Last Monday, I met with my oncologist. On Tuesday I posted the following to Facebook/Instagram:
I posted last week about going in for tests 3 months after my surgery. Yesterday, I found out that I still have cancer.
A day later, I still find myself trying to process the news. After my last oncologist appointment I was convinced that I would be a candidate for surveillance, but that is unfortunately not the case.
I may be starting chemo as soon as next week. I am looking at 4 rounds of treatments, 12 weeks total. Katie and I are working out the logistics of all of this since there will also be a new baby here at the same time! It’s not the best timing, but I don’t know if there’s a “great” time to have to do chemo.
The silver lining of course is that I’ve been assured that I’m working toward a cure, not survival. I have no doubt that the people I love will keep me lifted, and I have faith that my doctors and Vanderbilt medical staff are qualified and able to get me to the finish line.
As always, I appreciate everyone who has been checking on me, writing me, visiting, and praying. Please send me your recommendations for books, TV shows, movies, podcasts, whatever it is that you think I might enjoy, because I will need to pass some time while hooked up to machines…and also, stay tuned to my blog. I now have LOTS of new material to write about.
Later in the week, I posted this:
UPDATE: It took me a few days to post anything about what happened this week because it’s still hard for me to wrap my head around.
On Monday, as I said before, my oncologist was 95% sure we would be proceeding with chemotherapy immediately. The 5% difference maker was the “tumor board,” who would meet and give their approval to proceed.
But the tumor board could not agree on a course of action. The radiologists wanted to do chemo. The surgeons wanted to do surgery. They decided that without definitive proof that the lymph nodes were cancerous (as I mentioned before, they are in a spot that is nearly impossible to biopsy), they did not feel comfortable starting me on the arduous chemotherapy journey.
I should have been elated to get this news. But I had mentally prepped myself. I had decided and spoke to Vanderbilt staff to have a port installed. We had figured out a schedule for people to come and help us. And mostly, I was ready for some finality.
The anxiety that comes with waiting on these tests is hard to describe. I feel like I’m powerless, that this cancer may or may not be wreaking havoc inside me and there’s nothing I can do to stop it.
I asked passionately if we could just do chemo. My oncologist was respectful and understanding of my frustration, but she said no. If these lymph nodes are cancerous, they will not spread much before my next scans in March. So now I wait.
I’m happy I get to be present for our baby. I’m happy I get to help Katie with whatever it is that I can do as she goes through the childbirth process. These are the silver linings. But I’m also so sad and disappointed that this journey isn’t over yet.
I appreciate the outpouring of love and support that you all have sent me this week. I have soaked up each message, text, and call. As always, I will press on and will keep you updated.
I am incredibly frustrated that my cancer journey is not over. Last Monday I was devastated to learn that my medical team felt there was cancer lurking about in my lymph nodes, but I wasn’t shocked. When I received my CT scan results , I noticed that those nodes, the very same nodes which had been enlarged in September, had not changed much at all. When I went in early on Monday morning to do bloodwork, and I saw the test results which to my eye looked odd, and noticed my tumor markers weren’t lower this time around, I knew it wasn’t great. But still I thought maybe this was a normal part of the process. Call me naive.
When I was told I would need to be doing chemotherapy, and afterward talked to a pharmacist, I was not scared. I took mental note of the side effects she talked about. I heard everything, I lodged it in my brain. I soaked in the atmosphere…the room I was in, the pain I was feeling, and I decided to use it to push myself. Because I know that chemo is hard. Katie and I stressed about what we were going to do, but then we took action and lined up help. Having family and friends who are willing to drop everything for you is such a humbling experience. I know that everyone means it when they say that they will help, and I have a list of those who have offered.
Despite this, it’s hard to explain how deflated I was just days later when I learned that the tumor board could not agree on how to proceed with me. It reminded me of the early days after my surgery, when I reached out for a second opinion and was told that I should seek chemotherapy, and my medical team said “not yet.” That was tough to swallow then, and it’s tough to swallow now. Please understand that I don’t fault Vanderbilt at all, I know that they are professionals and they do this all the time. But my desires for proactive, quick care don’t really jive with how cancer works.
I am writing this post a full week later, and I would be lying if I said I wasn’t still deflated. I’m hurt, and angry, and sad, because I want this to be over. I feel a dark cloud just hanging over my head. It didn’t help that last week Katie and I also tested positive for the flu, and that is just wearing off now. If you know me, then you know I don’t really like wallowing in sadness. I am positive to a fault, some say, but I say it’s a good thing (naturally). In order to get myself back to an appreciative and hopeful stance, I’ve started thinking through the things I feel, the things I believe, and the things I know.
I feel that the staff at Vanderbilt has my best interests in mind over anything else. They know the risks of chemo and what it can do to a body, and without being 100% certain, they don’t want to put me through what could be devastating for my body.
Allow me to get spiritual for a moment…I feel the prayers and the positivity from my community. I wish I had the mental energy to respond to everyone who has gone out of their way to send me well wishes. Right alongside the pain and hurt I feel, I also feel the love and peace that God has given me, even (and especially) when I forget to ask for it.
I believe the science behind what my doctors have told me. I believe that they are doing all they can to ensure that the science lines up with what my body is reporting to them.
I KNOW that I will be fine after this is over. I know it will not likely be an easy path, I can feel it in an unexplainable way, but despite having to wait, knowing that I am working toward a cure is better peace of mind than I can explain.
Perhaps my biggest “I know” is that I know I will get to see my third baby boy born. I was terrified I would miss that moment, and now with the delay, I will have the opportunity. Not just that, but I will be present for Katie and the boys in the days AFTER the birth. Katie is about to go through a major life event again, and I don’t want to diminish or minimize that. She needs me, and so do the boys.
These few things are what is carrying me right now. I am thankful for the promise of health and even if I’m mentally not there yet, I know better days are coming. Again, I can’t be more appreciative of all of you who have been there for me, lifting me up and giving me strength. I will continue to push forward and will get through this.
Thank you for reading and supporting me, and I hope you have a Merry Christmas and a happy holiday.
I pray you continue to live day by day, trusting the Lord to see you through. I imagine it's crazy hard to be in the unknown, and I wouldn't handle it so gracefully, but your words demonstrate honesty and strength, and I find them admirable. We are praying for you and that you have more answers soon, but that you find a peace as you wait and enjoy your time with family, friends, and the new little one. Praying and hoping the preparation, delivery, and adjustment goes well, because I'm guessing it's soon!
I’m praying for you and your family!