That calendar could save your life

It's that time of year when I start to think "maybe if I get a new calendar I'll be better able to manage my life." I've tried paper, electronic, Franklin Covey, 7 Habits, you name it. There's no calendar called "This is for you: caregiver, caretaker, carrying too many messy things and people." No "your life is going to be a breeze" calendar. I wasn't so much looking for a breeze, just a break. I've put some heavy things down, like my old job. I have tried not to pick up new heavy things, as demonstrated by the fact that I did not apply for the opening for nurse manager of my division. I'm in the process of starting a little etsy business. Hey I thought I was supposed to be putting things down, instead of picking them up? I was making excuses or explanations to my dear friend Di, as to why I haven't opened my shop yet. She carefully, and logically pointed out that the Etsy shop will be my fourth job, Full time RN, Mom, and Wife being jobs one, two, and three. Ah perspective, thanks for that. I keep feeling like I never finish anything and am rushing myself to prove a point to me, that I can follow through. 

I have had a good couple of days. Melanoma Man, iMac, and Butter are in Riverton. Sometimes I waste these rare times alone being sad, sometimes being mad. This time neither. Breakfast with my Stephen minister yesterday, followed by pedicure. Late afternoon haircut with Lily. Lily is my new favorite hairdresser. I'm pretty faithful, but Koran my previous hairdresser left for Nashville and gave me Lily. I got a good deal. I made several trips to the Salvation Army with old fan, humidifier, outgrown clothes, board games for littler kids. I washed and dried all sheets, comforters, clothes, towels. More significantly I put ithem all away and made the beds. When I felt discouraged at the state of the house in general I wrote down all I had done and the discouragement lifted.

Topping it all off, I selected a new calendar at Staples, just in case this is really the one that will make order out of chaos. ;)

Missteps and blunders abound

School is out! We had a frenzy of the middle school drama show, fifth grade talent show, BoyScout Court of Honor, fifth grade graduation, eighth grade graduation, 24 hour trip to Orlando, and Melanoma Man's follow up with the Weber at Moffitt Cancer Center. During all that MM seemed to be swapping words out, gave me directions to a location we had been to together 2 days before, short term memory seemed to be a little off. I raised the subject of memory loss with MM. After my third attempt he said "I'm losing my mind." He joked, " What did you say your name was again?" Deflecting any talk of aberrations. 

I overstepped my bounds perhaps, emailed Dr. Weber 2 days before MM's appointment. MM handled it better than I expected. With not much more to lose, I didn't care so much if he was mad or furious or hurt. it was just the opportunity to just maybe find out early if these oddities are the result of radiation or of new tumors. The chance for an early MRI, the chance for radiation treatment if tumors were small enough. Seeing how much he is enjoying living, being here with me and the boys. I just wanted to buy some more time. As everyone, except perhaps for me, already knows, MM did not see this as an opportunity to intervene early. So we wait for our regularly scheduled program of MRI and CTscans in mid July. 

All is calm here in comparison to other recent months. Yet I have the sense that there is a murderer napping in the hall closet and I am too tired to stay on watch in case he wakes.

Afraid you are leaving or that I am lost

That is it. The work of my life, to learn to stop being afraid you are leaving. Dorothy and her ruby slippers, trying to go home. She brings me to tears to this day. Standing in a living room, someone else's living room 23 years ago. Dorothy came on the screen once again the tears came streaming down. My housemate, bewildered by the deluge of tears. Getting lost at every milestone: graduations, marriage, the birth of a child, the death of a parent, a move, a job changed. Each time unsettled, needing to remind myself that I am there,  that I am me, that this is as home as it gets, that I wouldn't feel so lost if didn't hold on so tight.

Cream Cheese in the pantry?!!!

It's the little things people, like opened soft spread cream cheese in the pantry in Florida? No no you say, that isn't right. Me too. That's what I say too. Don't get me wrong. I am the person who will absent mindedly throw a sock away in the wastebasket and put a dirty tissue in my sock drawer. The cream cheese in the pantry? It wasn't me. just sayin....

Better

We are having a quiet Memorial Day weekend! The steroids are working for Melanoma Man. No more fever, no more chills. He restarted the Dabrafenib and the Mekinist Friday. There is the alternating speeding up and slowing down which is almost constant. I have watched MM increase his volunteering commitments over the past four weeks, while simultaneously he loses ground on groceries and cooking, depleting himself entirely on the science project, the scout merit badge assistance, the planning of things at church and scouts. There is no ego boost in groceries or cooking, no implication that you were worthwhile on this earth. It feels as if the race is on again, the race with death. As if to say " I am too busy now death. My work is not done here. Move along."  There is the metallic taste and the hoarseness of the voice. He tries to act casual when he asks if these are side effects of the steroids. The answer is No, they are not. There is the 15 pound weight gain, which he tries to ascribe to over indulging, which he is not. It's all in one place, all in the abdomen. Then of course there that tricky combination of my imagination and my medical intuition, always at war with each other. All this I must set aside. Next month's visit to Moffitt won't likely explain any of it, as Melanoma Man will not disclose these symptoms to his physicians. He is scheduled only for labs and physical exam in June. June will mark one year since the first brain tumors appeared. July's visit to Moffitt will include the works, CT scans of chest/abdomen/pelvis, MRI of brain, evaluation by Neurosurgeon and Radiation oncologist. So I carry on. I am grateful for work and the busyness it brings and grateful even for the mindless chore of laundry. Here is a glimpse of what I do for therapy. I make things. I keep creating, trying to  balance the losses: Cards for Spring and Summer

Quick update

Day 1 of drug holiday and steroids: No Fever for the first time since last Friday! Whoo HOO 

Is it only Tuesday?

It is only Tuesday. Last night, another night of shivering and increased respiratory rate for Melanoma Man. The episodes last 15-30 minutes each time. I lie awake counting his breaths sometimes, assessing the wetness of his cough, wondering if it is infection or just excess fluid built up in the lungs. Then falling asleep on the job in my very own bed. Morning light makes everything seem a little more doable. Lunches made, chocolate chip muffins baked for the boys, a load of wash started. I think for a minute of suggesting that MM contact Dr. Weber with an update on his symptoms, but I say nothing except "have a nice day." Later in the morning I get a text from MM. He has been at the elementary school listening to the morning announcements. Butter is the top reader for the whole school, having read the most books and earned over 1000 accelerated reader points. MM says he is off to get his haircut next and various other errands. He is upbeat. Around 2 he sends an email asking me to go to the middle school parent orientation. He has a fever and chills again. This time he agrees to the drug holiday and the steroids. I go from work to school, to pharmacy to grocery to home. MM is asleep on the sofa under blankets. I meant to go to bed by 8 tonight myself, but am still pleased with nine.