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 endpoint — “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 would I fail at 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, I felt like a failure as if I let down everyone 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 sometimes 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 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 cancer meant. It meant accepting a life that you have no control over…a life that transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancer 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 okay.” 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 no longer a “success story”.
During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.
“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.
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~
Here’s to us thrivers of life 🙂
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.
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. 🙂
Good luck to you. So sorry that you have to deal with all this.
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..:)
So sorry to hear of your situation
thank you. Uzmamd..
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
Hugs to you Chris. You are truly in a tough spot .
Best for the futire
People dont understand…it will never go away
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.
Thank you for this very meaningful sharing. Wishing you peace and love to you and yours.
My mom was diagnosed with stage 4 cancer. Your post helps me understand her better
So sorry Ella , hope you are ok
Thank you. Best to your mom.
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.
I related to this so much . I have just been diagnosed with cancer and lots of people have been positive and telling me that I am strong and I will beat it. That is great but what if I don’t. Does that mean I am not strong? What if my strength isn’t a factor in beating what feels like a random disease in the first place.
I feel like I have been entered into a particularly cruel version of the hunger games and everyone will be disappointed if that canon fired early.
Thank you for your faithful endurance and recording such a profound -personal life story.
Thank you for reading
This was a good read because I feel aggravated when people say you’re so strong. Stage one BC and NED for nine months after chemo and mastectomy but now headed for bone scan Wednesday and scared. I hate cancer 😌
I love this real account. What your friend said/wrote to you is like a mantra, a prayer, and well-deserved, high praise. You did not fail. Thank you for the honest depiction. Much love.
I watched my mom battle, be a warrior, be a spiritual leader and live a few days with the feeling of guilt over not having ‘beaten’ her disease when the mets call came.
She overcame the guilt with a state of grace and thankfulness at being given a chance to make her long goodbyes to all she loved, and to live mindfully, each day she had. It isn’t your fault, there isn’t a blame to be assigned.
Life has a 100 percent mortality rate. Thank you for giving voice to this. I wish you love and peace in your journey.
Your story is so similiar to mine. Thank you for putting it into words so eloquently. We may not be “survivors” but we are “surviving” for now. God Bless You!
I’m scared too. Im tired of even talking and thinking about breast cancer every minute of every day.
Her 2 trip pos. Stage 3 double mastectomy, 39 lymph nodes , 33x radiation, 18x chemo, next step hysterectomy.
Thank you for writing this. I, too, have Stage IV Metastatic Breast Cancer. I was diagnosed just over 10 years ago. My original diagnosis was 16 years ago. My daughter was 3 yr old when I was told I have cancer. I was like you, scared confused, sad and felt hopeless. I felt cheated in some way that I wouldn’t see my daughter grow up. I wouldn’t see graduation, college, marriage and grand babies. Then I dug deep and found the positive. I thanked God that of all of the illnesses in this mortal world, he’s using me through breast cancer; a treatable disrobe. I was comforted that God wasn’t using me with Something much worse. I prayed and prayed that with this disease being very treatable, that God would let me live to not only do His work, but to let me raise my daughter. I have lived my life like I cancer never existed. I did not change anything; eat what I want, drink beer regularly and hell, sometimes I even smoke cigarettes. I took care of my daughter, battled through a 3 year divorce from her father who was a pathological liar, manipulating and a narcissist. I went to work where I was in a demanding management position with insurance customer service. I’ve went to chemo every 3 weeks since finishing 6 months, 26 weeks, of chemo. I’ve never missed a one treatment. (200+ infusions since my first diagnosis).
I’ve never let this cancer control me. It lives within me, but I’m the one who is living and in control. Now I know someday it may lead to my demise. But we’re all going to die of something, right?
Please don’t think of yourself as not being a survivor anymore. Every day that you wake up on this side of the dirt, you’re a survivor. This disease doesn’t get to decide if you’re a warrior or not, YOU do! You can be a
Warrior every day, the choice is yours. Besides, I’ll bet your kids think you’re a super hero, without question.
Wake up every day as a winner. Be at peace with who you are and how you’re serving God in a way He has chosen for you. You’re his special child and he has trusted in you with His purpose.
My prayer for you, may God keep you with your children, give you peace with doing His work. May he put love in your heart everyday and watch over you every minute. Thank you Lord for trusting us with Your purpose and plan. We will please You and carry out Your deeds through your Will. Amen.
Mary, thank you for taking the time to pen your very kind, loving and supportive note. This is Uzma’s husband Dheeraj responding. Unfortunately, Uzma breathed her last about 2 weeks after your comment. She died at peace, pain free, in our home and surrounded by loved ones.
Oh my goodness, I am so sorry to hear of your loss. What a remarkably strong and loving woman, mother, and wife. Grateful to know she was at peace. Blessings.