Understanding Survivors

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Permalink Reply by Victoria Tashman on March 28, 2009 at 10:14pm

It's so true Micki! I'm 5 years out but always have the fear of reoccurrence in the back of my mind. Lately I've been thinking about next February when I'll complete my cycle of Tamoxifen. Maybe I'll lose the weight I've gained, but what about my cancer? Will it come back. It's scary even to see these words typed out! Then, I push it out of my mind and say, "I'll think about it next year." But, before you know if, next year will be here! Thanks for listening.

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Permalink Reply by Micki Huston on March 28, 2009 at 11:13pm

Victoria Tashman said:

It's so true Micki! I'm 5 years out but always have the fear of reoccurrence in the back of my mind. Lately I've been thinking about next February when I'll complete my cycle of Tamoxifen. Maybe I'll lose the weight I've gained, but what about my cancer? Will it come back. It's scary even to see these words typed out! Then, I push it out of my mind and say, "I'll think about it next year." But, before you know if, next year will be here! Thanks for listening.

It is a pleasure, always, to listen to another survivor. 5 years out...look how far you've come! Life is grand. The good news is that IF the cancer ever comes back, chances are it can be sucessfully treated again....or at least controlled. There have been and continue to be so many advances in breast cancer treatment that we need to start thinking of long term care insurance. (smile) After all, we COULD die of old age.

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Permalink Reply by Pina on May 13, 2009 at 7:26pm

I couldn't agree with you more,as I am struggling with its overall ramifications right now as we speak. I am not as far into the process as you are - in fact, this past March 25th and April 11th were the 1st anniversaries of my diagnosis and lumpectomy. December 11th, 2009 will mark the 1st anniversary of my hysterectomy and salpingo-oophrectomy (removal of fallopian tubes and ovaries), which had to be done as it was my only option to prevent a b.c. recurrence. Tamoxifen was not an option for me because my cancer was hormone driven and the drug is a hormone/antihormone that could have given me uterine cancer instead.....In one year alone then, not only have I had to go through an endless array of sometimes painful diagnostic procedures on both breasts and in my uterus, but I have dealt with two surgeries, 4 weeks of radiation treatment - with fibromyalgia, whose effects add to the adverse effects of radiation treatment at its onset, coping with an exhausted immune system, instant menopause without hormone assistance obviously, and the scars...and the mounting rage I feel....and the desire I have to throw everything away...and the mounting impatience I have with everything and everyone, for my fury at my 25lb weight gain, for how life seems pristeen for some but not for me. Why?

My husband is worried. He actually sent me here since I have had literally no desire to seek support from any b.c. survivor's group since all of this started and I am becoming increasingly more enraged and distancing than before. My reaction to the group is actually quite unlike me as I am usually the first person to join the support bandwagon but this time? I don't know. I guess I am just not "feelin' it", as the kid's say. I joined a local group a few months ago and couldn't stand any of the women. Perhaps it was because we all were in our own version of shell shock from our cancer experience or perhaps it was something else that I cannot adequately articulate, but either way I couldn't stand any of them. Talking to them felt like I was talking to a brick wall...I felt no connection to any of them....it was as if we were all in our own cocoons. This was an oddity for me as I get along with everyone; have been in groups as a member, a facilitator and co-facilitator, but there? I was turned off. Now I am trying to reach out again.

Everything you both wrote could have been said by me. I think about the what ifs quite a lot...think about the cruel irony that I would be diagnosed with breast cancer at 52, the very same age my mother died from lung and bone cancer in 1975, think about the whys and whatfors. I try to be positive and am quite proactive for the most part...I am an event planner for an NYC college and have brought the American Cancer Society to the schools several times....I even won an award from the Student Government Association for sharing my experience. But lately, I feel adrift and tired, worn out and drained...little things set off chain reactions that are serious...Add financial problems to this...the need to sell my home, move, etc...and there I am. Raging.

Cancer is a loaded issue for me obviously. Resentment is looming larger than life.

Thanks for listening as I struggle to find the words and make sense of it all.

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Permalink Reply by Micki Huston on May 20, 2009 at 8:46am

Pina said:

I couldn't agree with you more,as I am struggling with its overall ramifications right now as we speak. I am not as far into the process as you are - in fact, this past March 25th and April 11th were the 1st anniversaries of my diagnosis and lumpectomy. December 11th, 2009 will mark the 1st anniversary of my hysterectomy and salpingo-oophrectomy (removal of fallopian tubes and ovaries), which had to be done as it was my only option to prevent a b.c. recurrence. Tamoxifen was not an option for me because my cancer was hormone driven and the drug is a hormone/antihormone that could have given me uterine cancer instead.....In one year alone then, not only have I had to go through an endless array of sometimes painful diagnostic procedures on both breasts and in my uterus, but I have dealt with two surgeries, 4 weeks of radiation treatment - with fibromyalgia, whose effects add to the adverse effects of radiation treatment at its onset, coping with an exhausted immune system, instant menopause without hormone assistance obviously, and the scars...and the mounting rage I feel....and the desire I have to throw everything away...and the mounting impatience I have with everything and everyone, for my fury at my 25lb weight gain, for how life seems pristeen for some but not for me. Why?

My husband is worried. He actually sent me here since I have had literally no desire to seek support from any b.c. survivor's group since all of this started and I am becoming increasingly more enraged and distancing than before. My reaction to the group is actually quite unlike me as I am usually the first person to join the support bandwagon but this time? I don't know. I guess I am just not "feelin' it", as the kid's say. I joined a local group a few months ago and couldn't stand any of the women. Perhaps it was because we all were in our own version of shell shock from our cancer experience or perhaps it was something else that I cannot adequately articulate, but either way I couldn't stand any of them. Talking to them felt like I was talking to a brick wall...I felt no connection to any of them....it was as if we were all in our own cocoons. This was an oddity for me as I get along with everyone; have been in groups as a member, a facilitator and co-facilitator, but there? I was turned off. Now I am trying to reach out again.

Everything you both wrote could have been said by me. I think about the what ifs quite a lot...think about the cruel irony that I would be diagnosed with breast cancer at 52, the very same age my mother died from lung and bone cancer in 1975, think about the whys and whatfors. I try to be positive and am quite proactive for the most part...I am an event planner for an NYC college and have brought the American Cancer Society to the schools several times....I even won an award from the Student Government Association for sharing my experience. But lately, I feel adrift and tired, worn out and drained...little things set off chain reactions that are serious...Add financial problems to this...the need to sell my home, move, etc...and there I am. Raging.

Cancer is a loaded issue for me obviously. Resentment is looming larger than life.

Thanks for listening as I struggle to find the words and make sense of it all.

Pina,

As I read your post, I discovered how much we have in common. I, too, had a hysterectomy and bilateral SO, but mine was one year before my breast cancer diagnosis and it was done because I had uterine cancer. I was 51. Imagine my shock when one year later I was diagnosed with breast cancer (I was 52). Menopause, cancer treatment and other chronic medical conditions consumed my life for a while. Now, nearly 8 years after my breast cancer diagnosis, I am "cancer-free" according to my oncologist, and living a good life with a new perspective of a cancer survivor.

My journey began with intense fear and anger, and has now turned into gratitude and a simpler life. I also experienced great financial difficulty, but was able to find resources for assistance. If you need specific info on financial assistance, I may be able to refer you to organizations that can help.

Kudos to your husband for sending you here. I understand your feelings about going to a support group. When you are feeling angry, it is hard to listen to someone chirping positive attitude at you. I'm glad you came here to this place of understanding and empathy. Just get it all out. We know exactly how you feel.

You mentioned feeling "shell shocked." Shell shock is a term that was used to describe the symptoms and behavior exhibited by soldiers returning from battle, now known as post traumatic stress syndrome. Actually, a survivor of any severe emotional and/or physical trauma may suffer from this as well. The following link takes you to information about breast cancer and post traumatic stress. I believe we all have it, to some degree.

http://www.blisstree.com/articles/breast-cancer-can-cause-post-trau...

Radiation, menopause, recovery from surgery, and depression (we all feel it to some degree after diagnosis) can all cause or contribute to fatigue. I know the feeling of frustration with not being able to continue doing things at your "normal" pace. Your energy level will improve with time. I understand your impatience too, because I have always felt that, for myself, being sick is a waste of my time. I came to the conclusion, after much resistance, that I had to reach deep into myself to muster all the patience I could find in order to deal with all of this.

I hate this disease. You said that you wonder how life is so pristine for others and not for you. I had the same thought, carried a bit further: I try every day to live a good, useful life. So, why did I get cancer instead of the murderers and other criminals in the world? The answer is that I didn't have the choice to make. Anger and worry were taking up far too much of my time and energy.

I also hated support groups. I didn't want to hear any chirpy optimist telling me that I should see the world through the proverbial rose colored glasses. After all, I was a reasonable adult and a medical professional. I could manage this on my own. The truth is that I needed help. I did what you are doing now; I posted to forums and was relieved to connect with others who experienced so much of what I had experienced. For some, groups are a great source of support. In this age of electronic communication, we are fortunate to have access to each other on message boards, blogs and forums. I am glad you came here. Together, we can work through anything. You are certainly not alone.

Pina, you have so much going on in your life, now. I hope you will return here to connect with us and know that we support you. I won't tell you to paste a smile on your face and pretend that life is wonderful. I want to suggest, however, that you consider the idea that this is a temporary situation for you and that gradually things will improve.

Oh, and by the way..........congratulations on your one year anniversary!

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Permalink Reply by Norma Morey on July 31, 2010 at 10:25pm

Congrats on 7 1/2 years. I'm sure that you have moment of sadmess some of the timee. I think we will all that for time to time to tell.

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Permalink Reply by shy violet on September 10, 2010 at 3:10pm

dear micki...i am new and just saw your post...i have always felt that the hardest part of cancer is people...and how we seem to take on the caretaker role at times...i joined today as there is a loneliness that only other survivors know of and worry...i am two time bc survivor...look forward to hearing from you...

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Permalink Reply by Lori Murray on February 16, 2011 at 1:23pm

Hi...I feel like I am just getting to that point...My journey began April 2010...lumpectomy in June, radiation in Nov...and plus you all know of all the tests and scans in between all of that...I am E+...started out as stage 1, 2 cm no nodes...the 2 week path showed some nodes +..so the surgery was scheduled..all along looming in the back round was on "tiny" spot on  my sternun that they wouldn't leave alone, but didn't think it was anything at my early stage...turns out it was positive.  Through a PET scan it was in fact only in the one area, so it was radiated along with my breast...I am on long term medical care...at first I was given lupron to shut down my ovaries,, since then I had them removed...Now I am up to monthly infusions for my bones and PET scans every 3 months:(

     I feel well and look fine, I am having trouble moving on...waiting for the next ball to drop. so when people ask how I am, I am thinking in my head "I have cancer"...

     Any suggestions?  Oh yea I tried a clinical support group...I couldn't get out of there fast enough. I thought I would enjoy talking to other people...but they were very intense and negative...Lori

 

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Permalink Reply by Lisa Grey on April 14, 2011 at 10:09am

Hi, Lori:

What helps me is doing healthy things that increase my chances of avoiding recurrence. Yoga has helped me a lot. It relaxes me, and it helps detox the body. Cooking healthy helps me feel a sense of control, too.

 

Lisa

www.pinkkitchen.info

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Permalink Reply by Lori Murray on April 14, 2011 at 5:11pm

Hi Lisa,

     Thank you, that is exactly what I am doing.  I started yoga about 6 weeks ago and I was going like it was my job, then I hurt my back.  It is better now so I am taking it a bit slower (something I am not used to doing)  It really taught me how to breathe again.  I love it.  I have always been a healthy eater but now I am taking extra care...lots of veggies, I pretty much vegan now almost no sugar either.  You put it in a way exactly how I feel, more in control. I have been getting back to my walking/running and we are walking in The Avon walk in October, so I must be ready for that.

Thank you so much for responding,I hope to talk to you again...

Lori

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Permalink Reply by Lisa Grey on May 13, 2011 at 12:33pm

Hi, Lori:

How's the yoga coming along?

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Permalink Reply by Lori Murray on May 16, 2011 at 5:05am

Hi Lisa!

Thanks for asking.  I am loving yoga!  I am getting my strength back every day, I go several times a week. What are you up to?  What's your story?

I just got back from a weekend in DC, my daughter graduated with her Masters in Public Health, she would like to work with cancer patients (where did that come from?)  Brit is the one who encouraged me to start yoga and she is full of healthy eating ideas. She also just finished her 200 hours of yoga instruction!

Wow, a much better time then last year , as it has been 1 year since my diagnosis.  I look forward to hearing from you.

Warmest,

Lori

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Permalink Reply by Lisa Grey on May 16, 2011 at 8:49am

Hi, Lori:

I love yoga too. I'm 3 years out, and I have a 12 year old daughter. She loves healthy food and helping me with Pink Kitchen (I have a booth at certain events, and Gabriella occasionally comes with me :)

Your daughter sounds great!

Lisa

www.pinkkitchen.info

 

Lisa

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