The journey continues whether you are ready or not.

Recently, I received an email from someone in the Kaiser “survivorship” clinic. I was confused because I am not done with treatment until October. I still have 8 HER2 targeted therapy infusions left. When I responded to the email that I was not done with treatment yet (was this just a clerical error??) it was clarified to me that Kaiser does in fact move you into the survivorship bucket when you are done with surgery/chemo/radiation. It does not mean you are a “survivor” of your particular kind of cancer yet. It seems to mean that you are put into that bucket as the system has determined you no longer need to be seen weekly by your oncologist or radiation oncologist and this is the next step to moving you along your journey. The reality is, I am not done with treatment and just like every stage of this journey, I still have weekly questions and concerns on navigating cancer, treatment, and symptoms. And the doctor’s are still there to answer my questions, but I have to reach out to them, instead of a weekly check in where we can address concerns. This has added more to my mental load and when you are going through cancer treatment, any new addition feels like a really heavy lift. And unfortunately, I am pretty fragile these days and get overwhelmed easily so adding anything to my plate feels like it has the potential to break me.

When you are diagnosed with cancer, your life changes forever and it takes you a good couple of weeks (some things take months) to catch up to your new normal of Dr. appointments, different treatments, and challenges that come along with every step of the process. After 8 months of my body being assaulted by surgery, chemo, and radiation, I am depleted. Add to all of that the chemically induced menopause that comes along with chemo. With no progesterone in my body I have very low stress resilience, I am easily annoyed (sorry family), and my sleep is not that great. I am pretty good at functioning earlier in the day, but my brain and body shut down around 3 pm. Too bad I can’t shut down my responsibilities until 8:30 after the kids are in bed. Long story short, I do not feel like I am ready to be in the survivorship bucket. I still very much feel like I am in the middle of the process of being treated for cancer but with a different kind of support system than was offered to me for the first half of my journey.

I want to make it clear that there is still support. There is a nurse who you can reach out to with your questions and concerns and I still have my breast cancer coordinator and there are breast cancer support groups at my disposal. So it is not like you are just dropped back into your normal life like nothing happened. It just feels like a very nebulous space that you are in as you finish up the “active treatment” phase where it seems like every 5 minutes a medical professional is reaching out to you to check in, and the “survivorship” phase where you are starting to navigate it all yourself.

If I was reading this without having gone through this journey, a support group and an option to reach out to a nurse would sound completely adequate to me in terms of support. But there is a lot of PTSD that I am dealing with post diagnosis and treatment and it feels huge to figure out how to step back into a world beyond breast cancer. It is as if I have needed glasses for a very long time, but the prescription needed was so low that if I squinted, I could see clearly so I did not even realize I needed glasses. What I have been through and all that I have learned about real health in the last 8 months is like I put on the glasses and now I can not see without them. You can not leave the house without your new glasses once you realize how clear everything is. I can not go back to living my life how I used to live it. I am sure as I get farther away from this year, I will settle into life post cancer, whatever that means. But right now, everything I do is focused around the question of how will this support my health and healing?

And when I am out in the world, everything I look at is evaluated through a cancer lens. Will it cause a recurrence if I eat this pastry? What if I do not sleep well one night? Did I eat enough vegetables today? Will my kids get cancer because they are eating a hawaiian ice that has food dye in it? We hosted Polish Easter at our house this year, as we do every year. It is our tradition to have a plethora of sausages, a known carcinogen, serve alcohol, a known carcinogen, and end the meal with a mocha torte, which is made with chemically filled marshmallow fluff. Now am I going to get cancer from this one meal? No. Do I feel like I may get cancer from this meal? Very much so.

And before you say anything, I know that the stress I feel around my daily existence is actually what may give me cancer again. The challenge for me has been knowing that fact and being able to access a calmer state after all I have been through. The nebulous place I am living is compounded by a dysregulated nervous system as I process my return to “normal” life. There is a delta between the before and the after as I am not quite sure what my life post treatment will look like.

What I do know is that this is all part of the process. Living in my daily reality of working, taking care of kids, the house, and just my busy life in general does not give me a lot of time to process and unpack some of these very big feelings. I did make time this last weekend to pause and replenish as carved out the time to attend a yoga retreat. At the end of the retreat, we all pulled a tarot card from a deck and I pulled “The World” card, the meaning being “exploration, closing a cycle, stepping out of your comfort zone”. Exactly what I needed to come into my consciousness (isn’t it funny how the world works when you pause and ask for what you need?!)

I am in a nebulous place. I have moved through some really big milestones, physically, emotionally, spiritually, energetically and mentally in the last few months. The growth on all levels has been rapid and at the same time, I am tired and my body is working on healing from the trauma of a breast cancer diagnosis and the treatments that come along with it. I am not done, but I have moved into a new stage. On many levels, I can handle a fuller schedule, more responsibilities, and I am eager to get back to all of my plans and goals that were put on pause last August. And on another level, I am an early stage butterfly that is not quite ready to fully emerge from her chrysalis. I am fragile and need to protect my time and energy. The beautiful thing about this nebulous place is that there is so much possibility to be intentional with the creation of the next stage of my life. There are many uncertainties to the future, but oh so many possibilities.

The World Tarot Card

You go through the gate and, behold, you have come out of the forest. In front of you is the whole world with all of its uncertainties, but also its adventures. You can take a step forward and leave the forest you know well by now, to go and find what is outside. The World card is a cyclical card. Something ends and something starts again, because each time we experience something, after having metabolized it, we must move on. Don’t stay in your comfort zone, says the World. There is a whole lot to get to know. The first step is what the Fool told us at the beginning of the journey. Go outside with confidence, daring, without fear. Enter the chaos and abandon what you know; this is the only way to leave the forest. You turn around, give thanks, and step forward.