Something new-art journaling

Time

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?

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.

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.