Pushing Aside The What-Ifs

We’ve settled into a new routine while Roy regains his strength. It’s not particularly exciting or varied. Days are scheduled around his medications. Home health or other service providers pop up throughout the week. Roy has a Physical Therapist with personal experience with liver disease and an interest in fixing pinched nerves that comes twice per week. The nurse comes once each week. He’s had a phone call with an insurance social worker and several related to obtaining prescriptions including changing which Walgreen’s we will be using since the Villa Maria one seems to be closed more than it is open these days

Roy had some labs done this past week for hepatology. His bilirubin is a bit up (a 4 on the last test) but the other LFTs seem about the same. The MELD calculated at an 18. So his liver isn’t particularly happy, but it isn’t shrieking either. He will see hepatology in Houston next week.

Currently, my struggle is in knowing enough to be scared about this week’s main event (the next immunotherapy infusion in Houston) and not knowing enough to be certain of anything other than this is really the only viable choice that we have right now. Mostly this means using energy to squash down all the what-ifs that arise. What if this therapy causes another HE episode? What if I can’t tell it is happening again soon enough? What if the immunotherapy isn’t working? What if he has to go back to the ER? What if we lost too much time? What if I am not asking the right questions? Back-off, What-Ifs, I can’t answer these questions and it doesn’t do us any good to chew them over. We know the names of actual monsters (HCC and HE chief among them) and we are turning to face those.

Things I’ve learned this week: how to make “ricotta cheese” out of tofu; zip-up compression socks are easier to get onto someone else’s feet than the regular ones; how to cook strawberries and kale to avoid the parasite currently rampaging through the country (the berries are now safely cooked into strawberry oat bars, the kale is cooked as a side dish and is not in the oat bars); how to make “refried” beans without frying; every single dish that I make will inevitably require every measuring spoon and measuring cup and multiple bowls or pans; and cats are not useful in handling chores and prefer to supervise.

I’ve been reminded in my Powerful Tools for Caregivers class that caregivers have to take care of themselves to be effective (oxygen mask rule), negative self talk needs to be reframed to be positive, and action plans for things you want to do help you take care of yourself. I still do not like online meetings but it is helpful to be able to attend this one this way as it is happening in Portland Oregon. Connecting with others is another way to relieve stress, so I happily went to see Mamma Mia (never saw it before) at The Queen with friends Monday. It wasn’t supposed to be a sing-along, but it ended up including both singing and dancing in the theater. I had lunch with another friend today and am making plans with others as time permits. My friend asked if I was okay – and I told her, it really depends on the moment – sometimes I can find pockets of time that I feel okay. Other times, this life-space full of what-ifs and unknowns is overwhelming, so in those moments, I am not, and neither is Roy, of course. The trick, I suppose, is in finding those pockets of stability or normalcy to catch our breath, remember who we are and that this is not all there is, and regroup before slipping back into the murk.

We will go to Houston tomorrow (Thursday) for the normal pre-infusion labs and infusion. If all goes well, and he feels strong enough, Roy will have his next PT at home on Friday. Then on Monday, he will go back to urology here to see about the catheter and attempt another void test, and next Wednesday back to Houston for hepatology. It seems like a lot happening all of a sudden, but we are trying to go one step at a time, scared, but hoping, praying, and breathing with each step.

Roy says “take care of your f-ing liver – this is no fun.”