Tough times?

LC815 · November 2009

So, tonight I was talking to my boyfriend on the phone. I was crying and saying that I am tired of being "strong" and that going though an abusive marriage and having BC once was enough, but now I was really being tested. I made the comment, "I haven't even gotten to the hard part yet." (I haven't started chemo.)

"You are right now in the hardest part," he said. "You're trying to get your mind wrapped around this and you're scared to death."

Is he right?

I just had a thought . . . will I feel this way for the rest of my life? Sad, angry, scared of tomorrow but at the same time hoping that it comes? If that's so, then why am I worried about how long I have? This is a crappy way to live.

Peace. is my usual sign off, but tonight I'll sign off with -- Peace?

Linda

kirby · November 2009

Linda,

Of course you are scared, angry, mad and every emotion in between. I was also recently dx with liver and bone mets after almost 5 years out.

I think initially we are just in shock. I know my mind was like a filter and I could only absorb so much information at first. Slowly, after allowing myself to go through all these emotions I am finally feeling a little less scared, and a little more hopeful. It takes time. This is a shock to your whole being. I just take one day at a time. If I have a bad day, I wish for a better day tomorrow. I am soaking up all the positive I can.

You will get through this. It's ok to cry and be sad, in fact I think it's necessary to get to the next level. I also started going to a therapist and found it to be helpful. It is a safe place I can go and talk about all my fears.

I hope tomorrow is a better day for you and you find peace and comfort.

xoxo

SpunkyGirl · November 2009

Linda,

I have no idea what you must be going through, but I am so sorry. But, no, I don't think you will always feel that way. We've had a lot of tragedy in my family in recent years-both my DH and I got cancer (which he is still fighting for his life), and we lost his mom and brother to it. And yet, we got to the point where we decided that we were going to live the best way we know how, and that's to keep getting up every day and trying to enjoy every last minute. I love funny jokes, funny movies, spending time with my kids and their funny little buddies, and I'm just going to keep enjoying the things that matter most to me.

I don't know what you are going through, but I get the part about being tired of being strong. I'm worried that when I fall apart, the people around me won't know what to do with me! But the best thing I can say to you is to try to keep doing the things in life that give you pleasure, even as you are about to start chemotherapy. You will be amazed at how many women you will run into that are working and living through chemo. It won't be easy, and I wish you the best as you embark on this journey. Talk to those gals on the Stage IV boards. They are amazing ladies.

Hugs

Bobbie

pitanga · November 2009

Linda,

I was diagnosed stage 4 earlier this year. I felt, still feel, what you describe-- sad, angry, scared of what lies further down the road. You are right, this IS a rotten way to live. Anyone in their right mind would be angry.

I see from your signature that you had no positive nodes when you were first diagnosed. And now here you are with mets. When I was first diagnosed, I had just one node and still they told me that the cancer had been caught early. "Early detection is your best protection" .... it´s a frigging fairy tale if you ask me.

I don´t know how old you are, but when I was first diagnosed I was 39. The pronouncement of the government task force on screening is like a slap in the face. To me it is a no-brainer that women in their 40s need to be screened. I would even go further and say women in their 30s should too.

But the treatment I got did not cure me. It bought me some time. Nine years. I guess I should be happy about that but I feel I was duped. And now that I am stage 4, my oncologist tells me to buck up, I "only" have bone mets and patients with bone mets can live a long time. "How long is a long time?" I asked him. Eight years was his reply.

I just turned 49 and am supposed to be thrilled I could live "as long as" 8 years? Gimme a break!

All this ruckus lately about to screen or not to screen just makes me madder. I´m all for screening, but let's face it, they are screening away and still cant guarantee a woman with zero positive lymph nodes that she wont end up stage 4.

In that sense I think they have got their heads up their a**es. The problem is not early detection. The problem is that with the current state of treatment there are a lot of women who arent being cured even when their cancers are detected very early.

I´m sorry I am not offering you much optimism about what the future holds. But I wanted you to know that I share your anger and grief.

Lisa

Anonymous · November 2009

Hmmmm...less than one cm and one has mets. That really makes me angry. We need new treatments..not one size fits all! We need BETTER monitoring devices. The good ole mammo didn't catch mine. And it went into my nodes. So, I wasn't really shocked when I got the news that IT'S BACK! However, I still believe that mammos are better than nothing. I don't care if we only save ONE life out of a thousand. This just angers me to no end.

{{{{Linda}}}} we feel your pain.

((((Pitanga}}}} hugs to you too. You are so sweet and so helpful. I'm angry that so many young women get this horrid disease and "they" want to stop monitoring. AAARRRRGGGHHHH!

We need a bunch of hormone deprived, crazy women all dressed in pink going to Congress and tell them....I DARE YOU TO FOLLOW THESE GUIDELINES WHEN WE GET HEALTH CARE! Actually, I supposed we'd have to frighten the HHS.

LC815 · November 2009

Okay, I guess I didn't answer the questionnaire right . . .my signature is wrong, I'll try to fix it now.

In 2001, I was 40, should have gotten my first mammo. Blew it off. Blew off the mammo in 2002 and 2003 too. ("I'm too young.") In 2004, I was just putting on some moisturizer: lump. Yeah, whatever. I took my damn, sweet time (that I have so little of now) in getting it checked out. By the time I did, I was diagnosed w/ IDC, 2.5 cm. tumor. Stage IIB, nodes were something like 2/11. ("Oh, and we found just microscopic evidence in those two nodes, nothing to worry about.") Mastectomy. Reconstruction AC/Taxol chemo -- four rounds each. Surgeon says, "This will be the year from hell, but then you'll be done. You'll do fine with this disease." Tamoxifen for five years. Five years clean. I never identified myself as a BC survivor. I was done. After five years, I "graduated" to Arimidex, but my period came back. Onc nurse says, "Stop Arimidex." I don't go to next appointment because it's just supposed to be an "eyeball" to see how I'm doing on drug. Not on drug anymore. Don't go. No one calls.

Six months later, at my desk at school (teacher) and I feel a lump in THE BREAST THAT ISN'T SUPPOSED TO BE THERE ANYMORE!!! Lumpectomy five days later -- 1/2 cm. "No problem . . it's tiny. Radiation, but first, routine PET. It'll be completely normal."

Looky here . . . "two sub centimeter mets on liver."

I always wondered why we never mammo'ed my non-breast. Why no radiation in the first place? I didn't have a freakin' PET scan until my recurrence. WTF?

Lisa, when I first read your message, I thought, "Crap . . . SO not what I was looking for. I burst into tears. In the course of one day, I've changed my attitude to think beyond myself. If I had known, I'd have paid the PET out of pocket. Young women need genetic screening and I'd tell all of them them to get their baseline mammo at 21. I can tell you my three daughters will!!

WTF are they thinking . . . age FIFTY????!!!!!! Women could be dead by then.

Is anger better than despair? At least I feel alive. For now.

Peace (I need),

Linda

flash · November 2009

LC815. -Hugs to you.

EWB · November 2009

Linda - hugs. I am so sorry for all the crap. I don't know if it gets better, maybe a little easier? Maybe we find ways to cope physically, emotionally and mentally. Just go one day at a time. I wish you much peace....

pitanga · November 2009

Linda,

Your case is one more illustration of how ill-founded the new guidelines are. You were in your early 40s. What if your first lump hadn´t been palpable? With the new guidelines, you´d have waited five more years for a mammo.

I really dont get why they are so worried about the piddling radiation from mammograms. I havent read it in any 'scientific' sources, but I have often heard it said that you get more radiation from a short airplane flight than from a mammogram. So how about some guidelines recommending we not fly till we turn 50? Statistically speaking, avoiding all that excess radiation would save a lot of lives! And having spared ourselves so much radiation, we can get our mammograms without fretting that it will give us cancer.

But you are right, Shirley, there are a lot of cancers that mammograms don´t flag. Like yours, and like mine too. All the mammo showed was a few calcifications. But I had a palpable lump so they took me seriously. And here in Brazil, sonograms are part of routine gynecological care, so I also had a sonogram. My tumor was visible on it.

Linda, please don´t beat yourself up about what you coulda, shoulda done different. Lots of ladies do everything they´re told and still wind up with mets. Even some with DCIS and no nodes end up stage 4. Medical science needs to get a grip.

I am so sorry that you had to join this crummy club. But since you had to... welcome, sis.

Lisa

PS--Thank you Shirley! (((((((HUGS)))))) to you too!

Tough times?

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