I was wrong! and Ramblings about my week

The visit from Melanoma Man's friend R turned out to be actually good. Yes indeed, my initial assessment was incorrect and colored by my own insecurities. After the first 24 hours R had finished with his story. The story of a divorce he didn't particularly want from the woman with whom he shares two children, six grandchildren and almost 4 decades of memories. By day two he began to notice the fight Melanoma Man is fighting and he began to help, doing dishes, ironing imac's shirt for his band performance. He and Melanoma Man chattered with each other like a couple of elementary school girls. I could see that it was healing both of them, lightening their hearts.

My initial objection was that MM invited his friend to stay with us without discussing it with me. After 15 years of marriage this really shouldn't surprise me.Then all of the usual insecurities rained down on me. There's too much evidence of who I am in this house, too much evidence of shortcomings, things started and not finished. It doesn't look like the house of a person who has it all together and of course I don't. Then there is the mending of people. I am a people mender and sometimes take too many under my wing. R didn't seem to be any more or less broken than the rest of us.  If he was casting judgement on my homemaking skills it certainly wasn't apparent.

This week my supervisor, D said she wished I would apply for the nurse manager position. I said NO. A big part of the beauty of this job is that it is not stressful. Of course the nurse manager position would be more $. At 4 o'clock Friday afternoon the clinic refrigerator died. It is kind of a big deal because it meant quickly finding a suitable amount of real estate in another refrigerator to preserve a whole lot of temperature controlled medications. D and I rearranged and found a way. D had to stay late to make sure the new refrigerator could maintain the appropriate temperature. I was able to leave on time which was important on this day because iMac was performing as part of his middle school wind ensemble in the state music assessment. I got there in plenty of time and I guessed correctly sitting in the center third row with a perfect view of iMac. We stayed until 8:30, long enough to find out that their wind ensemble earned a Superior.

 A hectic Friday morning as Melanoma Man departed to Tampa and R departed to the airport.  I took Butter over to faithful friend MK, along with all his school stuff, and camping gear for the BoyScout campout. MK picked up both boys from school. She delivered her son and iMac back to school at 5 so they could board the bus with their fellow band members, en route to the state assessment. Her husband delivered Butter to church with camping gear to depart for the camp out. I finished work  at 5 and drove straight to the band assessment. Melanoma Man returned from his appointment with The Weber/Moffitt a little after 10 p.m. with a good report.

Saturday morning Melanoma Man drove a batch of Boyscouts, including iMac to meet up with their fellow campers. MM was home by mid day. We had a rare afternoon, evening, night and morning to ourselves. The last time we had this luxury was the first week of July when I took Melanoma Man to Tampa for stereotactic brain radiation surgery. This weekend alone was different, we weren't encumbered by the urgency of staying alive. We went to Bonefish Grill for dinner. We talked and talked and talked and just enjoyed hanging out with each other. Melanoma Man felt exceptionally well. And it was good, just pure goodness for both of us.

I was right

Just saying, for the record. Once again folks I, Laundry Thief, am correct about the self centered ego maniacal visiting friend. I've got lots of experience with egomaniacs you see.

The Friend

A week or so ago Melanoma Man announced that his college friend R would be coming to visit, staying with us. Note that I was not consulted on the convenience of this visit or whether I thought it best that R stay at the Marriott. Of course he should stay at the Marriott!!! Undoubtedly this is why MM did not consult me. We live in a smallish 1600 square foot house with 3 bedrooms, a cat, and too many Legos to count. Butter will have to sleep in imac's room. There will be bickering.

 I met R and wife S at MM's college reunion when imac was just over 12 months old and butter wasn't even born yet. R and S are divorcing after 42 years of marriage. I liked S. I had a good feeling about her. She was real. Melanoma Man says R wants to come visit him. Other friends came to visit right away, as soon as they knew of MM's diagnosis. Those were the friends who were truly coming to be friends to MM. Those were the ones who understood the gravity of the situation. R's visit is suspect at best. Seems to me that it is an escape from the reality of divorce and loss. I don't have time to be someone else's escape hotel. I have promised to be civilized, but it will be difficult. Thankfully I will leave the house early each morning and will only have 2 hours or so to spend with R in the evening. Then he will be gone on Friday morning. He showed little concern for Melanoma Man when things were really dicey. I could be wrong. It has happened from time to time. To be continued.

March

It's March and my brain is fogged up with tree pollen. Friday night we attended imac's karate belt test. He is a green belt now. I only see him do karate at belt testing time because his twice weekly class at the Y occurs immediately after school lets out, not a time when I am around. So the progress is always remarkable to me, reflecting a year of twice weekly practice. It is nice to see how proud he is. Chatting with other parents just before the seven students begin the test, we remember that imac  and another student have been doing karate together since first grade. One parent mentions that they will have their learners permits in a year. Melanoma Man looks at me, "a year, is that true?" Yes it is, just a little over a year. imac turns 14 in June. He can get his learner's permit on his 15th birthday.

This afternoon Melanoma Man and I grocery shopped while imac and butter hung out with friends. He is feeling good today. He said "I'm following you," instead of his usual grocery stance of "You follow me. You are a haphazard grocery shopper." My mind just works differently. Today that is ok with him.

It is a peaceful time right now on the outside of this family's life. On the inside I am nothing short of devastated, by the storm that has blown through our lives since melanoma's return to our everyday in August 2012. The sun is shining. The sky is clear and blue. The breeze is light. The wreckage of the storm lays on the ground all around us and I'm not sure which piece to pick up first. I know another storm will come. The idea of just walking out the door and never looking back is more appealing than picking up anything, than preparing for another storm.

We never heard back from Maria, the oncology Nurse Practitioner, about the final reading of the last incomplete brain MRI report. Melanoma Man will travel to Tampa this week to see The Weber, again in 3 weeks to see Dr. Rau and Dr. Etame and have yet another MRI of his brain.

We talked about spring break. I don't have any time off. Other nurses had already mapped out their leave for the whole school year to match up with the school calendar, but I am too new to have any leverage. So I can't go anywhere. Melanoma Man mentioned taking the boys to Orlando. I asked him to please NOT tell them until we are sure he is up to it, like a day or two before hand. He agreed and then did what he always does. I came home from work a week ago and the boys were ecstatic to tell me they are going to Orlando with their Dad on spring break.

This week I'll try to recruit reinforcements, call Uncle Wayne, see if he is up to Universal and Aquatica. Fingers crossed.

Anxiety-how much?

How much anxiety is just right? I have wondered this over and over again in the past few months as I try to titrate just the right mindset. On my bedside table I have books and more books. Here's what the current stack is comprised of: The Hero's Journey by Joseph Campbell, The Reenchantment of Everyday Life by Thomas Moore, Magical Journey by Katrina Kenison, God's Hotel by Victoria Sweet, Love Wins by Rob Bell. A set of rosary beads and a set of prayer beads, an episcopal equivalent tucked into a little box labeled special things. 

Two Sundays ago at the grocery store MM was moody and decided to sit on a bench and wait for Butter and me to finish shopping. The next morning he awoke with a headache at 3 am and took ibuprofen for the first time in 6 weeks. He had never had a headache in his life until the first set of brain tumors. The headaches retreated dramatically after both rounds of radiation. His breathing is significantly improved. He's started making brain tumor jokes again. I can't tell if the jokes are generalized nervousness or a cover up. The coffee pot has been left on twice and two pots have been burned on the stovetop. Last night he called me regarding evening logistics of kids, homework, a meeting at the high school and a meeting for Scouts. He was surprised by my plan to drive directly to the high school to meet iMac there. Melanoma Man had devised the plan the night before. I try not to read too much into these incidents. 

February 7th there was an appointment with Maria/Oncology nurse Practitioner,  MRI of brain, CT scans of chest, abdomen and pelvis.  The suspense is painful, tedious. I would just like to take a nap for 3 days leading up to these marathon medical appointments.  That's reasonable right? A 3 day nap. Instead I arranged lunch with Nancie, member of my personal advisory committee. 

On the day of the medical marathon around 3:30 pm, Melanoma Man sent me a text, stating that with it being a Friday lots of people leave early and thus we would have NO CT or MRI report until Monday.

Five minutes later another text, "the scans are good." I couldn't fathom how both of these could be true. I picked up the phone a minute later, finding texting an inefficient mechanism for discussing something so important. On the phone MM said, "The MRI is clean!" "What about the CT scans?" I asked. "Won't know until Monday." I was reminded of Patient #1's post about waiting days for scan results. 

At home MM proudly presented me with the official MRI report, like a kid with straight As. Two things caught my eye. The phrase "no priors for comparison" and the presence of brackets. Sloppy Friday afternoon work. There were at least 4 priors for comparison. The brackets were vestiges of a multiple choice drop down menu that had not been completed. Inside the brackets the word "blood."  But was that the word the radiologist really meant to select. If the selection were complete the brackets themselves would disappear from the document. I told myself I was being nit picky, anxious, a worrier. Put it down Sarah, stop, let it be.

The following Monday night, home from work, MM's phone rings. It is Maria returning his call from earlier in the day. I hear him say "Maria- two questions: why does it say there are no priors for comparison? And what do the brackets mean?" It makes me smile. There's my boy. There is his analytical mind and my worrying, which I haven't shared with him, is not so foolish after all. Maria promises to take the films to the radiologist who read the first four for comparison to the priors. She sees it too. It's been more than a week and Melanoma Man hasn't reported back to me any further details. Somehow I'm not rushing to ask either. We get what we get and what we've got is good. Eight months since the first set of brain tumors, when we know the average survival time after melanoma hits the brain is 5-7 months. The science of melanoma treatment is changing right in front of us and we are the beneficiaries.

We go to another Blue and Gold dinner with Cubscouts. It is our last. Now we are in BoyScout world since Butter received his Arrow of Light, went on his first Boyscout camp out with his big brother this past weekend. Friday night of the camp out Butter shares his tent with 3 friends. They practiced putting up the tent in our yard a few days before. Still with the practice they require help from iMac, who is more than thrilled to be older, wiser, more skilled. Melanoma Man attended Friday night camp out happenings and drove the hour home to sleep in our bed with me. He has a sore throat Friday night. In our bed, in the dark I ask him if he has the antibiotics the pulmonologist recommended on hand. "Why are you always trying to treat things that haven't happened?" he wants to know. Dr. C/ pulmonologist has advised him to start the antibiotics at the first sign of upper respiratory infection, so it is NOT my plan. It is the pulmonologists plan. " Boy Scout motto," I return, "Be prepared." I wonder to myself "Why you got to always live life right up to the edge?!! Why you got to wait until it's an emergency?!!" I am tired. I sleep. Saturday I walk on the beach at 7, calmest ocean I've seen in a long time, dark blue edge of sky, birds floating on the surface enjoying the rare calm. Me too. Later I treat myself to more sleep, a two hour nap, uninterrupted by boys or cat. 

What the sidewalk said on Saturday

Made my day

This music video by pharrell Wiiliams http://youtu.be/y6Sxv-sUYtM