The Fearful Pause: Navigating the Dread of Lymphoma’s Possible Comeback

I didn’t post about my last 6 month follow up appointment on social media like I normally do. Usually, I try to share my follow up appointments in real time, but I think the shame of being sick gets the better of me sometimes.

The last week of July, I was going about life and realized I had been feeling nauseous off and on for about a month or so. I didn’t really think much of it, but my 6 month follow up was coming up in a month - so I sent a message to my oncologist - I figured she’d tell me it wasn’t related to lymphoma and I should see my Primary Care Doctor.

Instead- she responded that we should move up my appointment- could I come in tomorrow? (Wait, what?!)

This took me back. The shame I felt at diagnosis crept back, I felt my PTSD flare up - while I wanted to tell myself that she was just taking a cautious approach (which is good) I couldn’t help after reading her response, but to feel terrified that something was really wrong.

If you know me (or follow me on social media) you know I’m pretty much an open book. An oversharer. I share my cancer journey to help others, because people who shared their story were so pivotal to me in the early days of my diagnosis. When I share, I often hear from others early in their cancer journey. Looking for answers like I was. Looking for someone to help them better understand what they are going through.

Anyway - the fear kicked in, and with it my shame. So, I opted to travel through alone this time. Not totally alone, because my mom and husband knew what was happening, but without sharing publicly or with people outside my four walls. It feels difficult to project strength and positivity - to lead others when you’re feeling vulnerable and weak. I thought if I shared this potential setback - in the moment, while not knowing what the answer would be - if I opened the door to what I was facing... Then people would want to know more than what I'd be able to tell them. They’d ask questions to which I would be unable to provide answers. They'd want to hear that everything is ok. Except at the time, I didn’t know if it would be ok.

The doctor’s concern was just enough to make me wonder if this was it. Could this be the appointment that was going to kick me out of "watch and wait" and bump me back into treatment? I mean, I think this and feel this to some extent before EVERY follow-up appointment. Which is every six months now. So you'd think I'd be used to the rhythm of it. And to some extent, I am. But, normally the voice in my head saying - “it’s fine, everything is fine, I’m fine" - is much louder than the voice telling me - "the lymphoma is acting up and we need to start treatment again.” This time felt questionable. It felt like those voices, equally matched, were facing off head-to-head in a boxing ring, and I really didn’t know who would win this time.

In case you're new to "Watch and Wait" , I'll explain what watch and wait means for me. I have Marginal Zone Lymphoma - I have cancer, but it is indolent - which means it grows very slowly, there is no cure, but if it is not causing symptoms we don't need to treat. Crazy right?! I have had treatment - because when I was first diagnosed, I was having symptoms (more on that another time) - the goal of my treatment was never to cure my cancer but, rather to stop the symptoms. Once the symptoms were in check, I transitioned to watch and wait. Others with the same cancer as me (not experiencing symptoms) may go directly into watch and wait without having treatment at the time of diagnosis. The idea behind it (as explained to me) is that there currently is no cure and it is more like a chronic condition, like heart disease or diabetes. We need to monitor closely because this type of cancer can transition to other types of cancers, and it could have, what I am calling flares, where I could need treatment to get symptoms in check.

My toxic trait - convincing myself if I don’t say it out loud it’s not real. However, the reality of not saying it out loud means I am silencing my true self, and my emotions, and in the end only make it harder on myself because I feel like I can't (shouldn't) talk about how I'm feeling.

When I was first diagnosed I didn't want to say it out loud. If I you don't say it out loud, it is not real. I was ashamed of my diagnosis because on one hand, I felt like I'd done something wrong - at the time, I believed that it was my fault that this was happening to me, and so I was embarrassed. I had convinced myself that if I never said it out loud... If I never told people, "I have cancer" maybe it wouldn't be true. Obviously, none of that helped me during the early days of my diagnosis and so I am not sure why I thought holding it all in would be any different this time.

The truth is by not saying it out loud I avoid my feelings and pretend it’s not happening. Not good.

Last month was really busy for me with work. I couldn’t go to the doctor the next day, so I scheduled the appointment to go in one week later. They took blood as usual, then my mom and I met with the oncologist. She’s a nurse practitioner that works alongside the doctor. It was my first time meeting her - only my second time at this hospital since moving to Maryland.

She was very thorough in both questions and her exam. She said my blood looked good, but given my history she’d like to run a few more tests and get a CT.

I had barely pulled into my home driveway when I received a call from the doctor's office - they had a cancellation for a CT. Could I come in tomorrow?! 

This sent me reeling.

Was it really just a coincidental opening? Did the doctor put the order in as STAT so I’d have the test done right away? Was she that worried?

Ugh.

Of course I didn’t ask the scheduler on the phone, I didn’t want to take the chance in knowing that it was not a coincidence.

As I said, last month was a really busy month for me with work. I was getting ready to travel to NYC to give a presentation for work… Part of me wanted to throw in the towel on the presentation, go get the CT done, and crawl into bed and never get out again.

Another part of me - still not sure if this side was coming from a place of strength or complete denial - but, this part told me to pull my shit together. Go get that test and hop on the train to NYC.

I accepted the available appointment for the next day and bought a train ticket to NYC scheduled to leave three hours after the CT.

They told me no food or drink for 3 hours before the test. Pretty standard, but I was excited when I realized three hours meant I could still have coffee (WITH cream!) - if I did it early enough. Coffee is always worth waking up for.

It's the little things, right?

My last CT in Florida was pretty high tech - I didn’t have to drink a nasty bottle of contrast and I didn’t even have to remove my jewelry or change into a gown. So that’s kind of what I was expecting here too.

Drinking my Omnipaque Oral Contrast in preparation for the CT

I was surprised when I was called back and given a bottle of contrast and a big cup of water to drink before the test.

About halfway through the bottle of contrast, fight or flight crept into my mind.

"Does the contrast cause any side effects? I have a train to catch to NYC after my test." I asked the nurse as she was putting in my IV.

In the back of my mind, I thought if this is going to make me sick I can skip NYC and go home, crawl into bed, and never get out again. Again, I like to avoid anything that could be difficult or take me out of my comfort zone. So public speaking is definitely not my favorite. And what better excuse than the cancer card - but then again - I'd have to say it out loud. Admit what I was going through, which is exactly what I was trying so desperately to avoid.

So I opted to suck it up and keep going.

“Usually there are no side effects” she said. “You should be fine."

Other than drinking the contrast, this CT was high tech like the one in Florida - the test was quick and painless. I mean, there’s always that awkward moment when they release the contrast in your IV and it feels like you’ve peed your pants (no really, I swear, it’s so weird). I always make a joke when this happens because I feel like in case one of these times I actually do pee my pants - then they'll know that I thought it was the contrast faking me out.

Thankful that it was over, I pulled myself together and headed outside to call an Uber. As you might expect, there’s an elephant in the car with you when you call an Uber from a building clearly labeled as a place for cancer treatment. But he didn’t ask and I didn’t share.

So we just rode along quietly.

I was thankful he didn’t ask. I needed to get back inside my bubble of not saying things out loud and making them less real.

On to New York!

Twenty minutes later, as I settled in on the bench to wait for my train, I wondered if it was too early to check MyChart. They said the results would be there BY 5 p.m. at the latest.

It’s 2:30 - the results could be there.

I log in and search through my test results.

Nothing.

Refresh.

Refresh.

Refresh.  Refresh. Refresh.  Refresh.

After refreshing about a hundred times I told myself I could only check MyChart every half hour.

At 3:30 I boarded the train and checked MyChart. Still nothing.

4 p.m. Nothing.

4:30. Nothing.

5 pm. Still nothing. Ugh.

At 5:30 - I opened MyChart and found my results.

Three pages of narrative and impressions from the radiologist.

I read through as fast as I could trying to decipher the medical terminology as quickly as possible. While simultaneously scanning for buzz words that may indicate a problem.

I immediately screen shot the results and sent them to my husband.

There’s a lot of information, but neither of us are clear on what any of it means. So now we wait.

I don’t sleep much that night in the hotel.

I woke up early to get ready and prepare for my presentation. My stomach was in knots. I couldn’t decide if my nerves were in overdrive because if the presentation or in anticipation of the results.

At 8:30 a.m. the nurse practitioner called.

We discussed the results. She explained that there are some enlarged lymph nodes - due to the size and number of them she wanted to consult with the doctor before determining whether I should resume treatment.

Resume treatment? What does that mean?! Prednisone? Rituximab?! I don't have time for treatment to derail my life right now.

More waiting.

By now I’ve transitioned from the hotel over to my office. Still trying to get my head in the game and get my mind ready to present.

She called back around 10:00. She had spoken to the doctor.

For now we wait. “Come back in six months and we’ll see how you’re doing. If all is well, we’ll wait another six months, and do another CT a year from now."

And just like that I'm back to waiting.