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.