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.
I'm sorry it's taken me so long to post a new update. I meant to write something a few weeks ago, but with a million little things going on at any given time, I just haven't had a chance to sit down and write a proper post.
James finished his radiation treatments a month ago this weekend. That is a massive relief. Having to make the trips up to NYOH every single weekday was tiring and, in his words, the radiation "really kicked my a**!" The choking and congestion during the actual treatment sessions were especially bothersome towards the final week. And, since the radiation keeps working inside the body for some time after the last treatment, there was a lot of discomfort after. The radiation burn has been pretty painful (inside and out), but is slowly subsiding.
As for the trach, he wants that out badly. The collar that keeps it in place is very comfortable since it sits right over the radiated area of his neck. And there are various side effects (especially the congestion). The congestion is still keeping him up at night and the oxy isn't really doing much for the pain. We had one week without the visiting nurse which meant I had to help put on a new trach collar. Those little velcro straps are tricky and it's surprisingly unnerving to do for the first time.
There is still the issue of what the insurance doesn't want to cover. They made a fuss about not covering more inner cannulas (even though each tube was stamped "do not wash or re-use) and don't like covering the very important CAT scans, but have no problem covering ten times more disposable suction tubes that James could use in a century.
But there are quite a few positives. His appetite is good, even though there are days when it still hurts quite a bit to eat. He only lost ten pounds since the initial biopsy back in October and...shhhh...he needed to lose those anyway.
His ENT doctor switched him to a smaller inner cannula for his trach which is a step towards its eventual removal. Decannulation will be dependent, in part, on how much the swelling in his throat recedes by the next visit in a month.
His breathing is stronger (when the congestion isn't acting up) and he's getting a bit more active. He's been getting out for some longer walks and even helped shovel the snow after our winter storm earlier this month.
He's also been seeing a pulmonologist and things have been very positive there.
He's admittedly getting restless, but there's still quite a way to go.
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!
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 !!!!