Zanidatamab and Xeloda Treatment #9 and #10 Update - 8/29/26
I wanted to provide an update of what’s going on with me lately. It’s been a few weeks since I posted my latest scan results. That is something I am still processing and every day choosing to move forward despite the bad news.
I mentioned there was growth in a few lymph nodes and that I would get a scan 4 weeks later. The oncologists at Mayo came together and decided that I could continue on the trial and just get another scan in 6 weeks, not 4. So I am on my usual schedule right now and my next scan is scheduled for Sept. 17th. I am already preparing for more growth again in my lymph nodes and they said if there is growth, we would likely move onto another treatment. The waiting period in between scans and living in this limbo state is exhausting. I had high hopes for this trial drug and just means I might need to move onto something hopefully better. However, the fact that I keep having progression on whatever drug I am given is quite frustrating. Why can’t I be someone who stays on a treatment for a long time. I am trying to accept these circumstances, but it is hard. I have chosen to mostly ignore or pretend that nothing is happening, just trying to live my life as if I don’t have cancer.
In terms of side effects, lately I have been having more fatigue than normal. I end up resting my eyes or napping in the afternoons, which has helped some but then my quality of sleep at night gets to be a little rough. I had a meeting with my psychologist and she prescribed trazodone to help with sleep, but that drug seems to make me groggy in the mornings, so I am not taking it so much. I already take olanzapine for sleep at night and that is helping a little bit, but I seem to have poor sleep overall. I am working on my fatigue and trying to manage it as best as possible.
In terms of how I feel physically otherwise, I would say I feel ok overall. Lately I have been having stomach aches, mostly at night and wondering if it’s the lymph nodes in my abdomen causing pain. My oncologists said the lymph nodes should not be causing me any pain though, so it is likely just something I am eating. That and I have lower back pain every now and then, probably from tight muscles I assume, so trying to get massages scheduled to help. In addition, my lungs seem to hurt when I take a deep breath and not sure if it’s because of tight muscles in my chest or maybe inflammation in my lungs. I guess we will see what my next scan shows but of course my mind goes to cancer. Other than that, I have mild hand/foot syndrome from Xeloda and have a few cracks in my hands that hurt pretty good, but we are managing that with some gel and creams and seems to be an on and off thing.
I’ve been working on my mental health lately and it’s still a process. Working through feelings of my life being shortened, like I am running out of time, and trying to focus on the here and now. Working through feelings of being bitter seeing other people get married, have kids and live their lives, whereas I am just trying to make it through the day and survive my life. I know these feelings are not good ones to have, so I am working through them and trying to be grateful for what I do have. I am also realizing who is there for me during these hard times, who makes our relationship a priority and who shows up even when they are busy. Those people are my people. My stage 4 thriver friends are the bright spot in all of this as we can vent to each other, and everyone just understands what we are going through. I also want to give a shout out to my friend Steve who has joined me for my appointments, so I don’t have to go to Mayo alone. Also thank you to my parents and family for always being there for me too. I love you all. Cancer just shows you who shows up, who makes time for you, and who makes you a priority. Sometimes it’s not who you would expect and then also you think the people who you do expect aren’t the ones who are there for you the most. Just feeling thankful for those that have shown me they care.
But through all the physical side effects and mental health challenges, I have been living my life and focusing on each day as it comes. I mentioned last time I had college friends visiting me and we had the best time together. I appreciate them making time to come visit me when I know they have families back home. Having them here and doing lots of fun things together just made me feel so happy and special. Grateful for them and our friendship. We are planning to do a girl’s trip sometime next year and I am looking forward to that. Other fun things I have been up to is hanging out with my stage 4 thriver friends as we rode jet skis together, went fishing with my friend Amber, and had karaoke night with some of the ladies. Just feeling so so grateful for my new friends who are in the same boat as me. It really is a special bond that we have, and I love them all so much. Other fun things are I went to Pink Power Foundation Mocktail making class, went to a comedy show and had coffee with some of my friends. Just trying to fit in all the fun things with my time and make the most of it. I also recently went on a trip to my friend Steves’ parent’s cabin up north. I love going up there and just getting away. It was so nice as we went on the boat, paddleboards, sat by the fire, had good food and in good company. Obie and I really had a nice time, and Obie was living his best life.
In other news, I recently decided to get hair extensions. I went for a consultation and thankfully my hair was long enough to get them. I am so happy with how they turned out! I finally feel somewhat like myself again and I am glad I have hair back that I can style. Cancer took away my hair and it’s not just hair but an identity. Having hair gives me confidence and joy, and I will spend all the money on that any day. It’s not cheap but it is worth it.
In terms of the dating world, I am still putting myself out there and on the dating apps. Nothing is sparking my interest however and it’s rough out there. I was talking with this guy for a couple weeks and tried to meet up in person, but he was flaky and didn’t seem to want to meet up, so that was that. I know I will have to go through some bad ones to really find what I am looking for and I still have hope. Dating is hard though, but I am still willing to put in the work and put myself out there with the hopes of finding my person.
I do have some exciting things coming up. I decided to book a solo trip to Maine Sept 9th through the 12th to just get away a week before my scans. I am so excited about this trip. I plan to go to Portland, Maine and then drive to Acadia National Park and stay in a Yurt for a couple days, then drive back to Portland to spend the day there. It’s going to be such a healing trip and hopefully I will see some fall colors. Also coming up I am going to the MN State Fair on Monday which should be fun and then my mom is coming to visit on Sept. 13th. She will be here for my next scan which I am grateful for.
Among all these big things lately, there are also a lot of small moments I don’t take for granted. Beautiful days, nature walks, cuddles with Obie, talking to a friend, enjoying a good tv show, reading a book, doing puzzles, eating delicious food. Savoring all the little moments in life and realizing what matters.
As I close, I just want to say that life is precious. We always think we have time, but you never know what could happen. When you are given stage 4 breast cancer and a terminal diagnosis, you see that time is running out. You see clearly how time really matters at the end of the day and what really matters is how you spend the rest of your days. I will keep moving forward, focusing on the good, taking in the bad, and fighting like hell for more time.
Love, Stacy
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