Friday, July 29, 2016


Call Me Ishmael
July10-Ishmael's first day. I haven't read Moby Dick, but have become acquainted with the first line of text in recent weeks. July 5th I began formulating a plan that would allow me to save my last 28 days of Family Medical leave. By this time I had exhausted all of my sick leave and vacation caring for Melanoma Man during 3 brain surgeries, a week of radiation, seizures and radiation damage. MM survived it all but no longer has the skills to be home alone. I thought back to the day Mom died which also happened to be the date of MM's first seizure. It is that life insurance policy of which I am one of the beneficiaries which allowed me to bring Ishmael into our lives. If I stay home to care for MM myself I will exhaust all of my FMLA, lose my job, lose the health insurance on which my family relies. Mom, with whom I had a difficult relationship made it possible for me to pay 66% of my gross earnings toward Ishmael's salary. I can't say I know him well, but what I do know is that he is kind, he looks out for MM, he preserves MM's his dignity.

Butter's Birthday and the Smell of Cancer
August 13-Butter turned fourteen today. We took Butter, iMac and four friends to Suicide Squad, which as it turns out may have been inappropriate to take other people's kids to. It was PG13 but I did no research ahead. Oh well. MM came along too. I'm glad he was up to it. There was another hospitalization August 3-August 5. MM signed up for hospice on August 5. His pareital lobe surgical cavity has refilled with 3 cm of enhancing matter, which means it could be either a tumor or some necrotic/dead brain tissue. The 8 new enhancing companions sprinkled throughout his brain strongly suggest that the parietal lobe mass is melanoma. MM's hands began to shake on July 30, more confusion on the 31st. He decided to wait until Monday August 1 to have me call Dr. Mody. She called me back herself and mapped out the differential diagnosis, recommended he go to the ER to have the necessary tests. 

Today at the movies MM sat next to me and the smell of cancer wafted toward me again and again. I thought maybe it's something else, maybe it's not cancer. But it is, I've smelled it before. It is somewhat nauseating. I sleep with it every night. I pray for crazy things like a massive brain bleed. Yes I would like to order a fatal brain bleed for my husband, quick and fast please. It sounds crazy to a lay person, but probably not crazy to a nurse or a doctor who has had patients die brutal deaths, to wish for a peaceful drifting away rather than a struggle. I don't want my kids to see the struggle or the brutality. They already have, watching their Dad lose the ability to swallow and then get it back, lose the ability to create sensible sentences, get it back and lose it again. They have watched their Mom dress him, trim his fingernails, put his contacts in, take his contacts out, watched him refuse to get glasses. He put his oxygen tubing on backwards, so the oxygen flowed onto the back of his scalp instead of into his nose. I offered help. He slapped my hand and said "you know better than that."  I remarked "your mama must've been a hand slapper," and left the room. Then I thought to myself "who cares about the oxygen," it doesn't matter.  If he gets short of breath he'll sit up and ask for help. Some days he is grateful and sweet, thanking me for each bit of assistance. Other days he is critical and demanding. Everyday I am tired, trying to take the high road, sometimes missing the mark. I am grateful for Ishmael who comes in good cheer to be with MM each workday so I can go to work. 

Monday, July 4, 2016


We have gone to Riverton every year for the Fourth of July since we married, except those years we were overseas.It is where MM's grandmother, Maude was raised. The original house burned down years ago. Maude and Willam built their retirement home in Riverton. MM's childhood summers were spent here. I wasn't certain we would be able to make it this year, nor was I certain he would understand if we couldn't. My packing was a disorganized mish mash with a few critical items: bathing suit, oxygen  concentrator, MM's pill box, beach ball, living will, Do Not Resusicitate order, allergy and asthma medications for the kids, durable power of attorney. 

Last night we arrived late. iMac and Butter found their cousins and were off for a game of manhunt. I brought the linens from home, Nemo and Thomas the Train. MM purchased them for Riverton along with the rickety bunk beds years ago.  I couldn't remember which boy got Nemo and which got Thomas. MM recalled that iMac had always used the Nemo sheets. These are the details that blur in my mind. MM always remembers. He tucked in the corner of a fitted sheet on the top bunk. I realized this is the last time we will make these beds together. I started to cry. Since the tumors, radiation and seizures his remarks are now more than a little bit off. "I'm really going to miss you," he said. It almost made me laugh, but didn't. As if I was going on a long trip.