Not that anyone is asking

I got a call from Bonnie about an hour ago. She called Grant (my son) a little before that. When she called me, she said she was very touched that Grant cried about her diagnosis.

Grant cried? I mean, sure, he cares about his aunt and he isn't a cold-hearted barstard, but the crying thing is totally out of character for him. So I called him after I talked to Bonnie.

"Didn't happen," he said. "Quite the opposite, she cried through the whole call; I tried to calm her down."

Bonnie's friend text me yesterday and said Bonnie doesn't make sense most of the time. "Like her mouth and her mind aren't connected," she said. "It's scary."

Well, you know, when you've got a tumor the size of a thumb in your brain....could cause some problems.

This friend, Misty, is staying at Bonnie's place to take care of her. They've known each other for decades, but I'm not comfortable with this because they also did drugs together for decades. So, for one thing, Misty is a total airhead, brain-fried from years of drug use, and for another, maybe she still uses now and then, I have no idea. She totally gives off junkie vibes. Even if she isn't still using, maybe they'll both get back into it, just to cope, you know?

Other than the thing about Grant crying, Bonnie was pretty lucid during our call so I told her to tell her doctor next time she sees him/her to name me as her main contact regarding medical stuff, like updates, admissions, treatments, instructions, or if they have any questions, I want them to contact me. I'm sure the hosp staff wasn't impressed with Misty.

Bonnie said she'd do that, but I can't trust it, so next time she's admitted to the hospital for any reason, I'm going there to talk to a social worker or charge nurse...whoever I need to talk to about being a 1st contact and THE person to rely on for accurate info and to make sure Bonnie does what she's supposed to do. I don't need to make medical decisions, unless she can't, I just want to make sure everything goes according to the doctor's instructions.

Reasons I can't move Bonnie back in here: 1) her boyfriend and Misty (both airheads) would be over here all the time, 2) Bonnie would lose her apartment, and 3) it would drive us out of our minds. I have to look out for me & Meesh.


An MRI showed a mass in Bonnie's lung yesterday. They did a biopsy, but results aren't available yet. 🥺
 
Pepper said:
Very sorry to hear this news about Bonnie. I don't cope well lately, especially dealing with most things on my own, so I really feel for her and am hoping for the best for your sister.
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I hope everything going on around you is set to right, too, Peps.

Sending Love and Best Wishes your way ...about all we can do with an entire giant continent between us, right? ..x
 
I hate to say this, Frank, but it doesn't sound good for Bonnie at all. Right now, pray a lot.

Definitely get to any hospital she may be in and speak to the people in Admissions or the head nurse to direct you to the right individual to name you as her medical advisor. She certainly needs someone who can shoulder some responsibility here.
 
Lewkat said:
I hate to say this, Frank, but it doesn't sound good for Bonnie at all. Right now, pray a lot.

Definitely get to any hospital she may be in and speak to the people in Admissions or the head nurse to direct you to the right individual to name you as her medical advisor. She certainly needs someone who can shoulder some responsibility here.
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Yeah, she called again today. She doesn't remember calling me yesterday, doesn't remember what the doctor told her, and she couldn't say the word cancer but she could spell it. So, very apparent cognitive issues.

Fortunately, her boyfriend got on the phone. He's taking her to an appointment today and he said he'd make sure the doctor's office has me down as a priority contact person.

I have an abscessed tooth right now (!excruciating!), and the infection has reached my airway, so I gotta wait til this clears up before I go around her or go traipsing off to her doctor's office. I'm on a powerful antibiotic, so a few more days.
 
Bonnie's boyfriend (Bob) brought her here to visit Saturday. She brought a CD with all the MRIs and scans, and sonograms they've done, and a dozen or so pages of the interpretations and findings. None of our devices could get the CD to play, but I read the reports to her. She can read but she isn't familiar with the terms they use in these reports, and only knows basic anatomy.

So anyway, now she knows exactly where all the tumors are and how big they are - 2 small ones in her brain, a large one in the lower lobe of her left lung and a smaller one just above it. The smaller one's enmeshed with some of the lung tissue and a blood vein.

And I told her the report verified the cancer originated in her lung and it's what's known as small-cell cancer. Also, when she said a nurse was rude to her, I told her to start telling those kind of people "I'm not stupid, I have brain cancer!"

She loved that; said she's going to put it on a t-shirt. :p

What I did not tell her is that small-cell lung-to-brain cancer is more likely to spread to the bones and liver than the non-small-cell type, the average survival rate of lung-to-brain patients is 12 months after diagnosis, and only 3.5% of small-cell lung-to-brain cancer patients manage to live for 5 years after diagnosis. That's with aggressive treatment and major diet changes....which, according to some patients, drastically reduces their quality of life.

This afternoon Bonnie's lady friend took her to an appointment w/the primary oncologist. I assume they discussed a treatment plan, or at least the next-steps. Hopefully Bonnie will call tonight to tell me all about it.

This is the office where she said she'll give my name and number as the family member with whom they can openly discuss her condition, treatment, instructions, etc.
 
It seems to me that you are well know that the outcome is very bad. This is the point where you and the family make the decision to tell her the truth of her condition. She may very well not have a long time. You know her best, were there things she wanted to see or do in her lifetime.

Although we were told there was no hope, my husband was not inclined to believe the horrible information we were given. They told him about 8 months to a year. We went the through traditional chemo even though they said it would not work. We then went to clinical trials, and they did slow progression without the horrible side effects. He did live 5 years and was only really sick for the last 3 months. The thing that got him were a pulmonary embolism and a brain bleed when he fell in the kitchen hitting the tile floor.

I think the best thing is to tell her the truth, at the doctor so he can answer her questions on the options. It is important to let her digest the information and decide what she wants to do. She may decide to fight while doing things she has also wanted to do. Visit special places, spend time with people that mean a lot to her when she is well enough to do so.

My husband was very blessed to have a lifetime friend that was more than happy to travel with him while I could be home taking care of our son. I never said no to anything he wanted to do. For the most part, he wanted to keep working which was a big part of his identity as a man. My job was to take care of him and his medical needs.

His major clinical trial was in Scottsdale AZ, I was in charge of all travel plans, flights, hotels, car rentals and oxygen set up at the hotel. The clinical trial paid for all of this and all our meals. We were truly blessed by these people. You never know what is available until you look. I would refer you to the NIH which is where I found the trial. I would be happy to lend any assistance if Bonnie decides she would like to try.
 
Blessed said:
It seems to me that you are well know that the outcome is very bad. This is the point where you and the family make the decision to tell her the truth of her condition. She may very well not have a long time. You know her best, were there things she wanted to see or do in her lifetime.

Although we were told there was no hope, my husband was not inclined to believe the horrible information we were given. They told him about 8 months to a year. We went the through traditional chemo even though they said it would not work. We then went to clinical trials, and they did slow progression without the horrible side effects. He did live 5 years and was only really sick for the last 3 months. The thing that got him were a pulmonary embolism and a brain bleed when he fell in the kitchen hitting the tile floor.

I think the best thing is to tell her the truth, at the doctor so he can answer her questions on the options. It is important to let her digest the information and decide what she wants to do. She may decide to fight while doing things she has also wanted to do. Visit special places, spend time with people that mean a lot to her when she is well enough to do so.

My husband was very blessed to have a lifetime friend that was more than happy to travel with him while I could be home taking care of our son. I never said no to anything he wanted to do. For the most part, he wanted to keep working which was a big part of his identity as a man. My job was to take care of him and his medical needs.

His major clinical trial was in Scottsdale AZ, I was in charge of all travel plans, flights, hotels, car rentals and oxygen set up at the hotel. The clinical trial paid for all of this and all our meals. We were truly blessed by these people. You never know what is available until you look. I would refer you to the NIH which is where I found the trial. I would be happy to lend any assistance if Bonnie decides she would like to try.
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"I would be happy to lend any assistance if Bonnie decides she would like to try."

Thank you, Blessed. That's very sweet of you. I'll suggest she ask her doctor if there are any trials she can volunteer for.

I'm gonna leave it up to her doctor to explain the gravity of her condition or not.

If he doesn't, I won't. Naturally, I know Bonnie extremely well. She doesn't cope well with everyday challenges. She would fall apart. She would not only be inclined to believe the worst, she'd convince herself the doc is holding back and it's even worse than the worst it could possibly be. She'd be too focused on dying to appreciate, use, or enjoy the life she has left. She'd lose sleep, get migraines, and probably eat nothing but sugary crap. Worst of all, there's a good chance she'd go back to doing drugs.

If the doctor does tell her, I'll have all that to contend with. So wish me luck, hon....because he just met her today, so unless he's an excellent judge of character, he'll probably explain everything to her.

Bonnie talked to me on Saturday about things she wants to do IF she's told it's untreatable, or given months to live. (I know that sounds like coping, but it was a front.) She just talked about wanting to write letters to my kids, telling them how great they are and how much they meant to our dad (their grampa), and so forth. That will be a nice distraction, I guess, if she doesn't dwell on it for too long. Michelle talked to her about taking a trip up to our cabin, and I told her she can use it anytime she wants, and her boyfriend, too. She loved that.
 
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I hope the doctor does tell her the truth. We all deserve to know what is going to happen and make the decision for our futures. If she decides not to fight, that is okay, just let her spend her days as she days as she desires.

If I was in her position, I would prefer the seaside, catching crabs for dinner, watching the sunset and the sunrise. Walking along the beach seeing the baby stingrays. Seems strange but I would not fight it after seeing all my husband went through. I would just shut down life as I know it and live the things I always dreamed about. I would even give up two of my dogs so the little girl could come with me for the adventure. I know that sounds weird, but she came to me as a puppy when my husband passed,
 
Jules said:
Frank, you have had so many issues lately. Thankfully you have Meesh and Grant and other family to support you.
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Meesh is SO good to me. She wants to take care of me. Not like a built-in nurse or maid or whatever, but like in a bunch of little ways - make my tea for me, bring me some socks or a lap-blanket, massage my hands...that kind of stuff. That's all totally new to me. Took some getting used to, honestly.
 


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