7 yrs of ups & down - how many more...

Pam P · 06-11-2008, 04:38 PM

How many more... a question I'm scared to thimk about. try not to, yet it often creeps in.

This week is 7 yrs since I was diagnosed. By God's grace, a great oncologist & treatment, will to live, luck & mystery, here I am still strong.

I just had my chemo today. Taxol/avastin & monthly aredia. I've only been on taxol/avastin one month. So far so good. My ca3739 was down almost 30 pts since last month. My onc. was pleased with that - I'd hoped for better.

I've gained 7 lbs in one month! Is it just stress eating? the chemo? Wow I can't keep this up. I had decadron the 1st 2 tx, but asked to have that dropped, so haven't had that the last 2 times. Also I asked to have the benadryl dropped also because I have severe tiredness reaction from it. I only had 12 1/2 mg today, but that still knocked me out.

Sheila, you asked how much taxol I'm getting. It's 162 mg.

Today I was saddened like everyone else to learn of Lolly's death. I also learned of another woman, Trudy, who died in late May. Trudy & I had met on another website a fews ago & had been emailing often ever since. I don't recall how long she was stage IV, but survived several years.

So, looking ahead. I want to celebrate the fact that I'm doing well after this long - & I do. But that cloud of knowledge is there ... I want to see my grandson graduate --- he's only 1 yr this month. Can I be here 17 more years? I have many many many more things I want to do & experience in my life. So did Trudy; so did Lolly. I want to live. So do all of you.

Now I'm rambling, I just have to get this out today.
Feeling anxious, grateful, hopeful, anger, and a hundred other emotions and thoughts all competing for attention.

Faith in Him · 06-11-2008, 04:54 PM

Hi Pam,

I understand, as all of us do, all those emotions you describe. I feel angry too at the loss of so many wonderful men and women to this disease. I pray that in the near future there will be more effective treatments and we can really turn this into a chronic disease.

I am glad that you have done so well over the years and trust that you will continue to do so.

Blessings,
Tonya

dhealey · 06-11-2008, 05:13 PM

Pam, I understand how you feel, as all of us feel this way at some time or other. I try not to let the fear creep in, but there it is a part of every day. It is great that you have done well so far and you must believe you will continue to do so. They are making headway every day with breast cancer treatment. Keep up the fight for your grandchild. That is what keeps me going everyday, my darling grandsons.

chrisy · 06-12-2008, 08:55 AM

Boy Pam, you sure hit THAT nail on the head. Sometimes I even find it hard to celebrate good news because some voice in the back of my mind is saying "yeah, well thats nice, but what about the NEXT scan?". I think one of the hardest battles for me is to keep my head right - juggling all the emotions you mention and more.

Obviously I don't have any answers, just wanted to thank you for expressing it so well and say you're definitely not alone!

Love
Chris

Pam P · 06-12-2008, 09:53 AM

Thank you Tonya, Debbie, Chris for your kind replies. It does help to know someone else understands and KNOWS. I'm trying to get myself back into a more hopeful place even in the face of the risks. Someone said courage is facing fear & moving ahead anyway --- so with that we are all courageous.

Mary Anne in TX · 06-12-2008, 10:00 AM

You're so right, Pam. It's a daily battle, sometimes minute to minute....but.....worth the fight. When I get afraid, so tired I make a snail look fast, or just feel so achy and yucky; all I know to do is remind myself of my goal to sit "front and center" when my 8 year old granddaughter graduates from college. When I'm REALLY whaky (maybe that's happening too often), I dream of ways to get her into college years early! Then I pick something soothing to do(sit outside, go window shopping, or call a long time friend to check on them, etc) and try to fool my brain. Most of the time I'm good. You've done a hard thing and you've done it for a long time! Congrats for being such a warrior. And thank you for sharing what many of us so often feel. Much love and peace to you today, ma

Joan M · 06-12-2008, 07:03 PM

Pam, I really feel for you. I think about the same things -- will I see this or will I be here long enough to see that. It try to live for today,but sometimes it's very hard. Joan

juanita · 06-12-2008, 08:38 PM

Just take it one day at a time and pray like crazy. That's how I got through it all. And we all have those same thoughts believe me.

Sheila · 06-13-2008, 06:32 AM

Pam
I checked yesterday...I get 180mg.....I was up all night from the Decadron!!!! Next time I will only get 6mg...the reduction begins...they won't let me go off totally, they said I will always have to take some with the Taxol, the same with the Benedryl and the pepcid.

jones7676 · 06-17-2008, 02:57 PM

Boy, did your post "hit home" with me. I've struggled with the same issues, and my husband recently told me he can't handle the ups and downs anymore. He said he gets hope when I get a clear scan etc. and then it gets wrecked by something bad. I told him to assume then that the worst will happen and anything good is a surprise. I didn't know what else to tell him. I get so angry about the "why me" thing sometimes that it scares me. It is also hard when someone had breast cancer treated like 20 years ago and is now fine says something like "you must be doing something wrong or you would be cured". I just want to smack 'em. Instead I go home and cry and ask myself why I couldn't I be one of those people? You know what I mean? Ok, I'm done whining now.

Pam P · 06-18-2008, 05:01 AM

Barb -
Thank you too for your honest reply. I agree the not knowing from one scan to the next is ... well, I can't even find the right words for what that's like, but I know you know.

Expect the worst, hope fo the best, is not the motto I'd choose but seems to fit the reality. I haven't spent much time on the 'why me' question. I could easily ask 'why not me' in this vast & complex universe. That doesn't mean I don't spend a lot of time being angry and deep in lots of other emotions - mostly fear. No one has ever said to me like you mentioned 'i must be doing something wrong'. If anyone did I think I would smack them-- at least beat them verbally. If it was a matter of being able to change this disease by doing something 'right' we'd all be cured today.

Thank you all for your replies. Knowing that others support, understand, and struggle with these same feelings and thoughts help me not to feel so alone.

Health & peace, Pam

jones7676 · 06-19-2008, 12:21 AM

Perhaps a better way to phrase it would have been to prepare/educate yourself for all the possibilities and expect the best! Sometimes I guess my phrasing doesn't come out like it should. Even though I have days, moments etc. where I feel negative/hopeless most of the time I am positive and encouraging. I'm sorry if you took it any other way.....I was only trying to express my empathy for your situation.

Hopefully this reply has been phrased a bit better than the last!