Journal
Four months have passed since the last update. Though I wish I could say things are much better now, they sadly are not. Elsie was in the hospital with a bleed and resurgance of tumor pain for almost the entire month of October. A time spooky kids like us view as a sort of Playoff or Superbowl season, where we'd be eating far too much candy and watching any myriad of horror/ seasonal movies and shows, was spent suffocating in wave after wave of anxiety, despair and a fear that the pain would never get under control. Her family and I decorated her hospital room as we did for christmas last year, and though there were plenty of Hokus Pokus playing on her hospital TV and a constantly filled skull of candy on her table, things just were not the same this time around. The bleed and dull back pain she was experiencing had signaled to her doctor that her current triplet therapy was not working as well as it had for the last 5 months. A trial we were told would be her last hope of shrinking and or eliminating her tumors. Though there are methods we have begun to apply that can and are prolonging her time here the Dr. said we would be lucky to get 6 months out of the new treatment, before they would be driven to make her "as comfortable as possible." A saying we knew all too well being big fans of Scrubs, not to mention having a nurse for a mother. But I like what her therapist and pain doctors have said. "Do not live by another persons number" in other words nothing is ever set in stone, and the fight is far from over. We have heard stories and continue to, from people who were given 2 weeks to live and are still kicking around 17 years later. The word terminal has not been uttered yet and for whatever reason that is, we are holding on to the hope that we are far from hearing it. Especially sense Elsie has been more energetic, less relient on her pain meds and more determined to go out and do things this last week, a very good sign the treatment is doing it's job. I can't say we were suprised at the news though, just a little shocked at how quickly her first trial began to lose affectivness. Even though we were told there was a slim chance of remission with her first trial, we held on to hope as much as anyone could in this situation. As much as it hurt to hear, we are thankful the Dr. didn't beat around the bush and finally broke it to us. I am sure it was hard news for anyone to deliver. It has been a month now that we've known our time together may be a bit shorter than expected; at least in this life anyway. How short that time will be is still, as always, up to the Gods and Elsie; not the Oncologist. We are keeping the candles burning, and even though they seem to be burning at both ends a bit, Elsie and her team of road warriors are keeping the faith and soldiering on with new found determination, while embracing each moment as though it could be our last with her. Her fight rages on and just like her triplet therapies, she is actively seeing physical, mental and energy/spiritual healers. A trinity of hope in our eyes, as the pile of insane success stories continues to build. Her hair is begining to fall out given the strength of her chemo, but it's nothing she can't fix with a wig and a nice scarf or beenie. She is still beautiful inside and out though, with or without hair (she thinks I'm crazy for thinking that, but it's true). Unfortunatly we have come to the end of her disability, PTO, and current Gofundme money. Her medical bills will begin again first of the month and her premium just went up 300 bucks more a month to stay on Cigna, which means we may have to switch her to Medical, a much less attentive insurance. Couple that with her trips to City of Hope, Wigs, food, car payment etc... and we could be looking at a rough 2020. It's no wonder families go bankrupt whenever this happens to a family member. My pay checks don't even scratch the surface not to mention I can barely work given my current caregiver duties. We have started to push the gofundme again as it helped us in the beginning. I will post it here again. Please donate if you can. Or if you know other means of getting money please message me. Ending on a good note, we were able to take a trip to the Grand Canyon this summer, Elsie had never been so we spent the weekend seeing the canyon and cruzing route 66. She loved every minute, and like Ron Swanson from Parks and Rec, appropriatly cried at the site of it's majesty. We also got to stay at a ranch for 25 bucks a day, so not a very expensive trip at all; thanks AirBnB. Regardless of the pressure, sadness, and pain, she is trying to live the best life she can right now. Oddly, knowing there may not be much time left, makes you really appreciate the people who love you and the little pleasures that make this absurd existence worth it all. Her animals, her family, her husband...funny Netflix shows, a comfortable bed, candy, Sloths, her friends, each and every sunrise, a day at the beach, spending time with our family's kids, A cold Acai Mio drink, Halloween decorations and a finely crafted Dia De Muertos Altar, Billy Holiday and songs by the Cure, and there are a ton more. Thank you soo much for the continued support. We love you all. And please, give us a little space right now as we continue to process everything. As much as we love you all, a flood of texts, calls and visits can be draining and cause anxiety. Please call me (Michael) if you have any questions, want to see or speak to her and I will relay the message. Thank you again for understanding and all your the support. https://www.gofundme.com/f/GirlfriendInAStoma
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