breast cancer

I am sorry I didn’t beat cancer

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So why not this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, it felt like a failure as if I let down every one who thought I would “knock the shit out of cancer”. I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer”, the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometime I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone  diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me and if and how sorry they feel for me. I imagine something to the effect of … “Oh this poor young woman with young children who has this illness that has no cure”.

Me and my metastatic cancer.

I remembered when I was newly diagnosed, the word “metastasis” used to send chills up my spine. I used to dread my facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived on with bone metastasis for 11 years, she gave me hope but I still would at times try and block her out of my mind, for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep and all the medications and treatments, I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having had cancer meant. It meant accepting life that you have no control over…Life which transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancers, kick each day in the butt and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis )happens I will be ok” . I celebrated every clean scan and a good oncologist visit but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry “ call from my doctor and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was not longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate….and I will think of you the whole time.

Forgive me if this bugs you or hurts you? I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer”; I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life and showing others how to reconcile with stage 4 breast cancer.

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102 thoughts on “I am sorry I didn’t beat cancer”

  1. One of the best articles I’ve read about these issues. May god bless you. I understand you won’t beat cancer and you won’t be fine but you are fine,

  2. Just returned from chemo…stage 4 uterine metastasized to lung…doing well…hardest part is the unknown…..your strength and others that follow you will help! 👍

  3. I have a friend who was diagnosed in January with TNBC. I also have another friend whom was diagnosed with it and in December it will be 2 years. My best friend died with it in 2014. I had never heard of this before and so appreciate reading what you wrote and all the comments. It sure helps those of us that are going through as we support our friends. It helps to understand the mood swings etc. My biggest fear being an encourage is that I would share the wrong message. After reading all of these comments it has helped me to understand so much better what both of my friends are going through. Thank you so much for strength and courage to share this message. May God Bless you always.

  4. Hi, my husband has Stage 4 breast cancer mets to the bone and I just had a lumpectomy for it Stage 0. Your comments sounded so much like my Michael. He didn’t know any one else with cancer and after all the treatments he was worst than before. In fact he went on hospice. That was 16 months ago. We attended a Little Pink Houses of Hope Retreat in April and it really revitalized him. He talked to the other women, who all had breast cancer and found that what he was going through was not crazy because they went through it too. He now has a blog at amanwithbreastcancer.com and he tells his story whenever he can. The local paper did an article on him as did a nearby TV station. I keep telling him he may be the longest living breast cancer with mets that ever lived. Thank you for sharing your story. Many people don’t know anyone else that’s going thru this, and you and others like Michael help them to know that if you can do it they can too. Linda

  5. May God bless you! I’ll pray for you and your family. And don’t worry. Allah doesn’t give us more than we can bare. May Allah find more ways for you to be an inspiration for others that struggle with what you so positively look at. You’re really strong. Stay strong, Uzma. This too shall pass. ❤

  6. Saw this article across my news feed this morning before I went into my dr’s appt but didn’t read it.

    Came out of the appt with a diagnosis of metastized breast cancer in my spine, an overloaded cognitive processing struggle, and a husband who is still in a state of shock. My world has just become oddly surreal…

    Came across this article again, not searching for it, and I just want to say thank you for allowing me to now travel this road, as a companion, through your words.

  7. Uzma. Stage 3 sister here to say-I feel you-I admire you-I am with you! Yet-I refuse to EVER believe there is no hope-no time for cures-no optimism. Pull out all your stops. Do things you’ve never done. Think in new ways. Harness the power of Quantum physics. Then-rewrite this post as the success that you are! Wonderful things on the horizon…that’s where to focus! Love.

  8. Just read your wonderful article. I was first dxed at age 37 and kicked cancer’s ass (or so I thought) until 4 years ago (I’m now 56) when it showed up in the other breast. Bilateral mastectomy, several infections, and 8 horrible chemo treatments later…here I am. Dr said I was stage 4 because of metastasis. I may not be able to control having cancer but I CAN control how I react to it. That’s become my motto in dealing with cancer and life in general. I’m fairly certain it will come back at some point in a body part that I haven’t had removed (no breasts, uterus, tubes, or ovaries any more!). If I bury my head in the sand every once in awhile, I don’t panic. Thank you for sharing your fears, along with your wise words.

  9. I lost my big sister a week ago. I just had the same conversation with my brother in law when he picked me up from the airport. I flew from my home in Atlanta to my sister’s home in Iowa. She battled for five years. I never heard her complain. I told my brother in law it doesn’t mean she isn’t a survivor or that cancer beat her. I spent the last two nights with her at hospice. I told her friend that she had a slow dance with death and after five years she was just damn tired of dancing. I am grieving and still crying every five or ten minutes but your article was wonderful to read. Instead of survivor or thriver, I feel like you are a cancer pioneer. You are going ahead of others to make the way. Pushing logs and boulders off the path, smoothing the ground. I will keep you in my thoughts, thank you for this article.

  10. As a 3-time ovarian cancer survivor who has to constantly endure various forms of transfusions to stay “cancer free” this article made me laugh out loud, cry, and share it with my family. Thank you for being HONEST.

  11. My sister is enrolled in Hospice now and it is quite a jourmey. We can look back on a lot of fun trips we have taken, while on this one that is not fun.
    Love to all of you as you travel your journeys and for your messages. It is so helpful to know we are not alone.

  12. Thank you for sharing. Your words are my story as well, but something I have not been able to explain to others

  13. Thank you I work with patients who blame themselves when their cancer is not cured or returns they fell they did not try hard enough

  14. Well said. I have been living with stage 4 lung cancer with metz in bones and brain. It is treatable with a targeted drug and gamma knife surgery when new tumors appear in brain. It is not curable. I have never cared for all the warrior talk. Cancer never wins. When anyone with cancer dies, the cancer cells die too.

  15. I feel the same living with bone mets. At my 5 year post-breast cancer mark, bone lesions were discovered. I know the implications for the future. With the current chemo most lesions remain in control. I know the day will come when it changes and have to go on a stronger drug. But for now, I accept that I have a new normal and I make the best of everyday. Optimism won’t cure this but it sure makes everyday living enjoyable.

  16. You might want to watch a documentary called” The Truth About Cancer”. What ever you do, I pray you get total healing 😊

  17. Thank you for sharing your story. We found out my wife had ovarian cancer on Dec. 20, 2006. She died 100 days later. The cancer not only killed her, but it also destroyed the relationships I had with her family. Everyone was afraid to talk about it or acknowledge it. I was able to recover because of my own will to survive. Cancer and people can be so cruel and uncaring. If you have a wonderful support group, you are blessed.

  18. You did not fail — ever. Cancer is an insidious disease. Nobody kicks cancer’s ass. Instead, cancer beats us up pretty badly. All you can do is take the best care of yourself that you can. I wish people would stop using the word “beat cancer.” Nobody beats it, even those who survive it, given the emotional repercussions. Your post moved me to tears.

  19. You’re a great human being, you’ve done your best and you’ve done what’s most important, to learn from such a situation and to guide others with your example. I wish you the best. May I suggest for you to read Dying to be me by Anita Moorjani? Please enjoy, and keep on sharing your heart with us. I admire you

  20. I agree Beth I thought you could beat cancer. My husband was cancer free for 8 years now it is a stage 4 melanoma. Got copies of scans from a year before and saw they had suggested a biopsy the year before. No one had bothered to tell us. So here we are devastated,in shock wondering what to do. Trying to get him in to the nutrition side of things. It’s hard when your not told until they tell you to get your affairs in order. I’m glad you had the courage to tell us the truth, I to have had breast cancer and was not told where it would or could go. Thanks for sharing.

  21. Aoa, this article makes me laud your efforts and your tenacity to fight of your pain, in every possibe way. Remember the strive always comes from inside and for a person like you, you’re a true survivor who’s being a beacon of hope and struggle for all those looking for one word of positivity. You’ve really done your part. It would be a privilege to have your email , thanks 🙂

  22. Your words really tesonated with me. My primary cancer was in my tonsil but spread to liver. I’ve been stable for a year and a half without chemo and I know how rare and fortunate I am. I was tokd I had 4-6 months to live. And yet I’m still here, and the hatdest part is the psychological toll of waking up each day and trying to find meaning and purpose in a life without long term future goals. What do I do today to live THIS day?

    I also struggle with feeling sorry. Sorry for not beating cancer, sorry for making my family feel sad, sorry I’m no longer contributing to the economy, sorry I don’t really feel sorry for my friend who cries that her daughter is heading off to college. Sorry my finances are a mess, sorry I wont be here to look after my mother when she’s old(er), sorry I wont get to take my niece to Paris when she turns 16, sorry I have so much to be thankful for but I’m still overcome with grief.

    Thank you for sharing your story.

    1. Turn that boat around. Fill your head with only POSITIVE THOUGHTS. One never knows what God has in store for us. Remember, He only gives us “one day at a time” to live here on Earth anyway. He has a plan for you, just as He does for everyone. Try to focus on what you CAN do while you are here and do not dismay, because we never really DIE. We just “transition” into another place in space and time. I KNOW. …
      because I died on the operating room table, and when I came back – I realized that God had a Master Plan for you AND me and every living “Soul”!

      Fill your heart with LOVE and carry on the best way you can. That is all you need to do. God will be with you every step of the way.

  23. Lovely written; I too understand the delicate dance of this journey. I too blog, christinasrealtalk.blogspot.com it has been a cathartic outlet for me. Here is to thriving along our journey~

  24. Like you and Christina, I too understand that shiver that goes up your spine at the mention of metastis (sp). I am recovering from breast cancer. I have scans next month to make sure the cancer is gone. I have a surgery in December. I am terrified! I have a 2 year old son and live with fear everyday. I find your words encouraging. GOD is with you and me every step of the way. We truly need to walk in faith. I started blogging because I needed a channel for my fear. I wanted to help anyone else who is going through this awful struggle.

  25. Well written, thank you for sharing. I have stage 4 bladder cancer and actually start chemo today. My attitude is very good and I take one day at a time. I hope you have a happy day. 🙂

  26. i have cancer of the lungs, spread into my liver and neck and hip: since about 5 months. doctors have given me a pill “afatinib” and said it should work for about one year or so. then they’ll replace that pill with something else. We’ll see. But you are probably young so it is harder to take i guess. I am more afraid of pain that death. lol…i wish you the best..:)

  27. Thanks for your blog. I have terminal esophageal cancer with mets to lungs. I’m 52 with a wife and two kids. I’m fed up with positivity, the cancer ads on TV drive me mad because everyone’s happy and if you just donate everything will be fine, cancer is just an inconvenience. It’s refreshing to hear of other lifers stories, i don’t feel so alone. A work colleague said to me “I hope you find the courage to face what’s ahead” and this is my wish to you. All the best, love Chris

  28. Thank you for vocalizing my thought, Uzmand. Feeling like you are letting your inner circle down is tough. I am only a few weeks into my stage 4 breast cancer diagnosis and have had 2 primary diagnosis’ previously.

    We are close to the discovery of a drug or drugs that will make this nasty disease a chronic condition. I am ready as I know you are.

  29. Uzma-I am a physician with stage 3BC–got those damn abdominal shots (would not look at needle!) and then got ovaries out–worked out better–hope you don’t have hot flashes. You model a way to behave for me if I receive THAT call. And as for “beating cancer”–fuck that. I just told my newly diagnosed colleague to not let them “overpink” you–you don’t have to be strong and “fight” all the time– and she thanked me profusely afterwards–it had been on the day her hair was falling out. It is not a battle or a war. It is life and it is hard. Your blog has helped me. My thoughts are with you and thanks for writing.

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