I'm not dead yet!

In the immortal words of Monty Python see above, but not good news either.

Just an update, today learned the cancer has spread. Going to be changing to a much more expensive form of Chemo (oral) that insurance either immediately approves, or you have to fight them on, so I am expecting the latter (hey, why would my life be easy, LOL).
It is still small, but a mutation has/is making it more aggressive. At this point, while I am dealing with the restaurant, having Tim's executor try to get me to do their responsibilities for his estate, pre him dying, and all the other life stuff, I need to get very serious about my estate. As if it doesn't work, or there is major delay's, it could be an issue (in lung now).

Sorry, not the happy stuff, everyone was wanting to hear, but I at least still get to flirt with all my nurses, without being accused of stalking.:laff:

And away we go......................

Oh my, not good news at all.

I do so wish you could have time away from all of your other responsibilities (restaurant management, estate issues for others) to focus on health treatments.

you know, you do not have to negotiate that guy’s estate work. “No” is a complete sentence.

Keep fighting the good fight, TMS, praying for you and glad you are still here.

TMS.. So sorry to hear this! Sad for you to have to deal with all the bs now. Prayers and thoughts your way!

F*ck cancer. Good thoughts your way.

Best wishes. That's a lot to deal with!

Ditto what Tradd said.

I hope the new regimen gives you a good outcome.

So sorry to hear about this. But keep flirting with the nurses! My dad, a few days before he passed, got a sponge bath from the hospice volunteer. After she'd finished he said (barely audible) "I feel like a million bucks. Thank you." As crappy as he must have felt he made her day. I can only hope to be so thoughtful of others at that point in my life. In any case, I'm sorry to hear this news and am wishing you the best. My thoughts are with you.

I'm really sorry for your bad news, TMS. I hope the new chemo regimen works well to turn things around for you.

Ditto what everyone else has said. Hugs and prayers to you. Sending positive thoughts and energies, and hopes that the new treatment has a more positive outcome.

good luck w/the new chemo and all the rest of it. And ditto for all good wishes and hugs, you're very much in my thoughts.

Sending positive thoughts and wishes to you.

I'm so sorry *hugs*

Best wishes!

Well, had a severe and negative reaction to my first infusion with this round. I think I would have preferred Anaphylaxis, at least it would have been an immediate reaction.
Scabs developed and exploded over my face, head, down my trunk, stopping just shy of the belly button. Some internal to nose and felt like throat. Not sure what is going to happen tomorrow, or if it is time for the EOL, quality of life discussion.
Also a mess up with my meds, as they weren't marked for the dosage, so I was at least taking less, not too much. Then a call Friday, which makes me think either the meds were not approved, or the left hand has no clue what the right hand is doing.

Now I wish I had let the cats go to Kelly Clarkson, as that was the direction they were headed. B-i-l had a severe allergic reaction, which means I may have to find another home for them. I may not have a lot of time to do that.
Then there are strong financial issues that I expect I may face as soon as tomorrow (continue on, or have some kind of estate to leave behind to help the next generation), as even if I started winning again, it doesn't mean this won't spread to a more fatal section.
This is a winding road, just not sure how long.

I am so sorry to hear this TMS. That is a really awful reaction to the infusion.

That sounds just awful TMS. I hope it settles down very soon..

I'm sorry you are having such a bad time with this. I hope they are able to come up with a better care plan.

Oh my. Sorry to hear you’re having such issues.

I am so sorry, TMS! Those are hard decisions you have to make. I hope they can get you out of the discomfort caused by this chemo treatment fast.

I echo what everyone else is saying, TMS. Please know you are in my thoughts and prayers.

Oh, gosh, I hope they find either an alternative treatment, or some way to mitigate those horrible effects!! Thank you for keeping us updated--we truly care.

You're in my thoughts, TMS. Hoping for the best possible outcomes for you. Appreciate the updates also.

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Originally Posted by early morning

You're in my thoughts, TMS. Hoping for the best possible outcomes for you. Appreciate the updates also.

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The same…

So Friday, Dr's office called me. Somehow I had gone from approved, to unapproved. This made zero sense as they were not going to start this round unless approved, stated in front of three witnesses.
So the process of figuring out what the heck started Friday. Treatment cancelled for Monday, they called and started trying to figure out on the Dr's end what happened. By the time Monday was done, I was expecting maybe this was the time for the EOL/QOL discussion, as maybe it had to do with my negative reaction, since nothing they were saying was making sense.

When it was all said and done, my retired surgical nurse Mom, was involved, Insurance caseworker, insurance pharmacy, Dr's Pharmacy, infusion scheduler, nurse practitioner, and a couple others. By the time I got a call, knowing what was needed, the office was closed for the day. Mom was going to call her back today, because a piece of paper at the insurance pharmacy, is missing from the Dr's pharmacy. So that has to get transferred then, I have to get rescheduled, and find out if I can even get this infusion again, due to my reaction.
At this point I am ready for the EOL/QOL discussion, as I hate being a burden.

I'm sorry you have to go through something so difficult. You are in my thoughts; I hope you have a better day today.

Sending peaceful thoughts ToomuchStuff. I am so sorry this is happening

I'm sure your loved ones don't see you as a burden, TMS. People want to return the love that has been received.


My daughter is just starting her cancer journey, as you know, and she literally asked my advice yesterday, as I was sitting with her while she was waiting to undergo another biopsy, "If you needed help, how would you ask for it? And why do people give help?" She doesn't want to be a burden either. The idea of someone wanting to help her was mystifying. We are so attuned to being independent that it is difficult to ask for and receive help, even though it gives as much to the giver as to the recipient. When she asked her brother for help this past weekend, he literally dropped everything he was doing and dashed to her aid because all he wanted to do was to help her. As her mother, everything I can do to help her--watching the baby, taking her to chemo--makes me happy because I love her. In your case, look at all the burdens you've lifted from family, friends and coworkers for a very long time.

I hope you get those approvals and get on a treatment that's best for you.

we should all be having end of life/quality of life discussions throughout our life anyway.

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Originally Posted by catherine

"If you needed help, how would you ask for it? And why do people give help?" She doesn't want to be a burden either. The idea of someone wanting to help her was mystifying. We are so attuned to being independent that it is difficult to ask for and receive help, even though it gives as much to the giver as to the recipient.

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When you actually need help, it isn't difficult to ask, it is more difficult to know WHO to ask. In my case, a lot of the help I have actually had to ask for, was something like changing a delivery date or scheduling a delivery for the day's off of Chemo. (needing to be in the shop first thing in the morning, before others are even out of bed)
Some help is needed because I don't have the terminology/language needed. (legalese or medicalese), where a former nurse, or IRS agents, that I know/related to, are able to help, translate for me.
Same with straightening out our licensing issues ("ti" lazy, always got by with stuff), as the Federal agent that came to see us, worked with another relative and had heard all the junk I had to deal with, and helped.
I grew up with a background of "you don't deserve help, you should be grateful when you get it, when given at the same time, being expected to always provide help, when/where needed". So I very much understand the independent thing.
And there ARE times when someone THINKS they are providing help, that they are actually hindering. Examples in my case are my family coming over to "clean and organize", which involved changing where I put things from utensils, to kitchen items that also double as medical supplies. (food service film)
Three different employees, deciding they are going to do the scheduling, and one employee, just doing his own.
Taking bills, OFF of my desk and deciding there is a "better place" for them. I could probably come up with a few more, but this raises my blood pressure enough.

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Originally Posted by ToomuchStuff

And there ARE times when someone THINKS they are providing help, that they are actually hindering. Examples in my case are my family coming over to "clean and organize", which involved changing where I put things from utensils, to kitchen items that also double as medical supplies. (food service film)
Three different employees, deciding they are going to do the scheduling, and one employee, just doing his own.
Taking bills, OFF of my desk and deciding there is a "better place" for them. I could probably come up with a few more, but this raises my blood pressure enough.

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I try to be very aware of NOT providing unsolicited help. I'm a big researcher, and I raised her to be as well, but I resist the impulse to tell her about articles I've read or great websites. First of all, she's probably already read what she needs to read for herself, and second, I don't want to impose useless information on her or any info that might come across as well-meaning but unwanted advice.

Of course, when you're a mother trying to help a child, that line between helping in a good way vs the bad ways you mentioned is fraught with land mines. So I just stiick to asking her if she needs help, providing my availability schedule-wise, and letting her decide if and when she needs me. And trying to listen more than talk.