Today was arguably one of the biggest days in my cancer adventure as I hopped, skipped and jumped from doc to doc at the Cleveland Clinic. For nine blistering hours I was interviewed, examined, evaluated and advised. It was the best of times and it was the worst of times. And now I’m exhausted.
I’m going to write about this now even when I’m physically and mentally on empty for two reasons. One, even though I’m tired, I’m still craving some organization in the mess that is my mind and heart at the moment. Albeit wearily, I need to shuffle around this cramped chaotic space and put things where they belong so they don’t come crawling out at me and take over. I need to give each item its due consideration before mindfully winding it down and putting it to rest. Like a patient caretaker of crazy things, I will hold a space for these little monsters and broken pieces so their fitful tirades will die down into a quiet, manageable hum so I can start pressing forward once again.
The second reason is for you. To the person I have never met who needs these words. To the other cancer warrior. To the other suffering soul. Here I am sorting through garbage just like you. I’ve said it before, that cancer is just life amplified. A great big stage for the same battles and heart aches and glories we all live day-to-day. In my mind, it’s all the same. I’ve gone to pieces over a messy kitchen or a unfulfilled expectation or a tantrum child or a thousand other things. Cancer is just making the moment so big that it cannot be missed. So demanding that improvement cannot go unclaimed. So urgent that growth must take root now. And so, here I am- trying. Exhaustedly, but resolutely, trying.
So let’s start with the good. The day began with and MRI. For about 3 weeks I’ve been telling myself that I don’t have cancer. I’ve chosen to believe that the chemo is working and that the tumors and lymph nodes have acquiesced. Turns out, I was right. There is no visible cancer in my body in this moment. They call this a “complete response” and in about 60% of the cases there is no residual disease. What that technically means is that the chemo and other therapies have done their intended jobs. While there may be some tiny cancer cells left, the big guys are out. So that was obviously a very exciting way to start the day.
Of course, the lawyer in me was thinking “not so fast.” And as it turns out, I was right about that, too. Even though I am technically on some level without cancer, the focus simply shifts from combating the current disease to preventing a reoccurance. And let me tell you, that’s no fucking joke. Turns out the kind of cancer I have is the kind that really likes to make a repeat appearance. This gets the docs all worked up about keeping a young person like me alive and healthy for as long as possible. Do I appreciate that? Absolutely. The people I spoke with today are some of the best in their field and they are singularly focused on keeping me here. And of course, I know and now love people who would do anything to be in my position, so I am mindful of my privilege. However, these are heavy deals we’re making and they don’t come without considerable costs, the weight of which I was completely unprepared for.
It’s the first time in my life that I’ve had to make sacrifices that I cannot make up on the other side. Youth insulates us a lot from the permanent and irreversible losses of time and age. We have time to make more money, or to heal back to full health and functioning. Most people my age haven’t had to close the door on anything forever because time and health are on our side working like a spirited breeze against our backs, pushing us forward into sunny days. As the day went on today, I saw doors closing. I saw limitations rising that cannot be lifted, that will likely ultimately significantly change the way I experience my life. I saw the vision I had for my life become brittle and then snap sharply before me. Like a loud POP! with a flinch. While I cannot say for sure what will happen, the doctors made it clear today that this body, this life, these expectations are over and it’s time to start adjusting.
It’s also clear that something I thought would be over and behind me by Christmas is going to actually take another two years. I will likely undergo three surgeries. I will lose some lymph nodes and both breasts, I will pick up some pretty serious scars and possibly have to work with limited mobility in my left shoulder and, worse, swelling in my left arm that will be aggravated by activity. Did I mention I’m a triathlete who craves and relies on intense physical activity? I will be subject to intense and prolonged radiation that can permanently damage my heart and shoulder, temporarily burn my skin, cause lymphedema (which I’m terrified of), and hardest of all can actually cause a much worse, more aggressive cancer later on. I’m sitting at the poker table of life and while I can win this, I’m definitely going to take some hits.
In addition to the inevitable losses this body is going to endure, I also now realize the battle for victory is going to be a much longer road than I had originally envisioned. There will be physical therapy to fight through to regain some, but possibly not all, mobility. I will have artificial pieces installed in me for months. Literally, I will be living with hard, cumbersome, uncomfortable expanders under my chest muscles for a year. I will be so limited in physical activity that walking will be my new threshold. The 10 year anniversary half ironman Tom and I had planned to race together next summer is out. The warrior athelete that I have fallen back into time and time again to cope with life’s challenges and to ease my mind and build my confidence will be shelved. I will pack her quietly away and begin the search for a new, deeply changed model. She is a stranger to me now, this sage warrior princess. And while I silently envy her deep strength and fierce courage, I have no idea where she comes from or if I have what it takes to become her.
Wondering if you are enough is hard. I wonder tonight how I will find the peace, courage and resolve to accept these changes and to thrive in the next months and years of my life. But somewhere, a little voice is whispering, “Yes, you will.” I have spent my whole life pushing harder, working more intently, powering through. I will spend the next phase of my life getting smarter, digging deeper, and trading force for deep, enduring strength.
And it all makes me think of the stars I saw when I drove out of town craving direction and change in my life before my diagnosis. When a great big star in the galaxy reaches the end of its life, it turns into what we call a supernova. At the beginning of the end, heavier elements build up in layers in the center of the star. The core of the star becomes incredibly dense, packed solid with the heavy compressed elements by unfathomable forces. Once it reaches a critical mass, the star begins to implode, and the core heats up and becomes denser yet. Eventually, the implosion bounces back off the core, expelling stellar material into space, forming the flash of incredible light that is a supernova. Supernovas can briefly outshine entire galaxies and they radiate more energy than our sun will in its entire lifetime. It’s absolutely awe inspiring what pressure and force does in nature.
The brilliant light we see and marvel at is actually the end of that star’s life. It comes when all the forces of the cosmos have piled on it and demanded that it become something different. Something brilliant. Something remarkable. And so, too, will I. I will build my core, my soul, my strength and in the end let this life give way to something different. Something brilliant. Something remarkable.
I hope you’re ready for some serious shine.
Give Em’ Hell.
4 Comments Add yours
I’ve never met you. Your blog was passed on to me because all around me I have people battling cancer. Your descriptions help me gain a smidgen of understanding as I try to support and bolster my friends. Thank you so very much. And power on, Warrior Woman!
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I’m so glad it’s helped you. Please feel free to reach out any time if I can be help with anything in the future. Contact@katieovercancer.com is a good email for me. Lots of love and support to you and those who are battling in your life. Hugs!
I met you at the Cleveland Clinic on June 23rd, you came in my room to see what reconstructive surgery would look like after a double mastectomy, I read your blog when I got home last night and what we have in common is like you my sister in March 2013 also had stage 3 breast cancer of the same kind, after chemo, reconstructive surgery and radiation it was over a year by the time she completed but I want you to know 3 years later she is doing great! And we celebrated her 50th birthday this past April 8th and what a great party that was but as far as my journey I went to get a mamagram right after my sister found out she had breast cancer and after my second mamagram they started watching me every 6 months because of calcification then July 2015 I had a biopsy on left breast and they found I had precancerous cells and removed them and I had to meet with high risk doctors, this was all at the Cleveland Clinic so they said I could take a pill that only reduce my risk by small percentage like 4 percent and continue to get mamagrams, mri and possible biopsies for the rest of my life and I asked them about double mastectomy and they said that not everyone does that but choice was mine, let me just say after going to all the chemo treatments with my sister and watching her lose her hair and get sick, there are no words to describe what that does to a person going thru it themselves and the people watching and trying to help them go thru it! I had the biggest fear I ever felt when told me this was my options so I was in Florida over the winter and came back home in February 2016 and they did another mamagram and found more calcification and did another biopsy and found out it was nothing, thank God but I needed to continue to have another mamagram and another mri in August of this year, I can tell you I went home and I decided if insurance covers this I’m having a double mastectomy instead of going thru this every 6 months for the rest of my life!! My sister totally agreed! I’m 47 I’ve been running since I was about your age and like you it brought me joy, a good mind set and good for my health and all the fear I had last year when all this started with 2 biopsies and having precancerous cells removed it consumed me day and night until one morning at like 4-5 am I just cried out to God to heal me from this fear, I couldn’t do this myself!! In that moment I knew I was heeled from my fear because I have peace I’ve never felt in my life and I now know I’m never alone, God was always there I just never gave Him the reigns to take and do what none of us can do alone!!! So when they said insurance covers it, I was set up with Dr Grobmyer, who is the best breast surgeon at Cleveland Clinic and Dr Djohan who is also the best reconstructive surgeon at Cleveland Clinic!! You are in good hands there!! So when I was sitting in the lobby I saw you sitting and I felt so grateful for the chance of having this preventative surgery but my heart went out to you!! Because like my sister I know what you’re going thru, me and my sister a very close and when she got breast cancer, I told this what we’re doing and called the Cleveland Clinic and got the best doctors and went to work, I’ll never forget driving up there and going thru one test after another all day and finding out it was worse than what we thought, stage 3!! She had a good size tumor and also in a lot of lymph nodes so she asked me if I would be her coach and I said absolutely!! And from that day forward we were on some journey, as you know lots of ups and downs but thru I’m so inspired by my sister and by you and anyone who goes thru this awful thing they call cancer!!! So on July 15th I got to have a chance I doing something about it so I don’t have to go thru what my sister, my dads mom and her sister and all women out there like you young and old go thru!!! I’m am forever thankful to God and people He put around me to lift me up and see me thru this struggle I was facing!! You touched my heart when I met you and read your blog and I wanted you to know I and a lot of others around will be praying for you and your family!!! I think it’s a great idea to have the reconstructive surgery, my sister did it and is so glad she did and I’ve talked to other who also were glad they did!! Your such a great writer so keep on keepin on and feel free to contact me anytime for anything you need!!! May God Bless you and your family!!
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Oh my goodness, Erma! So lovely to hear from you! And thank you so so much for being so generous yesterday. That really helped! I wish you and your sister the absolute best. So many hard decisions to be made but I think you’ll have a clear head moving forward and that is worth so much. Try to take care of yourself and know that you and your sister are in my thoughts. Thank you again for your sweet generosity. ❤️