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Staying strong and facing an uncertain /certain future
Two weeks ago my husband and I met with his nephrologist. He has been in kidney failure for several years but nothing changed too much for awhile. At this visit his GFR was 17 and creatine was 3.4. Last year she had us go to an informational training with a nurse that covered dialysis and transplant. At this appointment she told him he was not a good candidate for a transplant because he has a pacemaker and he is 74. Also she said the numbers are not as important as his symptoms. Currently he is very fatigued and sleeps or naps most of the time. I volunteered to be a donor and so the doctor referred him to the transplant team.
I found out that at this transplant center they do not accept donors over 70 years old. They do at other places though, but he doesn’t want to go anywhere else.
To try and shorten this up, since last week, I have been crying over anything-I mean anything. Yesterday I went to the local store for broasted chicken and they were out. I started crying and couldn’t stop. Crying when I unloaded the dishwasher because he usually does that and he was too tired. Crying if I even think of any kind of chore or problem I need to do.
Last year my father died, my brother-in-law died, my uncle died, a good college friend died, my sister-in-law died. I was injured and had shoulder surgery.
It is all just so much. I am a strong person, but I can’t seem to get control of myself right now.
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Your husband’s comment had me cracking up! Mr Crabby pants will have to put his raw meat on hold for a while and become a bit more civilized with his meals by using fire. LOL.
You two sound like my husband and me when I was going through all my hoopla. We’d have the nurses in stitches too. Life is much more fun with a sense of humor.
The arm covers are a great idea to avoid some nicks and scrapes in his shop. In his heart he knows what he has to do, he’s just going to give you a run for your money on all of this!
Nadir or neutropenia…you may hear both terms come up, essentially the same thing. He may crash or he may just get crabbier. 😂. But yes, he will pull out of it in time for the next round. It’s all part of the process. Love talking with you! Keep me posted. Give Val a fist bump for me!
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1 ReactionHi Lori! Thinking of you and thought I would check in. Mr. Crabby Pants is just that today. Tired and crabby🙄 and bored, too. He calls it “Irritable Val Syndrome”. He struggles with sleep issues (was in the throes of working with a sleep doctor at Mayo when we got side-tracked with the lymphoma) and he’s not sleeping that well. Could be the chemo, too, perhaps. Naps, I say!!! Another item to negotiate 🤣🤣 Everything else is good, the dog and I, included . I’m going to make a batch of health food cookies now. Oatmeal chocolate chip. The oatmeal negates the sugar and butter, hence health food.
Hope all is well with you! Air hug headed your way❤️
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5 ReactionsYou and Val need to take this act on the road!! LOL. “Irritable Val Syndrome”. 😂 He is a hoot and I’m happy to hear he’s keeping his sense of humor through all of this. I swear that was my way of coping too. Lots of ‘gallows’ humor where my med team of doctors, nurses and my husband all were willing participants. Under the auspice of “TMI” the funniest story had to do with the first enema I ever needed, which occurred along my cancer journey…or odyssey as I prefer to call it. I was in the hospital at the time and after waiting 6 days until my neutrophils rose, (to avoid infection) my oncologist came in one morning and said, “Today’s the day you have a date with Cheryl.” Hahah she was my chemo nurse but she was the angel who would ‘do the deed’ for me! It will be a cliffhanger because I can’t share the story here but suffice it to say, we had a ‘delivery’ and hilarious conversations along the way, which became legend in the nursing circle of our hospital cancer wing! 4 years later and every time I go up for a visit my chemo nurse and I burst out in giggles for our shared experience.
Laughter seriously is the best medicine!
Tired, crabby and bored…these are luxuries in the world of the big C. If Val’s still feeling all those and still gives a hoot, then he’s doing great! LOL. He may not think so and he has a ways to go. But it will pass, I promise! And he’s obviously getting incredibly great care…cookies!! I’ll take a couple of those!
I hope you and the dog nap when Val naps so that everyone is bright-eyed and bushy tailed!! Group air-hug! 🙃
Good morning you two…just popping in to see if you’re both surviving. 😂. I’m expecting the Irritable Val Syndrome is starting to turn back into Mr Ray of Sunshine…
Any improvement with his sleep issues?
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1 ReactionHi Lori! Thank you for checking in on us. You are absolutely correct - Mr. Ray of Sunshine has come back into the building. He is doing much better. His sleep issues are so long-standing - years and years. He almost exclusively worked nights in his previous work life and never recovered from it. We're both hoping and praying that the second inning on Wednesday/Thursday will go
as well as the first rounds. We see the PA for the first time on Wednesday, after blood work and prior to treatment - I told Val that I'm going to rat him out on his offenses - like not letting me poke his hamburger patty with a thermometer, and well, that's it....he's getting more agreeable to the fact that he has some rules and regulations that are for his health and welfare. Ahhh....my Freebird.....he just rolled his eyes at me and pointed out that I don't know what he is doing when I'm not looking. That's why he keeps sending me out to work in my studio! I'll catch up with you after this round. Thanks again!
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2 ReactionsAnd another thank you - it feels so good to have you to turn to and have you checking in on us. I'm sending you a Ghost Hug - you can't see it, but you can feel it!!!
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2 ReactionsI can feel the hug. ☺️. And as for Mr Sunshine cheating on meat temp before eating, he’ll learn the hard way if he gets an intestinal issue. Reminds me of the joke by Mark Twain: A man who tries to give a cat a bath, learns a lesson he can learn no other way…😼
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1 ReactionPerfect. I just read this to him.😘
Hi Lori! Mr.. Ray of Sunshine had his 2nd round this week. Had a bit of a reaction to the Rituxan 7 minutes before the bag was empty. Go figure! He got cold so they stopped the infusion and while waiting for him to warm up his back started getting sharp pains. Holy cow! Out came the emergency kit! A dose of Pepcid and Demerol and a little delay and he was back in business. Whew knew🙄? Everything else was good - blood work, appointment with the PA and the chemotherapy. He's feeling tired, but, still doing stuff. I'm still the Queen of Temperature Taking - both his forehead and the meat😉 and Mr. CRABBY Pants has not been around, only Mr. Ray of Sunshine. For now🤣 one Day At A Time literally. 🤣 Hope you are doing well!!
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3 ReactionsGood morning! Sorry for the delay; We were on the road the past 3 days but now home and getting settled again. Tough waking up this morning in Wisconsin…we were in FL for a few months and returned home to 8 inches of snow…won’t be going barefoot through that white stuff today! 😅
Happy to hear Mr Ray of Sunshine is still beaming happiness throughout his kingdom. Hopefully that won’t dim in the middle weeks but if so, he knows it’s temporary and the clouds will part again. 🙃 It’s really encouraging to see that all his numbers are looking great! That little setback with the Rituxan isn’t unusual. I had a few too…the moments are dealt with and then it’s over. Mine always seemed to be from infusion rate edging up too quickly. So we’d slow it way down and I’d watch a movie.
Had to laugh a little when packing up to come home. I cleaned out a drawer in the bathroom and grabbed the little bag with ‘medical stuff’…thermometer! Your “Queen of Temperature Taking” actually popped into my head…just don’t get the meat thermometer mixed up with the other one. 😂
Thanks for checking in!! I need to find boots, socks and warm jackets again. Ho hum…
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