My leukemia's back.

[getaclue]

Blooie, what did the MRI show? Has she consulted with her oncologist? I'm hearing what her surgeon is saying, but not much on what her oncologist is saying. Ideally, both her surgeon, and oncologist should be working together on this.

Only consulting a surgeon, in this situation, is not necessarily the best course of action. Why? The old adage, the hammer sees everything as a nail, is true in this type situation. This type cancer is in the cells. When there is enough cancer in enough cells, they tend to cluster, and form a lump. Simply removing the lump does not treat the cells, which are what causes this type cancer. I suspect the surgeon scheduled the surgery that far out, so they can tell how fast this cancer is, and if there will be a change from the pre-cancerous cells, to cancer cells.

If there was not an abnormality showing in the lymph, waiting for change, and surgery first, would be the best option. In this case, there are abnormalities in the lymph, even though it's not yet full blown cancer. As often as not, chemo can kill the abnormal cells, preventing them from going any further. Killing abnormal cells, before they spread has the potential of stopping the papillomas in their tracks, so they don't progress any further, and/or change into cancerous cells.

While the BRCA1 and 2 testing may, or may not be somewhat useful tools, at this stage of things, they are not imperative for them to continue with her treatment plan. Since Terri was successfully treated, a better option would be to ask Terri what treatment they used on her, OR sign the form so Diane's doctor can get copies of the records of her treatment plan, OR if the doctor has not kept the records all these years, to ask Terri to ask whatever insurance company she used at the time, whether private insurance, or medicaid, to review what they paid for. I actually had to defer to contacting my insurance company to get some of the records regarding the first time I was treated, because it had been so long, the doctors had not kept the files. They seem to keep records of what they pay for, forever.

While I am not telling you what to do, by any means, I am trying to offer helpful suggestions. You may totally disregard them, or use anything you think might be of value.

 

[Blooie]

Little Diane has a full team….her OB, her oncologist, her surgeon, and her facilitator. Of course I’m not there, so I’m not privy to every appointment and every discussion - I know only what she tells me and I’m sure huge chunks of their findings and conversations are left out when she shares information.

As for Terri, we have to totally write her out of the equation. She’s disowned me and her dad in no uncertain terms and has every avenue of contacting her blocked. That’s fine, I don’t need the toxicity. She’s not gonna tell anyone anything. She’s done nothing but tell Diane to quit whining, to suck it up, that she got no help from Ken and me (totally untrue), call her obscene names, and get her so hurt and upset she couldn’t stop crying when she was telling me how the conversations went. She literally told Diane she wasn’t telling her a gd thing..told her to figure it out on her own like she had to. She also dumped on Diane because she said “Where were you when I needed you?” DIane reminded her that she went to stay with her, helped her change dressings and even wiped her hiney because Terri couldn’t do that herself. Terri said, “Big deal…you did a couple of things.“ DIane also had to remind her that she was only 10 years old at the time!

I’m sure Diane’s doctors could get the information from Terri’s, but she refused to sign any releases and won’t even tell them the name of the oncologist. So another dead end. She didn’t have insurance when she had her hysterectomy followed by her double mastectomy 9 or so years later. I doubt if there was even readily available genetic testing available back then, and if there was, with no insurance she probably didn’t (or couldn’t) get it done. So there will be absolutely no help from that wonderful “mother”. Sad, isn’t it?

 

[Alaskan]

Little Diane has a full team….her OB, her oncologist, her surgeon, and her facilitator. Of course I’m not there, so I’m not privy to every appointment and every discussion - I know only what she tells me and I’m sure huge chunks of their findings and conversations are left out when she shares information.

As for Terri, we have to totally write her out of the equation. She’s disowned me and her dad in no uncertain terms and has every avenue of contacting her blocked. That’s fine, I don’t need the toxicity. She’s not gonna tell anyone anything. She’s done nothing but tell Diane to quit whining, to suck it up, that she got no help from Ken and me (totally untrue), call her obscene names, and get her so hurt and upset she couldn’t stop crying when she was telling me how the conversations went. She literally told Diane she wasn’t telling her a gd thing..told her to figure it out on her own like she had to. She also dumped on Diane because she said “Where were you when I needed you?” DIane reminded her that she went to stay with her, helped her change dressings and even wiped her hiney because Terri couldn’t do that herself. Terri said, “Big deal…you did a couple of things.“ DIane also had to remind her that she was only 10 years old at the time!

I’m sure Diane’s doctors could get the information from Terri’s, but she refused to sign any releases and won’t even tell them the name of the oncologist. So another dead end. She didn’t have insurance when she had her hysterectomy followed by her double mastectomy 9 or so years later. I doubt if there was even readily available genetic testing available back then, and if there was, with no insurance she probably didn’t (or couldn’t) get it done. So there will be absolutely no help from that wonderful “mother”. Sad, isn’t it?

Sigh

 

[getaclue]

Glad to know she's got a team, and it sounds like they're doing a good job. It's a shame about her mother, but it is what it is. Don't fret, the genetic testing is not critical, as I said before. It may (or sometimes not) be somewhat helpful, but it's not critical for them to have, and her treatment should not be delayed for lack of it.

Maybe it's a good thing for all of you to write Terri off, and close the door. Yes, it's sad, but like you said, she's toxic, and nobody needs that. Especially now.

You are not alone in having a toxic child. I too have one. I disowned her quite some time ago. I am better off without her, and her toxicity in my life, and my husband's life. Only one of her sisters will have anything to do with her. Don't think that's any reflection on you, or the way you raised her.

 

[Blooie]

Thanks! This is why we took full custody of Little Diane and Jamie when she was 6 and he was 11. Of course, we’d had him on and off since he was 2. Up until we were awarded full custody, those two little ones were constantly being abandoned with us.

When Terrin was 14, her psychologist at the time advised us to make her a ward of the state so that we could get on with rebuilding our own lives. We just couldn’t do that to her. You don’t unload a child because they get diabetes, or cancer, or Spina Bifida…..she was no less fragile than those children are. We know there was nothing we could have differently, so we focus on the kids we do have, the grandkids, and the greats. Right now we’re all focused on Little Diane and that’s as it should be. Terrin could have eased her daughter’s burden so well, having been there herself, instead of adding to it. That she chose not to do that reflects on her, not on the rest of us.

 

[Blooie]

Gonna do a quick update on Little Diane, not that there’s much to update. Surgery is scheduled for Monday but I don’t know what time. At this point they’re looking at a bilateral lumpectomy, but as usual they caution that that could change, “depending”. I hate that word. Anyway her oncologist has told her that he didn’t think she had anything more extreme to worry about, which is very hopeful.

Her spirits remain irrepressibly Little Diane….positive, upbeat, and reassuring. That’s pretty much my mindset, too. I’ll worry, of course, but I’m not stressing….too much.

 

[N F C]

Gonna do a quick update on Little Diane, not that there’s much to update. Surgery is scheduled for Monday but I don’t know what time. At this point they’re looking at a bilateral lumpectomy, but as usual they caution that that could change, “depending”. I hate that word. Anyway her oncologist has told her that he didn’t think she had anything more extreme to worry about, which is very hopeful.

Her spirits remain irrepressibly Little Diane….positive, upbeat, and reassuring. That’s pretty much my mindset, too. I’ll worry, of course, but I’m not stressing….too much.
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Keeping Little Diane (and the rest of you) in my prayers Blooie

 

[Blooie]

Thank you, Debby. Ain’t she a purty little thing?

 

[sourland]

Thank you, Debby. Ain’t she a purty little thing?

She's gorgeous.

 

[Cynthia12]

Gonna do a quick update on Little Diane, not that there’s much to update. Surgery is scheduled for Monday but I don’t know what time. At this point they’re looking at a bilateral lumpectomy, but as usual they caution that that could change, “depending”. I hate that word. Anyway her oncologist has told her that he didn’t think she had anything more extreme to worry about, which is very hopeful.

Her spirits remain irrepressibly Little Diane….positive, upbeat, and reassuring. That’s pretty much my mindset, too. I’ll worry, of course, but I’m not stressing….too much.
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Been reading up on this. Just seeing it. She's beautiful. Prayers that everything goes well. My daughter in law that lives here, found out her mother has breast cancer. She's going in next week for surgery also, then just some radiation treatments. They found out they need to take more of her breast than originally thought, so a plastic surgeon will be in the operating room also to do repair. Hopefully they found Diane's cancer soon enough. They think they did for Bronwyn's mother.