The new normal.

Many of our sweet girls that have lived in our home have come from hard places. When they would tell stories about their childhoods, they would talk about their circumstances so cavalierly. They would talk about crackheads on the corner, watching domestic abuse in their home or having a family member be incarcerated. They would discuss these topics as if they were talking about the weather or recounting the days events at school. There was often little emotion and sometimes the story was even told with humor.

It baffled me.

Then May 2015, January 2017 and February 2018 {and every day since then} happened.

I’ve come to understand how my girls can talk about such horrible life circumstances so casually. When tragedy and difficulty and struggle and trial become a part of your story, it often begins to feel normal.

When I was first diagnosed with cancer in 2015, I thought it was going to be a quick journey through trial on my way to healing. But by February 2018, cancer had officially become my reality. It was becoming clear that it was going to be something that stuck around like that stink in the fridge that won’t go away no matter what you throw out and how much baking soda you put in there.

So what do you do with it? You embrace it. You cope with it. You continue to move forward with it. You sometimes laugh about it and you talk about it like it’s normal. Because that’s what it has become.

In August I had a routine PET scan to check on the progress of the immunotherapy and the {hopeful} regression of cancer. Instead of getting the results at my appointment later that week, I got a call from my oncologist the very next day. She was alarmed for two reasons. First of all, my stomach lit up on the scan like a lightbulb. The biopsies from my upper endoscopy the week before showed that all was well, which led her to believe that I was experiencing something called “immunetoxicity.” Essentially, the immunotherapy that I was on, that was supposed to be healing my body, was in fact creating a toxic environment and wreaking complete havoc in my stomach. The second alarming thing she saw was that one of the two cancerous lesions in my chest was showing some slight progression since my scan the year before.

I was thankful for her phone call. It was all a shock and still difficult to hear, but it gave Joe and I time to process before the appointment with her later in the week. I was also thankful because she started me right away on a steroid that immediately began to settle my stomach. Later that night I celebrated having an appetite again after almost 3 months of sickness by eating a giant dish of lobster risotto from one of my favorite restaurants in Hershey. It was amazing! I was also thankful because it gave me time to plan before I talked to her again. As soon as we hung up the phone I immediately called my oncologist at Penn in Philadelphia and scheduled an appointment with him.

At my appointment with her, we got the news we were assuming we would get – immunotherapy was no longer a viable option for treatment (seeing as it caused calamity in my body twice). That meant they had no other options for treatment for me.

My appointment 3 weeks later with my oncologist at Penn was encouraging. His interpretation of my PET scan was much more optimistic. His thought was that the lesions may not necessarily be progressing, but the scan may have just been showing an increase in inflammation. He talked through all the different possibilities for me moving forward.

  • There are different chemotherapies they could throw at me to put me in remission, the problem is it would only be a temporary remission.
  • There are clinical trials happening a few places around the country for CAR-T therapy. CAR-T was a breakthrough therapy when it was FDA approved a couple years ago, but it was only approved for certain lymphomas and leukemias. The trial is now for the therapy in Hodgkins patients. He said it isn’t looking like a home-run at this point and there are a lot of risks involved.
  • There is also still the possibility of doing a donor (or allogeneic) stem cell transplant. This also has a lot of risks for me, especially due to the fact that I was on immunotherapy for the last year and a half. This was the option my oncologist in Hershey had been suggesting since relapse number two.
  • Finally, he suggested a clinical trial or two that I may qualify for at Penn. All possibilities to consider once my steroids were complete and another scan had been done to check on the progression of disease and the success of the steroids in treating the immunetoxicity in my stomach.

As I considered all the possibilities, I realized the idea of undergoing cancer treatment again sounded awful. Yes, I have been living with cancer now {again} for over a year and a half. However, in that time, I have had the privilege that many cancer patients don’t have and that is quality of life. So many people fighting cancer or who have had loved ones fight cancer will tell you, it is not the cancer that is so bad, it is the treatment of the cancer that ravages your body and leaves you bedridden and weak.

I want quality of life above all else.

I have never understood why every time I talk to my oncologist in Hershey she continues to push another transplant on me. I have made it clear that I am not interested in taking that risk. At a follow up appointment I had with her a couple weeks ago, she again mentioned a transplant. When I pushed in a little bit and asked some more questions, she said that it is the only option at this point for a cure. The blinders came off my eyes and I saw for the first time that she sees it as her sole mission to cure me, by any means necessary. She is an oncologist after all! However, when I last talked to my doctor at Penn, he said something that resonated with me. He said we may just have to treat this thing like a chronic disease; like something I manage. Yes! That’s it! I don’t necessarily know that I am looking for a cure at this point. That would be great, don’t get me wrong. But if I can continue to have quality of life and still manage this chronic cancer, that is the direction I want to go.

So at this point, no decision has been made about which direction I will move in treatment {or not}. It will wait until my next scan, which won’t be until December sometime. In the meantime however, I’m still eating crazy (at least that’s what my girls say) and taking my supplements and doing my best to manage stress and exercise and sleep and do all the other things I know to do to take care of myself. And I feel good.

This is my new normal. This is me embracing what I cannot change and making the best of it. This is taking that stink in the fridge and allowing it to become part of the fabric of your home. This is finding humor in places where most would only see melancholy. This is choosing hope, with or without a cure.

Enjoying a beach getaway with my one and only.
We finally remembered to take a picture in the oncology office at Penn!
Running a 5K (and winning my age group because I was the only one!) all moon-faced from steroids!
Supporting the LLS at the Light the Night Walk in Harrisburg with our girls.

4 thoughts on “The new normal.

  1. You are someone I admire. I’ve followed your story and yes there is much optimism for you. Such conflicts in two drs and two ways of looking at it. 🙏

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  2. Great perspective Ash!! Same thing with kidney disease..transplants and dialysis are never a cure..only a way of managing life with a life threatening disease. But God is the sustainer and giver of each and every breath and each and every moment of the days He gives us. It’s our choice how we chose to use them. Thankful that you’ve chosen Hope. ❤Love and hugs and continued prayers for you.

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  3. Thank you so much for sharing your journey. Your courage and faith are an inspiration to me and to anyone who reads what you have so beautifully written. Lifting you and your sweet family up in prayer.

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