James' Cancer Fight
James is a very talkative person by nature and the limitations on his voice right now are terribly frustrating for him. Just as frustrating is the fact that he will be unable to work for a yet-to-be-determined period of time during treatment and recovery. Most, but not all of the treatment will be covered by his insurance, but just barely and there will be a lot of unforeseen day-to-day expenses as I will have to put much on hold to look after him during this time.
Unfortunately, going on disability isn't even much of an option at this point without putting a lien bond on our home. Being a homeowner, with all the expenses and responsibilities that go with it, puts one at a disadvantage when one needs temporary disability assistance.
Both of us are freelancers and situations like this are hard to prepare for, especially when his ability to talk is his most valuable tool.
James is a native of Brooklyn, but for the last ten years, has called Albany home. Don't let his occasional complaints fool you. He loves it here and loves our old house. We've been best friends and partners for over eight years now.
We have a start date - November 29 - for his treatment - but we don't yet know what will follow. The first phase will be very aggressive radiation and I'd be lying if I said I'm not very nervous. There will be side effects and, no matter how well things go, this will be a long and difficult winter for him
At the moment, I can't offer any "rewards" except sincere gratitude (unless you like photos of historic markers, old cemeteries and such) and I will try to send out personal thank you notes as time allows.
And, because it felt like spring this morning, we got in a nice little walk before treatment. Getting some exercise and fresh air did him a lot of good.
The congestion continues to be an issue, but the bigger problem with that is the insurance companies refusal to cover another shipment of inner cannulas (the little soft plastic tubes that go inside the trach). Despite the fact that each tube is clearly marked (in big red letters), "DO NOT CLEAN OR REUSE," they're telling him they won't send any more. At this point, I'm tired of arguing with them and, if we can't get a prescription for more, I'm just going to order a box out-of-pocket.
There was also supposed to be a shipment of medical supplies - some sort of humidifier collar for the trach and a speaking valve, but no one from the medical supply company seems to know exactly what was ordered or which doctor ordered it. By the time that gets resolved, he probably won't even need any of that because....
On a positive note, James has ten more treatment days.
Unfortunately, since the side effects of radiation are cummulative, the side effects will probably get worse during these last two weeks, but we had an end date and it's not too far off now.
The ENT will be evaluating his trach the same week as the final treatment. It won't be removed immediately; he'll have to see how quickly the swelling and irritation from the radiation recede after the last application. He will, probably, be switched to the smaller cannula and, once the swelling is gone, they'll assess how well he can breath with a cap on the trach. If that goes well, it'll be time to remove it and heal.
It's still one day at a time, but at the same time, there's a light at the end of the tunnel (and at least he's not too sick to do his questionable and enthusiastic shimmying couch dance to the Doctor Who theme as we catch up on Season 9).
James is around the midpoint of his radiation treatment now. One day of treatment was missed because the office was closed the day after New Year's (and no one bothered to tell us!), but that gets made up at the end of the schedule. Sort of like being in school and making up snow days in June.
The biggest issue is still that awful congestion, but it's just something he has to go through. Some days are better than others. Yesterday, he was able to come grocery shopping with me, but this morning, he's be choking like a tsunami. Which is enough to make anyone irritable a. Also, at this point, there is also a lot of throat pain. This wasn't totally unexpected, but it's "like swallowing glass." He's had painkillers since the trach surgery, but after a month, he's building a tolerance to them.
Of course, there is still nonsense. Like a rep from the insurance telling the visiting nurse that they'd tried calling us three times about some of the new trach supplies which the doctor ordered last week. They finally reached us today (they were calling the wrong phone number all this time). They don't know what valve they're supposed to send for the trach. Supposedly, they've talked to "four different doctors" and no one seems to know. Well, I can't say I know which four doctors they've spoken to, but if the four doctors (a.k.a. professionals don't know, how the heck would I?
And the radiologist swears that he had this same congestion before he began radiation and that it's not a side effect. Except he didn't have any congestion after the trach surgery. Even when the radiation made his throat swell to only a few millimeters, there was no congestion.
But, sometimes, you have to nod, smile, and let them say what they want as long as it doesn't actually affect the treatment.
At least another week's worth of treatment is done and we both get two days to recharge. I might spend at least part of it watching DIY videos to figure out what's wrong with the garage door opener!
After last week's drama, we're back to a fairly normal schedule of radiation treatments for James.
Congestion continues to be a problem, though. No matter how much he clears before the appointment, it's the prone position of the treatment table, the mask, and the actual radiation itself trigger a lot of congestion. Yesterday was pretty bad in that respect. The doctors are (finally) looking into something to address that next week.
We were lucky, though, that a new supply of the disposable cannula tubes arrived yesterday. He was down to just two and we weren't sure if the insurance was going to approve a new supply until mi-January.
Last night, the humidifier broke rather spectacularly. It wasn't a really great one to begin with, but a last-minute purchase when he was in recovery from the initial throat surgery which discovered the cancer in the first place. Well, right before I went to bed last night, I refilled it, turned it on, and about ten minutes later, water started pouring out from every opening...including the vents behind the motor! Sleeping without a humidifier last night wasn't exactly ideal, but it was too late to do anything. This morning, I ventured out to Walgreens and got a new (better) one. As those of you who follow me on Facebook know, a rather intense snow squall decided to blow through just as I went out. And Walgreens was all out of large bags. So I ended up having to carry it home, sometimes balancing it on my head (which wasn't as bad...but not as comical...as carrying a large pot of lilies of the valley home from the Schuyler Mansion on a very hot day).
James is looking forward to having two days off from the treatment, though. And nothing will stop us from having our usual escarole and beans for good luck on New Year's Day!
Happy New Year and thanks again!
Our Christmas was quiet, as can be expected. James' parents came up at the last minute with, as always, lots of good food. This whole situation hasn't been easy for them and it's a long drive up from West Point.
The last week has been quite chaotic. James returned to radiation for the first time since the trach surgery.
On only the second day back, however, there was some drama when he had a very bad spell of congestion interrupt the actual radiation treatment. I won't get into too many details, but the nurse sent in to assist him with the congestion wasn't helpful - she berated him for getting mucous all over himself. That's the short and sweet version and I'll leave it at that.
Aside from that incident, radiation is on schedule. The new end date (allowing for the two-week delay due to the surgery) is at the end of January (barring any canceled days due to serious winter weather).
So far, the congestion is the huge side effect from the treatment. Some days are better than others, of course. We've got the whole suctioning routine down, but it's still yucky! And, some days, there's a problem with the medical car service. The drivers and dispatcher are really great, but the call center that handles the scheduling is awful. You go over the details of an appointment twice with the operator and it still doesn't get entered into their computers. Their on-line scheduling form is even worse.
On a positive note, we had a follow-up visit with James' ENT. She's talking about eventually transitioning him to a small tube and already talking about its removal once he finishes the radiation.
There are, of course, still more issues with the insurance. The cancer might have been caught sooner if they hadn't denied an initial CT scan ordered by his primary care doctor and then there was an issue with a prescription they didn't want to pay for. Now, they're giving his visiting nurse a hard time about ordering more boxes of inner cannulas, the disposable tubes that go inside the trach collar. It's the most important component and there's only so many times you can clean those things, but their position is, "We sent some cleaning kits." Sorry, there's only so many times you can clean something that has to be inserted into a hole in your neck. So, the nurse is putting in the order and we're just going to brace for another showdown with them. If we have to pay, we'll pay. It's not like we could just DIY an alternative out of drinking straws and duct tape!
I wouldn't be surprised if they decide they don't want to renew the suction machine after January 13, too (though it's obviously going to be needed until the trach is removed).
At least nothing affects James' appetite!
And, with that, we're off to radiation in an hour.
I know this is hard, but just believe you will get through this. Positive attitude is important. My thoughts are with you.
To all the Supporters who have given me a thought through action of a kind word or donation is most appreciated at this time.I'm into week two of the Cancer Radiation Treatment and do to its location in my throat the tumor sits in the folds of my vocal cords in my windpipe constricting the flow of air entering and exiting my lungs its a very scary feeling of being suffocated alive !!!! I'm faced with a moral decision to have a tracheotomy performed this Friday and use some prayer to help me to get better now in the future.Thank you and God Bless Everyone !!!
Though Adversity Comes Victory We Walk with not Sight Alone But with Faith Thank You One and All For Acts Kindness and Support. God Bless and Wish Me Luck !!!!