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Have Ya Met, NED?

This week was a big, big week. You can probably guess by the title of this post how this whole thing ends, but I’m going to spill all the details because this week is one worth reliving. 

I started my Monday morning with a nice 3-hour session in a MRI tube. That’s right — it was time for another round of my least favorite game: Scanathon. This time I did much better during the Cardiac MRI and didn’t cry (well, in the tube). I’ve talked about it before, but I can’t sleep in there because during the Cardiac one, I have to do a TON of breathing sequences. I always try to count how many times they say “Please take a breath in… breathe out… hold your breath… please resume breathing” but I always lose count. I got to 70 this time before the contrast injection. After the contrast I only got to about 30 before I lost count again. I think it’s safe to assume it’s about 150-200 times. Ew. After the MRIs, Dad and I got some lunch and headed to Home Depot and Lowes (trying to match my kitchen cabinets for my next house project) to kill some time before my CT scan. The CT scans always seem to be at the other Mayo location and I don’t like that one nearly as much. It kind of reminds me of a sad airport. It’s strange that I even have a preference, but whatever. The Clinic was behind and apparently a CT machine was down, so the waiting took longer than normal. My normal Mayo was kind enough to let me keep my IV in from my MRIs so I didn’t have to get another one a few hours later. This was a great idea in theory, but by the time I had my CT scan, this stupid IV had been in a very inconvenient place in my arm for about 6 hours. I was over it. No matter how many CT scans I have, I still feel like I’m peeing my pants EVERY SINGLE TIME. What even is that!? Anyway — I finished the CT scan and was taken back to the nursing station to remove my IV. That’s when the tiredness and events from the day sort of hit me. I got insanely anxious and impatient that no one was coming in to remove my IV. For a few minutes, I almost felt trapped? It sounds dramatic, but I was exhausted. So, I walked up to the Nurse with tears in my eyes and begged her to remove this IV from my arm so I could just go home. Finally… freedom. 

One of the benefits of Mayo is how fast things work. I was fortunate enough to have appointments with my doctors the very next day to hear the results from the scans. I had no real concerns or reason to believe they wouldn’t be positive, but Cancer has a funny way of making you question quite literally everything. Mom, Dad and I go up to Mayo early Tuesday morning to meet with my Neuro-Oncologist. She’s normally a little more buttoned up. One time, I told her about my barf bingo card, and I’m not really sure we have the same sense of humor (tumor?) about this whole thing. She came in and immediately delivered the good news: my Brain MRI looked excellent. Furthermore, my brain tumor is completely resolved. Absolutely gone. All that’s left to show where that little guy was is the blue hair that I dyed over the weekend. 


My Dad asked her if we were NED, and she thought I had named my brain tumor that. No, Doc, we want to know if I’m NED! Once she clarified yes, we all smiled so, so big. And maybe there were a few tears. 

We left that appointment, went downstairs for some blood work and left the campus to grab some celebratory breakfast. As exciting as it was, we didn’t want to get too excited, because I still didn’t know the rest of the results from my other MRI and CT scan. That wasn’t for a few hours. So, we killed more time back at Lowes — this time looking for handles for my pantry doors. This is how weird my life now is — in the midst of all this, we’re just casually in the aisle at Lowes trying to decide which handles I like best for my new pantry doors and trying to forget that we’re about 2 hours way from knowing how the cancer in the rest of my body is doing. With that, we headed back to the Mayo waiting room for my next appointment. We got called back ahead of schedule (quite rare for a doctor’s office). Renee came in and told us more great news: everything is stable. In fact, my heart guy is now showing more signs of being scar tissue. This is the 3rd scan in a row that my remaining heart tumor and lung tumor have been about the same size which is INCREDIBLE. So guess what?! I’m officially NED. There is NO EVIDENCE OF DISEASE in this body of mine. 

FAM BAM — we did it!

After the appointment with Renee, we headed over to the infusion center. Although the NED declaration is probably the greatest milestone to-date, we’re not done yet. In fact, I’ve got 3 more treatments left as of right now, which carries us into late-October. We’ll rescan again then and talk about ending treatment and entering what my doctors are calling “surveillance mode.” I know I’m likely going to get scanned at some sort of cadence for the rest of my life, so I’m just kind of accepting that.

That didn't stop us from making NED jokes. I texted my boyfriend: "Hope there is room in our relationship for another person, because I got a new boyfriend and his name is

NED!" Dad, Mom and I went to dinner after treatment and joked that we would need a table of 4 since NED was joining us. I love me some good cancer jokes!

Now, how do I feel about it all? I’ve got a lot of feelings, naturally. 

On one hand, I couldn’t be more grateful. I feel so, so lucky for a multitude of reasons. I have so much gratitude for Mayo and the treatment options available for me. I’m so damn lucky with how my body reacted to Immunotherapy. The way things have turned out so far for me are nothing short of a miracle. 

But, there is an element of it feeling too good to be true — as cliche as that sounds. I was hesitant to say it out loud. My nurse at my infusion asked how my appointment went and I hesitated while Dad and Lauren looked at me with eyes saying “are you gonna tell her the news!?” I just sat there and said “It was good? Yeah… yeah… it was good. I think I’m NED?” It’s almost as if I was so unsure to put it out in the universe in fear that I’d be taken away or something. Even sharing the news on my social media felt strange. I wanted to shout it from the rooftops, but I also wanted to hold it so close to me so I don’t have to take it back later. I actually woke up Wednesday morning and re-read all my scan results and doctor’s notes in my portal. The previous day felt like an actual dream and I wasn’t sure it was real. 

I’m also annoyed that I’m not done with treatment yet. I think people assume that now it’s all gone, everything is over. But, it’s not. We’re closer to the “end” but are we really? Sure, we’re closer to the end of treatment itself, but with a Stage IV cancer diagnosis, there never is an end, in my opinion. I’m well aware that my chances of reoccurrence are high, as they are for any late-stage cancer. There is light at the end of the tunnel for treatment, but then there are more tunnels and new hurdles to get over. I will forever be a "cancer patient.” 

I’m tired. It sounds so trivial, but I continue to be so exhausted. I feel like no matter how much sleep I get, it’s not enough. Today on the phone my Mom was asking me routine, normal questions and I finally said to her “I just really don't feel like thinking right now. My brain is tired and I don’t know the answers and I don’t want to think about it.” We hung up the phone and I accidentally fell asleep on the couch for an hour.

I’m still trying to figure out how to cope with the emotional side of things. They continue to weigh pretty heavy on me. I’m frustrated that my week of good news didn’t erase the shitty feelings I have. I feel like I neglected actually dealing with the emotional piece of cancer since my diagnosis and it’s all bubbling to the surface now. I met with a social worker in-between my appointments on Tuesday and we’re exploring more options to help me cope with things. I’ve been validated in knowing my feelings are normal, but that’s not enough for me. I want to learn how to manage and work through them. 

Someone told me something this week that really hit home. All anyone can every promise about a cancer diagnosis is that it’s going to be like a fucking roller coaster. There will be SO many ups and downs — sometimes by the day and sometimes by the hour. But, regardless of up or down, the roller coaster is always moving forward


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