My cancer journey

Walnut Beast · September 24, 2023, 01:45:17 PM

Ed when I read this and think about my challenges and problems it's nothing compared to what you're going through! You're in my prayers and thinking about you. Hang in there!!!

Bruno of NH · October 10, 2023, 05:09:45 PM

Quote from: Walnut Beast on September 24, 2023, 01:45:17 PM
Ed when I read this and think about my challenges and problems it's nothing compared to what you're going through! You're in my prayers and thinking about you. Hang in there!!!

I second that
Ed you are a tough man and good sole
I been cutting and splitting firewood after my Sawmilling is over for the day.
I have to sit on a bench to buck the logs up . It stinks and I start feeling sorry for myself then I think of you guys pushing through. It makes me think better . There are much harder things in life folks go through.

Ed_K · October 14, 2023, 09:16:35 AM

I've been so tired the last month and a half that if I get thru my e-mail I'm lucky. Jim be happy that you can sit and do fire wood, I just sit on the end of the log pile and watch Rita split the wood. I use the fowarder trailer to pick a log off the pile and hold it cross ways to trailer about hip height and cut 16" chunks off with my small husky 346. If I get 2 logs done I'm lucky. If their two heavy for Rita to pick up I use the picker to load them on the spliter for her.

My main cancer Doctor mentioned that I may have to try another type of medicine if my light chain numbers go up much more. It bothers me to have to switch chemo's, but there's quite a few left before I run out of options. I'd like to try the T-cell therapy but after doing the stem cell therapy at the begining and all most checking out from the brain swelling I'm very concerned about that again.

Oh well, y'all have a great day.

Magicman · October 14, 2023, 09:27:36 AM

Continue to stay facing forward Sir. I greatly admire your tenacity.

thecfarm · October 14, 2023, 01:09:47 PM

I am following this tread.
I am thinking of you!!!!

nativewolf · October 14, 2023, 03:01:57 PM

Ed I hear you and sympathize. Been there. Keep fighting, just being able to cut anything at all is wonderful. Follow docs advice. Best wishes to you and Rita from Virginia!

Ed_K · November 09, 2023, 12:50:35 PM

Had a pretty rough go here, I go covid 2 Saturday's ago we went to a maple conference and I guess when I used the handle to pour some coffee I got it. I was only feeling like I had a small cold. we both tested last Saturday and I was positive and Rita was negative. the VA sent me to the e r and after a bunch of bull they let me out of there with paxlovid pills. I only had 3 day of had coughs. This Morning we tested again and I'm negative and Rita is positive.

Can she give it back to me since I'm negative?

Ianab · November 09, 2023, 01:07:30 PM

You should be OK for "x" months after recovering. Your immunity gradually wears off over time so you can catch the virus again in the future, but right now you should be fine. One of Lil's workmates has had it 3 times now, but maybe 6 months between infections, and not serious as most people now have partial immunity.

Still concerning if you have other health issues though.

Ed_K · November 09, 2023, 04:59:03 PM

Thanks Ianab, I'm scared that might have to stay away from Rita, we live on hugs and kisses.

On another note my light chains have started to rise, they've gone up close to 200 points. The very last one droped from 323.58 to 284.2. But my platelets have dropped to 27 from 40 my Specialist Doctor has said to stop my chemotherapy and blood thinner. If it doesn't get up to 50 He will start thinking about changing meds.

doc henderson · November 09, 2023, 05:51:13 PM

you should be good for this one, but caution when the next version rolls around.

Ed_K · November 18, 2023, 09:42:51 AM

Covid sucks. From around the 30th Oct to 9th Nov I had symptoms no worse than a little cold. On the 10th I tested negative, on the 13th we tested again and it was back positive. On the 14th it hit me with a vengeance I mean like I have the flu, today the 18th I'm starting to feel better. I found out that if you use the Paxlovid like 3 time you can get long covid from it, also it can give a false negative.

Magicman · November 18, 2023, 11:37:46 AM

I am so sorry to read that you are having to deal with this awful Covid stuff..... again. It seems that we are victims of the medical drama of knowing/not knowing what is the correct thing to do.

Hopefully you will soon kick it so you can keep on keeping on.

Ianab · November 18, 2023, 04:05:40 PM

I think the problem with Paxlovid is that although it suppresses the virus, sometimes that's before your immune system builds itself up. When you test negative and stop the course the virus may still be there, just not active enough to be detected. But you don't yet have the full immune response to it, and get that "rebound" sort of case. Having your immune system beaten up by the cancer treatment drugs doesn't help either.

Overall it's still useful in keeping patients out of hospital, but it's not a magic cure. It just decreases your odds of getting really (hospital level) sick.

Bricklayer51 · February 23, 2024, 12:32:14 PM

>ed hope this finds you well i been gone awhile with many problems but been wanting to check on you see how you are doing god bless

Ed_K · February 25, 2024, 05:59:58 AM

Hi Bricklayer51, I also have had a lot of problems. Last time I came to the FF I added some word but when I posted it wouldn't go. I don't know if this will go, I tried to reset the cookies but not sure if I did that right. So I'll send this and see if it goes.

Ed_K · February 25, 2024, 06:31:45 AM

Well it looks like it went. So here an up date, last month my chemo stopped working and my light chains went way up. The Dr said to stop the Ninlaro and he has started me on Cyclophosphamide 10 capsule's once a week and every week no week's off. I'm still taking the Dexomethosone not spelled right and the darzelex shot once a month. The first week of the new script I got so tired I couldn't stay awake, but since then I haven't had any side effects that I can feel or notice. It'll be two weeks before I get another blood test so I'm not sure how this new drug is affecting me. The shortness of breath is still with me along with only getting about 4 hrs of work before I'm done for the day. We're working on getting the syrup show on the road. We put a new main line in to replace one that was 15 yrs old. I'm at the thinking that we may have missed the season from how the weather has changed, I told Rita that we'll have to start tapping in the end of January next yr.
Well time for another cup of coffee and watch u-tube videos of Old Jar Head working on the homestead
Ya'll have a great day!

Ed K

Magicman · February 25, 2024, 08:26:54 AM

It is good to read an update from you and Bricklayer51. My Prayers and Concerns continue to be with both of you.

thecfarm · February 25, 2024, 08:37:54 AM

Looks like the sap will start to flow here this week. All week above freezing temps. But I have no idea.
thanks for the update. I will be thinking of you.

mike_belben · February 25, 2024, 09:32:20 AM

Hang in there ed

Jeff · February 25, 2024, 09:42:26 AM

I recently edited several posts out of this topic, because I, and others come to it for inspiration and information on our friend, not someone elses non medical medical manifestos. You know who you are. Go to college, get a degree, until then, shut up.

Sorry for the interruptions Ed.

newoodguy78 · February 25, 2024, 08:02:42 PM

Ed I've been wondering about you lately thank you for the update. Glad to hear you're out sugaring. Certainly been an odd start to the season,hope you have a great season.

Ed_K · February 26, 2024, 07:40:31 AM

Thanks to Magic Man, thecfarm ,mike and newoodguy78 for the thoughts. Randy send me a PM I'd like to talk about your ct scan.
Well you won't believe this, yesterday I was out helping Rita adding tap lines ( drops )to the main line and broke the rib that had the radiation when I bent over to cross under the main line. I guess the tumor ate the bone some. Because I can take deep breaths there's nothing to do but put a lidocaine patch on and go to bed. This morning it feels ok but don't touch my right side. Lidocaine again today and go help Rita again, this time I'm just going to hand her tools or put lines into the hot water so she can push them onto the fitting's.

Hey, y'all have a great day today!!

doc henderson · February 26, 2024, 08:43:15 AM

Ed you are tougher than most! Doc.

chet · February 26, 2024, 09:15:36 AM

Keep on truckin' Ed. 50's and sunshine

, enjoy the beautiful day.

newoodguy78 · February 26, 2024, 10:40:15 AM

Ed in another post there's mention of the saying "tougher than woodpecker lips" that certainly applies to you and Rita for what you're dealing with. Please don't take that with disrespect it's anything but. You two are a genuine inspiration.
Sun's shining where I am today with any luck you guys are enjoying the rays as well.
How many taps you putting in this season?