Tuesday, January 19, 2016

A letter to a newly diagnosed breast cancer survivor

Some friends at Cure Forward challenged me to write a letter with advice and encouragement for a newly diagnosed breast cancer patient, which I thought would be interesting and potentially helpful, so here it is...
 
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Dear newly diagnosed breast cancer survivor,
 
Did you know you are a survivor already? You are. From the moment you are diagnosed you’re a survivor and you will be for the rest of your life.
 
Here I sit, almost three years since I heard the worst words of my life, “you have cancer.” And thinking about those words still guts me. But honestly, that was the worst part, at least emotionally. Every day and week since then has been better. So if you’re in the lows of post-diagnosis, know that it WILL get better. 
 
When I heard those words I believed I was already one foot in the grave. I had no ability to imagine that I would be here three years later. But my advice is that even if you can’t imagine it, try to. And if you can’t, let others imagine your brighter, longer days ahead.
 
Medically, I encourage you understand all you can about your breast cancer. Not all are created equal. Understand your hormone receptor status, your stage, grade, lymph node involvement, and even onco-type. I didn’t have the opportunity to understand every specific of my cancer or information about clinical trials, because everything moved so fast post-diagnosis. But understating a bit about precision medicine, novel treatment options, and looking into companies that specialize in it, like Cure Forward, could help you a lot.
 
However, in understanding more about your breast cancer, stay away from of Dr. Google. He’s an evil doctor and he will only scare you. Get the facts you need (which can sometimes involve the internet), and they stay away from Google searches. The sad stories, message boards, and news stories will not help you. Remember, healthy people aren’t on the cancer chat boards. They are off living their lives. 
 
I also encourage you to get second opinion. I was diagnosed at one hospital, then got a second opinion another, and decided to do my treatment there. Call any friends you have in the medical field that can help you get a second opinion at another hospital. Sadly, not all oncologists, hospitals, and treatment plans are created equal.
 
Once you know all there is to know and you’ve sought medical opinions, then don’t hesitate to act. Get started on chemo or surgery ASAP. And push your doctors to get you started quickly. I feel like that was one of my keys to success. From my ultrasound/preliminary diagnosis to sitting in a chemo chair to get AC #1 it was 11 days. Time is of the essence, and don’t dilly dally thinking about not doing all the treatment your doctors recommend. You have to trust your doctors. So find one you love and trust them.
 
In case you want to know what the road ahead looks like, here are the three worst things (in my experience) about breast cancer treatment and survivorship:
  1. Growing your hair back after chemo. I didn’t mind shaving my head when I started to lose it. I was in the zone of “this is what I have to do, and I’m a badass”. I didn’t mind wearing wigs – hey, sure made for an easy morning routine. But I absolutely hated the first six months after treatment when my hair was so short. I thought I looked unfeminine, like some kind of butch lesbian. I didn’t want short brown hair. I couldn’t wait for time to pass and my hair to be back in at least a “bob” style.  
  2. A double mastectomy and tissue expanders. Not going to lie, a double mastectomy and the tissue expansions that I had to do quickly afterwards, is the worst pain I’ve experienced in my life. And I have a pretty high pain tolerance.  Oh, and that pain went on for ~6 weeks. It’s worse than any broken bone I’ve had (heck, I had a broken rib for 2 weeks and didn’t realize it!) and its way worse than childbirth. Remember, it’s terrible, but you’ll get through it and then it will be over.
  3. That when treatment, ends the fear and trauma does not. Every cough you get, every ache or pain you have, every headache, everything leads to fear that it’s the cancer, back as stage IV. And this lasts for years, maybe even a lifetime. Faith in God and the passage of time has helped me cope, as well as trying to live life to its fullest, because no one really knows the number of days they have left. There is no “putting cancer behind you.” If you’re lucky, the worst will be behind you, but it will always be a part of you.
 
My heart goes out to you, the newly diagnosed survivor, because like I said at the beginning of my letter, it many ways the first days are the worst part. The heartache of hearing that you have cancer and the ambiguity of life after those words, is a pain that I wouldn’t wish on my (hypothetical) worst enemy. But you’ll get through this, and you will emerge stronger. Keep the faith.


Hugs and prayers,
Kirsten
 

16 comments:

  1. I love this post. I'm almost two years since diagnosis and the mastectomy was pretty awful. I'm weeks away from my third reconstruction.

    ReplyDelete
  2. You are amazing, Kirsten! Love you. Connie

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  4. This is all such great advice! I'm 5 years cancer-free, and I can especially relate to #3. After going through something like this, it will always be a part of us. But at the same time, I really feel like I appreciate my life so much more because of it. Praying for continued health and happiness for you and your sweet family!

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