So they left for Houston today. Passover was canceled, then switched, then canceled, then I got asked to "throw together a seder meal" for Saturday, then it was downsized. Making decisions is a hard thing to do when you're worried you're dying of cancer. But they left today. Even though I'm worried, I'm also kind of relieved to be honest. It's just been so high-stress all week.
Apparently Laurie got stuck with some shitty doctors, and today Josh spent an hour trying to explain to me why it might not be cancer at all. I can't tell if he honestly thinks this or is just trying to convince himself. This is what I have pieced together from the last week:
- Laurie started coughing and couldn't stop so when she ran into a pediatric PA friend of hers, she mentioned it to that woman, who (rightly) said, "Sounds like something you should see a real doctor about
- Laurie saw a real doctor who did a PET scan, pointed out a bunch of black masses, and announced cancer (I am a little confused about this - if I couldn't stop coughing I would expect an X-ray of my lungs to happen, but whatever.)
- She went then to an oncologist (who Josh referred to as The Oncology Bitch) who told Laurie, "Yeah, that's cancer. Anything over 10 millimeters (maybe a different size-word, I forget) is cancer. This black mass is 4.6, this mass is 7, this mass is 3.5... and this is the protocol for cancer treatment. Case closed." When they asked her why she was saying it's cancer if she's saying anything 10 is cancer but each mass is under 10, she wouldn't answer.
- This is the point when I got told what was going on, and Josh made a slew of calls to get his mom an appointment with someone else local, plus at Anderson. It turns out that guy did his residency at Anderson and late last week when Laurie met with him, he suggested doing some tests but he was going on vacation and could meet with her to discuss the results two days after they come in, which would take a few days after the tests. So when he heard she got an appointment in Houston, he told her to just go there.
Apparently at the Houston hospital, they can get results in minutes or hours instead of days. And any care, whatever she needs, can be done there. Plus the last local doctor here said that if she can get her treatment, whatever it may be, in NY, he has experience coordinating with them.
So it seems like priorities have shifted dramatically. Obviously cooking in my kitchen was not kosher. They didn't care about using different dishes or anything. Nobody cared. I gave Josh two packages of Passover food that would travel well, and the name of a kosher deli in Houston. Right now they are planning to come home on Friday, but that's tentative. Josh is hoping the masses are benign and can be taken out with tiny needles (he called it something else) that would leave tiny scars.
It's good that we had last week to process and talk Laurie out of working with the bitchy oncologist. It gave us time to shift her thinking. Where it used to be a mindset of "I'm going to die soon," it's now more like "We're going to find out exactly what the hell is going on and then treat it and kick its ass, and I have now aligned myself with kind, knowledgable doctors I trust and will follow their protocol to the letter in order to get better." I am glad we had a week with Laurie - I feel like we sent her to Houston in a great mindset and much less hysterical. She was basically making me feel hysterical when she first told us.
It's good that we had last week to process and talk Laurie out of working with the bitchy oncologist. It gave us time to shift her thinking. Where it used to be a mindset of "I'm going to die soon," it's now more like "We're going to find out exactly what the hell is going on and then treat it and kick its ass, and I have now aligned myself with kind, knowledgable doctors I trust and will follow their protocol to the letter in order to get better." I am glad we had a week with Laurie - I feel like we sent her to Houston in a great mindset and much less hysterical. She was basically making me feel hysterical when she first told us.
5 comments:
I'm offering my help again to Laurie for a Passover friendly place here in Houston. We live very close to MD Anderson. We are keeping Passover and plan to have dinner at home every night this week - Josh's parents are welcome to join us. My dad will be at MD Anderson tomorrow doing his chaplaincy thing - he only sees Jewish outpatients so I will tell him to keep his eye out for Laurie.
I have no idea what you found for "kosher deli" here in Houston, but there are a couple of grocery stores that will have kosher for Passover food, and certainly there is home hospitality if she wants to contact a local synagogue.
Thank you! I will let Josh know. Kenny & Ziggys was the kosher deli I found them?
Kenny & Ziggy's is "kosher style." If kashrut is important to them it won't work.
My dad says if Laurie identifies herself as Jewish on her intake forms, he will get her name on his list. He knows to look out for someone named "Laurie." He visits MD Anderson on Wednesday mornings. Send me a note if you want to share more info.
It makes sense that you are relieved they left. It's probably less that they are away and therefore not causing you as much stress and more that there is now a plan and everyone has a better mindset.
"Laurie saw a real doctor who did a PET scan, pointed out a bunch of black masses, and announced cancer (I am a little confused about this - if I couldn't stop coughing I would expect an X-ray of my lungs to happen, but whatever.)"
"She went then to an oncologist (who Josh referred to as The Oncology Bitch) who told Laurie, "Yeah, that's cancer. Anything over 10 millimeters (maybe a different size-word, I forget) is cancer. This black mass is 4.6, this mass is 7, this mass is 3.5... and this is the protocol for cancer treatment. Case closed." When they asked her why she was saying it's cancer if she's saying anything 10 is cancer but each mass is under 10, she wouldn't answer."
This is indeed confusing. Like, how did things progress from finding problems in the lungs to finding masses also in the intestines and ovaries? How was it diagnosed as cancer and as ovarian cancer without any biopsies?
It sounds like it was a mess. It stinks that a tough situation was made worse by thoughtless practitioners.
Isn't Doug Laurie's regular doctor?
So glad Laurie ended up with a good local doctor who helped develop a sensible, timely plan.
So now we understand how the decision to go to Houston was made. The option to do treatment at home coordinated with Anderson is good.
"Josh is hoping the masses are benign and can be taken out with tiny needles (he called it something else) that would leave tiny scars."
Laparoscopically?
So glad that everyone's mindset is better with this reframed focus.
Good for you for taking up Karen on her offers of assistance. I am sure she and her family will keep your confidences. However much or little they would be observing Passover otherwise, it will no doubt be a comfort for both of Josh's parents and for Josh to connect with and feel cared for by people other than the medical professionals, friendly people who are offering a familiar, familial connection, while they are in unfamiliar territory during this upsetting time.
Sometimes all the signs point to finding a better solution, which this seems to be the case here. Kudos to Josh as a son for stepping in, and up, to help his Mom. This is why they always say you need someone else to go with you to the important doctor visits. They are thinking more clearly, listening better, and creating a plan of action while the patients brains can only hear CANCER.
You are a person of action yourself, so I'm sure you are relieved action is being taken. I've never heard a bad word about MD Anderson and their humane treatment of, well, Humans!
Also, once again Josh is showing your sisters how high the bar needs to be set for their own partners!!
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