It's beginning to feel like we've got out our own room at the hospital these days…
Soooo... yeah. That happened. Kim went into v-fib at 10:30 last night... cue sirens and fear and confusion, and me seeing my wife's lips turn blue and her eyes grow wide as she understood exactly what was happening to her and then off to the local ER, and then transferred up to Siteman for monitoring because apparently heart trouble associated with metastatic sarcoma is a little bit above their pay-grade, and then beta-blockers and valium and... yeah. What, me, panic? Naaah...
The rundown is actually surprisingly simple: Kim has (as I mentioned in the previous diary) metastases in her brain, heart and kidney (well, more than that, but those are the most critical ones). They're not huge (the largest is <7mm, and they don't seem to have invaded the tissue deeply, so they are almost literally on her organs rather than in, which is not as bad as it could be by a long shot.
So now we have an interesting situation; the immunotherapy is working; even now, after just three weeks, her markers are declining and there are clear signs of an amplified immune response to the sarcoma. Her little white blood cells are kicking the ever-living snot out of her tumors. The problem is that those tumors are awake, and they are pissed.
The other factor is her own immune response; part of it is inflammation. It's why you get a little lump around a cut, and why your chest hurts when you get an infection. In Kim's case, it's her heart, kidney and brain that is swelling. This is definitely not good.
The swelling in her brain leads to what she calls "oopsies". She forgets people's names; she has mini-fugues; her fight-or-flight instinct is in overdrive most of the time. Not really a fun time.
Her kidney is currently operating at about 10% capacity, which is worrisome. The advice is "use it or lose it", so her oncologist (Dr. Andre, or "Dr. Dre" to his patients!) told her to pee like the wind!! It's being monitored now, and unless it packs up completely, they'll leave it for later.
Inspiring stuff, eh?
So... the ventricular fibrillation episode... yeah, that's a function of swelling in the myocardium and blood pressure. So, cue some new pills.
As of last night, Kim's epic medicine cabinet swelled to the tune of a medication for her kidneys, a beta-blocker blocker for her heart and valium for stress to alleviate the heart and brain symptoms.
So now it comes to the punch. As I mentioned before, copays and weather and scans have kicked our arses. We feel like we're back at square one again, but the reality is that we have made progress. Kim is getting treatment. It is working. She has a better handle on her disease, and we both have a better handle on how we can deal with it.
We hate to do this; we hate to ask, but we think things have stabilised now. So we come to you again, hopefully for one last time, so ask for help.
Our budget is $2500 short for getting our modular home moved to our site, as well as the new meds until her Medicaid starts up in March (shutdown notwithstanding), and the spring brings the opportunity for me to find some sort of work.
We have set up our new GoFundMe and have received $300 so far, which, together with PayPal donations have reduced our need to $2100. We are desperate and embarrassed and exhausted, and we hate having to come back again, but we have hope that our situation will stabilise now and we have a handle on things here.
We also have a PayPal account at churlygurl (at) gmail dot com.
For those interested in her treatment, the information on the linical trial is here: clinicaltrials.gov/...
If you cannot donate please Tweet, FaceBook, shout from the rooftops... anything you can do is appreciated more deeply than we could ever express.
Thanks for sticking with us. I'll keep updating you for as long as you'll have me. Kim is sleeping right now (beta blockers and valium... who knew?) but she asked me to pass on her love and humble gratitude for everything you have done for us. We have no right to ask for or expect anything, and your kindness and generosity of spirit are a lesson to us all.
Thank you, from the bottom of our hearts.
Callum and Kim