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.
It's hard to say more right now as I wait for his parents and older brother to drive up from Fort Montgomery. But I want to say thank you to all of you. And I will write more when I can.
Much love and thank you.
It's been two months since James finished radiation treatments. Earlier this month, he had an examination with his ENT who said that some of the swelling had come down. And, on a positive note, she said she saw no visible sign of the tumor. Of course, there are still CT and PET scans to be done down the road, but we're still taking that as good news.
He wants that trach tube out badly, but it's not going to happen anytime soon. About three weeks ago, the ENT switched him from a 6 mm cannula to 4 mm one. I was present for that and got to see the actual hole in his neck which isn't the nicest thing to look at up close.
Switching to the smaller cannula is supposed to a step towards eventually removing the trach. His pulmonary Nurse Practitioner (who is such a lovely person) has a lot of experience with trach cases and, on his last visit to her, he was doing well and she said there was a good chance of decannulation by mid-May.
Unfortunately, that was before the switch to the smaller cannula and, since the switch, he's had a lot of discomfort. The post-radiation side effects which were subsiding are now troubling him again and almost as bad as those final tough weeks of daily treatment. He had some severe choking fits almost daily and, some days, multiple times. These were scary to say the least; his face would turn red, he would struggle to breathe, and it was very painful.
He ended up having to see the ENT again not even a week later. She said he still has swelling at the base of his voice box, possibly caused by an infection. So, she's had him on antibiotics and an oral steroid. The latter seems to have helped, but I'm really not too comfortable with the possible side effects of the steroid and I'm hoping the swelling will come down quickly so he can taper off that as soon as possible.
Earlier this week, he some bleeding, but that was mainly from the coughing fits ripping at the sores caused by the radiation burns and, since the antibiotics started working, that at least went away quickly. It did have me more worried than I'd let on to anyone at the time and I constantly worry that the choking fits will come back. So I can't really leave him alone for long; just enough to run to the store or the library or for a cup of coffee out. On good days, I might take a walk through the museum just to clear my head for a minute.
Recently, he was also given a humidifier machine which is basically a compressor with a hose that attaches to the trach collar because, between the bouts of bad congestion, his throat gets extremely and painfully dry. No matter how much he follows the directions to stay hydrated, to use a special mouthwash, breathing through the trach causes that painful dehydration.
He can't even sleep upstairs in a proper bed, but has been sleeping on our couch for months now to be near all the machines and medicine. Every night, I can hear him wake up a couple of times with congestion and coughing, then the hum of the various machines. I don't think he's slept through a full night since December, even with painkillers and a mild tranquilizer for anxiety.
And, to make things worse, the suction machine that he uses to clear the congestion caused by the mucous stopped working. It didn't burn out or break. It just stopped working. It took a good month to get it replaced because it takes forever for even the simplest things to work their way through the insurance. And, when the medical supply company sent a supply of cannulas for the new, smaller trach, they sent the wrong type (his twists in, they send ones that clip on). Hopefully, it won't take forever to get the right type. He only has one right now and, if that one gets damaged, it'll be a big problem.
All of this means he won't be having that trach removed just yet. And that's a huge disappointment because, before the switch to the smaller cannula, he was feeling well enough to come help with grocery shopping and even took a couple of long walks downtown. Now, he gets winded just walking around the block and has to stop to clear mucous every few minutes. It's not pretty and he can't really go out alone.
He did get the speaking valve for his trach, but it hasn't helped. He can only wear it for a few minutes before his throat burns and he has difficulty speaking. He's supposed to keep using it to get adjusted to it, but it's very uncomfortable and frustrating.
Recently, he was also given a humidifier machine which is basically a compressor with a hose that attaches to the trach collar because, between the bouts of bad congestion, his throat gets extremely and painfully dry. Between the suction machine, the nebulizer, the humidifier, the boxes of trach care supplies and the endless prescription bottles, the living room looks more and more like a cross between a drug store and a medical supply warehouse.
His appetite is still O.K., but there have been quite a few days when it was painful (and squeaky) to swallow and even soup or yogurt triggers congestion and coughing. Other days, he's not so bad and can have something he enjoys (like spaghetti and homemade meatballs). He still has to be careful not to choke.
On top of that, we're both very stressed lately. All this medical equipment uses a lot of electricity so the bill is going to be ridiculous this month. And, because this illness has been ongoing longer than most people know (he was showing a lot of symptoms this time last year, but wasn't biopsied until October), property taxes are now behind. We're going to work out a payment plan, but it's not easy. Still, better to pay a late penalty than not at all.
And, last but not least, this morning, he was just told that his disability claim was denied. I guess having laryngeal cancer and an emergency tracheotomy is no big deal. Time to start working on an appeal.
Before I sign off, though, I want to say that we're both so sorry to hear that our across-the-alley neighbor, Ellen Picotte, passed away earlier this month. She was well-known in our neighborhood so it's a big loss for many. We didn't see her regularly and didn't actually know she was ill until we ran into her in the waiting room at New York Oncology Hematology just before Christmas. So we're both sad to hear that she passed away and best wishes to her loved ones.
But, as our most recent nurse said a couple of nights ago, we just have to keep moving forward in a positive direction. Which is what we've been doing, despite the setback after the cannula was changed.
And thank you again. We mean it.
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).
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 !!!!