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Voice of Kidney Cancer – Julie Shill

Voice of Kidney Cancer – Julie Shill

Julie is a stage 4 kidney cancer survivor and author of the blog: Julie’s Not Dying Today. Her latest post about working with Sonya Owens, a Licensed Clinical Social Worker on managing emotional aspects of cancer is something that all patients can benefit from. Thank you Julie for educating and inspiring! And thank you Sonya for what you’re doing to support patients. 

Today I had an appointment with my counselor, Sonya Owens, LCSW (here is a selfie we took together)! She is an important part of my medical team and she is helping me deal with the emotions and transitions I am making during this whole cancer experience.

We reviewed what we discussed at my last appointment about dealing with grief. We talked more about how I am preparing to leave a legacy, and spent quite some time discussing this new phase I am in and how to move forward embracing survivorship. I feel like I have just been in survivor and crisis mode as I have faced surgery after surgery, and procedure after procedure. I am dealing with some side effects to the immunotherapy, and still recovering from the vertebroplasty. I am not yet medically stable, but look forward to the time where I will move into a somewhat stable mode. I have not been able to exercise and I have become weak. I discussed my plans to begin a swimming program, and some yoga.

The interesting thing is that I look very good. When I tell people about my illness and everything I am dealing with people expect me to be bed bound. Some people expected me to have passed by now and it was a definite possiblity. When they see me looking good, then they then expect me to be 100% like I was before my diagnosis. I am in an in between place where I have the energy to do one thing a day (today I went out for my counseling appointment), and then I come home and sleep for a few hours.  When I wake, I cook a few recipes, then rest again. I am sometimes frustrated that I can’t do all I would like to do in a day due to low energy levels, pain, and/or weakness.

It can be frustrating to family and friends as well. For the most part people are understanding, but it is hard to understand because I look like I should be able to do more. I was planning on going to Arizona and then California on a fourth of July vacation with Curt, but I could not go because I had to wait and do my infusion this week. It ended up being for the best because I don’t think I would have had the energy to walk or even ride a scooter around Disneyland, or even sit on a whale watching boat for 3 hours due to my back spasms. I think it is frustrating to Curt who loves vacations, but he says he understands. Maybe after I get stronger. He is ready for me to be “normal” again. I just don’t know what “normal” is going to look like. To be sure, I am better today than yesterday!

Sonya told me I am doing really well and have done alot of emotional grief work. We talked about how life is a race. Some of us run a sprint, and some run a marathon. It looks like I may have more than a sprint, and I think I will be around for a few more years vs. a few more months. We talked about how people dealing with cancer have emotions similar to PTSD, but we don’t call it PTSD. Some things trigger waves of “fight or flight”, or “grief/anxiety.” Some talk about being a “warrior,” and I am definitely fighting, but I’m not in that intense “fight” mode all the time. I am living and figuring out how to live with cancer. There is no cure for kidney cancer.

I sometimes get “triggered” as I think about my identity as a physical therapist and how it felt leaving work. I may return eventually, but I cried again as I told Sonya about how it felt to remove my things from the clinic, turn in my computer, and remove my license from the wall.

I get waves of emotion as I talk about making quilts for eventual grandchildren that I may or may not get to meet. I have two beautiful amazing adult children and I know there is an eternal companion for both of them. I don’t know how long I have left to be here on earth but I believe I will be around for a few more years and will see my kids get married, but I also can accept it if I am not.

I will have a better idea about my prognosis in August. I will have another CT scan and diagnostic x ray to see if my immunotherapy is working. We will also look at the bone lesions I have in my right arm and left leg to see if any further surgeries need to be done and we will look at my spine. The big picture is overwhelming and too much for me to think about, but I can take one day at a time, one procedure at a time. That is how I have made it this far.

Sonya and I talked about “scanxiety,” the anxiety I feel after the scan while I wait for the results. She asked me how I deal with it. I told her I always prepare for the worst news so I am not disappointed. We talked about meditation and the research that shows how beneficial it is. I downloaded the “calm” app and have been using it, but I also do some of my own prayer and meditation to calm down when I have waves of anxiety, or PTSD types of fight or flight feelings. Sonya explained that with cancer we don’t call it PTSD, but the emotions are similar because we have constant traumatic experiences. The trouble is, the anxiety and fight or flight emotions experienced from the trauma of scans, dealing with the fact that there is no cure to this, thinking about eventual death and dying, etc. produces cortisol in the body that is not good for healing, or fighting cancer and can lead to blood sugar problems and obesity, and other issues. I am still figuring out how to mindfully meditate and embrace surviving and living with cancer.

Here is a link to some classes UTSW offers to cancer patients and families. I think I will attend some of them, especially the class on music therapy and meditation.

I am so grateful to Sonya and for the help she gives me as I take the next steps forward and figure out how to live with cancer. I am a survivor.

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