Updated: Jun 20
Cancer journey co-pilot's log star date 6.16.23.
This is what Kara told me to say in today's blog post. And fuck is right.
She has been fighting so hard for so many weeks. Healing her parastomal hernia. Managing her enlarged stoma. Massaging the edema in her face and neck. Swapping out pads constantly to keep up with the increased discharge through her wounds and pelvic orifices. While struggling to breathe, suffering through violent coughing fits, trouble peeing, constipation, night sweats, fevers, insomnia, difficulty eating, abscesses, bloating and gas...the only issue she let me handle myself was the surgical and abscess wounds in her buttocks. Add to that the personal malice of one billing specialist, the vileness of an ostomy supply phone rep and insurance director, an ostomy nurse's refusal to help her find a bag that would prevent her from shitting all over herself at the infusion clinic, and a trial team and oncology department so overwhelmed in an embattled system that they simply couldn't gather enough subjective information from her personally to balance out the data in her labs...at a time when she desperately needed them to listen to her. Not to mention having to put our third and last pug down, cohosting our Airbnb, going to her medical appointments, and trying to do remote office work. Finally, it got to be too much for even Kara to take.
Last Tuesday, I helped her out of the bathroom only for her to spiral down into such excruciating pain that she had me call 9-1-1. Lactic acidosis burning through her legs so badly that she screamed at the EMTs to stop talking to her. This is not her even during the most horrifically painful surgeries. When I got to the ER, I found out she was septic...and, just as alarmingly, working with barely any blood in her body. Her hemoglobin level had somehow dropped from over 8 to 4. (An expert assures me you really don't breathe when you are that depleted.) Already immunosuppressed from two rounds of steroid protocols after two recent ER trips, Kara was fighting a deadly infection with almost no blood in her body. And she still is, three days later, in the hospital. This morning, after about five liters' worth of transfusions, her hemoglobin was back up to 8. I pray it is still there when I go to see her tomorrow morning. I pray she can weather the misery of battling a life-threatening infection through turbo-powered antibiotics and coming from such a deficit. I pray that someone can figure out why her hemoglobin dropped from almost 9 to 4 in a six-day period...she wasn't bleeding externally. And most of all, regardless of the cause of this latest setback, I pray her hemoglobin will maintain its usual 9-ish again and that she will return home, recover, and resume cancer treatment with some reevaluations. While getting the medical help she needs for as long as she needs it.
Basically, her side effects, which included some similar to or lingering from the previous trial, continued to intensify without timely enough medical attention, or at least it appears to me in hindsight. This led to two ER visits in a period of four weeks, which led to a lot of steroids, which led partially though not completely to where she is now. This is the assessment of one of Kara's most hardcore medical expert friend/advocates. I am not blaming any individuals, as the oncology/surgical/trial teams are heroically invested in Kara's success...I am blaming systemic problems and yes, a handful of horrible or, at the very least, unhelpful professionals in various industries. According to my wife, her most recent oncology consultation was with a nurse practitioner who basically told her she would kill herself if she was dealing with what Kara was dealing with (which Kara wrote about in a previous blog post, "Foregone Conclusion.") This, when it took all the energy Kara had just to show up at the cancer center. The labs showed nothing urgent, but the conversation was excessively, needlessly stressful. And now, one day after her 53rd birthday, Kara is fighting so hard she can't even access her kung fu poet thumbs to transform her love, pain, and joy into a blog post.
All she wanted me to say for her was, "Fuck."
Pray for her.
She is doing all she can to come back and share her adventures with you again and again and again.
Until next time.
--Her husband, Charles