arnica

I'm not a regular visitor to these boards, so my infrequent posts are sometimes late or out of context. I'm glad I found this thread today - I'm looking forward to visiting these links! 

My blog is "A rural woman's breast cancer journal" at http://ruralwomen.wordpress.com. When I was diagnosed, a friend asked if I would share my experience with other women, so I began a journal when I went to the Living Beyond Breast Cancer Retreat in December 2007, shortly after I finished radiation therapy.

I am a lurker, so it takes me a long time to read enough posts to get oriented. As a triple negative, I read most of the posts in this thread today.

Indigoblue, I can't imagine how discouraged you are over being denied more aggressive treatment when you wanted it. I also had the stabbing pain, and knew it was a myth that "if it hurts, it isn't cancer." Interesting how you were told to start counting your NED time. I didn't have chemo, so wouldn't know when to begin, according to your onc. I guess I'll use second surgery date, since all tests then are NED.  As a friend of mine would say, anywhooooo, congrats on the 2 years NED!!!

Squids - you are an inspiration!  I am just now getting enough energy back that I think I can help put together a directory of local resources for women with BC in our little rural community. When I asked for them when I needed them, I was told by the hospital and clinic they didn't have any information, and to please let them know if I heard of anything, and I thought, yeah, right. Hold your breath for about a year and I'll get back with you on that. We got a grant to help cover some of the expenses.

The discussion of followup schedule for us triple negs was interesting. I would think there would be a standard protocol depending on our particulars - node involvement, etc. I also wanted PET and other scans to make sure I didn't have any NED. My onc and surgeon both said they didn't order them unless there was a reason, and they didn't think there was a reason in my case.  I guess I was looking for certainty in what I'm learning is a world without it. So what I've been learning is how to live in that world rather than in the world I was in before, when I had the illusion of certainty. I've come to learn that all I had to give up was the illusion that I had any control -- I didn't really have any control to give up.

That said, there is still the matter of having responsibility for some things, which include trying to eat well, get enough sleep, exercise, and make good choices when I have the opportunity to make them.  For me, that included the opportunity to be able to change jobs, even though I had previously felt that I was being held hostage to a job in order to keep health insurance. That has to be one of the most stressful things we go through - having a job with health insurance, and worrying about how to keep the job if we can't work every day.

I don't always feel that I am making good decisions - a lot of the time I still feel foggy and fatigued. I was really tired a lot before I had my diagnosis (even though I was told that wasn't "normal" I don't necessarily believe that.) It is a 5-hour trip for me to see my doctors, and I'm on a 3-month followup schedule for the first 2 years.  My third (I think) followup appointment is July 14.  I manage to get appointments with my surgeon, oncologist, and doctor at the women's imaging center all on the same day.  I have exams and blood work, and in between the last 3-mo exams had a right-side (non-C side) mammo and ultrasound due to some rather lumpy concerns which turned out to be okay.  Will have 6-mo mammo on the c-side in July.

Now I'm wondering, if I see all these docs, maybe I should stagger them, so I'm seeing the onc and imaging on the 3- mo. and 6-mo schedule, and see the surgeon in between time. I guess the answer depends on whether I want an additional visit to stress over, or an additional visit to give me peace of mind. (Kinda like the basic question about the nature of the universe, isn't it?)

Also, I'm even wondering whether I need to call the onc and get in sooner. I've had increasing amount of pain on the left side - under the arm, under the breast, and in the nipple area, near where the surgery was. This is different from the pain that I had after surgery, during healing, and again when that side started "waking up" after radiation.  More like the pain I had in the cancerous "lump" - (what a benign name for something so malignant!)  It comes and goes, like the original tumor pain, so I don't know how to apply the rule about something that lasts for more than two weeks.

I made up my mind after the last 3-mo. checkup (which was also after a round of exams by gyn, the genetic testing, etc. which meant I was seeing someone at least once a month for 6 months immediately after rads was done) that I was going to live like I'd never had cancer -- not wake up and think about it every morning, and not allow it to control my life.  which I did pretty well with until this pain started getting worse. Most of the problem in that area so far have been attributed to surgery and rads. I hope this is more of that -- but it's really hard to sort out when we have to also be vigilant.  I think there are new little knots there, but hard to tell.

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Yup, Jacqueline, I hope the book helps.  When I come out of a good couple of weeks and find myself back in the emotional roller coaster again, at least I can tell myself that I read in the book that this is normal.  Wow - is that ever important, because I am sure not getting that feedback any where else in my real time life. 

This week I had to go to Denver 2.5 hours one way to have mammogram/ ultrasound on right breast and under arm to make sure that wasn't recurrance or new bc.  I didn't think it was, so didn't think I was stressed.  It was ok. But it was a looooong day and the next day I had a really long day at work followed by a board meeting.  Under other circumstances, I would have gone home to rest - knowing I was beyond my limits. but I thought i "had to be there (I am the E.D.) so I pushed myself all day and was okay until the meeting ran over its usual time and some man made a stupid sexist remark at which point I SLAMMED my laptop shut, stood up and said OKAY, I'M DONE. and stormed out of the meeting, dropping files and things along the way. 

I really hate it when this happens.  But I'm not apologizing any more for having cancer and decompensating once in a while. 

Lenore, yes I read several articles about over-use of chemo. The first was in the NY Times. I'll look for them.

My onc asked me if I wanted an anti-depressant and I said not yet. Maybe I will later, but first I feel like I have to try to see what's happening with me and see if I can make any sense of it. Is that odd? I go from angry to excited that I'm "okay" to depressed, then angry again - a series of emotions that last a few weeks at a time.  The only thing I can tell so far is that however I'm feeling right now will probably change. When I said I didn't want medication yet, the onc told me to call the social worker, who told me to read a book called "Dancing in Limbo - making sense of life after cancer."  Just one of *many* books I've read to help me understand how we change after the diagnosis - and how our relationships with others change.  I've always been pretty satisfied to go to work and go home - I don't like to socialize and I don't have many "close" friends. Now I have days at a time when I can barely tolerate being around other people.  Now I understand that if I'm patient and don't berate myself, that passes, too.

Here's a quote from a review about Dancing in Limbo:

"I immediately wanted to recommAnd this book to my patients. [It] will serve as a roadmap to help cancer patients to anticipate feelings and stages of the coping process. It will help demystify the complex and often baffling set of experiences on the uncertain path of cancer survivorship."

I made copious notes in the margins, a process that seems to help me define my own experience.

I'm glad this message board is here. I turn to all of you often when I need to hear from my sisters on this common journey. Love to all of ya!

There is also a study showing that women who have types of blindness that suppress any light from entering the eye - have a lower incidence of breast cancer because they have higher levels of melatonin.  Several years ago I got into the bad habit of sleeping with the television or lights on. I am not making a direct connection between this and my breast cancer. But I'm aware of it now and sleep in a dark room. My naturopathic physician put me on 20 mg of melatonin at bedtime and I've taken it for several months now.  Don't buy those lower dose 5 mg. melatonin tablets off the shelf and take 4 of them because there are probably other ingredients in them and who knows whether taking a large amount is safe.  A pure 20 mg. melatonin tablet can be purchased through a naturopathic physician or other health care provider - can't be purchased directly by a patient.

Thanks, all, for the feedback. My symptoms seem to come and go instead of being consistent, so I think I will continue to have lymphadema prevention massage and discuss with my onc at my regular appointment in January.  Could be the massage is helping.

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