Monday, January 25, 2010

Breast cancer at 38 with Fog & Depression [From Susan M., Kansas City, MO]

Your book was amazing and long overdue. For me it was like a huge sigh of relief.

Your story spoke to me and I couldn't put the book down. I am also a strong girl, went to all my tests, diagnosis and treatments alone. I initially didn't tell my family, gave my doctors my cell phone number, and demanded an appointment for my test results so my doctor could officially diagnose me face to face. I did not want to live the rest of my life remembering where I was when I took my cancer diagnosis via a cold phone call.
I never knew why I did so much alone until much later when I realized I did not want people to identify me with being sick. That person was not me. I loved your statement that Cancer didn't define me, but it defined my relationships. That was my life. I have since banned people from saying "You are strong.... ", and "God doesn't give you anything you can't handle." So what happens if you're a weak person? Those statements always pissed me off. People really have no idea.

Anyway, the emotional aspects were tough enough. Absolutely no part of my life prepared me for sitting in a group chemo room at age 38 poisoning my body. I remember walking around that first day thinking - do I look different? What would people say if I told them I just had four hours of chemo? The surprising part to me is that I was at the hospital daily or weekly for one entire year, and no doctor or nurse ever warned me about cognitive issues.

Then the never ending radiation was tough - that machine was so sterile and scary. AND I had to bring my kids with me everyday for treatment as it was summer. My daughters had just turned 5 and 6 and would sit outside with the nurses talking to me on the microphone watching me on the monitor. Can't wait to ask them later in life what affect that had on them.

During that year of surgery, chemo, radiation I continued to work out 3 and 4 times a week. I was determined to treat my body well, take control where I could. Amazingly, it all crashed after the treatments for never ending months. I never understood what happened until I read your book. Until then I had never been depressed, and because I had major life crises simultaneous with cancer I had assumed my fog and depression were just the stress of everything else on my plate - financial, unemployment, divorce, cancer.... with no family in town.

I was forgetful, would have to really focus to keep myself on task. Mid-sentence, I would either forget a word, get stuck on a word, or simply stop talking because I could not remember what I was saying.

Nine months post-chemo I went on a trip with girlfriends and could barely focus on a conversation or events. I dreaded going because I knew I was not myself. Then at night I would cry ALOT which was very unlike me. The post-chemo was far worse than actual chemo for me. It all just hit me and never left. I was going on job interviews, talking to recruiters because I had to, but looking back I was messed up.

I am two years from diagnosis this month and I finally feel like myself. I would say the fog has lifted 90%. The tamoxifen seems to have no effect on anything for me, thankfully.

The most telling part of my chemo fog, is when reading your book how long it took me to remember where I put my paperwork so I knew what chemo drugs I took (cytoxan and docetaxel)!

So very long story for why I am so grateful for your book. Validation is always so helpful. Doctor pre-warnings may have been nicer, but... I am alive and that is the most important part. And... I would probably go through it all again to avoid the radioactive multiple nipple injections with no pain meds. With all our modern medicine, just who thinks strapping a person to a table with needles is humane?

Keep writing and researching,
Susan

23 comments:

  1. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

    Alena

    http://ovarianpain.net

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  2. Your blog is beautiful and you are an inspiration! Much thanks to all you do.

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  3. I will be two years out next May from the final radiation treatment for breast cancer. I am going to read your book. I was not made aware of the chemo brain by the nurses or Drs. My brain was in a fog all through the chemo. What the chemo didn't do the radiation finished it. I had a good attitude at the beginning, but felt like someone else was living in my body. I look at my pictures before breast cancer and it's like looking at an old best friend. I missed myself. Thrown into menopause didn't help. I'm 54. I had reconstruction surgery a year after radiation. That was hard and a set back for chemo brain and emotions. But feeling better and love my new breast. If you've never had chemo, radiation you can't understand the lonliness. Friends and family were very supportive, but when the treatment was over we all thought that I'd be feeling good again. I still tire easily, and the brain fog comes and goes. I am definitely going to read your book. Excited to understand and feel it will be helpful. Thank you for addressing the after math of breast cancer.

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  4. Excellent blog and article, my partner is going through the fog at the moment, it is very testing for both of us.

    I just hope you keep the blog up and back up your xml and so you do not loose any of it.

    Your blog is guide and help for others.

    Regards John

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  5. Thank you, John, and best wishes to your partner.

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    1. Your blog is so so beautiful and your writing is different from other it is really inspirational. Thanks dear you are right women who is very strong still when hear about breast cancer... after some time looses her power due to loneliness, lack of trust and support from family and love.

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  6. Idelle,

    I have one round of chemo left to go, April 26th and i am living in pure hell with my brain and my emotins. I left my husband and came back, i am trying to run a business and I dont have anyone who knows what i am talking about when i say that my brain does not work right now, its broken...i cant remember telling people the same stories over and over again because i cant remember things...i feel ugly inside...i hate myself most days...nothing makes my smile or laugh right now and i am the strongest woman i know. if the chemo does not kill me then noting will...Julie

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  7. Oh Julie, please hang in there! Of course you're going through hell, chemo IS hell. You're in the worst of it right now, but the further away you move from treatment, the better you'll feel physically and emotionally.

    It may help you to know that for most people, the fog (all the symptoms you describe and more)lifts within a few months after completing treatment. That very likely will happen for you. Sending you my very best wishes and thoughts...one round of chemo, and you're out of there!!

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  8. Hopelessness, is the word that best describes my four months on chemo. I have just one more infusion to go, and yet somehow I fear that I will never be the same. Maybe I need to hear more success stories. Would love to chat with someone who's been where I am.

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  9. I was diagnosed with a stage 2 triple negative breast cancer 11 months ago. I underwent the most rigorous chemo. I had taxol first for 4 months which was not too awful. but then I had 8 weeks of adriamycin and carboplatin. I was admitted to the hospital 4 times with the adriamycin and spent a total of 3 weeks there.
    I apparently set a new record for hospitalizations on this regimen - my white count was literally zero so I was in isolation part of the time. I live alone and my only child lives far away, so I was alone most of the time, both in and out of the hospital.My brother, who lives locally, spent most of the winter in Arizona with friends. (We are both retired). My friends always say "Oh you're so strong, I'm not worried about you" and therefore I got essentially no help - no
    meals, no housekeeping help, little company. I spent most of my hospital time alone.
    Then I had surgery - luckily just a small lumpectomy - then 7 weeks of daily radiation.
    That ended about 6 weeks ago and I seem to get more and more exhausted. Now my brother, my only surviving sibling, has been diagnosed with stage 4 pancreatic cancer. I put my resentment for his neglect of me while I was sick behind me at first and spent 10 days with him in the hospital - 12-15 hours a day, running errands, talking, liaison to his children etc. He is a physician and his room is constantly crammed with docs, nurses, friends, his children who all came home. Everyone is falling all over themselves to help him and his children. ANd now slowly resentment is seeping in. I am so angry that I got so little help while I was sick and resentful that everyone seems to have forgotten already that I was so sick and still am exhausted and depressed after my treatment. Even his children (all grown) keep asking me to do things for him and them. I got so angry today that I left the hospital mad at everyone. And now I feel guilty that I did that - I realize that my brother's disease is worse than mine - he is definitely terminal - whereas there is hope for me. But I feel like I haven't gotten any strokes or even appreciation from anyone and I'm so depressed I'm verging on suicidal. The guilt, the exhaustion, the sadness - it's all too much.

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  10. Dear Anonymous,

    Please don't do anything rash. You are a worthwhile human being who is deserving of love and respect.

    Please do me this favor: contact your closest friends and relatives (and your doctor) immediately and tell them how depressed you are and ask for help.

    It may be that they've misinterpreted some signals from you. Perhaps they think you don't want their help and they're trying to be respectful of your wishes. You may be surprised to learn that they've wanted to be there for you all along and have been waiting for you to allow them in.

    Also know that you are part of a community that cares about you. I would be happy to call you and talk with you. Just send me an email at IdelleDavidson@gmail.com and let me know how I can reach you.

    Hang in there. There are happy moments and blessings in life too. Right now it may be hard for you to see them, but they are there. I promise.

    Thinking of you.

    Idelle

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  11. Dear Anonymous
    Please do what Idelle suggests - contact a physician, or family member or friend and tell them that you are depressed, and ask for help. I don't know you, but I know that when I was going through treatment, for myself, I sometimes didn't ask for help, I put a brave face on things, and I didn't always want to bother people. I found out though, that you have to tell people you want help.

    So often others want to help, but don't want to intrude - so they tell you you're strong and wait for you to disagree. They don't want to insult us with offers of help. And so we build walls around us that can be so painful.

    So please get in touch with someone. And know that there are lots of us out here who've been through this too - it's exhausting and it's anxiety provoking, and it makes us sad. But it's worth getting up every day to see what's new.

    All the best
    Elaine

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  12. Anonymous,

    I would also strongly encourage you to contact the Cancer Support Community, which has since merged with Gilda's Club and the Wellness Community. The CSC helped me deal with my own fears and feelings of loss after being diagnosed with cancer and I believe it can help you as well. This link will help you find a chapter near your home:

    http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Find-a-Local-Program

    And to Elaine, thank you for your kind response to Anonymous. I appreciate it so very much.

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  13. As I sit here, barely able to continue reading through tears, I am grateful for this blog and for your generous, I heartfelt writing, Idelle. And for all of you who've gone through this journey...thank you for sharing.

    Currently struggling with long-term side effects including chemo brain, depression, fatigue, pain, GI upset, hot flashes, balance issues and more chemo brain - trying to address issues one at a time with my Onc team - I was dealt a heavy blow. Excited to begin a research study on Breast Cancer Survivor Cognitive Impairment, I was denied time off by my (physician!) bosses who find the one-morning-per-week x 5 week commitment "unacceptable" & feel they've been more than accommodating with my health issues. I was informed I must be in the office during business hours (even though 80% of my job as Practice Manager is HR, financials, credentialing, contracting, behind-the-scenes work that is easily done after hours or from home without interruption). I am working on a written reasonable accommodation request (for flexible hours, working from home if recovering or having bad day, etc.) as I have sleep interruption, neuropathy, hot flashes, nausea & diarrhea most mornings that prevent me from working early AM hours, plus I have more energy & concentration "spurts" in the afternoons (things move in slow motion & take 3-4 times as long for me to complete IF I am able to, but later in the day, I feel a bit "brighter" even though I could nap at an second). Oh, the JOYS of chemo that no one warned me about!!!!

    I dread asking for accommodation as I know m bosses feel I should be "back to normal" by now, but the more I push myself, the more side effects are "triggered". Being told I must physically be present in the office (even if I am locked in my office, dizzy & laing on the floor!) during business hours - a point brought up at my review last year - "attendance has been a problem. You took too much time off for cancer treatment" - even though I worked through chemo, taking a few days off after each treatment (4 weeks off after surgery, 6 weeks off once cumulative effects of radiation knocked me out).

    Sadly, I cannot change jobs as I have excellent medical insurance & a staff that protects me & tries to cover for me when I am forgetful or cannot concentrate. I cannot let my bosses know the extent of my brain dysfunction or I'll be fired....just have to say long term side effects (I've already been told "if you're too sick to work, we'll find someone who's not"). I am no longer the sharp, quick-thinking, proactive multi-tasker with one eye on the future & the big picture always in sight. I am now partially numb, irritable, forgetful, sloppy, leave 5 projects partially completed, have no off-the-cuff answers for anything without looking at my notes to see where I left off and I would rather stay in bed where my weaknesses won't be exposed.

    Yes, Survivor Sisters, you are not alone. I am here suffering & struggling most of the day, every day. Trying to stay above water & under the radar so I don't get fired for being one big malfunction after 17 years in the field & 10 on the job. I want to scream "NO FAIR!!!!" but I feel selfish. I got to live...but it's someone elses's life as this is not me.

    Praying for all of you & wishing you blessings.

    SoCal Survivor

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  14. Dear Anonymous,

    It breaks my heart to read your last line: "I got to live...but it's someone else's life as this is not me." You have no idea how often I've heard variations of those same words. In our book, I write about my friend Susan who tells me, "I can handle the cancer. I want my brain back; just give me my brain back."

    You don't say how long you've been out of treatment, but it doesn't sound like that long considering the physical effects you're still experiencing. So I'm wondering how your bosses can be so insensitive (Seriously? Really? They're physicians?!).

    I know that you don't want to draw unnecessary attention to yourself, but at the very least, I would consult the Cancer Legal Resource Center (CLRC) and ask them about your rights under the Americans With Disabilities Act. The CLRC provides free, confidential information on cancer-related legal issues (toll free 866-843-2572; www.cancerlegalresourcecenter.org).

    I know that you've been through hell and although I can't fix things for you (I wish I could), I do know it's important to consult with people who can help. At the very least, that will provide you with options and with options, you'll have more control.

    Keep us posted, okay?

    All the best to you.

    Idelle

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  15. Dear Anonymous,

    I am sitting here with tears in MY eyes after reading your words. Idelle has provided some of the wisest and soundest advice for those of us who live exactly as you describe. I'm not going to itemize or mention even one of your struggles because I can relate to each and every one of them. I GET it. I understand and I think I just wanted to reach out and say you are not alone.

    This is in no way self-promoting. Idelle and I have become cyber-buddies because I began to blog about issues with chemobrain a little over a year ago. I won't go into the background of how and why that came to be. I will just say this. When I was finally convinced by a friend this would be a good idea, part of my reasoning was YOU. When I say that, I mean that I believed there were so many out there in your position. People with jobs on the line who are being forced to pretend everything is okay when indeed, it's not. Fearing for jobs and careers and in many of those cases, financial stability, many of us are put in the horribly unenviable position of pretending we are still as sharp as we were before we realized something wasn't quite right.

    Previously able to juggle five things at once and THRIVE in that kind of fast paced environment, now, it's one thing at the time and if interrupted in the midst of something, oftentimes we find ourselves having to start from the very beginning. I know I can no longer pick up where I left off if, for example, I am interrupted by the phone. The frustration, at times, can reduce me to tears. I find myself surrounded by piles of work and as the work piles, the frustration grows and the stress this has on me can be palpable.

    It upsets me so that you are suffering, for the most part, in silence and dealing with bosses who are so insensitive. We look normal, we act normal and we know we are no where near normal. Please know you are not alone. Idelle can speak much better to the statistics regarding the number of those of us who are affected and how long it takes things to get somewhat normal. I will only say that I am unscientifically certain our numbers are larger than what the statistics show. You stepped out and spoke. How many others still suffer in silence and in fear for their future?

    I wanted to reach out and send you my support. I am so sorry you are suffering so deeply because of this. For whatever little measure of comfort it may afford, you aren't alone. Thankfully, we have advocates like Idelle who is tirelessly and diligently putting together information for us figure ways to work within the confines of our newly (dis)functioning brains.

    I wish you well and I hope you are able to find small solutions for each of the problems you are experiencing. For me, the stress compounds everything. I don't know what else to say except to reiterate, you aren't alone and I really do understand and I sympathize with you. I wish I could offer more than that....

    Love,

    AnneMarie

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    1. Thank you, AnneMarie, you are a treasure.

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  16. SoCal Survivor,

    I, like my friend AnneMarie, am not going to itemize your struggles here either. Suffice it to say that we could substitute Western Wisconsin for Southern California and there wouldn't be many changes to your entry. I hear you and want you to know that you are not alone! I have gotten so much support from my "Sisters" in cyberspace. Keep reaching out because there are so many of us out here nodding our heads in understanding. Cyber hugs!

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  17. To SoCal Survivor:
    YOU ARE NOT ALONE - I had a similar experience, although I didn't work for physicians. (Seriously, I can't believe they can be so insensitive!) It was like my brain had taken a vacation and forgotten to come back. As more time passed, I felt like I was getting worse, especially after my hysterectomy - I started wondering if I had early-onset Alzheimer's. As the sole bread-winner in my family, losing my job and/or quitting was not an option. And my doctors kept telling me nothing was wrong. I finally found a wonderful new physician (who had been treated for ovarian cancer), and with her help and the assistance of Dr. Emily, a doctor of Naturopathy who changed my diet and added supplements, my life was turned around. Is my brain 100% back? No, and after 19 years post-chemo, I don't expect it will ever be as razor sharp as it once was. But I'm not as fearful as I used to be. I still forget things, but I remember so much more than I did before. So there is hope - there really is.

    Please know that you have many, many sisters who are pulling for you, praying for you, and wishing you the very best. I hope this encourages you to fight the good fight. Reach out whenever you need us - we're all here for you!!! (((HUGS)))

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  18. Ellen, thank you for your kind response to Anonymous, I'm sure she appreciates it, as do I. I'm glad you're doing so well. Thanks for sharing your story.

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  19. dear SoCal survivor,

    i am so, so sorry for the suffering you are enduring. but i am so glad you reached out to tell your story; not only have you validated so many of us who struggle with chemobrain, you exposed a very threatening situation that so many survivors face trying to maintain their positions in the workplace. it is a sad commentary on the lack of sensitivity, compassion and intelligence on the part of employers who treat their workers so poorly. i cannot even imagine the degree of anxiety you endure - which must also make your chemobrain even more pronounced. thank goodness you connected with idelle, and, as you can see, many others who understand completely that one's brain IS affected by treatment. i hope you are able to take heart and feel more empowered by the support you have garnered, and that knowing you are not alone gives you some measure of comfort. i wish i could could give you a hug, a real one, but hope even a "cyber" hug reaches your heart and makes you feel even a teensy bit better.

    cheering you on with love,

    karen, TC

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  20. Dear Karen, thank you for reaching across the blogosphere to offer comfort to SoCal Survivor. See you at AnneMarie's!

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