When the Street Lights Come on

Making decisions about chemotherapy.

When we were young in my neighborhood, we seemed to have a universal curfew – – when the street lights came on, everyone went home. It worked great with the seasons as we were naturally able to stay out longer in the summer. I thought about that recently when my brother visited. As all our solar lighting in the backyard turned on, it seemed that was his cue to call it a night and go home.

For metastatic pancreatic cancer, there are two main treatments (standard of care), both of which are a cocktail of two – four drugs. This is a fairly recent approach; combining treatments seems to work better. Sometimes one works better than the other, sometimes neither work; it’s all unique for each person. Most clinical trials are tied to one or the other main treatment, using new drugs to upgrade the treatment. So far, most clinical trials fail for pancreatic cancer, so it’s important to combine with a treatment that does sometimes work. Sadly, neither main treatment works for long.

I have been on both main treatments. One worked better for me than most people experience. I feel lucky for that. The other seemed designed to harm me. I never qualified for clinical trials; the two that rejected me for having too small tumors, failed.

All chemotherapy is toxic. The longer you stay on it, the more toxicity develops and remains in your body. As the toxicity increases in your body, the worse you feel, the side effects worsen with subsequent chemo and those chemos have less chance of working.

I tried the newest released drug for pancreatic cancer and it did work……for a moment. The cat scan and tumor marker tests at the three month mark recently confirmed it is no longer working. The cancer is growing. 

There are a couple options for me to consider, however, the chances of them working, with my level of toxicity after 2½ years of chemo, is less than 10%. It would take 3 months with, probably, significant side effects to even determine if it’s working. 

Reality check: I would be trading 3 months of feeling well, for 3 months of serious horribleness for a 10% chance of success.

Occasionally in our lives we have to make very difficult decisions. For me, though, this one was pretty clear. It was just tough to actually say out loud. To people I love.  

There are people who would never feel okay if they didn’t strive to do everything in their power to try, even in the face of serious adversity. There are other people who focus on the value of the quality of one’s life as their driving force. I think I’m both. I believe it’s the reason I’m still here today. I tried both the western medical chemo options combined with my holistic synergy lifestyle. 

So, I made the decision. I have stopped chemotherapy and will only focus on my holistic synergy approach.

I am choosing quality of life as my only path now.  

I have been off chemo for two weeks and I feel pretty wonderfully okay. I can bike ride, play tennis, walk for miles, eat great food and nap only if I want, not because I’ve run out of steam for the rest of the day. As much as COVID allows me, I can visit with family, friends and enjoy a small glass of wine. 

I feel at peace with my decision. At this point, my time for living with pancreatic cancer would not be super long with or without chemo. So, I choose to be well during this time. I plan to be here as long as possible to enjoy everything, as I’ve always enjoyed everything. This is a hard journey sometimes, and I do have ups and downs. I’ve taken good advice from a friend and cry a little each day, just to help me keep up. 

Because I know I will have to go home when those street lights come on.

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This is my blog about living my life with Stage 4 Pancreatic Cancer—End stage. I joked about writing this imaginary blog when I spent a year on a treatment that allowed me only 10 days to feel well enough to live a fairly normal life. (Actually normal doesn’t even really exist for me anymore!) To earn those good days, I spent the previous 10 days living in post-chemo treatment physical hell – that also became normal in a perverse way. I’m also writing to honor those who are diagnosed with Stage Four Pancreatic Cancer. You might live longer than you expect and I want you to have someone who tells you what that’s like. There aren’t many role models for people with this because, well, they’re usually gone. So, this is for you. Maybe your journey will be similar to mine. Actually, it will probably be very different because “everyone is different.” Even still, maybe this will still be a bit of a guide.

4 thoughts on “When the Street Lights Come on”

  1. You are such a beautiful and brave person, Kathy. I am honored to be your friend. I only wish it could be forever. I will be by your side as long as you need me, and loving every minute I’m with you. (We do have fun, don’t we!). Peace and love to you.

    Liked by 1 person

  2. Your attitude throughout the decades I have known you has always been honest, direct and positive and it is no surprise you are the same with those you care about in sharing your painful reality of your cancer journey. It is so like you to comfort those you will leave behind and once again your writing has provided a little salve for us in processing what you are going through. My dear Kathy, your friendship has meant so much and I ache that I can not change your reality. I will be there by your side. Wishing I could hug you, sending love and hope for comfort.

    Liked by 1 person

  3. You are amazing. As a child and adult I have always marveled at you. You are my oldest girl cousin who can do anything. You ask the right questions, fight the fight but even more and especially at this time know when to listen to your inner self and grab the life you have and embrace it. I love you so much.

    Liked by 1 person

  4. What gifts you have, your writing and your insight into what is important. Many don’t have the ability or time to know the difference. You are so inspiring to those who have watched your journey and are so brilliant while not forgetting to often laugh hysterically along the way. Many live to 100 and never know what that definition of quality of life is. In this way you have been truly blessed, my friend. Thank you for sharing. Xo

    Liked by 1 person

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