Mary, Did You Know?

Wow, I just read my blog from last year at this time when I was feeling morose and hope seemed beyond my grasp. So much has changed in the last 12 months–my near death and recovery and now, seeming good health. How long will it last? Fortunately I am not so consumed with that because it’s futile to wonder. Besides I am busy with Blanket’s new car–a convertible Mini-Cooper and little coconut’s obsession with reindeer. Reindeer? Beats me, but it is all she will decorate with.

Not a huge fan of Christmas but this year, being home, I have a way more relaxed state of mind, maybe because I can’t really go to a Mall or shopping alone so I’ve managed to skip the manufactured merriment and commercialism this year. I am rested and able to shop away on-line, in peace. The little I have gone out has been strictly social and fun–the School on Wheels Fund raiser for kids without homes to go to, a raucous gathering at the Villa to celebrate my scan news, the Festival of Trees, the town Holiday Fair and dinner afterward. It’s been fun and at a far slower pace than I have ever experienced. Out and about, many people approach me to tell me they are reading my blog–I love that, given my mission to educate and demonstrate by example–it ain’t over yet!!

It’s kind of weird when someone new is introduced to me and they learn I have terminal cancer. It feels disingenuous to not tell them since my head is wrapped so differently. I tend to see the humor in small things and not worry too much about the kind of stuff that pisses other people off.  The hardest is when the response is a loud “you can beat this!” I never know if I should politely nod and smile or tell them the truth of the matter–I am not going to beat anything, there is no cure and I am living while I am dying. It feels rude on one hand, but very inauthentic on the other, to let someone bluster on, no matter how well meaning. It also feels like a responsibility, maybe of my own making, to educate them by letting them in and gently explaining the reality. Most people with terminal cancer don’t look all that sick all the time nor do they overshare like I do. It’s a tricky balance but I want peeps to know we are out there amongst you and not going away quietly. And I’m okay, really!

I am working out the details of my return to work in January. The minute after I chatted with my boss, my old friend, Mr. Anxiety arrived. Haven’t felt that in a while but I was immediately anguished if this was the right decision, would I be able to do it with my motor, memory and word finding problems, would the stress undermine my immune system’s work at killing the cancer? Thank god for sticky notes!

I continue to work on my balance issues which seem to have kind of plateaued.  Last week I took a Pilates class–always, somewhere in the middle of class I think how much I hate it and can’t wait for it to be over, and by the end, I feel relaxed and happy.

So when I return to work, if you see me trying to walk across the parking lot or down a long hall, please don’t hesitate to grab my arm and assist me. I will appreciate it more than you know. I have to consciously will myself to move, walk, get up–things that are automatic for everyone else.

A really great article appeared in the NY Times last Sunday on the dangers and risks of immunotherapy. I included the link below  if you would like to read it, it tells almost exactly what happened to me last March when I showed up in the ER and they wrongly assumed my cath port was infected and put me on antibiotics—they just haven’t seen enough people who respond adversely. Doctors are not gods. Their knowledge is finite and limited to what they have experienced or read.

I picked a favorite Christmas song this week but trust me, I am in no way religious. I just like the song. Since Tim plays Christmas music for the whole month I have to suffer through a lot of really bad ones. Feliz Navidad? Really?

Tomorrow I jet off again. Kelsey is taking me to Charleston, South Carolina to visit Evan’s family. More Christmas fun and memory making with the head coconut.

Stay out of the Mall, celebrate the small things and most of all, spend time with family and friends. The best things are not store bought.

Love and Health,

Barbara