Yesterday we were at City of Hope for the week 2 of round 2 infusion. The appointments for these mid-round infusions have been screwed up, some hitch in the communications at the hospital that messed things up last week, and was still gumming up the works yesterday.
I talked with Dr. C's nurse the day before about scheduling screwups, so we switched the meet up to where she would be down in Urgent Care. Also, I wanted to make sure she or Dr. C actually laid eyes on our brother. He's been having such a tough time managing nausea, to some unknown degree impacted by his not getting on top of the meds in the first place, and as a result not eating well at all. We arrived and went through intake, getting his vitals done, which showed substantial weight loss and a drop in potassium levels. Not surprising.
We met with Dr. C's nurse and went over the way to take the meds in detail. She kept addressing all this info to C, and I had to keep stopping her, getting her to slow down, rewinding so that I could write things down, times and amounts and circumstances and a ton of detail that I am positive was lost on C with his chemo-brain. I barely got it myself, and I'm sure I missed some specifics. (Once back at C's house I wrote out a daily schedule that could be referred to, keeping it simple.) She heard that C still was working (in fact needing to get back home that day to dive into work) and she just gave us both a look that said, "You're kidding, right?"
It's a very tough part of the journey into Cancerland, the adjustments, the acceptance of what can continue and what must end, the transformation of one's life, willingly or unwillingly. Most of us need to work for a living, to maintain our homes, to pay our bills, to lay the foundations of the future we see ahead of us, and the doctor's aren't very helpful about that. Cancer isn't either. Appointments are scheduled at the facility's convenience, and like today something we assumed would take a couple hours tops ended up taking literally all day, blowing a hole through both C's and my plans and responsibilities. A heads-up that this could be an all-day affair would be helpful. I wonder if these mixups would happen at a small clinic? It's a change we're considering, or rather some of us are considering.
Obviously we need to make changes so that the reality of all these things - the impact of chemo, the appointments, the travel time to those appointments, the recovery and rebuilding in preparation for the next round, the inability to carry on any kind of life as it was - all this is on the table now. C wants to keep his ship-of-state afloat, but it truly seems to be impossible; it's more than anyone can do. And it's more than is really healthy. So decisions will need to be made, either in advance for what is clearly looming ahead, or in crisis somewhere down the line.
We got a second opinion from a doctor at MD Anderson - one of probably the top 3 or 4 centers dealing with rhabdomyosarcoma in the nation - and he supported the surgery approach, feeling that the tumor is resectable, at least given the scans (and their quality) that we presented to him. We take that as a big vote for that approach. He also recommends their surgeons, saying they are "world class". I don't know if that would be C's choice, to travel to Texas for surgery, but I'd say it's something to consider.
So we spent the day in the treatment room, C got his dose of vincristine, and also a dose of reality about staying on top of the meds. There is more reality to deal with as we see the obvious intensity of this treatment, and wondering how C will face those realities, how he will embrace the things in his life that support his treatment - like good nutrition, organized use of medications, pushing stressors out of his life for now, responsibly dealing with the before/during/after phases of chemo rounds, dealing with the financial realities of being in this situation, accepting the care of family and friends - and eliminating features of his life that previous to this would have been nuisances, but are now truly counter-productive in a life-threatening game.
This tagging photo was sent in from Dennis on the Colorado River. It's the one that fits today's story. (And we have more tags in for those that missed the first round. Contact us at featsdontfailmenow at gmail dot com.)
This is C's path. He's mid-stream, the water is accelerating as the river narrows, the turns in the canyon making the destination invisible, and like it or not the rapids are directly ahead.
It's time to make sure everything valuable is lashed tightly to the vessel, everything extraneous or that doesn't pull its weight left behind, a quick mental checklist of all techniques that have been learned up to now, identify the obstacles and pick a route, say a prayer to whoever might be listening, take a deep breath...
And then goddammit, start paddling.
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