"Surviving Survival" - Four Years Since Diagnosis

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  • althea
    althea Member Posts: 1,595
    edited June 2007

    I'm about 2 1/2 years from dx. I was stage 2 lobular, grade 1. Went thru chemo, mast with immediate diep reconstruction, rads, 2nd surgery. Now I feel like tamoxifen is kicking my butt worse than all the hard-core treatments. For a while I thought I was 'through' with treatment. But since I can't seem to kick my fatigue to the curb, I consider my treatment ongoing until I can kick that tamoxifen to the curb. I wanted so much to be OVER my treatments when I finally finished with rads. Not working out that way. It's discouraging to hear a 4-year veteran complain about the fuzzy brain, achy joints, fatigue, etc. Could it be that you're feeling a tiny bit better now that you're tackling that book? give us bone to chew on! I have GOT to feel better than this 2 years from now!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Alice, DO let us know about your CT scan. I'm seeing the eye doc Wednesday. My fingers are crossed for you -- hoping they'll figure this out and nothing more will be needed. My prayers are also with you.
    Shirley
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    "Done with active treatment." LOL That's what we all say, but some of us feel like we're still in "ACTIVE" treatment. My biggest gripe right now is fatique and fogginess. However, I had some of that before dx, but do believe it has intensified after chemo, and now possible AIs.
    Shirley
  • trumpkin46
    trumpkin46 Member Posts: 47
    edited June 2007
    Hi Shirley, your message(s) have been a great encouragement to me. Thanks. I hope all goes well on Wednesday. Let me know....
    CT scan is done, and now I wait for the results....I only had to wait a week from the initial appointment with the ocuplastic guy until CT, and that's pretty good. I hope to hear from him soon, re next steps.
    Alice
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Quote:


    I don't care if you lick windows,
    take the special bus
    or occasionally PEE yourself...
    You hang in there, sunshine,
    you're frigging special.




    Love, love, LOVE that "quote." But PEEING yourself? LOL

    Talking about "peeing" onself -- a few years ago a friend and I went to visit my oldest daughter who was in college at the time. When we went on these trips of course, like most women, we loved to shop. One day we were in some department store (can't remember the name) and I had to go to the bathroom. Well, upon arriving to the potty I didn't pay any attention before I "squatted" over the seat (can't do that now -- have to use liners). Well, sir, I squatted not know the toilet seat was DOWN! I didn't bother to look. Anyway, I realized the seat was down because I started PEEING all over my clothes. When I found my friend I told her what happened and she about peed in her pants. I told her to stand behind me so people couldn't tell I had wet my clothes. Oh, how embarrassing!

    What chapter are you one now? Geez, I wish I could be a fly on the wall.
    Shirley
  • mcbeck
    mcbeck Member Posts: 29
    edited June 2007
    Hi All,

    Funny how I’m coming back to these boards so often – I missed it!

    Alice – I really hope everything goes okay. I saw an “eye guy” to update my glasses to match my blindness. Detected Glaucoma. Sent me to a specialist “a high-paid eye guy” and more tests were done. I go back in August to see if the “number” I’m at went up (I think it was up) meaning it probably is Glaucoma. I’m right there with you holding your cyber hand in mine. Hang in there!

    Thanks for your I-Pod tip, I’ll give it a try, although, rock and roll is my kind of music and I usually ending up wanting to dance, not sleep! It really, really does cheer me up though.

    Althea, please don’t lose hope. I guess our futures are not real pretty at times. I cannot lie to you but I don’t feel much better today than I did a couple of years ago. You are right about the book – it really is helping me, a lot. Maybe we all just need some kind of outlet. Everyone has different needs, so we probably all need different ways to release our fears and frustrations.

    Not to sound like a broken record, but thank God we have these boards. You can say whatever you feel because we understand and nobody can judge us.

    I picture you kicking the small letter “c” in the street, up against the curb. It looks like a lot of fun. Let’s throw in a “t”, “r”, and any other “bad words” we deal with.

    Shirley, you crack me up! Glad you enjoyed the quote – I thought you might. My Pee story isn’t as funny as yours, but it is comical.

    I don’t usually wear any “thong-wear”, but bought a “body suit” once (you know the kind that snaps down by the crotch) that was thong style. We were at the beach a few weeks later and I had to pee. Ran into the bathroom, (the toilet lid was in the up position), pulled down my shorts and peed right through the body suit! Good thing the ocean was nearby…

    I’m on chapter 9! I can’t believe it. About 38 pages so far and the ideas keep flowing. It’s like I’m on a role and as I told Althea it seems to be great therapy.

    Thank all of your for your encouragement on my book. It helps motivate me and keeps me going. I’m already getting excited about the progress.

    Hugs,

    Jackie
  • tflowers
    tflowers Member Posts: 442
    edited June 2007
    Jackie, we are like soldiers in the war against cancer. And we do have casualities like war and we lose body parts like war and we do suffer irreversible damage to our bodies and minds like war. It's not something we signed up for so I guess we were "drafted". We are the lucky ones because we are here with our families and loved ones and not many miles away from home.
    This is a fight we will fight and hopefully win. I like many of you don't have 1/2 the issues of some of our sisters do, but our issues are realy and everyday.
    Love to all. xoxo
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Alice, I still have my fingers crossed (and right now my leg too). You are dealing with this like a true champ. Me, I get all "nervousy." LOL However, I will be glad to see the doc tomorrow (but will be nervous). I'll PM you later.
    Shirley
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Quote:


    I don’t usually wear any “thong-wear”, but bought a “body suit” once (you know the kind that snaps down by the crotch) that was thong style. We were at the beach a few weeks later and I had to pee. Ran into the bathroom, (the toilet lid was in the up position), pulled down my shorts and peed right through the body suit! Good thing the ocean was nearby…




    I have never liked those things that snap in the crotch. How in the heck is one supposed to see how to snap it back. I had one that had the hooks and eye. It was one that covered my WHOLE belly up to under my boob. No way was I going to try to undo those hooks and eyes. I just pulled the entire thing down. And, if I didn't have to potty real, real bad I'd hold off. I bought that thing to wear under my dress at my daughter's wedding. I need some foundation.

    Quote:

    I’m on chapter 9! I can’t believe it. About 38 pages so far and the ideas keep flowing. It’s like I’m on a role and as I told Althea it seems to be great therapy.




    You are really moving forward. And already have more thoughts to write. That's fantastic.
    Shirley
  • trumpkin46
    trumpkin46 Member Posts: 47
    edited June 2007
    Hi Sisters,
    Thanks for your encouragement about my eye. I have an OR date for next week, 26 June. The consent says ' obitotomy (that means 'opening up the orbit), biopsy and debulking' Nurses are awful patients....we always read the worst into anything.....Will let you know how it all goes.
    Jackie - glad the IPOD idea appeals....anything to keep those uphelpful brain loops from taking over at 3 am.

    Alice
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Quote:

    debulking' Nurses are awful patients....we always read the worst into anything.....Will let you know how it all goes.




    How 'bout those of us who no NOTHING and do internet searches and find the answers to our problems. And, of course the answers are ALWAYS the worst. Just call me "Dr. Shirley."
    Shirley
  • mcbeck
    mcbeck Member Posts: 29
    edited June 2007
    Hi all,

    Haven’t been here in the past couple of days. Why? The reason is exactly why I originally posted this message – I’ve been trying to “survive survival”.

    I’ve been too tired after work to even read my e-mail. (I spend the company’s $$$ buying whatever it is they need to make whatever it is they sell).

    My friggen back is “killing” me – or as my Pain Mgmt. Doc asks every time I see him – “what is my pain level?” Crap, I don’t know - a 7, 8, maybe a 7-2/3rds. How about “it feels like a horse kicked me in my tailbone”! Put a number on that!

    My emotional roller coaster is on a downward course and going fast. The good news is I’ll climb back to the top in a day or so.

    Haven’t put any effort into the book – again, tired. I can’t think as well when my brain gets used up trying to remember what the heck I just said!

    Sorry to be a gloomy Gus – there I go again (guilt!). Just want all of you to know, because you understand and it helps to vent here.

    Thanks for listening and not judging.

    Hmmm, another chapter? See I feel better already.

    Alice – any news?

    Hugs to all of you.

    Jackie
  • trumpkin46
    trumpkin46 Member Posts: 47
    edited June 2007
    Hi Jackie,
    Thanks for asking. I'm waiting for an OR time for next Tuesday 26th june. Will post the results here.
    We are all behind you on the book, and so pleased thatyou are putting thejourney into words.
    best, Alice
  • tflowers
    tflowers Member Posts: 442
    edited June 2007

    Jackie, just take it easy and do what you need to "survive"

  • mcbeck
    mcbeck Member Posts: 29
    edited June 2007

    Hi girls (and any guys out there too).

    I’m doing a lot better today and started back on the book a couple of hours ago. Took a break to post this.

    I’m kind of jumping around as ideas come to me so I don’t lose them. Some go so quick by the time I go to type them, they’re gone!

    Thanks for letting me know what’s going on Alice. You are in my prayers. The waiting is always the hardest part and you’re probably climbing the walls – I would be!

    Theresa, thank you for you inspiring words. You hit the nail on the head... We do what it takes to survive, sometimes minute by minute.

    Shirley, I’m cooking today. The thoughts are flowing like a waterfall.

    Hugs,

    Jackie
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Glad to hear you're "cooking," Jackie.

    Don't overdo yourself. We all know about those times we get so tired (or at least I do) we don't even want to read our email. There's been times I come to the board and am too tired to post and just read instead. HOWEVER, DON'T YOU DARE give up on the book! JUST KIDDING! Remember what I said before, what's the worst that can happen? You don't finish the book. But I think you will.

    Exercising the ole brain ain't so easy, is it? Like losing train of thought while typing.

    I'm really impressed AND proud of you for giving your best toward writing this book. Women who have been battling this disease (I don't know if that ever stops) will be encouraged by reading your book and knowing they are not alone. If I didn't have this board to come to I surely would not have known that I'm "normal."

    So, again I say, YOU GO GIRL!
    Shirley
  • trumpkin46
    trumpkin46 Member Posts: 47
    edited June 2007
    Hi Sisters,
    I had the biopsy and 'debulking' of my eye lesion today, and it is malignant - probably a lymphoma - but at least not metastatic BC. Will know more about treatment possibilities tomorrow when we meet again with the surgeon, and the final path should be back next week. I have a tremendous black eye. Surrounded by family and friends. Thankful for this board...
    Alice
  • iodine
    iodine Member Posts: 4,289
    edited June 2007

    Hi Alice, Sorry about the dx and black eye. What will be happening? Please let us know, ok? It's always something, isn't it?

  • mcbeck
    mcbeck Member Posts: 29
    edited June 2007
    Hi Alice,

    I'm glad it wasn’t mets, but sorry you still have to go through all this crap. What is a lymphoma? I don’t like the way it sounds. I hope it’s not serious.

    Like Dotti said - it's always something.

    I'll keep you in my prayers and hopefully every thing will be ok.

    Your sense of humor is great - "black eye surrounded by family and friends".

    All,

    I worked on the book Saturday and Sunday. It's coming along nicely thanks to all of your support.

    Shirley, keep on kicking me in the butt when I need it!

    Alice, take care and keep keeping us posted.

    Hugs,

    Jackie
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Alice, bless you. You will remain in my thoughts and prayers.
    Shirley
  • tflowers
    tflowers Member Posts: 442
    edited June 2007

    ((((Alice)))) ((((hugs))))

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Jackie, consider you butt kicked! Since I can't find a "kick butt" picture just think about this bear coming after you if you don't keep writing.

    image
  • mcbeck
    mcbeck Member Posts: 29
    edited June 2007
    Shirley,

    You crack me up! How did you know how much I dislike "bears"? After all, I'm a Green Bay Packer fan and we never did care for "the bears"!

    Mary (Katz) knows - we've joked about it many times.

    Mary, if you're out there, go Cubs!

    I never said I didn't like "baby bears".

    Hugs,

    Jackie

    You're great
  • trumpkin46
    trumpkin46 Member Posts: 47
    edited July 2007
    Hi everyone,
    Thanks for your support re my eye. The doc says no decisions can be made until final path report is in, about 10 days from now (as they want it reviewed by an oculo-pathologist!! - I didn't even know about such a sub-specialty) but the likelihood is radiation to the eye socket....

    It's amazing what becomes 'good news'. First I was terrified that it was a tumour - and it is. Then I was terrified that it was BC - and it isn't...and that's good news and I am thankful....

    Alice
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Alice, please keep us updated. We're all pulling for ya!
    Shirley
  • mcbeck
    mcbeck Member Posts: 29
    edited July 2007
    Alice,

    I'm keeping you in my prayers, especially during the waiting period. We're all with you and you are not alone in this.

    You make an excellent point about the "what if it is" feeling, to the "thank God it's not" feeling (even though it is still something you have to go through).

    Make sure you keep us posted. I don't read all the threads but look forward to hearing from you (and Shirley, my motivator).

    Hugs Alice,

    Jackie
  • trumpkin46
    trumpkin46 Member Posts: 47
    edited July 2007
    Hi friends,
    the final pathology on my eye is in. I have a MALT lymphoma (mucosal acquired lymphoid tissue). Further reading on MALT tumours says that they arise in the borders between lymphatic tissue and other structures and there seems to be some tie to compromised immune systems (chemo, maybe?). the path report calls it a low grade tumour and the treatment, if confined to the eye, is radiation. I probably won't see the radiation oncologist until late August, early September - it's very inconvenient to be sick in the summer holidays. The rad onc will want to do a bunch of other tests to make sure it's no where else....CT scans and bone marrow, probably...
    Meanwhile, I look much better since the tumour was debulked, and likely will make it to my niece's wedding in Milwaukee in August...

    Jackie, how are you going?

    I appreciate the support on this discussion board.

    Alice
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Alice, it's so good to hear from you. I'm praying that's it's NO WHERE ELSE! The rad appointment will be here sooner that you want. And have a wonderful time at your niece's wedding.

    Please, please keep us updated.
    Hugs
    Shirley
  • trumpkin46
    trumpkin46 Member Posts: 47
    edited July 2007
    Hi friends,

    I had my second appointment back at the Cancer Clinic today - mask fitting and simulation CT scan - so the rad onc people can get the measurements right for the radiation therapy of my eye socket, which will start in about two weeks, every day for four weeks.

    I am SAD and MAD. I'm having a very hard time seeing myself as a patient again. I felt as though I had left all of that behind when I finished chemo (and now I'm a two year survivor of the breast cancer). The rad onc doc shook his head a bit - this is my third cancer in my life time - all different types - first, thyroid, then breast, now lymphoma - what next?? I think they think i've got bad genes, which makes me feel pretty upset at the idea that I've passed this along to my kids. My mother died at 63 of non-Hodgkins Lymphoma. This MALT type lymphoma I have in my eye socket is also a subset of NHL....
    Feeling pretty teary and depressed....AND I have a bad cold.....
    Thanks for listening....
    Alice
  • iodine
    iodine Member Posts: 4,289
    edited July 2007
    Aww, Alice, no way. Crap. My dh was dx'd twice last year. He refused to go for his colonoscopy saying he's not going for 3 in one year. I hear you!. So sorry.
    Hugs.

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