Wednesday, July 13, 2011

Rut. Gorge. Ravine.

I can't put my mind's finger on the word I want, but I've been dragging along the bottom of something. I am unsure of what to write here, as per usual.

Perhaps just an update is in order. 1/2 a month on Aromasin after 5 wks off Femara. Some edema in my ankles and lower legs, mostly at night. And is it my imagination or is my FACE HAIRIER this week?? Not that anyone cares, or cares to be close enough to my face anymore to care that it is growing a (thankfully) blond goatee...but it grosses me out. 

The whiskers, the double chins and the wrinkles all gross me out, on my own face.

I feel bulkier. I felt not so bulky during my 5 week hiatus from Femara. Unfortunately, the rise in my CEA tumor marker (to an all-time high) was unacceptable. I guess I have to accept the bulk. I still have increased lower back and hip pain as well, which could be the Aromasin, could be the Aredia, and could be lesions acting up again. Really, I don't care which, as long as I can still walk and don't break any bones.

Perhaps the indecision regarding blog topics coincides with my feelings about the newly-formed Metastatic BC Support Group at the hospital. We have had three meetings now. I leave hoping that something soon will 'click'. I have been in contact with another member, and she shared that she leaves feeling frustrated. 

I asked her to give it one more month, and I am determined to somehow bring in the next meeting a discussion of what we want the group to be. I am not over my don't-care-for attitude toward the facilitator, and I am not sure that we CAN mold this into OUR group, into what WE need. I feel frustrated as well. I feel committed, as I wrote previously, to attending, to support the existence of the group, and my doctor's commitment to be there and be the medical liaison. If it weren't for him, I think I would give up on the group more easily. 

How do we quietly and with dignity wrangle control of the direction and content of the group? What do want from this group?

Validation Realism Acceptance 

What do we want NOT to be a part of the group? Criticism, Avoidance, Ignorance, Patronization, Marginalization, Platitudes. I don't want to hear that I should exercise and eat fresh fruits. I know this. It won't cure my cancer. Trying to lose weight now, in combat with the aromatase inhibitors trying to pack it on, when I have had trouble losing it without that against me, is not what I get dressed and drive to the meeting for. It's insulting. 

Is the facilitator committed to making this work? Or would she rather see us give up and not come, thereby making HER right about not having a separate group for metastatic. There are those who cannot attend because of work, and we got the day slot. Those will continue to attend the BC Support group, at night. If they could, I think they would attend the Metastatic Support group. 

I don't want her to WIN! I don't want her to GET HER WAY! I feel we need to show up at the next meeting with visual aides, or write our words on the white-board. I would like to hold up a picture of the stupid food pyramid with a big international symbol for IX-NAY through it when she gets off onto what we feel is not beneficial or relevant, things that we feel are downright insulting. 

I feel we have to something, and that it has to be obvious, and that it has to be well-thought-out. If we are to say we don't like something, we need to back that up with what we LIKE and WANT. We need an uncensored mission statement.  

We need some good Haiku. 

Oh I hope we can come up with something. I'm glad I see my doctor before the next meeting. I hope he has a couple of minutes to discuss it with me. This issue is weighing on my mind, and I feel I need to DO something about this. 

Comments and suggestions are welcome.


nancyspoint said...

Wow, a support group that isn't supporting you? That's too bad. I think maybe you need a support group within a support group. Perhaps find a few others that feel as you do and decide what you want to say to improve things. You mentioned you already connected with one other person. List out want you would like. If there is no one else, then I think you should feel free to do it yourself. The facilitator needs to know this is how you feel. She's supposed to be there for you. Anyway, good luck. I am having trouble with the weight issue too since starting Arimidex. Ugh. said...

The biggest thing that jumps out at me is the facilitator doesn't think there should be a separate group for BC mets! That's a big red flag.

You've recognized the format isn't meeting the group's needs, and you're also taking a thoughtful approach to coming up with suggestions for the kind of things you do need. If after talking w/other members and presenting everyone's suggestions to the facilitator doesn't work, I'm inclined to agree with Nancy that you might need to become your own group. Just be aware that your doctor may not want to get too involved. Politics, political correctness and all the ego driven things that keep us from being the best we can be.

marnee said...

Found your well worded blog through my friend Kirsten (via facebook). I don't have cancer. My boy cousin had breast cancer last year, and another boy cousin's wife lost her battle in 2009. Don't know what type. So, though I enjoy reading, I don't really understand.

But as I was reading this post, I thought of that scene in Apollo 13 when the astronauts have a little "medical mutiny" and remove their sensor patches that give Houston readings on all their vital signs. They are on a death trap machine at the time.

Somehow it seemed to fit the situation you were describing.