I know Joce has chemo on Mondays but I don't know when her off days are. I know I see Joce, Eric or both at swim with the boys at the pool so I know I'll get the update then. And mostly, it's been all pretty good. Or at least, if not "good", then not exactly "bad". So that's sort of what I expect.
I admit, I'm a little naive when it comes to cancer. I don't immediately expect all bad news. I'm not neurotic at all. Odd, I know, considering neurotic and Jew are usually one word. But I'm just not. I never think the worst is going to happen. And I go with the flow. If someone looks good, I assume they're good. If they're smiling and it looks like real smizing, I assume they're ok. So it's just a little jarring when it's news we'd prefer not to hear.
Especially with Jocelyn. She and I are kindred spirits in the non-neuroses. We're both highly skilled in the art of thinking- "Whatever. It sucks but it'll be fine" for pretty much everything. I think I've said before that as an adult hearing all the medical jargon and being of this technologically advanced time of being able to google, this is my first real front row seat to cancer. So I don't know what it's supposed to look like. Jocelyn personifies the word "strong", almost to the point of stoic, where if you weren't looking at her cute reverse mohawk, you'd seriously forget there's anything wrong with her. She does drop off at school EVERY DAY. She came out for mom's night out with the other moms from school. She wore make-up and she looked hot. She's thin, but maybe it's just because I see her almost daily, that she doesn't even look anything but "oh, she's lucky- she can probably eat whatever she wants". Because it looks natural on her. To me it does anyway, but I can't really say I've had healthy views of weight. Another blog for another time. She talks about going back to work at least part time in the fall. She talks about vacations and what we're going to do next summer. So I really do forget about the cancer. We goof about cancer. She doesn't wallow in cancer.
When I went to swim class this week I didn't expect to see her. I saw her at school drop off and she told me she was going to chemo. I walked in and saw her and her mom, but I didn't think anything of it. Then I saw her face and she and Eric just said- "Bad news". It knocked me for a loop. And no, it's not about me. I just wasn't expecting it. When people ask me how she is my answer is always the same- "She seems good and she looks good. She hasn't said otherwise. She just keeps moving.". But I saw how upset she was and I didn't even have words. It's kind of funny. Joce and I both are not huggy/kissy people. So I think for most people their first instinct is to hug or kiss someone but it's like I was just giving her love telepathically. I'm like Larry David sometimes. I'm paralyzed with my own awkwardness. Jocelyn I hope you feel my virtual affections. The truth is, it's just a very helpless feeling time for everyone. So instead of hugs, I went to dinner with them and we got to yell at two overtired four year olds for the duration of our time in a pizza joint.
Eric said something though that I thought was very profound even though it's common sense. But you can apply it to anything you're going through. Paraphrasing: that this is just one of those shitty times that seems big and awful but that is just really a blip in the entire picture. This is a long fight and there are going to be these days. Then there is good news. And bad again. But it's a small setback in the bigger picture.
For some reason that was just a slap into reality for me. That yes, it wasn't good news but you kind of just have to take it with a grain of salt, move on to the next course of action, and keep fighting. And that's just what she's going to do. She was visibly upset that night but already, the next morning, she was ready to fight. She kept her appts, she went on with her schedule, so on and so forth. It's amazing. That's why I'm writing this. I don't want her fight to be forgotten or ignored. I'm surrounded by a lot of cancer lately and I realize it's easy to think someone's just fine and don't need anything when all they might need is some positive energy, attention, etc.
I just wanted to share Jocelyn's blog post from the other day just to update people, drive them to her Caring Bridge page, and have people leave their positive thoughts and love. Jocelyn loves when people send messages, write in her guestbook, etc. I think it makes her feel like there is a virtual army of positivity helping her combat this. Friends, family, strangers, anyone. Anyone who has some good thoughts to send are welcome. It can only help.
Not So Good News
Written May 20, 2013 8:40pm
Hi everyone-Today I got not such good news when I saw Dr. Gorsky. I had my CAT scans on Friday and got the results today. Pretty much all of the tumors have grown. Now I have another stress fracture on my T11 vertebrae because of the growth. I always have back pain so I didn't really notice an increase in pain. I won't bore you with all the numbers in the report because it's too depressing. I guess the good news is that it didn't spread to my lungs, spleen, pancreas, adrenal glands, kidneys, pelvic organs, or bowel.
So the plan is to stop all of my drugs and start a drug called Kadcyla, which is Herceptin with a chemotherapy drug attached to it. If you were watching the news or reading the paper about a month or so ago it was all over the place. It just got approved and the nurse said I am the fourth person to whom they are giving it. I didn't get it or any chemo today because we are waiting for approval from my insurance company. It costs $11,000 each time I get it, which is once every three weeks. I'm thinking that it will still be cheaper than what I was getting because that was three drugs, two of them given once every three weeks and one given two weeks in a row with a week's break. Sloan will call me on Wednesday to let me know if it got approved and hopefully I will get it on Thursday or Friday.
That actually didn't bother me nearly as much as the next set of news. The neurologist in Basking Ridge read my brain MRI results from March. There was an area in the report, on the brain lining which I believe is called the Meninges, that may be affected. Dr. Gorsky gave it a name but it was long and I wasn't really processing much at that point. The plan is for me to have an MRI of my brain and spine to see if it's nothing or something. Then I will see the neurologist there and he will figure out what to do if there is something. Dr. Gorsky said there a few ways to treat it but didn't elaborate.
So that's where I am. Cancer sure does give you lots of highs and lows. Today really sucked and tomorrow will be better. What I ask of all of you that read my blog is to continue to sign my guest book with whatever you think will cheer me up because I am definitely feeling a little defeated.
I'll let you know when I receive treatment and when my MRIs are scheduled. Until then keep praying for me while I continue to fight the fight!
To read about Jocelyn's journey, www.caringbridge.org/jocelynnissenbaum1
or http://www.caringbridge.org/visit/jocelynnissenbaum1
You do have to create an account to read but its free and easy to sign up. There is also a free Caring Bridge app for smartphones.
Thanks for reading! Love you Joce!!
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