The Leukemia & Lymphoma Society - Fighting Blood Cancers
22 Replies Latest reply: Dec 4, 2010 8:12 PM by katesugarman RSS

2 years in remission - needing to connect

kelemill Registered Users
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I've been reading posts on here over the past few years, but not chiming in.  I am fortunate to have survived AML, dx'd in late 2007.  Had several rounds of chemo, then a stem cell transplant in 4/08 (my brother was my donor).  All in all, I'm doing quite well physically.   Emotionally, not so much.  I'm feeling really isolated and finding myself dwelling on the cancer experience.  I know some of this is normal, after reading other posts.  I haven't really connected with anyone else who's gone through this, and I think I really need to now.  I'm 45, married and mother of two sweet boys (13, 11 yrs).  One factor that may influence my ongoing sense of isolation and difficulty moving on MAY be that my hair has never fully returned.  Yikes!  I've done some research and found that busulfan, which I had w/ the transplant, HAS been known to cause this lovely side effect.  I know that I am lucky to be here, spending time with my family, but it does kinda suck to be baldish and menopausal, ya know?  I'm sure some of you can relate.  Thanks for any thoughts you might have.

  • Re: 2 years in remission - needing to connect
    rellaann Registered Users
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      All in all, I'm doing quite well physically.   Emotionally, not so much.  I'm feeling really isolated and finding myself dwelling on the cancer experience.

    Hi Kelly,

     

    Let me say I felt just as you wrote.  However, my time of reflection and emotional recovery was about one year post stem cell transplant.  I am an A type personality but found myself having anxiety attacks and I was unable to function well in unpredictable situations (I needed an environment which was predictable and in my control so that pretty much left me at home). I knew this was not normal for me so I sought help.

     

    Through my cancer support group, my facilitator gave me the name of a licensed clinical social worker.  I met with the therapist for about two months.  I was experiencing Post Traumatic Stress Disorder.  With my therapist I was able to let all the emotion and fears surface, I talked about subjects that my family did not want me to discuss.  I grieved my lost innocence, I sorted out my jumbled emotions, faced my longevity and mortality.  In the end, I adjusted to and accepted my cancer.  I have been in complete remission since November '09.

     

    I felt guilty that I couldn't shift into a new normal post cancer and be grateful for each new day and seize the moment with gusto.  I would listen to or read other survivors accounts of acceptance and moving on and for the life of me I couldn't figure out how they did that.  People would say cancer does not define who they are but for me, having cancer was traumatic and it was life changing and it is now a part of who I am.

     

    I still think of cancer daily - I guess enough time hasn't passed yet.  I worry about relapse.  My type of cancer is known to relapse however, I had the most aggressive protocol and hopefully I might be one of the new generation of being in the "cured" group.

     

    I strongly suggest either a cancer support group or some therapy to sort all of your emotions out.  Find a safe place to say it all and let the emotions flow.  Being honest was my best medicine.

    • Re: 2 years in remission - needing to connect
      kelemill Registered Users
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      Thanks, Relaan, I appreciate your feedback.  I did finally schedule an appointment with a therapist - its on Monday and probably well overdue.  I'm still looking for a support group.  It seems like the ones in my area tend to focus more on the diagnosis and active treatment stage.  I do feel that it would also be good for me to "give back" to people who are still in those scary stages, so maybe I should go to those kinds of groups on occasion to share my story of treatment success.  Thanks again!

  • Re: 2 years in remission - needing to connect
    cincykate Registered Users
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    Kelly,

    Hi , I'm glad you posted.  I too have been reading but not posting too often.  Our stories are quite similar.  I was diagnosed with AML July '07 and received a transplant Oct. '07 (brother donor).  I'm now 49 and married with three children, 14,19 &21.  I was lucky to go back to work after 9mos. and do pretty well physically (except for Chronic GVHD issues).  I like you was not lucky in the hair department.  I have had some sparse growth but not enough to even begin to look decent.  My Dr. said the alopecia is just another symptom of the GVHD.  He's only had one other female patient who had to deal with it.  So yes like you I feel a bit alone.  I've been wearing a wig for the last three years since my work as a teacher of young children requires a non-disruptive hair style.  The kids would probably do okay with it but the parents would probably be a little freaked out. :-)  It can be hard.  You are two years out and people expect you to get onl with life as usual.  I think on the outside I do that but as one of your replies stated... survivors have been through a traumatic experience.  No doubt it is hard to be faced with cancer and wonder if you will be there for your children, family, friends etc. and not stuggle somewhat emotionally. Thanks for posting. It's funny how we are comforted knowing others are dealing with the same feelings. Be good to yourself. You deserve it. You're doing great! I pray you and everyone on this forum finds JOY each day.

    Peace,

    Kate

  • Re: 2 years in remission - needing to connect
    RichardG Registered Users
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    Hi Kelly,

     

    Congratulations on your physical recovery. I was 42 when I was diagnosed with Ph+ ALL and had a stem cell transplant, from which I recovered nicely. But, as you know, it was tough at times, both physically and emotionally. My son was 18 months old then and, with a wife who worked also, I was quickly thrust into the role of working at my job and also being a half-time caregiver for a rambunctious toddler. I was usually so busy and exhausted that I often wondered if I was going to make it. But looking back, I think it was actually a blessing. I never had time for much self-reflection, knowing (or choosing to believe) that my family needed me. I think if I'd had more time to myself, I would have been overcome with stress and worry about whether I would ever recover? or would the disease come back? would I have to be isolated in the hospital for weeks or months again? or ... My hair did come back right away though. I agree that if it hadn't I would have been very unhappy and stressed, even though it's socially fine for a man to have a bald head. (It was not a good look for me)

  • Re: 2 years in remission - needing to connect
    nursebaby Registered Users
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    Hello, Kelly.  I so identified with you in reading your initial post.  It was not very long ago that I was smack in the middle of dealing with that type of feelings myself.  I somehow got completely blindsided by it when it happened - never saw it coming - and it put me into a state of almost-paralysis for several days.  I felt like I had NOTHING left, and felt like I was in tears 24/7.  Blessedly, I was lifted up by some dear, dear people who saw that I'd hit my low point, and they literally took care of me - hot soup (my favorite comfort food!), meals, late-night talks, cards, just whatever they could do to help.  I don't know what I would have done without them, because I was flat out of gas.  I happened to be reading a book from the library at the time - I think it was "The Chemotherapy Survival Guide", if I'm remembering right, and something I read in that made a big impact on me.  It said that when you're first diagnosed and going through decisions, procedures and treatments, you're basically going right to battle - a war, really.  Certainly there is the initial shock and sadness of hearing "cancer", but essentially, there's not a lot of time devoted to the emotional side of this disease.  You're too busy fighting it to give in to all the rest of the pieces, and rightfully so - your goal, after all, is to defeat the beast, right?  However, AFTER active treatment is done, that stuff can (and oftern does) come roaring up, and you don't have the distraction of constant visits, needles or what-have-you anymore.  That other stuff didn't go away, Kelly - it just got stuffed, out of necessity.  Eventually it surfaces, and then all heck breaks loose (it sure did in my particular case).  Fortunately, once you get through that crap (and I do mean THROUGH it, not around, over, under or beside, but through), it does in fact get better.  It was terrifying to me, because I honestly was afraid I was losing my mind - but it was temporary.  Talking it out with those you trust helps, sharing on this board helps (and a good therapist, even if just for a short time, is very much worth the time and money).  Please let us know how you're doing.  Blessings, Nursebaby   

  • Re: 2 years in remission - needing to connect
    barbmaddox Registered Users
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    Hi Kelly,

     

    I've been in remission about 18 months, and understand your feelings. I, too, was blindsided by the emotions that greeted me in this new chapter of life, and dealing with the guilty feelings for not just being grateful and happy that I survived. I am 45 like you. At 43 I was diagnosed with Hodgkin's lymphoma NS, stage IV-B. I had 8 mos of aggressive chemo. I journaled thru my experience, and even ended up publishing a book on it this year (Mashed Potatoes and Gravy: A Woman's Journal through Surviving Cancer). My life was supposed to be spent as this new author, ready to take on the world and help others where I could in their battle through cancer. Except it hasn't quite happened that way, and my emotional turmoil and depression has really stopped me in my tracks at times. Things were also complicated because as I went into remission in early 2009, ready to embark on a writer's career, my husband lost his job and we had to move away from all my family and friend network to accept a new job. It was (has been) excrutiatingly difficult, to say the least. I am just finally starting to reach out to others and talk about these feelings. I would love to connect with others as well, and I'm seriously thinking about writing about this topic in my next book. I don't ever remember hearing about this "let down", and my onc. never brought this up, even though I mentioned to him these feelings. It was me who finally asked him for a referral to see a psychotherapist ... mainly I needed help in coping with recovery and having to move thousands of miles away in the midst of it. So, I share your disconnect with what should be an exhilerating, special time for us. I have faith, though. And I know in time, with sharing stories and connecting with others in similar circumstances, it will get better. I just have tremendous faith in the human spirit, and in simply being human. I hope to hear from you again. In the meantime to you and others who wish to connect to me personally, please feel free to visit my web page, www.barbmaddox.com. Peace to you all.

  • Re: 2 years in remission - needing to connect
    Labelser Registered Users
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    I had a BMT in October of 2007.  I too still dwell on my experience which was long and hard (very sick had to be in medically induced comas twice due to lung problems.  While I'm feeling fine now it took me a long time to get my strength back.  I spent 2 months in Vanderbilt then 7 months at MD Anderson.  I feel like everyone else moved on (during that time 3 friends got divorced).  Some times I feel very lonely.  I understand how you feel. I'm 49 with 2 boys 14 and 12 and a 9 year old daughter.  Oh and my hair sucks.  I was also told that thin to little hair was a side effect of one of what seems like hundreds of drugs I was given.  My doctors has given me antidepressants but they haven't done much.  I wish I could give you some advice with deep meaning.  All I can say is remember you're a miracle.

    • Re: 2 years in remission - needing to connect
      kelemill Registered Users
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      Lori, thanks for your reply.  So you're coming up on an anniversary too.

      Congratulations!  I'm just about 3 years since diagnosis and 2 1/2 since

      transplant.  It sounds like I had a MUCH easier time of it than you did.

      Are your lungs okay now?  Any lingering/long-term effects that you know of?

       

      It's so funny (or actually, not) that you wrote about sucky hair.  I'm all

      over the place trying to make peace with my !!@@## hair.  I actually ordered

      a new wig today.  I haven't been much of a wig person so far, but I'm tired

      of looking weird.  I feel like maybe I should either be bold and bald or go

      with wigs/scarves b/c what is there is just not good.  What with menopause,

      the hair thing plus various and sundry aches and pains, I kinda feel like I

      turned into an old woman before my time.

       

      However, I'd much rather be here with my family than not be here, so I guess

      I just try to have the best attitude I can day by day.  I have gone back to

      counseling (which I hadn't done since I got sick) - both individually and

      with my husband.  It helps some!  And yes, antidepressants too.

       

      Thanks again for writing.  Keep in touch, Kelly

  • Re: 2 years in remission - needing to connect
    jordy922 Registered Users
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    I also can relate to what other have said in this post.  I am 3 years since diagnosis of DLBCL and 2 years and 9 months in remission.  This is the first year I didn't dwell and get upset on the anniv of the day I got diagnosed (Oct 3rd).  Although I will always celebrate my remission years.  I am not constantly feeling my neck or breast for lumps anymore, and I dont think about my experience every second of every day anymore.  Part of it could be that I have started a new chapter in my life, I moved to a new city, bought a house, got a new job, getting married next month and maybe leaving the environment of where everytihng happened helped, but cancer doesn't stop following you because you move away, so I equate it to time.  Do I not think about it at all, NO of course not.  I still think about it a lot, but just not as often.  My hair came back but my sex drive didnt and I'm only 28.  My poor fiance.  I gained a lot of weight during treatment and JUST now started losing it, the after effects of cancer will follow me forever, but time, friends, family and this discussion board will make it a bit easier.

  • Re: 2 years in remission - needing to connect
    debwitter Registered Users
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    Dear Kelly,

     

    I totally understand how you feel.  Oye, cancer survival, hair loss and menopause to boot - sounds like a really terrible mix.  I went through menopause while my daughter was going through treatment and it was awful. 

     

    So, I would like to give you some remedies that may help.  A friend of mine received a kidney transplant.  During this process all of his hair fell out.  He asked his doctor about this and the doctor told him to go out an buy a bottle of Biotine. (a simple B vitamin) My friend did this and his hair grew back beautifully.  Also at the health food stores there are mixtures of supplements for hair and nails. 

     

    Next, Calcium and magnesium requirements are higher for women at your age.  Here is an article about this http://www.umm.edu/altmed/articles/magnesium-000313.htm   Magnesium also plays a key role with mental outlook. 

     

    Lita Lee has a PhD in chemistry and has a very large website. She recommends thyroid supplementation along with progesterone.  She recommends Dr. Ray Peat who formulated a completely natural form of progesterone. I take this product and it has made a huge difference in my life.  I am sleeping for the first time in seven years. Truly restful sleep. 

     

    Wishing you success in health,

     

    debwitter

  • Re: 2 years in remission - needing to connect
    melmart89 Registered Users
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    Hey, I PROMISE it gets better! Many days I don't even think about the fact that cancer screwed up a lot of things in my life.  Tuesday is my 12 year anniversary of diagnosis of AML.  You'll be able to forget it soon.  Maybe not for long, but you will be shocked once you figure out that its been a while since you thought about it.  OH! And never underestimate the power of an anti-depressant.  I took one for about 5 years but felt strong enough 2 years ago to talk to the dr about stopping it.  Under the supervision of both a therapist and my dr I stopped taking it and feel really good these days. God bless as you recover!

    • Re: 2 years in remission - needing to connect
      julindy Registered Users
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      12 years? WOW. That makes me feel great. What a wonderful number of years of recovery.. Congratulations. There are good results out there! Judy

       

       

       

       

       

       

       

       

       

       

       

       

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      • Re: 2 years in remission - needing to connect
        Labelser Registered Users
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        Does it really get better?  Yesterday I found out that my treatments and/or antibotics have caused irreversible kidney disease.  I'm so depressed and have no one to talk to about it.  At this point it isn't life threatening.  It seems like the effects off this disease will continue follow me everyday for the rest of my life.  Has anyone else had this problem

        • Re: 2 years in remission - needing to connect
          katesugarman Registered Users
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          I remember your name well because you needed 3 rounds of chemo to get into remission if i remember correctly. My sister failed 2 rounds of induction but they are taking her to transplant while not in remission.

          I am no genius on the kidneys but i am a family doctor in a clinic for the poor. Lots and lots and lots of my patients have chronic kidney disease usually due to their diabetes, high blood pressure and then some have HIV on top of that. the kidney disease does not seem to interfere with their daily life or activities. Do you have any symptoms? I am sure you have been told not to take Motrin, Aleve, Advil, etc.

          sorry I do not have more advice to offer. all the best, Kate

          • Re: 2 years in remission - needing to connect
            Labelser Registered Users
            Currently Being Moderated

            Kate

             

            Thanks you make me feel sooooo much better.  This kidney problem has been going on since I came back from MD Anderson.  It's just now that the doctors are telling me about it.  That kond of took me by surprise.  I'm sure I'll adjust after the initial shock.  I'm not having any symptoms right now but I'm just scared.  How is your sister?  I didn't take Advil much but certainly not anymore.

             

            Lori

            • Re: 2 years in remission - needing to connect
              katesugarman Registered Users
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              My sister feels fine. The whole thing is surreal. She has never felt sick from the leukemia. I happened to notice that she lost a huge amount of weight without dieting, so I told her to go to the doctor. (She had a big belly so she was actually looking better).2 rounds of induction barely made her feel sick. some diarrhea, some weakness, but nothing severe. She continued to walk and eat the house down. So, after failing the 2 inductions, the choice was clofarabine or straight to transplant. her doctor chose transplant so she starts in a week. I think they were biased towards transplant since i am a perfect match. Keep me posted about your kidneys, Kate

    • Re: 2 years in remission - needing to connect
      willowbayfarm Registered Users
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      Hi Melmart,

       

      Wow, 12 years, that's awesome. Did you have a transplant, or go it with chemo alone?  Thanks for stopping by to give others hope that there is a future out there without being accompanied by the specter of leukemia every step of the way.

       

      - WBF

       

       

       

      • Re: 2 years in remission - needing to connect
        melmart89 Registered Users
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        Chemo only.  1 round of induction (Idarubicin and Ara-c) and 5 rounds of maintenance (ara-c).  From november to april, once a month with a few detours for kidney stone surgery and pneumonia.

        • Re: 2 years in remission - needing to connect
          willowbayfarm Registered Users
          Currently Being Moderated

          Hi Melmart,

           

          That's terrific!  Well, I mean, the pneumonia and kidney stone stuff sux, but I sure like the rest of your story!  I'm 10 years behind you, coming up on two years in remission.  Still have the impulse to knock on wood when I say it out loud...

           

          Keep it up and thanks again for checking in.  We need to hear those good news stories here.

           

          - WBF

           

          • Re: 2 years in remission - needing to connect
            kstrickl Registered Users
            Currently Being Moderated

            Hi,

            I'm new to thi site and read your discussions.  Very good to hear I'm not the only one worrying about relapse.  Everyone tells me that positive attitude is everything, but I still feel that every time I feel an ache in the hip joint, a cold sneaks up on me or I have shortness of breath, that maybe the old "foe" is back.  I'm 2 years of remission from Large B Cell stage IV.  I also thank everyone for their inspiring ideas. Looking forward to hearing more from you about how things are going.

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