Unwritten

Well it’s the end of staycation today. Usually I spend April vacation hanging out on my own. Now that Tim is retired he is around all of the time. We thought we would save some money by not going away this past week.  Instead we:

• Had a tree chopped down
• Bought a King size bed
• Resized my rings that do not fit after losing 42 pounds and being unable to regain any weight
• Bought a new printer
• Bought lots of flowers for the yard
• Planned out and finally booked all the details of our GRAND RETIREMENT tour to Scotland and Ireland this summer

Notice all the buying? Yeah, I think we would have saved money if we went away, just saying.

What I find interesting about that little list is it suggests some renewed hope on my part that I’m going to stick around. Not so much. I told Tim Blanket that if I was going to die at home I would at least like it to be in a mammoth bed wearing my diamond rings. Go big or go home peeps!

I find planning a vacation, which used to be such a happy event, not so much. It fills me with anxiety. What if I get sick before then? What if I get sick while on vacation? What if I can’t walk? Will I have energy? Are there first world medical centers there? All the medications I have to pack……

To illustrate my point: the coconuts decided on a trip together to the Dominican Republic this week, a sister trip (yes, they ditched me). They are young and healthy and head coconut even speaks Spanish. Yes, they called daily, things were great, until 7:30 AM Saturday morning. Little coconut had food poisoning. Now I don’t want to malign a whole country but I personally have never met anyone that has gone there and not gotten food poisoning. Kelsey had it there twice before in college so her way of dealing with it was to eat Pringles and yogurt and drink wine. Little coconut apparently ate with abandon. It was so not a good wake up call, listening to her dying. Fortunately, Kelsey is a resourceful nurse and managed to get Bridget into a wheel chair, bypass the line at the infirmary (read that back), and get the desk guy to call a pharmacy and ordered up saline, an antiemetic, and an IV kit for 100 bucks. Presto, she put the IV in, knocked Bridget out and went to the beach and had a beer. I told you she was resourceful. Anyway they are on their way home now……

I guess the other reason I don’t have a lot of reserves of hope is because I read a fellow patient comment somewhere about “living a condensed life.” The phrase stuck with me. I am two plus years into my terminal diagnosis. While the median life expectancy is 3 years–only 10% of patients make it to 5 years. These past two weeks I saw 4 women that I knew on-line, die of metastatic breast cancer, all shy of that magic 5 year mark. It saddens, enrages and shocks me but at the same time I got a lot of stuff to accomplish in less than 3 years of living my condensed life. That is a lot to fit in a short time frame. I guess I would prefer to think of my life as unwritten, not condensed.

Does it scare me? How I look on the outside has nothing to do with what is going on inside. Under the hood, I am hanging on every single second of every minute to the knowledge that death is coming. The deep bottomless sadness and fear never leaves, how could it? I am always walking on the razor’s edge, about to fall into the abyss of my next medical crisis that is sure to occur. I hide it. Who would want to spend much time locked up in my head space with me without giving up and going away? The force of it would sear you.

This past week has brought me a daily reminder of where I was at this time last year–in a coma dying. My memories feed on Facebook shouts out a new posting from my family that I never saw last year when I was in the hospital. It is a definite shock to me. I prefer to look at two years ago when we spent the same week in Iceland. Ice, Ice Baby.

I am recovered about as much as I am going to be. The unsteady walk, shaky hands, and terrible neuropathy remind me constantly of where this is all going. On a happier note: I celebrated when I was finally able to pump my own gas a while back. It represented independence and I love the smell of gasoline. It reminds me of being a teenager, out in the water on a dead calm August morning, pulling lobster traps with my Dad in a little aluminum boat. The smell always brings me back to those moments and how happy I was and innocent about the future and the life I would have.

My newest victory occurred this week. Blanket drives a convertible mini-Cooper. I never drive it because I cannot open the door handles. They have a weird button on the inside of the handle that I could not get to budge. Suddenly this week I did it on the passenger door. Now I can drive the mini, but I haven’t yet mastered the driver’s door. So if you see me climbing into a silver mini through the passenger side you will know why. Baby steps! And yes, I can knit because it is more of a hand movement than just fingers.

 

 

 

 

My latest problem is on-going light headedness every time I stand up—-I kind of perpetually swoon around the house, very dramatic. This week we get to go back to Cancer House to see my endocrinologist oncologist to see how he’s gonna fix that problem.

I’ll be okay. It’s sunny out, the coconuts are on their way back to me, Tim is puttering in the garden, the cats are lounging on top of the hot tub. Tender mercies are everywhere. Work tomorrow. Let’s all do something meaningful.

Love,

Barbara and crew