winter 2017

                                     

                                           lost planet

i dig winter.  i especially dig being out in it, i don't know if it is the landscape aesthetic i find appealing or the fact that noone else seems to be out in it, and i have the forests and rivers to myself.  i can call to the wild and laugh and slip and spin on the ice.  i feel alive in winter, always have.  but i've really felt alive this winter.  as if the bony hand of the grim reaper tugged at the mummified cloth i'd been swaddled in and like opening a shade on the window to greet the morning, zip i was suddenly unrolled-unzipped and all that was left was me naked and raw with mega scars outside and in.  but i also had this unbridled love for those near and dear to me.  especially for my mom and my husband whose love keeps me warm.

river coon

in fact i was so in love with my husband that i asked him if he would like to renew our vows on our 5th anniversary which is friday january 20.  i said that i'd really like to have his kids, walt and emma there as they've always expressed disappointment at not being at our small wedding.  i asked him this in november.  he clenched his teeth and sucked air through them and indicated doubt.  i was devastated.  it made me feel like he cared for me out of a sense of duty rather than love.  and i had fallen for my caretaker husband, not my husband.  but he didn't explain himself so i mistakenly took it as he was maybe hoping i wouldn't survive and he could be done with all this.

but he says that's not it, yet i'm still unclear as to what it is.  i can't help but think he's had his fill and wants a life unencumbered by disease and fear and the financial struggles that go along with this.  as i stated in my previous post i am just now getting a sense of the toll this has taken on those close to me, and for him especially it was devastating.

and this no evidence of disease or ned is brand fucking new, and maybe he needs sometime to let it soak in or shake it off?  i don't know.  i am really trying to be patient but feeling that good and in love, and then to be halted at the entrance gate to what i thought was the next chapter with all those feelings-SUCKED.  do you know how long it has been since i felt that good and in love?  maybe never.

river coon

just two days prior to my latest scan results of ned, i was with my husband in omaha participating in last rites over his dying aunt marge.  can you imagine?  i honestly thought well soon there will be a gathering around me where people will hopefully be telling jokes and not absolving me of my sins, as i thought i was a goner.

but here i am, rockin' like a hurricane, with a husband who may or may not wish to continue on life's journey with me.  which saddens me of course.  he doesn't owe me anything.  i just wanted the opportunity to participate in life with him sans side-effects or cancer and not have to rely so much on him.  i want the opportunity to care for him.

we all have our stuff.  my husband marty isn't baggage free, and my disease possibly exacerbated some of his ills around his baggage, or the bags got heavier due to neglect, because i was the focus.  whatever it is, it is being looked at.  and he is focusing on himself right now.  we are on a diet/fast which is a lot of no's-no caffeine, alcohol, sugar, dairy, wheat, eggs and news.  mostly a vegan diet for the month of january plus marty just completed a 3 day fast over this past holiday weekend, and i think it was very powerful for him, and i am very proud of him.

'big bottom talk about mud flaps my dog's got 'em'

what does this all mean?  it means my pants are falling off of me; and i will continue with this diet and exercise and meditating and journaling.  it means i'm gonna keep on keepin' on.  i'm going to participate in the women's march this saturday, not in dc but in dsm.  continue to go on long walks with this big dog, who by the way asked me if this picture made his butt look big?  i said yep, cuz da truf will set you free.  and i will do my best to keep beatin' my feet on the path of love.

trouble

i awoke to this song in my head.  my dreams the previous night provided the pathway for the song to kickstart my day.  simultaneously beautiful and sad and scary.  nothing new of course but considering my new circumstance, troubling.

i don't know who i am anymore.  i'm a bit lost and found.  i'm old and new.  i'm very fucking sensitive.  i'm happy and sad.  i'm a walking contradiction with a diploma in hand that says you can graduate if you just finish that one project.  just complete your thesis on immunotherapy and the diploma is yours as is your future.

but i never finished anything.  i have loads of big ideas but minimal follow through and my dream last night was that both my mom and husband had replaced me.  my mom had a new daughter she liked better, that seemed to impress her more and my husband had a new partner.  but all this was because i was supposed to be dead, but they didn't get the memo i was still alive and already traded me in.

i got into a physical fight with my mom, where i was threatening bodily harm.  it was completely upsetting to awaken from.  and my day has been colored by the dream.

eleven years ago i was helping my father care for his dying mother, my grandmother.  i stayed with her and tended to her as well as an amateur hospice granddaughter could.  i dipped the minty sponge lollipop in fresh water and swabbed her dry mouth with it.  i rubbed lotion into her dry skin.  i sat with her.  i talked with her and then to her.  this went on for weeks.  and as happens when the focus is on tending to the health of a loved one, your needs get ignored and suddenly there's no food or drink in the fridge to help sustain you while you are helping to sustain another.

i had no car at the time and it was lunchtime and i was hungry.  and i figured i would be gone 20 minutes tops.  so i hopped on my bike and got two tacos to go.  i was zip back in 20 minutes.  i walked in the house glanced into my grandma's room to check on her before heading to the kitchen.  she was dead.  i walked to the side of her bed cupped her hand and said "grandma".  she didn't respond.  i think her eyes were shut and the only sound was the oxygen pump mindlessly breathing life into a dead person's lungs.

i threw the tacos into the garbage, called my dad who was with clients and for some reason couldn't get away for another hour.  i call the number on the hospice business card, they too said it might be an hour before a crew could get to the house.

i returned to the room where my grandma's body was and sat next to her in the bed for awhile holding her hand.  then i opened all the windows in the house and poured myself a glass of wine and returned to her again and sat with her body singing the white stripes version of the burt bacharach song "i just don't know what to do with myself".  because it was all about me.

but it's not.  it's not all about me.

i'm just beginning to get a measure of the toll the past seven years has taken on everyone close to me. and fuck, it is overwhelming.  and because i'm in it do i have an objective perspective?  uh doubtful.

i came away from NED with this overwhelming love and gratitude towards my husband marty.  for all of his caretaking and the fact he married me knowing that the past two years could and did happen and yet he chose to be there by my side.  he is extremely good at it.  and my heart after the news exploded with love for him.  i can't recall ever feeling that way before, that in love.  it is the best i've ever felt in my lifetime.

i'm having the same gush of love and gratitude this morning for all my people.  the support from far and near.  it is overwhelming what i've/we've been through.  and i think i thought that i would 'POOF' go back to life as usual.  but what the fuck is that?  i know what it looked like before cancer, what my body looked like before edward scissorhands left scars big and small all over my torso, what it felt like to have jobs that i was passionate about, what it felt like to be independent.  what it felt like to not be in fight or flight mode.

so i'm just trying to make sense of it all.  chart a path.  but it is harder than i anticipated.

one day at a time.