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.

Supporting Those Coming in and Honoring those Going Out

 

It's the club no one wants to join. It's more like the Mob in that the only way out becomes death. Like the Boy Scouts, as we try to always be prepared. And the girl scouts, as we all love cookies...

I attended the first official meeting of the Metastatic Breast Cancer Support Group at my local hospital. I did not do as I wanted to in taking flowers to set seats for 2 local club members who have recently passed. I did bring up their names, and shared that the Lisa R. had wanted such a group for a long time, so it was a triumph for her as well.

I learned that I never want to go first in introducing around the table, or comment on much until every has been introduced. I put my foot in my mouth, and hope it didn't scare or hurt the feelings of a very new club member, who had just come up from the minors to be with us. She has my same doctor, and her recent diagnosis I'm sure had much more to do with him jumping on the Facilitator to provide this group than did my occasional bitching about it. She, though, is exactly why this group needed to be. She attended the Breast Cancer Support Group meetings, and was brave enough to strike out with the Un-Cured and attend this new meeting.

I've felt guilty all week about my verbal misstep, and am still debating on waiting to see them all again, or writing someone a letter. My dear sweet KNOWLEDGEABLE doctor is co-facilitating. I knew I should have taken paper on which to keep notes, as he gave several good-to-know tidbits of information. Next time I certainly will have notebook in hand.

The woman with the new diagnosis has three young children. The woman who sat next to me has two young children. I have one children, but he is not young. He is technically an adult, but not grown up and on his own and independent yet.

My main point of issue right now is the financial battle to stay insured and pay for treatment, while still feeding us at home...somehow. I have a lot of help with my insurance premiums, and while making it to Medicare has been my holy grail, things will still not be perfectly manageable then either.

I left the group feeling rather depressed. Mostly because of my misspeak, I think. But what I really feel, as far as me and this group (the facilitator asked me in the hall after as we were leaving if the group was what I needed, or something. I put my arm around the Rookie and said that yes, it needed to be here especially for her.) is that I need to be there at this one, even when it's not just for myself. This is something I feel I can support just to be supportive. Down the line, I am sure that when I need more support, I will find it there.

So that's the thing. I, personally, do not feel the need for the group. But I strongly feel that the group needs to BE. Personally, I cut that facilitator and her support groups OUT of my life and sought (and found) support online. I needed a group like that in the beginning, when I would stay up nights trying to find info on the internet. I needed that group when I was searching for support. Instead, I found Inspire.Com, and the women there ARE my support group. Because of this Cutting-Out I did, it was hard to go back. But because my doctor is involved, and because I want the group to solidify and stay in place for those who are searching, for those who have recently gotten their diagnosis. For them, it needs to be a soft place of understanding, support, and thanks to my doctor, information. 

So even if I do not feel, as of yet, that I need to be there for ME, I do feel I need to there for the others, to make the group attended and relevant. 

The day after the group, I read online that one of the bloggers I followed, Sarah, with Stage IV ovarian cancer, had passed away. I sobbed and sobbed. She has young children and a husband. Sarah blogged at The Carcinista, and she was witty and a great writer. She was still out going places within the past month, I believe. Another blogger, Ann, at Breast Cancer? But Doctor... I hate pink! posted a tribute to Sarah with a link to an article Sarah had written for her this past October on Pinktober from a Teal Point of View. 

Just a couple of days later, this morning, I found that my dear friend, Barbie from Inspire.com had passed away. A couple of months ago, she went on a vacation. We talked before her vacation, but hadn't spoken after she got home. I found out from another dear friend, Mary, that Barbie was ill but being taken good care of and was surrounded by her family. Mary printed and mailed off our well-wishes to her, as she wasn't up to using the computer. The news came through Mary this morning that Barbie had passed away in the night. Barbie had been very involved and hosted a stop-over of the The Pink Pedal group, who were biking cross-country to raise money for BC research last year. Barbie shared my snark, and we enjoyed our 'side-bars' of discussion of the discussions on Inspire.com.

I feel guilty when I cry and complain about my stable, though by no means pain-free, bone metastasis. I feel guilty when I speak easily of death in front of people who, while they may not fear it, certainly want to put it off for as long as they can to raise their children. I don't know if I should go to the support group next month mourning Sarah and Barbie. I think I should always be there, as it is something I believe in, even if I don't believe too much in the facilitator. It is hard to have a group, when someone like me doesn't feel certain that I will put myself through much of it at all, when that time comes, where we want to keep the balance supportive and encouraging for the women with families. They can fight this for as long as their bodies can stand the treatments. That's usually how it ends up. Someone either runs out of treatment options, or their body just can't take it any longer. But I know that these ladies, like my dear friend Annette, will put themselves through everything offered to have more time to raise those children. I hope that our Rookie's 2 nodules in her lungs either turn out to be not cancer, or are easily beaten down. Working forward with bone only, her chances of keeping it at bay for a long time are very good.

So today I remember and honor Debbie, Lisa, Sarah and Barbie. I pray for their families, and know that the ladies are resting pain-free in paradise.

And today I pledge my support to the group, and to the people there giving it their best.

Support for the East Valley

When I visited my doctor in March, I mentioned to him the death of Debbie Z. from the hospital's breast cancer support group. Debbie had metastatic cancer, and was one of those with metastatic disease relegated to the support group for all of breast cancer-dom, with no regard to the differences in Stages 1-3 and Stage 4. I wondered aloud to him how the facilitator would have handled this in group, and expressed to him how angry I was still with her for her refusal to acknowledge that a mixed group was not serving the needs of all. I told him of being accused in group of playing "Cancer Olympics" and the feeling that anything Stage 4-ish got the 'shush' in group. 

Yes, this is the facilitator with whom I  butted heads over the wording under my painting last spring. Same facilitator with whom another friend with metastatic cancer, Lisa, (whom I met on Inspire, but never in person, though we were patients at the same medical center) butted heads over the need for metastatic support and separate groups, and then simply gave up and went to a more distant and less convenient place for support. Lisa passed away metastatic breast cancer just a few months ago as well.

When I told my doctor how mets was 'shushed' in the group, he was upset and said "that's not right", and that he was going to have a talk with that facilitator.

I had forgotten all about our conversation until I saw him this month, and he said that by the way, there was a new support group starting for metastatic cancer! And he said it was thanks to me. He will attend the first meeting, coming up the first week in May, and act as a medical liaison of sorts to the group. Of course, tears sprang to my eyes. I will of course attend faithfully. I hope it goes well. I hope it is for all metastatic cancers, ie, ovarian, etc, and not just breast. I won't know until I go, as this is all the info I got from him.

I want to ask all my friends here and at Inspire to give me some thoughts and ideas to take with me to the group, as to WHY it is important to have a group for metastatic cancer, and not just combine it with all stages of breast cancer. I fear being the only person at the first meeting, and want to be armed and prepared.

I also think I will take a rose, one for Debbie Z. and one for Lisa R., and place them each on a chair with a name card. I hope this will emphasize the differences between breast cancer and metastatic cancer, and what we face that those in early stage breast cancer don't need to face on a monthly basis. 

Support Group Tuesday Night - computer not working

Had my Cancer Support Group tonight. I felt good about going and the meeting felt good. There were like 5 people there with METS, which was like half the attendance, and one woman who has just finished chemo and is starting radiation. I wanted to give her a bracelet that I brought, but she ran out quickly, and I was talking to another woman who has been taken OFF Femara, and she gave me three unopened bottles. Very sweet. People liked my "surviving" quest. I felt good at first , but then as it went on I kept feeling like I said the wrong thing.

What is this let-down I am feeling now though? My bad attitude is surging up and I'm not feeling positive and warm or fuzzy. Well, fuzzy in a few places, but not in that good way. I want to say/write negative things, go back to yelling "I could be dying soon!", and go out and sing karaoke in a real bar with a real sound system.

I'm feeling tired, but I was hungry; that's what got me up out of bed. Ooops, sometimes I forget that three meal a day thing. Wouldn't know it by looking at me.

I am feeling cranky about one thing that was said...and anyone who knows me, knows how I let that get me all obsessive. I want to go again next month, but I don't want to talk, or share.

Plan D and Support Group Insights

Plan D...is not working either. Doctor gave me samples of 3mg Lunesta. I took it at 11:00pm. Went to bed, tossed and turned until 1:00am. Got up and watched comedian videos on youtube until 3:00am. Went back to bed, lay there awake, and decided that maybe I'd try again to just stay up until the following night. It's 5:00am. Problem is, as soon as the sun comes up, I get sleepy, and could sleep for 14 hours...I'm completely switched around. I don't like it, it makes me angry, and I'm completely non-productive, obviously, since I'm asleep all day!! I don't know what to do.

I went to the Cancer Support Group tonight. I felt like a big downer, and cried a lot, saying I didn't want to live 8 or 11 yrs, that I wanted 1 or 2...max...cry cry cry....I felt REALLY bad because there were 3 first timers, and one who had been coming as support to her sister in law, who just got diagnosis news yesterday. No meeting in December, and I really feel like I need to apologize!! I sure hope they come again.

But, as I got home, and things started sinking in, a point that was brought up started to make sense for me. That sometimes it takes a while for our mind to catch up to where our body is in the disease/treatment. I was SO calm when I first got the diagnosis of metastasis. It's almost like I already knew, or expected it. I was pretty calm about it throughout the hospital stay, apart from the discomforts of the hospital stay. Maybe my mind is just now starting to catch up. I was so depressed already from 9 months of chronic pain; then add the diagnosis to that...I am one depressed puppy!! I had really lost much of my will to live BEFORE I was told I had a cancer that could kill me/would kill me in (max) 15 yrs.

I also have a very small "plate". When people say "I have a lot on my plate", they usually have a dinner plate. Some people have a freakin' platter. I, on the other hand, have a tea-cup plate. Put more than 2 or 3 things on and it just starts spilling out all over and I cannot cope. So, tonight I am trying to think of what I would want to do once things get to a status quo...when all these kinks are ironed out (paperwork, insurance, disability...), what do I want to do? I feel pressure (put on myself) to work, yet I know that physically I am not ready, and emotionally, probably not either...I'm just feeling guilty and the sleepless nights make me feel restless.

I really want to go back to bed right now. 5:20am. I know I'll go to sleep in quick time now, but getting up at 9 or 10 is practically impossible! WAKING up is practically impossible, and when my son (bless his heart) brings me my Femara at 9:00am, I am often not even coherent. OK, I'll try it again...and try to get up at 9 or 10. And make myself stay up all day. Maybe that will help. This is a really boring time of day, and hard to stay up anyway, but, since this has become my pattern, I also really feel tired finally. How can 3mg of Lunesta not even phase me??? I've got to get turned back around.

Procrastination...If I weren't good at, it wouldn't start with "PRO"...

I just haven't been able to get myself to sit down and do this. Maybe this weekend I'll be able to fill in the gaps.

- visit with oncologist good; got some more solid info. I officially have a "substantial amount" of cancer on my bones, but it hasn't spread in the past few months. He got a radiologist to do a comparison.

- attended the Cancer Survivor's Support Group at Banner, and they didn't throw me out for getting cancer again! Actually, there TWO other people there with METS! I felt welcome and at home. Considering joining the singing thing they have going twice a month until 12/1.

- paranoid side-bar: learned that ovaries sluff cells, so even if you have had them removed, you could still get ovarian cancer in cells left behind. Yeah, add that to the list to worry about.

- seeing the Primary Care Doc tomorrow to discuss better drugs. I have worn out my welcome, and therefore their effectiveness, with the ones I'm on.

- yep, still not sleeping. May have to change from Femara to one of the others, with their inherent side effects, if new meds don't help me sleep.


That's as much a nutshell as I've ever written, and really avoided the "feelings" part. Maybe I'm still processing. Maybe I'll try bed again!