Sean’s Story

Site created on January 18, 2021

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Newest Update

Journal entry by Sean Johnston

I'M CLEAR!! 

My last scan was in May and the result of that one left me broken hearted. But I had my post-chemo regimen scan on July 19 and I AM IN REMISSION! It felt like I would never get to say this. The amount of relief Sarah and I feel now can not be described in words. 

After my last chemo, Sarah and I were extremely happy to finally be done with that long seven month journey. We were tired of the smell of saline, the sound of beeping machines, driving into the city and back, the list goes on.. Chemo is not easy. Yes, we were excited for all of that to be over but we knew I had one more scan and THAT was the important scan. The one that would tell us if the chemo worked and what was next.  Since my 2nd to last scan showed a small bit of something (either inflammation or residual cancer), we had started to talk about the possibility of more treatment should it still persist after finishing chemo. One option was radiation. Since the little bit that was left was very small, and located in one spot, the attack plan of radiation sounded promising. Radiation would have been a two week ordeal with treatments everyday for about 15 minutes. It sounded like the side effects would be very minimal because of how focused the radiation would be.The second option was stem cell injections. We only touched on this topic shortly because this was only if the cancer grew. Thankfully neither of these were the case.

When we got the call with my last PET scan results, I was making breakfast. Something that has become our favorite morning activity together. There are a million ways to cook eggs but Sarah insists my egg flipping abilities far surpass hers, so it is my duty to cook the eggs while she makes the toast, sausage links, or fruit salad. My phone rang and everything stopped. I will never forget that moment and the look on Sarah's face. We both knew the only person that would call that early was Katie, our nurse practitioner. Before we could start thinking of the worst case scenario I answered the phone. She sounded quite happy right off the bat so Sarah and I just looked at each other waiting for the words to come out. Katie quickly explained that the scan was slightly better than the last, and the level of brightness for this small area was now half of what it was from before. She continued on saying that Doctor Gordon said this result with the size of the affected area was consistent with inflammation and not something he considers active. This meant I was finally in remission! Sarah immediately started crying and dropped down to hold our dog Emma. I just stood there with my eyes closed for a second or two, finally accepting that I didn't have to feel like a lab rat anymore. I didn't have to worry about new treatments or how sick I would feel afterwards. I didn't have to wonder about when I could finally get back to work. We could finally think about our future. There would soon be a time I would not be immunocompromised anymore and Sarah and I would not have to take a ridiculous amount of precautions to go out and do simple things. It was all finally over! The rest of the day was a frenzy of non-stop calls, texting, posting to instagram and facebook. It was interesting watching Sarah because she was working from home and I could tell she was having a hard time focusing on work. We could finally relax. The next time we would see Katie and Dr. Gordon would be 2 days from then for the follow up.

When we met with my oncologist, Dr. Gordon, and nurse practitioner, Katie, they showed us the scans and reiterated what Katie told us on the phone. They let us know that we "would be friends for life". That meaning, I will have consistent visits and scans going forward. The standard is to have a follow-up visit every three months and CT every six months for the first couple years. After two years, it turns to chest x-rays instead of CTs. Since I still have that little mass, which Dr. Gordon believes is inflammation, we are going to do a CT in 3 months (instead of 6) just to be sure. They said I could go back to a normal diet, get my covid vaccine in three weeks, discontinue taking my immuno medications and I could return to work in a couple weeks! Finally normalcy is on the horizon. WHAT. A. RELIEF. 

Thank you to everyone who has helped us through the last seven months. It was nice knowing everyone was rallying for us and we didn't feel alone. To show our appreciation, we will be hosting a open-house/barbeque sometime after I am no longer immunocompromised and have my vaccine. Stay tuned for details!

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