First trip to a restaurant post hospital!
I don't know how it has already been almost two weeks since he was able to come home. Apologies again for such a long delay updating here. I've been super busy, but more on that later.
The good news is he's recovered from the mucositis and the rash! He's still relatively weak, but he's getting stronger and stronger every day. (If you want to skip down to the latest news specific to the cancer, I've put that section in bold. I know my "storyteller voice" is too wordy for some folks. I take no offense, I promise. 😘)
We are trying to take walks every day, not always successful on that, but we are trying. The heat limits when we can do them, and life can be so chaotic. But he's also getting out more and more, and walking is always a part of anywhere we go... He's required to use a walker for now, but the VA sent him a fancy "cadillac" walker with a seat, which is very cool. Of course, I'll need to figure out what to do with the cheaper version I'd bought online before our road trip back in April (hardly used). LOL
Here's a look at him on our first walk down the block the day he got home, at the point where we took a break before heading back. He can go much further now.
Looking back toward home...
It was such a pretty day.
He's had at-home visits from a nurse to check his vitals and evaluate things at the house, a Physical Therapist to do an initial evaluation of his needs, and his first official Physical Therapy session! We're expecting a call to schedule the next session any minute.
He's eating well and has most of his taste back, although he says things don't all taste the same as he remembers them tasting. Currently, he's trying to just learn what the new tastes are and work from there. Honestly, he'll eat some things now he wouldn't have touched before - go figure!
He had one dizzy spell shortly after he came home, and it turned out his blood pressure was extremely low, so he's not taking the one remaining BP medication they still prescribe. Instead, we check his blood pressure regularly, so if it spikes, he can go ahead and take it. We confirmed with a nurse in his Primary Care doctor's office, and with the at-home nurse, that that is the proper way to handle the matter.
He does still deal with a sore throat at times, along with the ongoing struggle with dry mouth. He's been weaned off of a medication he used to take 3 times a day for a tremor issue (not Parkinson's but something every older person can end up dealing with, and it runs in his family - Katherine Hepburn had a strong case of this same issue). Luckily, we haven't seen any increase in his tremors, because a major side effect from the medication is dry mouth. Dry mouth is something he'll have to deal with the rest of his life, due to the radiation treatment, and it exacerbates things like mucositis. They have also given him a spray to induce saliva which helps a lot - much better than any of the Biotene-type sprays/gels/pastes/rinses/lozenges we had tried before.
And one of his shoulders bothers him now and then, and his hips, too. Achy pains. But most of the time he is pain free!
And, just in case anyone was wondering, no ill effects from falling and knocking his noggin - it pays to have a hard head sometimes, right?!!!
The biggest news, although still mostly preliminary, is yesterday he had two on-site appointments at the facility close to our house.
The first was a Swallow Study, basically video x-rays of him eating and drinking, including Barium so they can see his swallow function in action. There is a little concern that a tiny bit of liquid sometimes flows into his airway instead of the other passage in his throat down to his stomach. It's very hard to see for the untrained eye, and it's not a crisis or anything (just could become one). Mostly means they want him to be careful about some foods for now (particularly foods with a thin liquid and solids, such as cereal with milk, chicken noodle soup, that sort of thing), and they will continue to monitor. And he REALLY needs to do his swallow exercises every day to help loosen up the sphincter muscle that regulates which "pipe" things go down and strengthen related muscles (yes, we humans actually have two sphincter muscles - who knew?!?) He was originally taught these exercises back during radiation treatment in January and February, and he was pretty diligent about doing them back then, but he's been resistant about continuing to do them since, not really feeling it was such a big a deal more recently ("I exercise swallowing all day long when I eat and drink!"). He now understands the importance, and I'll keep reminding him more now. He'll love that!
I was sneaky and took a little video of one of the swallow x-ray videos - freaky stuff:
The second appointment was with the Oncologist. We had hoped there would be more information ready for going forward, but it turned out to be more about how well he's recovered and his current condition. They were pleased with his recovery from the severe side effects of the chemo treatment back in May. They also reviewed the results of the gene test they'd done to help identify why he had such a toxic reaction and to help determine what treatment options will be more tolerable for him.
It turns out he has an "intermediate metabolism" for the chemo treatment, which obviously wasn't a great fit with the dosage he'd been given.
Before deciding on the treatment going forward, he's going to have a CT scan of his lungs tomorrow (Saturday, July 8th) to see how those 3 little spots are doing, see if the chemo had a positive impact on the cancer. Then we'll meet again after the doctor has reviewed those results to make decisions. The doctor didn't feel a PT scan was necessary at this time.
The options being considered include the possibility of continuing only with the immuno therapy or the immuno therapy and a much-reduced dosage of the chemo. As it was explained to us, immuno therapy overrides the cancer telling the body not to attack cancer cells, allowing the body's natural immune system to get back to work.
They advised that the toxic side effects were not in any way caused by the immuno therapy.
As for resuming chemo, if the CT scan shows a "great response," the Oncologist said he would advocate for trying a lower dosage for three more rounds (once every 3 weeks). The dosage they gave him back in May was at 80%. If he decides to try it again, they would knock that down to 30-40%.
Unfortunately, there are no guarantees that it won't cause severe side effects, although the chances are reduced.
So, that's where it stands on all that for the moment.
In the meantime, Biff is doing a voice acting job on Monday for a Disney+ animated show. He's pretty excited to be able to work again. And he likes the idea of more Voice Over work: no memorizing, and he can do it siting down! And no 16-hour days on a set either. Although I know he actually misses those.
Also, his movie with Jake Johnson called Self-Reliance is officially going to drop in September on Hulu, and there may even be a limited theatrical run. Jake very much wants Biff to do some press with him, so we are hopeful Biff can be well enough to at least do some local stuff. Jake says everyone who sees it tells him Biff steals every scene he's in. We saw a preliminary cut a couple of months ago, but Jake has done a lot of work on it since. I'm very excited to see the final version.
All in all, it's been great to have him home again.
And it is great that progress has been made on the "House Project!" It was such a bummer to have all my plans postponed when I caught COVID, and it would have been great to get more done while Biff was still in the hospital, but it didn't work out that way, so there you go. Instead, during the day when a crew was cleaning the house, Biff got to spend several hours with a dear friend at her house, and I got to spend some time with our neighbor who helped me out so much while I was sick - as well as before and after, walking the dogs and being awesome. So, silver linings, you know?
Honestly, it's been nice for things to be relatively calm, even though I've been busy. New appointments are being added almost daily to Biff's schedule, so all that is going to get busy again. Sincerely hoping we can avoid any new crisis, but the journey will take us where it takes us. We just keep plugging away.
Love and gratitude to everyone for your support, in so many ways. The financial support on GoFundMe and directly in some cases, has been - continues to be - overwhelming. And a blessing. Such a relief from related worries. Still feels weird, but we are grateful. But, mostly, knowing there are folks out there that love us and are rooting for us really does help keep our spirits up when things are especially hard.
I hope everyone had a safe and fun Independence Day - hope you could find some relief from the heat in your celebrations. We kept things peaceful at home, as usual. Our little dog, Bopper, has a very hard time with the firecrackers and requires a lot of attention during the noisiest times. Our old girl, Snookie, used to really freak out, too, but she's so deaf now, she sleeps through all of that. More silver linings, eh?
Here's to a safe, peaceful summer of love and laughter and healing!
More updates to come as things go along. XOXO
No comments:
Post a Comment