Sunday, July 17, 2011

"You're depressed," said flippantly and matter-of-factly, in hasty response to my admission that nothing interests me...

"You're depressed."

Well, I'm not crying all the time anymore...

"You're depressed."

I take an SNRI...

"You're depressed."

Smugly said, with an air of one who knows all, but is above all.

Rudely thrown out there in front of my peers, as if the declaration would suddenly give me drive and make my hobbies and past interests seem important again.

Arrogantly announced as if it were obvious to all but me.

I wish my answer could have been less defensive. 

I wish I didn't feel the need to defend my state of mind to someone who isn't in metastatic limbo land.

I function. Most days I get dressed. Most days I don't cry. I keep my doctor appointments and I take my medication and treatments.

I have a disease that will kill me. Maybe in six months. Maybe in six years. (Unless, of course, I explode first from the weight gain caused by the meds keeping the disease reined in.) 

Nothing seems comparison to the fact that - regardless of my attitude, my frame of mind, or whether or not I eat enough fresh fruits and vegetables - this disease will get progressively worse, progressively more painful, and that the treatments will therefore get progressively worse, progressively more painful. 

Making jewelry, crochet and crossword puzzles seem insignificant next to having a child to finish raising, and a life to justify,  all in the probably-not-too-distant future.

Was I where I wanted to be at 30? No, so I reassessed and made changes. Was I where I wanted to be at 40? No, so I reassessed and made changes.

Am I where I want to be at 47? Hell no. I don't want to have metastatic cancer. So what am I going to do about it? 

Reassess? I'll still have this cancer.

Make changes? I'll still have this cancer.

No amount of passion to a hobby, interest in a cause, or desire to reinvent myself will change the fact that I have this cancer, and can't do a thing about it. 

Depressed? Yeah, probably so, (bitch), but I'm not going to trade it for a happy face-full of denial, so you can keep your met-with-me-a-few-times-in-group-setting brilliant diagnoses to yourself, unless you can find a more productive way of bringing it into the conversation. You're the one with letters after your name. You should know how.

I get dressed most days, and don't cry every night. 

All things considered, I think I'm doing pretty damn well.

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.

Monday, July 4, 2011

Happy Independence Day!

 I'm about ready for bed, and the neighbors are just getting noisy!

Changing Meds:

After my 5 weeks off from Femara, the doctor talked me back on to an aromatase inhibitor, and I started on Aromasin. In a week off, when my last blood was drawn, my CEA had risen to a number higher than it has been since my met Dx. I will need to call tomorrow and see what it read after the blood draw on Thursday, after the 5 weeks off from Femara. I also switched from Zometa, to Aredia, for cost reasons. I don't mind the 2 hr infusion time. 

I took the 5 wks off from Femara because I was so upset and desperate over constant weight gain. Every month, it seemed like another 4 pounds. Over 2 yrs, that adds up. The month while I was off, I didn't gain any weight, nor did I lose any, but now, after only a few days back on an A.I., I feel puffy and fatter. How do I reconcile myself to this? All my sisters are LOSING weight, and I just keep gaining. What can I do? My tumor markers say I shouldn't be off of the meds, but I really felt better in the body mass arena while I wasn't taking them. 

I am having pain this week, more than I have in some time. I'm sure it is from starting new meds, starting at almost the beginning, as far as side effects go, like when I started the first meds after Dx. Joint pain mainly. Lower back and iliac pain. Knees. Shoulder. And oddly enough, my left small toe. I think I may have broken it a couple of years ago. It hasn't bothered me in quite a while, but tonight it is very tender, and the tops of my feet near the toes are very prickly-feeling. It's been hard to get up from sitting and start walking the past couple of days, with pain on the left side of my lower back / hip area. Before, it was on the right, so this has thrown me a bit off balance.

It's that time of the calendar rotation when I feel panicked and unable to cope, and feel horrible about always needing to ask for help. This is the way it will always be. It's not like I'll be getting a raise, or over-time pay. It's difficult to accept, just like my weight gain. So this is what my life is to be...always short on money, and always fatter. I may pop before the cancer gets me. 

What a bio-hazard that would be!