Much worse following bone marrow biopsy

[Andrew]

You should get an EKG also.
(Have to rerad some of the pista in the middle- so first setback bone marrow biopsy, second setback dental (and gum) cleaning but i nay have missed what was in middle

I have an ekg done last week. It was normal. I got a blood test but I don't know the results yet. If I find out something significant I'll post it. But I'm having trouble staying on top of this.

My plate if very full and troublesome. I just spent more than three weeks trying to get my cancer meds refilled. It took a lot of phoning. Luckily I started this process early when I still had pills left. I only missed 3 days. But the whole thing was incredibly stressful.

And next I have to get a copy of my xray that showed emphysema. Because the thing is, I have a partially collapsed lung and it's very obvious. I've seen two X-rays of it in the past. So I wonder why the radiologist didn't bother to mention that. Was I magically cured? Was it my xray?

And I also have to get to my eye doctor for eye pain. And then I have to get a second opinion on my cancer.
With all this stress on me, I'm surprised I'm still alive. Sometimes I wish I could just not deal with all this and maybe I'd get a lot better.

Anyway, I usually don't go on and on like this. But I thought I'd explain this time.

 

[Zebra]

With all this stress on me, I'm surprised I'm still alive. Sometimes I wish I could just not deal with all this and maybe I'd get a lot better.

Anyway, I usually don't go on and on like this. But I thought I'd explain this time.

Hi, @Andrew

You didn't go "on and on" at all.

This was an exceptionally concise and unemotional statement of what you have going on in your body and in your life right now, and I am shocked and saddened that so much has been thrown your way at the same time. I *really* feel for you, Andrew.

If there's anything related to pneumothorax or atelectasis I might be able to help you with, please let me know. I learned a lot about this in 2020 after my right lung collapsed.

I wonder if other folks on PR might be able to recommend a Patient Advocate service to help you through this time. It would probably take a bit of extra effort to get them up to speed, but maybe they could help you with small tasks (like medication refills) going forward.

My very best wishes to you!

 

[Zebra]

Having electrolytes that are even a little bit off even if obe not officially in acidosis or alkalosis can make one feel like one is at deaths door. low white blood cell count and low neutrophils can also mean an infection because it can point to the those things being in the infected tissues rather than circulating in blood. How are you doing now? Any cause foubd for the altered sodium? You can PM me or start a new thread if you dont want to interfere with andrews threws

Hi, @vision blue

Just a quick note to thank you for the information and for your concern. I really appreciate it.

 

[vision blue]

@Andrew I am glad you did explain but note it’s not that different than what I was imagining imagining that is is I totally get it - much more than you’ll ever know - and I suspect others on this list yas well. the maintenance that we have to do is overwhelming and inconceivable and they also make it harder for instance you should not have to be the one to Find out why the radiologist didn’t mention that about your lung and so forth. I’ve always thought that would be great if I could leave money to make life easier for people with illness but I’m not sure how it would Work as somebody would manage to suck up the money and they would do something like make people jump thru hopes and give five applications in order to get the money to make their life easier…

Not to give you one more thing to do but hang onto a copy of the EKG because there’s normal and then there’s normal if you know what I mean. A lot of info in that EKG and good reason for anyone in the COPD family to take one regularly as a way to even keep track of COPD.

I’ll try to go back to some of your other posts to read about your cancer

Earlier this year i wrote a list of the serious things that need care and it made my own jaw drop open. Yet here we are still. (And i share the what happens if insay hell with it and drop the ball)!

If your chest x-ray is not worse than your previous chest x-ray it’s possible that they have not found the true cause of your post dental cleaning setback or even your post bone marrow setback

We all have different strategies but I found something unexpected help with the I can’t believe I require this much maintenance overwhelming thing. I declare one day a week my own personal Sabbath it’s not religious but it’s the same day each week and then that one day it really is my day of rest it doesn’t mean I do nothing but it means I have absolutely zero obligation to make any progress on any of the chores but I’ve got great and it’s really miraculous because it’s like pushing a reset button. So the mercury on the old-school kilometer was rising rising rising rising then all of a sudden when I’m done the Sabbath it’s back down it doesn’t pick up ar the too. Are some days where stuff just hast to get done and so I end up losing that weeks Sabbath but overall it has kept the temperature down grade but like I say unfortunately we are also different and none of our pearls of wisdom are generalizable which is really too bad

InHope your blood tests turn out perfectly (and you along with them)

 

[Andrew]

You didn't go "on and on" at all.

This was an exceptionally concise and unemotional statement of what you have going on in your body and in your life right now, and I am shocked and saddened that so much has been thrown your way at the same time. I *really* feel for you, Andrew.

Thank you for the reassurance. I tend to get down on myself at times. Your comment helped me refocus.

I declare one day a week my own personal Sabbath it’s not religious but it’s the same day each week and then that one day it really is my day of rest it doesn’t mean I do nothing but it means I have absolutely zero obligation to make any progress on any of the chores but I’ve got great and it’s really miraculous because it’s like pushing a reset button.

Sounds like a great idea.

 

[Andrew]

I've had some real improvement. I think it's from the augmentin I recently finished. But I have to let more time pass to see if this is just a temporary upswing versus something real.

I'm very grateful for all the help and attention you people have given me.

 

[Andrew]

I'm just dropping a note here. Things have gone backward since i last posted.
I get nauseous almost every time I eat. And sometimes when I don't eat. I don't vomit though.

I'm also feeling weaker and more lightheaded than ever. This is complicated by the fact that I have other medical conditions to follow up on.

I'm not giving up, but this is going to take time to sort out.

 

[Judee]

I get nauseous almost every time I eat. And sometimes when I don't eat. I don't vomit though.

Can you do candied ginger?* Also do you have any prescription medications for this? My Mom used to take small amounts of Zofran from time to time. Plus, have you identified certain foods that cause this at all?

*We used to always buy this brand: https://www.amazon.com/Reeds-Crystallized-Ginger-Candy-3-5/dp/B000WD5JCY/ref=sr_1_11_f3?keywords=candied+ginger&qid=1684121440&sr=8-11&th=1

(The crystalized ginger; NOT the ginger chews. The ginger chews are too hard to chew. )

 

[Andrew]

@Judee Do those hurt (sting) your mouth at all?. Sometimes ginger affect me like spicy food.

 

[Judee]

They might. Sometimes you'll get a spicy one.

I'm sorry.

 

[hapl808]

@Judee Do those hurt (sting) your mouth at all?. Sometimes ginger affect me like spicy food.

Some report that the dried ginger capsules (shouldn't be spicy at all) work better for nausea than fresh ginger, so that might be worth trying. I used to deal with nausea daily for many years - ginger, mint, fenugreek, xylitol gum, acupressure, intermittent fasting, and a bunch of other herbs and stuff worth trying. I'm not sure if your nausea is ME/CFS related or from cancer treatment? There are also medications like metoclopramide that I took for awhile, but they have their own side effects - I think usually rx'ed more for nausea from chemo, etc.

 

[Hufsamor]

I’m so sorry to hear that, Andrew.
It’s terrible to feel so nauseous.

This might help or might not, but it’s worth a try.
It has helped me a lot.
You use one or two fingers to press the point in the illustration.
In Norway you might buy wristbands at the pharmacy.
But if you try first, with your fingers only, you will know if it helps you enough to search for some to buy.
Its not expensive.

 

[Andrew]

FWIW, Ginger Snaps cookies help me, but if I keep them in the house I start snacking on them. I can't afford to gain more weight.

 

[Judee]

Zevia has a ginger ale but it's very strong and super fizzy. However, they also make a ginger root beer that you might like. They have another new kind of root beer though so you have to look for the one that says ginger root beer on it.

They have no calories because they're sugar free and sweetened with stevia rather than an artificial sweeteners. Also they don't contain sugar alcohols like mannitol which can also cause people digestive issues.

 

[Judee]

How are you doing, @Andrew?

 

[Andrew]

How are you doing, @Andrew?

It's all up and down. I've not posted here because it could be different in two days. For example, I got so weak I couldn't make it up all the way up the stairs to my apartment. I had to crawl the rest of the way up the stairs. But the next time I went up the stairs, I got all the way to the top. Although my legs were so rubbery when I got there, I could hardly walk. But today I did better. About two weeks ago I thought I was going to be dead in a few days and now I don't feel that way anymore. So I never know what it's going to be. But overall, I'm worse than I was before I went for that appointment. And I'm just trying to deal with it and solve it. My lung doctor wants to try reducing the Prednisone to see if that's causing the weakness.

 

[Judee]

It's all up and down. I've not posted here because it could be different in two days. For example, I got so weak I couldn't make it up all the way up the stairs to my apartment. I had to crawl the rest of the way up the stairs. But the next time I went up the stairs, I got all the way to the top. Although my legs were so rubbery when I got there, I could hardly walk. But today I did better. About two weeks ago I thought I was going to be dead in a few days and now I don't feel that way anymore. So I never know what it's going to be. But overall, I'm worse than I was before I went for that appointment. And I'm just trying to deal with it and solve it. My lung doctor wants to try reducing the Prednisone to see if that's causing the weakness.

Aww, no. I'm sorry @Andrew. Maybe it is the pred crashing you. Also I thought for awhile they had you on supplemental oxygen. What have your oxygen levels been? Is it possible you need to supplement again from time to time especially when exerting?

 

[Andrew]

I don't have an O2 problem like before. Before I was dropping down into the low eighties with my oximeter. Now I'm usually above 90. He wants to give me 02 anyway to give me an extra edge, but it's not going to fix the problem. Cutting prednisone might.

 

[Judee]

How are you doing, Andrew? Has the nausea improved?

 

[Andrew]

How are you doing, Andrew? Has the nausea improved?

It's all very frustrating. The nausea went away and a few weeks ago I started feeling much better. Much stronger. I thought I was on a good path. And then in a single day, my body crashed. Actually in a single hour. It was the weirdest thing. I wasn't doing anything special. Just sitting on my couch. Started to feel nauseous. I got a headache. I started to feel weak. And now I am the weakest I've ever been. Sometimes I'm too exhausted to talk. I'm too exhausted to try to problem solve this. At least for right now. I'm focusing right now on keeping up with my other illnesses and getting the testing etcetera that I need.

I wish I had better news, but this is an awful illness.