My Cancer Came back.. or did it?
WHEW! it’s been a hot minute since I’ve written a new blog post! More often I’m sharing snippets of my personal life on Instagram stories, or sharing some details in a newsletter, but this recent struggle REALLY knocked me out and for those of you interested in the details, I wanted to share what’s been going on the past week…
I went in for routine scan…
On July 29th, I went in for my regular CT scan. This was a routine, 2 year cancer screening to confirm that was still in remission from Hodgkin lymphoma. This scan was a little different in that it was full body, not just head and neck, so it required both IV contrast as well as oral contrast. (yuck!) I was thankful that they were both iodine based since I knew I react fine to that. (heads up if it’s iodine contrast it just tastes like water, woohoo!)
As you can see from the picture below, the results looked GREAT! I initially had 2 swollen lymph nodes, 1 of which was deemed “active” on diagnosis in 2019. After treatment, both still stuck around, but the right “active” one was no longer active. Each scan has been needed to confirm that it’s not growing.
Every single scan I have had in 2 years showed that it has not only remained stable, it has SHRUNK.
The results looked great!
Based on these initial readings my right lymph was measuring 1.5cm x 1.2 cm which was significantly smaller than the previous measurements of 3.7cm x 1.4cm. GREAT NEWS!!!!
Unfortunately, we noticed a discrepancy. In the summary of findings the radiologist said that one part trunk while the other grew… but wait. This didn’t match the actual measurements!!! So we decided to wait on the doctor but hope we were reading this correctly and that there was nothing to worry about.
I met with my oncologist August 6th. We sat down, and she seemed really happy with the results. The bloodwork that had come in looked good (we were waiting on some of it still) and the scan showed improvement. All is good!
But then we brought up the discrepancy…..she said she would confirm with radiology but she was sure it was just a typo.
And then things got scary...
First, I got a follow up call that the rest of the bloodwork came in and 2 markers were significantly out of range. So we scheduled a retest to confirm a week later.
Then on Tuesday Aug 10th, I got a voicemail from the oncology staff staying, “There WAS an error with your PET. The measurement read 15 (millimeters) but it was supposed to read 50 (millimeters)”.
Just to keep things all clear with the same measurements, this went from thinking it was 1.5cm to telling me it was 5.0 cm. This is a major difference and would mean that instead of shrinking, my tumor GREW and grew significantly.
The voicemail went on to say that I needed a follow up PET to know more. When I started listening I thought, “yes of course there was an error”, and then she continued and time slowed down. My jaw dropped. She’s saying the cancer is back….
I had to go in for a PET
The difference between a CT and a PET is that when you get a PET you get injected with radioactive sugar so that if the cancer is active it gobbles up the sugar and the radioactive materials bonded with the sugar light up on the PET. So a CT will show you lumps and bumps and the PET will tell you if it’s cancerous. I was essentially going into this assuming my tumor had grown, and what other reason could there possibly be except that the cancer was back?!
The problem, is that each scan submits you to radiation, and PETs more so because of the tracer that gets injected in your body. So these scans are not taken lightly, they are meant to be spaced apart, and there are only so many you are supposed to get in a year or a lifetime. As radiation is cumulative, it puts you at risk for secondary cancers…
I went to MyChart to take a look and realized that when my oncologist reached out to radiology, they did make an addendum. The frustrating part was that the addendum was made on Monday morning and the call I received was late Tuesday - leaving me no time to take action but lots of time to fret.
The trauma response began to hit me hard
Tuesday night was filled with many tears as I realized my cancer may be back. It was extremely traumatic as I tried to come to terms with the fact that I had just been told the week before that I was actually 2 years FREE of cancer.
I couldn’t sleep. I managed to sleep for about 2 hours, and then lay away until about 5am at which point I was able to get about 2 more hours of sleep.
Thankfully the PET was scheduled quickly and I was booked for Friday (the 13th no less!). Wednesday and Thursday were filled with research, prayers, worry, friends, hugs, more research, terribly morbid thoughts about how I wanted to approach this and what if I was dying….the PTSD with a recurrence scare is REAL!
I had a wonderful friend, who happens to be a nurse at Kettering, meet me and go in with me to my appointment (since I wasn’t allowed to bring family). SO many people were praying during the 2 hours of the PET that even though I felt really emotional driving to the appointment, I felt calm and peaceful while there.
Some other wonderful friends met me after and we grabbed some food since I had to fast all day for the appointment!
I needed to PLAN
Saturday and Sunday were also filled with research, planning, crying, list making and facing the reality that if my tumor really grew, it most likely meant the cancer was back. So before I got the official news, I wanted to have some thoughts organized so we could take action right away.
Again, I was supported through thoughts, prayers, texts, messages, well wishes and more. I was overwhelmed with the outpouring of love and care.
The results were IN
The weekend came and went, filled with good things like my Dads birthday dinner and a church concert. Sunday night I noticed a message from MyChart. The PET results were in. My heart sank. I was in the car with Patrick and he almost started crying before we even opened it. We were convinced it would be bad news. PET reports are a little more difficult to read than CT (at leas I think so) but one really important marker you look for is the Deauville score. 1-2 is cancer free 5 is active cancer. I saw a 2 on this report. After the week we had had I was too nervous to celebrate before hearing it directly from my oncologist.
Monday morning I received the call from a nurse, “Kylene, the PET results are in and it shows ZERO cancer. You’re good to go! We will continue with our normal monitoring but there is nothing else you need to do”
It was a MIRACLE
I barely knew what to do with myself. PRAISE GOD!!!!!!
Over the past week I struggled with my faith. I said not nice things to Jesus (my chiropractor told me “He can handle it”) and indeed He can. What many of you don’t know, and what I cannot fully share with you yet, is that the past 6 months have been trauma filled for me for other reasons. There has been a lot going on behind the scenes that has been extraordinarily difficult to process and work through and I have been in therapy since Feb because of it. So when all of this came up, I deeply felt that I could not handle both things at the same time and I was saying “WHY ME” to God. “Haven’t you given me ENOUGH already?!” for much of 2021 I have been wondering - WHY ME?????
But here is the truth. God WILL give you more than you feel you can handle. He will do that a LOT. And I don’t KNOW why He chose to gift me with all of these painful painful things in my life. But He did. And through the struggles I chose to trust Him regardless of the outcome. And I may NEVER know the purpose but I once again grew through this process. It brought things to the surface that I’m passionate about, that I want to accomplish, etc….
Ultimately, I believe that sometimes these things happen in order for God to get the glory in one way or another. When I shared a brief version of these events on FB the comment section gave me chills because of how many people I saw praising God and thanking Jesus for His love and the outcome.
Concerned about the process, I reached out to my doctor to clarify what happened… she did indeed look at both scans and saw what the radiologist saw.
Was this a miraculous remission?
Was it a fluke?
Was it an error?
All I know is that it’s a MIRACLE. And I’m THANKFUL to be cancer free for 2 years and going strong.
“Now all glory to God, who is able, through his mighty power at work
within us, to accomplish infinitely more than we might ask or think.”