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. 

Wow

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.

Risk

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.

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.

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!!

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. 

Vacation

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.