Now that I can take a deep breath, I feel the need to fill you in on what’s been going on since I finished chemo in early August.
After you finish chemotherapy, you are given a scan to determine the effectiveness of your treatment. This scan determines whether or not further treatment is needed. Depending on the type and severity of the lymphoma some require radiation and then a stem cell transplant.
For many, this is a pivotal scan—often determining whether or not they are in remission.
Fortunately, I have responded very well to my treatment. I was able to take part in a clinical trial at Northwestern where I did 3 months of immunotherapy followed by 6 cycles (12 treatments) of AVD chemotherapy over the course of 9 months. I was nearly in remission after just 3 treatments of immunotherapy and midway through chemo, on May 1st 2018, I learned I was in remission from Stage 3 Hodgkin Lymphoma.
It was an unbelievable feeling. Literally unbelievable because part of me was still in the fight. I had over 3 months of chemo to endure before I could “ring the bell” and declare myself officially done with treatment. I still could not fully grasp that I was in remission.
My PET scan in April showed no evidence of disease, but I still had to finish treatment. Try as might to tell myself the worst was over, I knew in the back of mind I still needed a clear post-treatment scan.
I have been feeling better than I have in years. I have more energy and relatively no side effects from my treatment. But still I knew I had to hold my breath and wait.
Knowing I was already in “remission” from my mid-treatment scan, I was feeling cautiously optimistic. That optimism was soon put to the test when I learned that my post-treatment PET showed a “new” area of concern in my stomach.
“We need to do another scan to determine what this is. It’s very strange. It’s highly unlikely that it’s your lymphoma. It’s more likely that it’s a fatty deposit or inflammation, but since this is new activity we need to investigate. Let’s wait two weeks and do a CT scan of your stomach” my doctor told me.
I swallowed hard and tried to find the bright side. “Well, I’m glad I’m being monitored so closely. I still have several treatment options available if it is lymphoma” I told myself.
But TWO weeks? I may have well been told to come back in TWO years. The wait was agonizing.
“They seemed pretty confident it was nothing, right?” I asked my husband, still stunned as we walked to the waiting room. He reassured me that they thought it was probably nothing, but they had to do their job and investigate.
I did my best to stay busy. I worked as much as possible and tried to plan many activities with family and friends to keep my mind off the wait.
When my mind became cluttered with the what-ifs, I did my best to focus on the things I was grateful for to help pull me out of focusing on the agonizing what-could-be’s.
This helped me realize that these TWO weeks of uncertainty were actually a kind of blessing.
I realized that no matter what my scan said, I was in REMISSION for all I knew right NOW. While that could change in the near future, I did not know that yet, so I could still enjoy being in remission and out of treatment for the first time in months.
But still. My mind kept see-sawing between hope and dread.
It’s only natural.
Then I saw the written report of my PET scan.
“The PET demonstrates a new enlarged 1.8 cm mildly hypermetabolic lymph node in the aortacaval node station which is highly suspicious for recurrent disease. Deauville score 4/5.”
My heart sank. This seems like my cancer could seriously be back. How could this be? My doctor seemed so confident it was nothing.
But that’s the thing when you’re dealing with cancer. It comes out of nowhere and often strikes without warning.
When you’re dealing with cancer, either your own or in someone you love, it’s like you are perpetually walking on a tightrope of emotions balancing somewhere between hope and fear. You are constantly weighing your options and rehearsing what-if scenarios. You are constantly evaluating what news to keep to yourself and what to tell those you care about. Because sometimes the reality of what you’re facing is just too plain difficult and scary to put into words.
Because once you’re in the fight—you’re in. There’s no going back.
This is the fight of your life, and just like life—it is unrelenting. There are highs and lows, victories and defeats. But no matter what you are facing, I believe there is always hope—you just need to adjust your focus sometimes.
Yesterday, I had mentally prepared myself to hear the news my cancer was back. The radiologist’s notes gave me every indication to think I had relapsed. I started gearing up for the fight. Thankfully, I can now take a rest from this battle.
It turns out the “new” activity that the PET showed, has actually been there since my initial scan in December of 2017. The CT showed it is actually not enlarged according to their criteria and it did not change since my prior scan. What the PET scan was most likely picking up is called a fatty hilum around the lymph node in my stomach. The fact that this fatty deposit is present indicates this is a normal lymph node and not cancerous. It also turns out it’s so tiny that they couldn’t biopsy it if they wanted to.
A complete victory! An answered prayer.
I am thankful I will continue to be monitored closely. I will have another scan in 3 months. Thank you for all your prayers and messages of support. It means so much!
Post-Treatment PET Results:
Left is scan from December 2017. Right is most recent PET scan.
This is a mid section view of my torso. The white part is my spinal cord. To the left of center you can see the area in yellow that is the reactive lymph node in question.