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shrinkykitten

"...another reason I'm intrigued with the hanged of Salem, especially the women, is that a number of them aroused suspicion in the first place because they were financially independent, or sharp-tongued, or kept to themselves. In other words, they were killed off for the same sort of life I live right now but with longer skirts and fewer cable channels." Sarah Vowell, The partly cloudy patriot.

9.07.2008

Stupid cancer centers of america

Those commercials really chap my hide - they did before someone in my family got cancer, and they do even more now that my grandpa has pancreatic cancer. I just hate the tone and the stories and the miracles promised. When I see them, I feel like I understand munchausen's (where you fake a disease for attention/caring) - they make it seem like it would be so nice for those who are absent any kind of care in their lives to get to have the kind of care and concern promised there.

Anyway - they piss me off because the care my grandpa has gotten - at one of the top hospitals in the US - has been crap.

When we first went with him to get his biopsy - I was impressed. The staff was kind and funny with him - flirty in the way that is only appropriate with a 91-year-old patient. They listened to him, helped him, listened to us - it was good care, and I felt like he was in good hands.

The doctor who did his biopsy (a gastroenterologist) acted like my grandpa was a rockstar as he had heard from the other doctors what my grandpa did for a living (let's just say he helped put man on the moon) and was awestruck. That was nice.

After that, he met with the oncologist. I wanted to go to that appointment, but there were too many people going already. It's too bad because I am used to talking with doctors at this point and also have more medical knowledge than anyone in the family at this point too (due to current job, mostly). Plus, I remember things.

The oncologist decided that he wanted to try to excise my grandpa's cancer, and to do that, he'd have to have chemo and radiation. No one in my family thought this was a good idea - my grandpa was not doing well (he collapsed twice after the biopsy, and lost bowel and bladder control during one of those episodes). As healthy as he was/is - we knew he couldn't take the chemo and radiation. We'd all seen the decline in his stamina and strength - and his will to live - whereas the oncologist just saw a healthy 91-year-old.

He began chemo and radiation 2 weeks ago (seems so much longer ago), and that same night, he had a stroke. He's had many since then - and lost control over this left side and lost sight in his left eye. He sobs now at night, and says he can't take any more of this.

He had the treatment because he believed the doctor - he believed it would prolong his life (with negligible effects on quality of life) and that there was a chance he could beat it. The doctor downplayed any potential side effects, and downplayed any kinds of risks.

The doctor also didn't do a good job of screening my grandpa. Apparently my grandpa's case was to go before a tumor board in which a panel of docs weighs in on whether or not to pursue treatment, and if so, what kind. I don't know if this occurred - but if so - I want to ask what the hell they were thinking.

His treatment was part of a clinical trial - which can be the best chance at survival for some kinds of cancers. You'd think though they'd be more cautious about who they put in the trial, given that they really want to show survival and no adverse events. But I don't know if they screened him at all.

After he began having strokes, I did some research and found not only is this particular chemo drug associated with strokes post-chemo, anyone with a history of strokes should be ruled out.

I had had suspicions that my grandpa might have been having strokes because his speech was at times slurred. I asked my mom to please ask the oncologist about it, but I don't think she did. I think he had strokes before the chemo, and that the chemo made them much worse. And here's the crux - from what I can tell, anyone with a history of strokes should NOT get this kind of chemo. A history of strokes is an exclusion criteria for some of these clinical trials, and my grandpa's cat scan showed he had had them in the past.

Now that he can no longer continue the chemo, the oncologist is pretty much having nothing to do with him (and denies that the strokes could at all be related to the chemo). The palliative care he was promised hasn't come through. It's almost like his only value to them was in being a success story in a clinical trial.

I realize that doctors are under multiple constraints and stressors - and that they have a variety of competing pressures - but why does patient care need to come at the end of the priority list?

2 Comments:

At 8:43 AM, Anonymous New Kid on the Hallway said...

Ugh. That so sucks - I'm so sorry.

 
At 6:29 PM, Blogger kathy a. said...

oh, shrinkykitty. i am so sorry. very glad you are there advocating for your grandfather, and loving him while you can.

this sounds a lot like my frustrations when my dad had cancer [he died 5 years ago] and when my mom had a major stroke [she died late july].

i was so furious with dad's oncologist, who kept pushing one experimental chemo after another -- i'm sure that the last one pushed dad into respiratory failure, and he died in ICU instead of a more comfortable place. that doctor was a no-show for an appointment we had with him; dad had slipped into a coma overnight, and i guess he couldn't be bothered to talk to the family. jerk.

had a big problem with mom's primary physician, also, who just didn't want to be bothered with concerns we had. thankfully, there was a great palliative care team that kicked in during mom's second hospitalization, once it was clear she had medical problems that could not be overcome.

is it possible to contact palliative care folks yourself?

xoxoxo

 

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