PET/CT--Thanks for the Support

Friday morning. It's pouring down rain, and dark. My mood is still shaky, but I know it's the kind of mood that needs me to be busy and productive to improve. So today my plan is to write my application for a grant to go to ASCO (the big oncology conference) in Chicago this summer as a patient advocate.

Luckily I got a start on the application earlier in the week, because it's due next Monday, and my head is a bit fuzzy from being upset over the PET/CT results.

Once I get that done, I need to clean the so-called "guest room," where I've been sleeping for the past year (don't even ask what happened to my bedroom), so that a real guest can stay there next week. She's arriving on Sunday, and I'm having the carpet cleaned Saturday, tomorrow, to get rid of all the dog hair--the two dogs generally sleep in there with me. It's like the Bat Cave. Piles of books all around the bed.

So that's the plan for the day. If--a big IF--I have the energy, I'm going to tackle the problem of the Corvair--the mechanic keeps finding new, expensive problems to fix, and by this point (five weeks and counting), I think he's scamming me. So I'm going to ask another mechanic to talk to the first mechanic and tell me what he thinks.

But that takes energy, and focus, so I haven't gotten to it.

Thank you all
But this post was really meant to be a big thank you to all of you who read yesterday's post and respected my wishes for the kind of support that I needed (and need) right now.

One friend send me a one-line e-mail: "I send love, b."

Another offered a trip to the bathhouse one morning next week. (See: Women's Bathhouse)

And you can read the comments from my online friends here (scroll down to read the comments): PET/CT

Then there was an e-mail from Anna, a young woman with breast cancer who first got in touch with me about a year ago.

This is what she wrote:

I’ve been keeping up with your blog since I had DCIS about this time last year and I wanted to say I’m sorry to hear you were disappointed with your PET/CT results. I had a small, “probably benign” spot on my last breast MRI and it was simultaneously infuriating and totally disappointing. I’m 25 so I have spots on my MRIs and mammos all the time, but this was when I finally had three whole months without a biopsy or anything so I was pissed. I know that’s not the same thing as what you are going through, but I understand that scary, frustrated, angry feeling that comes with all the tests.

Your blog has been a great source of information and strength for me. I first found it when you made the buttons which I LOVE and which you were kind enough to send to me a while ago. I got quite a few comments about them at school. I hate all the pink marketing. I mentioned not really appreciating all the pink ribbon crap at a support group at my local hospital when I was first diagnosed and I couldn’t believe the response I received. I had one woman tell me that I wouldn’t understand because I *only* had DCIS (the woman who told me this was in her 60s with two adult kids and doesn’t have to think about breastfeeding, fertility, etc.) and that if I didn’t appreciate the community maybe I didn’t need to be there.

The moderator handled it well but it was an abrupt lesson at a bad time, so I was THRILLED to come across your blog and find I wasn’t the only one who thinks turning a disease into a marketing opportunity is sad and disappointing. Reading about how you handle these challenges with dignity, strength and a sense of humor has been enlightening and made this process just a little easier. I’ve struggled to find a relevant community that speaks to my experience as a young woman who has had an initial stage of breast cancer and I keep returning to your blog. It keeps me thinking positive without any of the saccharine pandering I’ve encounter elsewhere, and it reminds me that it’s not unreasonable for me to expect certain things from my doctors.

I’m BRCA2+ so feel free to e-mail me if you do the test and want to talk about it at all. It’s good information to have and for me it helped answer the whole “why the f*ck is this happening” part of everything, but my dad took it kind of hard since it’s from his side of the family. Navigating when and who to share that information with can also be a challenge.

Be strong, give yourself time to be disappointed, but keep us updated and know that you’re helping by sharing your story.

OK, so there was a little bit of advice in there, but it was gently given, helpful advice, and it WAS helpful.

Note how she was attacked at a SUPPORT group for stating her opinion about pink ribbon crap? Ouch! That is not supposed to happen. But then, I'm not a huge fan of support groups.

@ Jeanne Sather 2008.

Comments

[Sara]

"that if I didn’t appreciate the community maybe I didn’t need to be there"

Head. Spinning.

Stomach. Lurching.

Oh, Anna. I am so sorry this happened to you. Some people hold onto the pink (or whatever; different "communities"/marketing opportunities for different diseases) as a political identity and also sort of a magic feather, and they take it as a personal threat whenever anyone questions it all. I guess you discovered that and don't need me to tell you, but yikes. I'm so sorry this is the format in which you found out.

Nobody should be bullied in a "support" group.

[Sara]

Oh, good gad, and now I have an image in my head of a support group as Little Pink Clubhouse, with gingham curtains and a sign on the door that says something like "NO BOYS ALLOWED," only it doesn't say "BOYS," it says something else. What does it say instead?

And is it evil of me to be thinking these thoughts?