It's been awhile. I've been pretty silent for a few reasons. Honestly, mostly because I am tired of sharing bad news and sharing information without knowing a path forward.
So here's a quick recap of my last few months of scans and disappointments. I don't have many answers and that's hard for me. I am stuck in the middle of I know this much but don't know where to go next and that makes hoping hard. I have tried to explain the last few months as best as possible below. I've included my feelings and frustrations scattered throughout, but the final update that dictated the "false hope" title is located at the bottom if you don't want to hear the nitty gritty scan after scan details.
The week of May 3rd I was scheduled for a whole body scan with a tracer dose of radioactive iodine. This scan would allow any cancer in my neck to suck up the iodine and light up on the scan. This scan also requires a low iodine diet (LID) 2 weeks prior to the scan to starve your cells of iodine (no dairy, no iodized salt, no seafood, no eggs, and the list goes on) plus two days of Thyrogen shots to skyrocket my TSH level so my body will soak up the iodine better. I went into this prep week knowing that last time I did this, I was crazy sick from the prep medicine and the actual iodine. This time, I woke up the morning after my first dose and felt like a million bucks. I was so surprised, but glad things were gong in my favor so far.
I had my scan on the Friday of that week. I went in with not a whole lot of scanxiety because I had just accepted the fact that it would show cancer, I would take another full dose of Radioactive Iodine and call it a day. I'd accepted my fate because that's what all the signs had been pointing to. I'd go in, get the scan done, and go get myself some dang ice cream that I couldn't have during the LID.
I waited a few days for the results, which is normal for this type of scan, but when I received a phone call from my doctor's office on May 11th, my heart still dropped. The nurse answered the phone and said she wanted to share my results with me and if now was a good time. After I said yes, she continued to share the news.
"Your scan shows no evidence of cancer anywhere in your body including your neck."
I was silent, and as I processed things I wanted to hear it again. "So... there's nothing?" I said in total disbelief.
"No, nothing. This is good news!" she cheerfully reiterated.
I quickly hung up and stood in silence for a moment. Could this really be happening? A page turning? Finally able to move on and stop having people poke and prod my neck and arms for at least a bit? A chance to finally share some happy news with everyone and celebrate for once instead of grieve and mourn?
I processed it, I quickly called Dilan and told him. As I did so, I was crying and he asked why I was crying. I couldn't honestly tell him why. Maybe I was relieved. I was happy. I was so surprised. So many emotions all hit at once.
After this news was shared with me it was so exciting to share with everyone. And each time I shared it or heard Dilan tell someone, I still couldn't fully believe it.
Dilan and I told our families, we bought wine and champagne and celebrated with our life group that night. Dilan and I were in such a fog of disbelief - we had both accepted the fact that this would confirm that the cancer wasn't gone, not confirm that we could move on with our life.
We shared the news over and over with so many that had trudged through the valley with us. I sent out a school wide email... those of you in education know that this means something is usually a BIG DEAL. I started getting myself excited at the possibility that my cancer story was finally turning to a different page, a happy, unexpected one. I tried to share this news with everyone, but always careful to include the caveat that I had a scan on the 19th that would confirm, and then I would feel that it wasn't just a false negative. This is what living scan to scan has done to my processing of results - I've found myself including the "what if's" way more than I ever have prior to the miscarriage and cancer. Maybe it's to vulnerably share all the possibilities, maybe I do it to protect others, or maybe I do it so I can save myself from utter disappointment one more time.
I went into my scan on the 19th feeling crazy amounts of anxiety. I went in thinking that I had one clear scan, there's no way that this scan could show the same thing. I couldn't get lucky twice. But deep down, I wanted SO badly for this to show the same thing. I had already started hoping and dreaming and soaking in the reality that Dilan and I could possibly stop living in the waiting.
The technician was great and told me up front to give me peace of mind that many of the lymph nodes looked normal, but she could see a couple that were a bit off. She then sent if off to get more detailed results. The next day I got the results. There were in fact three spots that the doctor notated - which is less than last time I had an ultrasound, but did not match up with the "all clear" I received a week ago. My head started to spin, I had even more questions than I did answers, and somehow my dreams were shattered once again.
I had a follow up with my surgeon the next week and shared that information with her. She questioned why I hadn't already done a full dose of Radioactive Iodine, I shared we were
working through some scans and shared what the scan showed. I tried to share that we had many questions - more than we had answers. She said we could look into surgery #3 as an option, but wouldn't be sure what was in my neck unless we took it out or did a biopsy - they could be cancer that doesn't suck up iodine or just reactive lymph nodes and not cancer. But we were talking about surgery #3 and putting radioactive material in my body a 3rd time without actually knowing? No thank you - something didn't sit right.
I had a follow up later that week with my endocrinologist and shared my same frustrations with her. After discussing everything, she shared a couple of options with us. One, go to MD Anderson in Houston. Two, go back to KU med to get a biopsy and go from there. Almost immediately, Dilan and I chose option #1. At this point we had already discussed MD Anderson together and felt that that was the right place to be because we needed answers that no one seemed to be able to give us.
So, we will be headed to Houston later this month to hopefully get some answers. We will be down there for a few days for them to rerun scans and talk through the results. It worked out well that we were already planning to be in Texas for a wedding the weekend before my appointments - so maybe that's my God wink that this is the place we are supposed to be. Going to a place this "well known" for cancer scares the crap out of me because that means it's a serious thing, but I'm also hopeful that we find answers - maybe not the ones we want but at least something to gain traction from.
I am finding it difficult to process this latest setback for many reasons. Honestly I feel physically the best I have felt in YEARS - I finally thought I was figuring out what normal was supposed to feel like. I started to get hopeful and found it shattered once again. I got so excited. I find myself in a state of bitterness, resentment, frustration, and realization that once again my life is put on hold in many ways. I find it so easy to see what everyone else has in this season or is moving on to, babies, new jobs, new house, adventures besides doctors appointments and get jealous and even deeper into resentment.
On the flip side, I realize that there is so much I have gained in this season - as hard as it was and is. I've gained a voice that protects myself and advocates for myself, I've gained a deeper understanding of trauma, grief, and disappointment that allows me to understand other's stories on a different level and support others in ways that I never even thought about. And even through the valley after valley we have had to face, Dilan and I have grown closer than I couldn't have ever imagined. Our conversations are deeper, we cherish the moments together more than when we were in a long distance relationship (which I din't think was possible), and we have had opportunities to grow individually and as a couple that we wouldn't have probably made time for otherwise.
So, processing the setback is hard. Does it suck? Yes, so much so. It's both good and bad. It's a growing chance but also not one I would wish on anyone or that I would choose to go through. I'm reminded once again that the scope of my control is small.
I wish this post would have more answers for you and for me. I wish this blog could have been cut off after I told you that my scans were clear and I celebrated with wine. But unfortunately, that's not the reality of a cancer diagnosis - especially an apparently stubborn one. I might never understand why my cancer story has gone on this long, or why I am the one who's story seems to be on an endless hold, or why so many prayers feel like they've gone unanswered. But what I do know is that I will continue to fight, I will continue to soak up the small joys and not take things for granted, I will continue to work through the hard emotions because staying in them or ignoring them only robs me from the joys and growth I do have, and continue to share my journey as much as I can.
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