the Mom job back, bit by bit, trying to instill a bit of my way of doing things into the people in this house. I am usually only temporarily successful, with things returning to the usual state of affairs by the time I walk back in the door the following day.

I remember my Mom alerting us when my Dad left the office. It was a 25 mile commute for him, so that gave us time to pull things together. No toys, books, coats, debris in the living room, dining room, or kitchen. Everything put away or in your room by the time Dad got home. Now I really get it, as I trip over oodles of other people's belongings on my way into this house.

I think somehow that books will help me accomplish my goals, so I'm working my way through these two books:

1  Cleaning House: A Mom's Twelve Month Experiment to Rid Her Home of Youth Entitlement  and
2  The Crumpled Paper Was Due Last Week .

I'll report back on my progress. I'm still recovering from spring break when I worked while Melanoma Man, imac, and Butter stayed home and trashed the house. Now that Melanoma Man is in a relatively stable period and I'm no longer in crisis management mode, all the things I always wanted in this marriage and this family have bubbled up to the top. It is clear that it ain't gonna happen and I was a fool to think it ever would. Each truth is revealed in it's own time. This truth revealed either too early or too late.

Tuesday, April 2, 2013

Songs of Easter

Up at my usual weekday wake up time, 5:40 a.m., this Easter Sunday morning. The boys were surprisingly easy to get out of bed. Fifty five degrees out and a clear sky. We bundled into the van with our folding chairs and jackets, heading for the beach. I walk on the beach every week with Kathy, my Stephen minister. She says faith in God comes easier when you are looking at the ocean or the Alps. I haven't been to the Alps yet.

Easter service started at 6:45 this morning, in the dark with this song: Here is Our King, followed by In the Name of Love. The songs broke through and I felt it all. Most days I am a kite barely tethered by my kite string to the reality of my day to day. That way of living has it's pluses and minuses. I can still see what's going on, but I can't feel anything good or bad. Today thankful that oldest son, imac, carried Melanoma Man's chair to the beach for him, this time unprompted by me.

By 9:45 a.m. the boys (imac and Butter) and I are at a friend's Easter Egg hunt. I am surprised that imac at twelve is willing and eager to participate. Halloween was a no go this year, " I'm too old for that Mom." I wonder what the critical difference is between Halloween and an Easter Egg hunt that makes the egg hunt plausible for this twelve year old boy. No costume required? That could be it. imac announces in the back of the car, "I like to help the little kids who can't find any eggs." Hmm, altruism. Happily, at the end of the hunt I find him sitting on the lawn sorting through and tasting his candy just like any other "little kid."

There is no special meal at our house for Easter, which I think is just as well. Yesterday Melanoma Man went looking for a leg of lamb at Winn Dixie and came home empty handed. "Yet another reason I don't like Winn Dixie," he said. Our local Publix has been torn down. A new one to be built in it's place. I am relieved, not so secretly. I can't stand lamb or the smell of it, nor can the kids. No special meal to prepare, Melanoma Man can sit on the couch and watch golf this afternoon, eating Tostitos with Winn Dixie Chipotle salsa, the one thing Winn Dixie does right. He is flu-ish and achey today, as he is two or three days of each week.

imac, Butter and I spend the afternoon in our backyard playing badminton with no net and soccer with no goals. I'm not terribly coordinated or athletic. They don't care. I think they just enjoy seeing me play, laughing at their goofy mom, having no agenda or "to do" list.

In the evening we watch Meet the Robinsons, which is one of my all time favorite movies. I haven't seen a "real" movie in about 12 years, since imac was born. Just Pixar and Disney. The movie ends with this song: Little Wonders. My day has been filled with them, these small hours, the little wonders. Best of all I showed up for them.

Tuesday, March 26, 2013

Evening Snippets

Tonight home from work, a letter waits for me on the kitchen island. Return address Seattle. Oh! it must be from Aunt Glor. I love, love, love Aunt Glor. She makes me laugh, she believes in me. But the letter is not from her, but from cousin Leslie. Aunt Glor died on February 22, 2013. She shared a birthday with my Dad. This dying business has got to stop. Enough already.

Later this evening in our room folding laundry. Melanoma Man, a bit discouraged by the cascade of medical bills raining down upon us: " I can't remember what I came in here for, but I saw the laundry, felt guilty for doing nothing and my wife doing everything, and I started folding."

Me: "you are doing the most important thing of all, spending time with your sons, talking about baseball , legos, books, whatever they want to talk about."

Melanoma Man: "Yeah, but that's just being a Dad."

Me: "Oh, so did your Dad do that with you?

Melanoma Man: "No."

Laundry Thief: "My point exactly and that's why I love you."

Melanoma Man: "love you too, don't ever forget it."

Monday, March 25, 2013

Spring Break

This week featured 2 trips to the Cancer Center for Melanoma Man. The first on Wednesday, by plane, with apologies for spending the money. No apology needed. I worry about the 9 hour roundtrip by car in one day. There's the professional warrior and the professional worrier. I am the latter. He forgot to bring his investigational drug home with him on Wednesday. The study protocol wouldn't allow them to ship it, even at our expense. So back to Tampa Saturday by car. I'm not totally heartless, I did offer to go. He is totally independent and doesn't need no wife driving to Tampa for him. So off he went.

I've developed a new diagnosis for the DSM V ( Diagnostic and Statistical Manual of Mental Disorders).  Obsessive Compulsive Card Making Disorder. The good news is that if things go as planned I'll make some $ off the cards. If things don't go as planned, you lucky readers will have happy happy birthdays and reasons to smile unexpectedly when you go to the mailbox.

Side effects. I'm experiencing a good one from dropping out of graduate school. I wanted to believe, believe, believe, that I could do it all, keep these plates spinning in the air. There would be a sacrifice and I thought I saw it out of the corner of my eye, just barely. Nothing blantant, not overt. Only I could see it. I was losing my oldest son. I became invisible to him. The unavailable Mom, the don't bother Mom, the mom is too busy, the "you are 12-do it yourself" Mom. 

It's been 4 or 5 weeks since I dropped out and just this week he started talking to me again. "Mom, let me tell you about the plot of the game I'm playing," or "Mom, you won't believe what happened on Clone Wars," or "Mom, can I summarize the book I just read for you?" His summaries are exceedingly long and exceedingly boring, but they are the way in to his heart. His sharing them with me, a sign that all is not lost. And last night he said: "I wish you didn't have to go to work on Monday." 

I am reminded again that I am just where I am supposed to be.

Sunday, March 17, 2013

Little House on the Prairie

I read the whole series of books to my oldest son, I, when he was about nine years old. I thought the pace might be too slow or boring, but it wasn't. He was fascinated to hear how kids lived in another era. Some days I wish I could go back in time..

We celebrate this week, tentatively. Word is the tumors are still shrinking. Melanoma Man calls from the road on Wednesday, "I've got PVCs, but it could be nothing. I'm supposed to get a rhythm strip done when I get back home." He tries to joke with me about PVCs being polyvinyl chloride, rather than premature ventricular contractions. But I'm not biting. He's in a toxicity study, pre-clinical trial to see if XL888 should even go to clinical trials.

I know the PVCs are not anxiety or "nothing" as he would have me think because they do an EKG at every visit and this is the first time the PVCs have appeared.

Thursday morning I hear him on the phone with the call center of the university medical center for which I work. He's leaving a message for his primary care doc. He tells the person on the other end: "I had a routine EKG at my other doctor's office yesterday. I'm having PVCs. I need to get a routine rhythm strip done. Is that something Dr. A can do?"

Off the phone I tell him that he needs NOT use words like ROUTINE when he's talking about an appointment with his ONCOLOGIST, an investigational drug, and an abnormal EKG. "Look the call center folks answer the phone, schedule appointments, that's it. They can't triage. So they are going on clues you give them and if you keep using the word ROUTINE, no one is going to call you back!"

Sure enough, no call back Thursday, no call back Friday. I could call on his behalf but I don't. It's not worth the fight. That would just be me, stealing something else from him. First the laundry, now this. I can't even ask him if anyone called back. It makes me too mad. I getting weary of saving his life.

Friday night the youngest, W, is in a full bratty "I don't like the dinner" meltdown, clearly not reading the signs I put up in the kitchen that say "YOU get what you get and Don't throw a fit." He is throwing it, the fit, that is. The words in my head, which would be like gasoline on this fire, are getting dangerously close to flying out of my mouth, so I put on my shoes and head for the car, drive to a nearby playground parking lot and call a friend. I tell her all the horrible words that I want to say to youngest son.

I remember my mother running away when I was a child. Always drunk, spewing her vitriolic words at us on her way out the door, often a special event like Mother's Day, sometimes in a fur coat. Hmm, maybe I am an ok Mom after all? The bar is set kind of low.

Back home later W tries to make it up to me with a cursory "I'm sorry." I'm not sure where it came from when I said "It hurts my heart when you act like that while your Dad struggles to breathe and make dinner at the same time. He's not going to tell you how hard it is for him or how sick he feels from his diseases and his medication," The tears came streaming down, W's and mine.

Sunday morning Melanoma Man says "Do you know Dr. A.'s fax number?" That's how I officially find out he never heard back after leaving his "routine" message with the call center. His oncologist wants him to drive 4.5 hours to the cancer center Monday if he isn't able to get the rhythm strip done locally at Dr. A's office. I'm annoyed because I was right about the call center. I call in a favor from my Department Chair. Ten minutes later Melanoma Man's phone rings. It's Dr. A. He will see him Monday at 11. No 4.5 hour drive! Here I am again, saving his life.

These are the days when I wish we were out working the fields and one day he just got tired and sat in the rocker. And the neighbors noticed that he wasn't working the field with me anymore. They came and helped me with the harvest. And we weren't all so monitored and measured and aware every moment of what we are losing.