Kevin's Watch

Sorry I am joining this thread late and have not read the first five pages yet...so you might have already answered this.

Just curious has COVID affected your treatment, access to treatments, places of treatment, speed of treatments, etc?

I ma wondering because my wife needed something simple that in the past was realtively quick now we had to jump through more hoops because different places were have jump through hoops for access due to COVID. Of course it was non urgent so that was probably the reason...but again just curious.

Stay strong and good luck!

How my treatment has been affected by Covid

Yes, some of the testing had been slowed down when I was first being diagnosed. Several things that the doctor said, "get this scheduled and done by the end of the week" that just wouldn't happen because of everything going on. It still happened faster than a non-urgent test, but usually it ran along the lines of "well, we can get in you in two months from now," until we brought up the why and who was requesting it, and then things tended to fall into place.

Obvious things like wearing a mask to everything.

Semi-obvious things like my wife not being able to join me for appointments in person, so I have to get her on the phone to listen in.

Zoom meetings instead of in person appointment for some of the doctor visits.

Less obvious things like new rules being implemented due to Covid, such as my first PET scan where they were only bringing in one patient at a time to the facility, and had to schedule accordingly.

Not obvious things like when I got my port installed (which is a triangular rubber jobby with a small hose that they put in your chest and connect the hose to your jugular vein to put the chemo through). Everyone told me I would be put out for this process, but when the time came, I was told I would not be put under fully because they would have to intubate. It occurred to me later that they reason they didn't intubate was because of Covid and the lack of intubators at the time, and they probably needed all they could get, leaving some patients having to content with "twilight sleep" (where you are awake, but not so caring) instead. I have to say, I was pretty terrified during that process, especially with trying to keep still while cutting on my jugular vein, but after I figured things out later, I felt just fine with my sacrifice.

Have no fear, Cagliostro. You are in good hands. Well, legs. Balsamyn will carry you to safety.

Damn, that last bit does sound pretty terrifying. (Not to mention the infection...merry anti-christmas to you... )

Ok, clearer about the time off and stuff, didn't realise you'd only started there so recently, musta made it extra difficult.

Well, sounds like things are moving ahead, so here's continued hoping that all goes well man.

Chin up.

--A

Read all the pages now. This thread is very inspiring and thoughtful. Thanks for all the updates. As many people have said what really can be said?

I am sure you know this ...but sometimes it needs repeating. Allow yourself to feel any emotion you are feeling. If you are mad allow yourself to be mad. If you are sad allow yourself to feel sad. My wife handles many mental diagnoses and well meaning people tell her how to just get over it...you can fight this, I suffer through the same thing and have done X,Y,Z etc. I tell her if your fight is just to smile today... then that is enough and you don't have to do anything else because you gave it what you could.

Fight your own best fight every day...no matter what that fight is.

Catching up and wondering how you are doing, Cags? I hope the colder weather is refreshing.

Similarly Cags. I'm a bit reticent about asking because I'm thinking that if you have anything to post then you will post - but just to let you know you're in our thoughts, posting or otherwise.

Oh, at the moment, I just keep on keeping on. The colder weather makes my bad days all the worse because I'm typically cold in the house, and now that it is cold outside, I'm colder than usual.

Mainly things are evening out in the final run. The side effects are getting less intense, but lasting more days. It's a little different from week to week, but lately the fever doesn't hit above 100 very often. So, I make the best of it, even though I'm still definitely suffering. I want to think since it is less intense that we'll see a good PET scan, as those I have met who had less intense side effects tended to have clean PET scans. So that's what I'm hoping for.

Tomorrow will be my 6th treatment in this latest cycle of 9 treatments. Then I have a week off, and 3 more treatments to go. Then the PET scan.

I understand they typically only do 3-6 months of chemo which is as much as a body can take. I've been doing close to 6 or 7 months with a month off. This is because I changed chemo treatments early on, and have been solidly on it since then, and will be on it until January, barring any problems.

My neuropathy is bad at this point. My feet feel like blocks of ice, particularly if I don't wear anything on my feet. Slippers make it feel a bit better, but I have edema in one of my legs so I'm wearing old person compression socks lately which takes some of the chill out of it.

I think the most accurate portrayal of what I'm talking about is to imagine in your hands and feel that there is crust of numbness, kind of like the crust on a creme brulee, but maybe a bit thicker. But it never crackles off satisfyingly. Underneath this layer of numbness is sensitivity that seems heightened, so smacking my toe as I so often do these days hurts more than usual. But even weird things like standing on a towel with a fold in it is extra uncomfortable for some reason. Or Frith forbid, stepping on something like a Lego is horrible. Even when my wife has tried massaging my feet, it is a strange blend of feeling kind of good and too much sensitivity that it feels uncomfortable as hell.

While typing this up, I got a call from the doc who recommended a place for acupuncture for help with the neuropathy. I don't think I'll take them up on this because of COVID related carefulness, not to mention I'd have to work this into times I'd be at work, more than likely, but also because having needles stuck into my feet might be excruciating with my heightened sensitivity. Massage is also an option there, but my wife is a trained, though not currently practicing, massage therapist. She's done a bit, but I've not quite found much assistance with that. But then again, she said has never had any special training for neuropathy, and maybe these folks do.

Anyway, it's getting to the point with the neuropathy that I suspect by the end of this I may not be walking much, if at all, except to the bathroom. My legs are definitely weak and had a moment over the weekend where I got on the floor to fold something, and almost couldn't get up. We try going for walks around the neighborhood and I borrowed a cane from a friend to help steady me, and I'm amazed at how a year ago I felt ready to take on a fourteener (mountain), and this year, three blocks around the neighborhood make my legs shaky while using a cane more and more for support than just balance. I work downstairs in our house, and if it gets much harder and my legs get any weaker, I'll need to move upstairs. I'm taking the stairs extra careful because I don't want to take a tumble, and it is almost too much anymore, but I don't want to give it up because it does keep working my legs better than just walking around the house would do. And the weakness comes and goes with my good and bad days.

Still, I'm just mainly trying to keep the side effects in check until this is all done. After tomorrow, only three more treatments, and that is after a week off. So I feel like I'm in the home stretch once tomorrow and the rest of the week are past me. I just hope all this shit will have been worth it.

One more thing to bitch about is that mentally I feel...less. I struggle more and more for common words that I should know, and it is frustrating. Thankfully I have a decent vocabulary, and can talk my way around the word I can't think of, but it is getting worse and worse. I definitely feel like I am experiencing a lot of things people associate with old age. But that's part of why I'm not writing as much these days. I find my typos are out of control as well. And it is all frustrating.

But I just keep telling myself that it is almost over, for better for worse. Signs point to better. But I don't think they are going to do more chemo because I don't think my body could take it. But we'll see.

Anyway, that's where I'm at currently, and thanks for kicking my butt to continue this whenever I do bother dropping by. I didn't realize my last update was about a month ago.

It is good to hear from you, even though we can't do much than hope for you and wish you strength. Part of staying positive is not stopping doing positive things, and I think that staying in touch is positive. So, I'm hoping for you, and wishing you strength.

Ah, Cags... I wish there were words. You've been here 15 years. And I just realized I just passed my anniversary. I'll have to see how many years when I post this. Point being, a whole bunch of us love you.

Fist and Faith wrote:Ah, Cags... I wish there were words. You've been here 15 years. And I just realized I just passed my anniversary. I'll have to see how many years when I post this. Point being, a whole bunch of us love you.

What he said And what wayfriend said. Thanks for writing it all down - I definitely get a feel for the ordeal you're going through from what you write.

As coherent and informative a post as I could have managed at my absolute best Cags! If this is you feeling sluggish, then what chance do the rest of us stand when you're back up to speed!

Best of luck with the PET scan if you don't get to post again before it is done! Amazed that you are still working through all of this - I'd have folded on that one long ago! Respect and Power to you.

Thanks for all the love and encouragement, folks. It definitely is not falling on deaf ears, and keeps me going. I'm surprised that even after 15 years of being here, there are people still willing to talk me, let alone offer love.

peter wrote:Amazed that you are still working through all of this - I'd have folded on that one long ago! Respect and Power to you.

Honestly, since I have a family I am supporting and is DEFINITELY supporting me through this, it's not a tough decision to do everything I can to stay alive. Maybe if I have to fight this again when the kids are teenagers, I might feel differently.

As much as an uphill struggle that this is, I've mostly had no pain to temporary and predictable pain. It's only gotten particularly intense lately, but I see the peak up ahead, and can push through the pain to finish the climb. Hey look! It looks like I took on a mountain after all, albeit a metaphorical one!

And Peter, thanks for the ego stroke on my writing ability. I find my writing is best when I'm allowed to be emotionally honest, and this is a prime opportunity, which is why I took up the challenge to talk about this. I never got around to the blog because I'm lazy, but this has served the purpose and I didn't feel the pressure to write here like I would have with a blog.

With that said, I'd like to return the compliment, and find your writings very wise and insightful as well, particularly your Brexit posts of the past. I felt like I had a much better view of what was going on than just reading the news, so I appreciate you too, sir!

I mainly started writing this because I figured it would be good therapy for me, but mainly to be informative to anybody who might later be going through this for the first time, which is why I've been so honest and described the indignities and humiliations of this process for myself personally. And yet everyone's experiences are different with this stuff, and could look very grim to someone who may not want to do the fight and realize they have had a good life and just be ready for release. I'd argue there is always room to fight the good fight despite of all this because you might be one of the lucky ones who take chemo like drinking water and have no ill effects and get through it without an issue. Because I've met a few of these people and they exist. And things are improving all the time medically.

Take care, all.

I'm humbled by your post Cags (not easy to do to an ego the size of mine ) - I had a cancer 'scare' a year or two ago that reduced me to a quivering jelly at the time. It turned out to be nothing, but gosh was it a horrible mental experience. Your candid account of your experiences with the actual beast itself .........well, as I say - humbled is the word. More power to your elbow my friend.

Good to hear from you Cag, (18 years Fist. ) and really, can only echo what has already been said far more gracefully than I currently feel able to manage.

Hopefully the weakness etc. is also only a function of ongoing treatment etc. and you'll be back on the (actual) mountain again once this metaphorical one has been summited.

(And in no way does its metaphorical nature detract from the difficulty in surmounting it...indeed, metaphorical ones can often be steeper and more challenging than mere physical rock.)

Keep on keeping on, and we will keep on listening to your story, joy of course being in the ears that hear, right?

--A

If joy is in the ears that hear, this will definitely be a lot more of a Thomas Covenant like take instead of a Foamfollower type. Enjoy the misery!

By the way, this was written for a friend that I don't talk a lot with these days, and I figured it could work double duty at giving an update, but I honed it a bit to match the forum a bit, although I left in most of the cursing, to which I apologize to those that may be unhappy with it, but I think it is appropriate. And I did leave out a comically horrible Grubhub experience this weekend because I forgot to mention it to my friend, but also because why pile it on?

2020 is the shit year that just keeps on giving, and doesn't seem to be stopping. I know things won't magically get better with 2021, but I hope it fucking curbs a bit.

Still going through my treatments, and aspects are getting easier, and aspects are getting harder. The hardest elements, which is the coldness, tummy issues, fighting a fever, is extending into days it never did before, and so now the majority of the week is dealing with that, whereas it used to be a bit more of a minor, but more intense part of the week. I had the week before Christmas off from treatment, which was nice and shored me up for the fight during the final 3 treatments.

Last Tuesday was the first of those three treatments, and it normally takes until Thursday for me to start feeling bad, but it started hitting a bit Wednesday night. Trump gave government employees the day off on Christmas Eve, which was good and a bummer because contractors don't get the day off, and where I work now deems it that, despite our inability to work because our "customers" are not working, we have to take PTO for that day or not get paid. I just recently got back into the positive PTO after fighting many bad days to stay working so that I could actually have some vacation time one day. That's gone now.

But it is a good thing that happened because my wife, on Christmas Eve, started having a lot of pain at 8am and a little after noon she ended up going to the ER, in which they found she has a kidney stone. Since this is on a Thursday, and my bad day, I was fairly useless at taking care of the kids while she was in the ER, and if they found any sign of infection, she'd have to be shipped over via ambulance to the hospital to get antibiotics pumped into her system to fight against life threatening sepsis, and would definitely stay overnight. THANKFULLY that didn't happen and she was infection free, but a lot of the afternoon was stressing on that while I dealt with chills and no energy. Then she was released just as I finally got off my ass and half-made supper. We ended up going to fucking McDonalds as it was the only thing open and sat in line forever with a bunch of other saps, despite my stomach wanting none of it. But the kids and wife got fed, and I just had a horrible tasting cheeseburger (because my taste buds are so badly skewed these days that they make bad things even worse).

After eating, it was time for The Quest For The Only Open Pharmacy On Christmas Eve Night. I still had to drive despite not having driven in months because my neuropathy in my hands and feet make me a little afraid to trust my speed and such, mainly because Carla had been given morphine for the pain. Finally, we found a CVS that was open 24 hours even on Christmas Eve after they didn't pick up for the first several calls we placed, and brought the paper prescriptions (4 of them) across town because the ER couldn't do the research for us. Thankfully it only took 20 minutes to get those filled once we got them in, and we got home just in time for the kids' bedtime. We set up and went the fuck to bed.

The next morning was good despite the wife and I both moving slow, and the kids woke us at 6am, which was the latest we could agree to in the discussions with the kids who normally wake up and sneak downstairs around 5am to play videogames before school. We like to film their reactions each year, so it's probably our own fault and should have called that off this year, but it turned out well, as Desmond got something he didn't know about that was just perfect for him (a Horizon Zero Dawn boardgame, based on his favorite videogame of all time), and Sophia got Magic Tracks that is an RC car thing that she loved, but she loved the stuff in the stocking more, which were the usually bits and bobs from our perspective, but were magic to her. They were both so happy and made it worth it, and we had a very long and very funny gift opening exchange, despite the parents not having much to open because Carla and I opted not to exchange gifts this year, and my main gift that I asked people for money toward was a PS5 that we couldn't get our hands on, and probably won't for months to come because the damn scalpers bought them all.

But the rest of Christmas day and the two weekend days were just Carla and I just too weak to take care of the normal duties and her fighting pain and me fighting difficulty standing and remaining warm, but not too warm that I run a fever. We did get this game that took the edge off a bit though: https://www.youtube.com/watch?v=v_n9HdRs-TI

Oh, and today I'm all pissed off because, although I heard a few weeks ago that the contractor I've been employed with lost the contract, the new contractor that sorta wants to recruit us so that they don't have to train everybody needs us to submit our resumes right away because they want to start interviews next week. No idea if the extra week vacation that I negotiated stunningly before I started with this contract before I found out I had cancer will be honored with the new contractor or my pay. Or if I'll even get hired because I can't tell if I should even mention that I have cancer that I am currently being treated for, and will be about 6 months before my immune system rebuilds itself before I could even feasibly return to work.

After my next two treatments, I'll then do another PET scan and see what fate has in store for me. With the flip of a coin, it could come out that the cancer is not longer showing and treatment is over and it is in remission and I take good care of myself to try to live as long and well as I can before it probably eventually returns. It could be a decade or two, or it could just be a year or so. Or, the other side of the coin would be they are still seeing some there, and if there is anything they can do, I keep fighting, although I doubt chemotherapy is still an option because typically the body can only handle about 6 months of that, and I really feel at the end of what I can endure. Which then means get my hospice preparations in order, and live as good as I can with the time I have left. The last PET scan showed a significant reduction in areas lighting up with cancer and the cancer in the lymph nodes pretty much gone, so I am pretty hopeful, to be honest.

I'm pretty stressed out of my mind, and with all the new shit that gets thrown at me pretty much weekly, I'm just hoping it is 2020 and that all will magically be better in the new year. Sometimes that magical thinking is all you have.

Sorry to be such a Debbie Downer, but it really has been a shit time, and I was hoping to make it comically so, but I think I failed and came off more of a really fucked up version of Charlie Brown. I definitely got a rock, and so did my wife (in her kidneys).

Hope all has been good overall for youse guys. Happy New Year!

Hey Cag!

That's a painful post to read - wow, how much shit can life throw at a guy! My heart goes out both you and your wife......jeez! Kidney stones thrown into the mix the pair of you already have! I love the part about the kids opening their Christmas presents - there is real joy in there Cag, for any ears that hear.

I thought of you on Christmas day - was going to post a Christmas best wishes, but it's difficult to know if it's the right thing to do because one doesn't know from day to day how your rollercoaster is going. But belatedly, Christmas greetings my friend and more power for a good result in the New Year!

Sheesh, Merry Christmas Cag. To be fair, Charlie Brown can be funny. And hey, seems like the last scan showed promising progress, so I shall simply assume that progress will continue.

Dunno about there, but here you'd only need to disclose it if it had bearing on your performance etc. (That said, not being able to start for 6 months would probably be relevant.)

Good luck with everything, let us know how it goes.

--A

I doubt it will make you feel any better, Cage, but I couldn't agree more with your take on 2020. Worst. Christmas. Ever!

Stag and I just miss our family so badly it physically hurts. School will reopen all-online in a few days. It's really hard to stay in touch with a sense of purpose in all the isolation.

Well, here's to 2021 NOT completely sucking. Happy New Year, everyone.

Happy New Year Cag!

Thanks for your honesty in all this shit. You're probably the first person I know who has been honest about this ordeal. Well, maybe not, but anyway - hope 2021 is ever so slightly less excruciating than 2020...