Tuesday, August 17, 2010

A Letter to the Newly Diagnosed on my One Year Cancerversary

Dear Newly Diagnosed Breast Cancer Patient,

I was diagnosed with breast cancer one year ago today.  August 17th, 2009.  On this cancerversary, I thought I would share some wisdom with you.

The first thing you need to learn about a diagnosis of breast cancer is that you have to learn stupid terminology such as "cancerversary."

Most professions have their own lingo:  in schools, we SARB people, in IT they "image" computers, in Hollywood, the electrician is called a Gaffer.   Why an illness has its own terminology is a mystery - but you will learn it.  Instead of recovering, you are a Survivor.  You don't heal,  you have a "New Normal."  You have foobs and fipples, have rads and get chemo curl. 

I don't know if any other illnesses have their own phrases, although I have a friend with cerebral palsy who sometmes calls himself a gimp. My suggestion is to learn the vocab so you won't be out of the loop, but try not to use it in polite conversation.  Discussing your fipples with your mailman is only going to lead to confusion.

The next thing I would like to share with you is that the fear and shock you feel right now will pass. One year  ago today, I felt it too.   I know it doesn't seem like it will ever go away, and I know you feel like every nerve ending in your body is made out of high voltage wire.  You will eat, sleep, dream, and think about nothing but Cancer for quite some time.

I'm sorry to tell you that you will become a bore, because it's all you will talk about.  God help anybody who asks how you are doing, because you are likely to tell them.  In detail.  If somebody cuts you off in traffic, you will be outraged, "How dare you?  Don't you know I have CANCER?"

But, as they say, this too shall pass.  It will gradually become just a disease you are dealing with, like diabetes or high blood pressure - an inconvenience, but one you can manage.  It's hard to understand that during the early days, and I know you don't believe me now, so you'll just have to trust me. 

The worst part of a cancer diagnosis is the uncertainty, and the worst part of the uncertainty is at the beginning.   You are facing an illness that can take your life.  You are facing medical procedures that are unknown and pretty damn scary.  You may be facing the loss of a body part or two, or even three, counting hair.  You don't know what any of this is like: how you'll feel, how you'll react, how your family will deal with it.  All you may know is what you've seen in the movies or on TV.  You likely will have many sleepless nights, and be on an information hunt/overload for weeks, if not months - all to try to know what will happen to you - to see into the future.

At some point though, you will come to terms with the fact that knowing the future is impossible, and living with the day you have is all you can do.  You will find peace in that.

Looking back on my cancer treatment, do you know what I remember?  I remember Bert and Jeannette and laughing in the infusion room.  I think of Lynn and my chemo nurse, Joe.   I think of my oncologist's funny ties and kind eyes.  I'm still in active treatment until December, and in a way, when it's over, I will miss going in. 

I also think back on the support of so many people - finding surprises like fabulous shoes or a snugli on my doorstep when I got home, or the meals my workmates contributed towards.   I remember Sue, my chemo Angel, who sent me lovely surprises, and Kathy, who tied a ribbon around a tree in my honor, or Dana, my student nurse who treated me with loving care.

Thinking of heartwarming events like that take away any exhaustion you may feel at the moment.

I wish I'd known when I started that the loss of a breast is meaningless.  My breasts were my best feature, I thought.  I proudly carried them, and dressed around them,  and I felt that they made me beautiful.  I was devastated at the thought of losing one.  Yet even with only one left, and the deformity on the other side, I still feel every bit the woman I did before.  My missing breast nursed my babies but in losing it, I find I can be with my babies longer.  I don't feel, as many do, that my breasts tried to kill me and so they had to go.   To use the omnipresent war comparison - I felt that they were the battleground which had to be sacrificed for the greater good. The land is scarred but the soul survives.

There is a lot of controversy about having a positive attitude. A positive attitude will not change the course of your disease, nor will it cure you, nor should you feel required to put one on all of the time. Someone asked me if a pessimist can beat the disease, and the answer is yes.  It's medical science that cures cancer, not attitude.

However, if you can learn to see the positives, the humor, the blessings even, that come from this disease, than your treatment course will be easier on you.  I believe that without a doubt. Some of the treatment won't be fun.  Some may have long-lasting side effects.  But, life goes on, and you have yours.  Dwelling on the negatives, overlooking the good things, is, in my opinion, wasting your new life.

A diagnosis of cancer will change you.  It may always be in the back of your mind, and yes,  nervousness and fear will again pop-up around testing times, but you will learn to manage it and eventually take it in stride.

And, here's the thing:  it's up to you whether cancer changes you for the better or not. It's entirely in your control.  You can't alter the fact that you have the disease, but you can choose how you react to it.

I want to tell you that I'm very sorry that you have to go through this.  But, as horrible as it seems now, it will bring blessings to your life that you never expected.  My advice? Look for them, even if it seems impossible.

Especially if it seems impossible.

Because, they are there.

Love,

Ann

23 comments:

  1. Hi Anne. I enjoyed reading your letter. You touched on a lot of things that went through my mind as I traveled along this road. The shock, the anger, the numbness, and finally the acceptance of a new normal. I am now 4 and 1/2 years post diagnosis. And even now, I don't think that a day goes by when I'm not reminded of my breast cancer in some form or another. Only now, it's just a part of who I am.

    And ironically, if you hadn't been diagnosed with cancer, it is unlikely that you would have had the insight, knowledge, and experience to share this information, enabling you to help others along this bumpy road. You relate your story with such honesty, grace and humor that only comes from firsthand experience. And that, in itself, is a blessing to others.

    Blessings to you, and thanks again for sending the book "Promises to Keep." I enjoyed it!

    ReplyDelete
  2. Nicely said. I had my final Herceptin treatment on July 29, and as you say in a way I too will miss going in for treatment. I still have my port so will need to go in to have it flushed once before it is removed in the fall. I will share this post and your blog with any women I know who are diagnosed with breast cancer as you express the human and emotional side of the process, and you present it in an unthreatening, calming, and humorous way. Thank you and keep writing..............

    ReplyDelete
  3. This comment has been removed by a blog administrator.

    ReplyDelete
  4. Oh yea, I remember all those feelings and many many more. The waiting was definitely the hardest part. Not knowing what tomorrow would bring... FEAR!!! It had this grip on me from the onset that I didn't think I would ever get out from under.

    But like you said, one day at a time, we learn to live with this. Now today almost a year to my wonderful day of joyful news, it's still there, but it's just not the main focus anymore. I still have my fears, but I don't let them (at least I think I don't) rule my every waking moment.

    Aloha... Leilani

    ReplyDelete
  5. I could not have said this better. Thanks for writing and please, don't stop! I had all of those feelings and then some, when diagnosed and all through treatment and even though I am post 2 years of diagnosis, I will never be out from under that umbrella of cancer. Yet, although I would not wish this disease on anyone, there are a lot of good memories and many, many blessings that I would have not experienced, had I never had it! Best wishes to you for a healthy future.
    Dee

    ReplyDelete
  6. Wow! You made me cry... But I truly needed to read what you said today especially, a day in which I have struggled a lot in coming to terms with, as you say, a "new normal." Thanks for sharing your wisdom!

    ReplyDelete
  7. You are a fantastic writer. I am very proud of you!


    Your Dad

    ReplyDelete
  8. Great article Ann! I can't believe it's been a year - already - though I'm sure to you the march of time has been on a different tempo. And your blog has proved to be a great inspiration to many people.

    Ingrid

    ReplyDelete
  9. Really good post, Ann; today I'm two years from my first chemo and I really had to think about what I've been through. What a journey!

    Thanks for the Christopher Hitchens mention too; i didn't know and I admire his work also.

    And your hair looks fabulous. I was grey before (allergic to dye) but my grey is better now, and wavy. Congrats on new job!

    Cathy

    ReplyDelete
  10. Hi Ann,
    I am a few months shy of my first cancerversary and your post really resonated with me. I agree about the "positive attitude" - I realize that can't cure me, but I am certain it makes me more pleasant to be around ;)

    And, while being faced with one's own mortality is not a fun experience, in fact we all will die, we're just getting a big heads up about it. Instead of getting too freaked out about my possibly untimely demise, I try to think about where I am in my life right now and evaluate priorities. Is this where I want to be? What kind of "legacy" am I leaving for my family, my friends and my community? I would like to think that this reflection may help me lead a more purposeful life than I might have otherwise experienced. Or maybe I'll just go back to sitting on the couch, eating potato chips, drinking beer and watching bad TV ;)

    ReplyDelete
  11. Nothing wrong with chips and TV. :)

    ReplyDelete
  12. Ann, you are a gift to us. I may not have cancer but I have family and dear friends who do. You help us to understand so many things.


    Judi G

    ReplyDelete
  13. Ann, Just want you to know how much I enjoy your blog. I am 3 weeks post bilateral mastectomy with a great prognosis. I admire your strength and humor and have been reading your blog since being diagnosed in June. You are truly and inspiration (I too am in Sac!!)

    ReplyDelete
  14. Awesome letter, Ann. I just sent it to one of my best friends who just got diagnosed. You really are quite an amazing writer - and person! :)

    ReplyDelete
  15. Thank you so much for this post! I was diagnosed three weeks ago and am still navigating my way through options and information and emotions. Your post was just what I needed, right when I needed it. I look forward to going back to the beginning of your journey and reading every word. Thank you, thank you, thank you.

    ReplyDelete
  16. Dear Ann,
    Thank you.
    I am four months into this "adventure" as I call it, and not liking it too much at the moment. Thanks for the advice, the humor and for being willing to put yourself out there.
    You aren't alone in "hating pink!!"
    Donna

    ReplyDelete
  17. I enjoyed reading this letter. I am 28, and was diagnosed with breast cancer November 15, 2010. I am having my mastectomy....Tomorrow (looking at the time, at is after midnight already!) I am all nerves. I have been reading your posts for a couple of hours, and it feels so good to smile! I will continue to read when I get home on friday, and keep telling myself, that soon there will no longer be Cancerdays, but Mondays, Tuesdays...and so on! :)

    ReplyDelete
  18. Aww,love the comment from your dad. Too sweet! Thanks for paving the way with wit and clarity, two things often missing from cancer talk. So glad I found your blog.

    ReplyDelete
  19. This is a wonderful post, I'm sure it's helpful to a great many women, including me. I am newly diagnosed, waiting for tests results so I can schedule my surgery. I will be a regular reader of your blog!

    ReplyDelete
  20. Thanks. I'm so mad. It's not fair. I don't want to accept that this is happening and is something that will last a long time and be with me forever if I survive it. I'm going to have to come back and read this every day.
    Ann

    ReplyDelete
  21. Ann, I just found your site and want to thank you for the effort and time you've taken to be transparent. I was diagnosed with breast cancer in January 2011. it was early stage but I decided to have a bi-lateral mastectomy with reconstruction. Your story really touched me and inspired me. I love your honesty.
    I just started a weight loss blog but decided to post my journals about my experience with the cancer diagnosis. Although my story is nothing like yours.
    I would love to post this letter- with reference to you as the author of course- on my site. Please let me know what you think of that. I will wait until I hear from you first.
    Thanks,
    Debbie
    just click the link 'cancer confessions'

    http://www.losingitonweightwatchers.weebly.com

    ReplyDelete
  22. Debbie, sure, that's fine. Just link back to my blog.

    ReplyDelete
  23. Ann, I am so glad I found your blog. I am about 5 weeks into the process and am very lucky with my prognosis. You really are an inspiration and the information you have shared is well above and beyond what I am getting from my caregivers. Wishing you all of the best with your healing and treatments.

    Best, Veronica

    ReplyDelete