I didn’t mean to let 3 weeks pass by with no update but I did and now, yet again, things have changed quite a bit.
I’m currently in the hospital in Austin and will be for at least the next week. I was supposed to be going to Houston this week to get my second dose of my trial drug, but instead I need emergent surgery. The single vertebra (T5) of mine that has had cancer in it for a while has progressed and as a result is now compressing my spinal cord and causing some pretty scary symptoms like I can barely control my legs to walk and I have totally lost control of my bladder function. Spinal surgery sounds pretty scary and like something I would normally take longer to consider, but if I wait I am definitely getting worse and if I do it I have a shot at getting better. My pain is becoming less and less well-managed each day, I need oxygen because I don’t get enough on room air, and I need help with things like putting on my socks.
This also puts everything else up in the air. When can I get my next dose of my trial drug? This surgery only helps with the compression symptoms, but not with the growing cancer in my spine and this surgeon thinks that radiation will probably be the answer there, sometime between 2-6 weeks post surgery. I have no idea what recovery will be like, what my new QOL will be. I have been in an intense amount of pain lately so decreasing that would be incredible. All of this, we just have to do the surgery and see how recovery looks to get an idea. Oh, and while the pain is likely to improve right away, the bladder and gait issues will probably take longer and are tough to predict.
I am going to be coming home to many new medical devices. I had already bought myself a shower chair last week, as well as a recliner with a feature called lift assist, that helps me get out of the chair more easily. I think there will also be a hospital bed and maybe a new walker and maybe a bedside commode. Even my house is going to make me feel like a sick person.
My joy for this upcoming week is that I am in Austin and I am allowed a single visitor each day. They can come and go, it just cannot be multiple people in a single day. So my dad hangs out with me a lot and Wes can be here on the day of surgery. Thanks for following along, y’all.
Welcome to 2021, the 7th calendar year since my cancer diagnosis. I love being able to type stuff like that, to see how very long I have been facing this disease and the associated treatment. Somewhere along the way I stopped having an interest in resolutions for the new year. There is nothing magical about the date 1/1 that suddenly makes it possible for me to become a different person; if I want my life to be different I can start that process any time. That said, I see the value in assessing the previous year – what brought joy and sadness and fulfillment – recognizing that things that bring me sadness are not necessarily bad and productivity is not my ultimate goal. In my reflections I noticed how much time I spent short of breath this year and realized I wanted to reconnect with my breathing more this year. This means the deep breathing of meditation and it means breath representing life and it also means using my inhaler and it means pushing myself physically to where I am breathing hard and maintaining those muscles.
Speaking of breath, last week I had a bronchoscopy, a procedure to remove tumors growing into my airways. At one place where I had nearly 100% blockage they were able to reduce it by 95% (!!!), however at another location with the same near complete blockage they were unable to remove the tumor. The pulmonology team is not sure how much better my breathing will be overall, but I can already tell the difference in how out of breath I get doing daily tasks. The bronchoscopy made my trial team decide to push out my start date from last week to this week. I was really disappointed in that choice at first, but ultimately it was the right one; I really did need that extra time to heal and not wonder if I was feeling the way I did because of my new drug or the procedure.
I am still glad that I shared here that I was going to be getting my trial that day because a young adult cancer friend from Austin reached out that she was going to be there that day getting an infusion, and maybe I could stop by. I am so so glad she reached out and that I was able to go visit her. The infusion room can be lonely, especially now when you can’t have your normal people there visiting with you, and it was so lovely that the stars aligned for this meeting. Friend, I’m sorry I was such distracted company. It was the day after my procedure and I was pretty miserable with pain, so I wasn’t the sparkling visitor I aim to be.
Then I got to go home and be with my family again for 4 whole days! It was delightful to just be in a room with my daughter and/or husband and listen to them talk. Monday we had to return to Houston and got humbled. I took too long showering and when I got out and sat down to recover I coughed once and immediately started throwing up into the conveniently placed barf bag right next to me (I get them from the hospital a lot and stash them around my house). It took a couple hours before I was ready to dress and finish packing and face the car. Apparently during that time my dad pulled my husband aside to say, “It’s easy to forget how sick she really is,” which is heartbreaking to hear and know is completely true. Even at home where I do talk about feeling my worst, they mostly hear about how good I feel because I just don’t like to spend my time focused on feeling yucky.
Tuesday was my final pre-trial CT and my first pre-CT vomit. I am just not doing well on that front lately, y’all. Once it starts my appetite goes but having a too empty stomach for too long seems to be a trigger. And on top of all the coughing I have been doing lately it just destroyed my back muscles in a way that I am still trying to heal. So it worked out that I spent Wednesday sitting in an adjustable hospital bed for 10 hours getting my new trial med and having an entirely uneventful day. And since then I continue to have no noticeable side effects. So I can focus on dealing with the lingering ones from the bronchoscopy – coughing, pain from coughing, trouble sleeping because of the aforementioned. I’m learning how to use my new inhaler and nebulizer to make breathing easier and I don’t know yet if they’ll be permanent parts of my life or just get me through this time period.
My joy for the week is how snuggly my husband and daughter are the first 24 hours after I get home from Houston each time. I am always sore and tired after getting out of the car and just park myself on the couch under my favorite blanket. Having the people I love most come to me with their love helps revitalize me every time. I hope you have equal joy in your lives this week and for the year to come.