an unconventional final path to remission

Remission - which a quick Google search reveals is defined as something along the lines of "the disappearance of the signs and symptoms of cancer" was of course the most significant target on the horizon from the day of diagnosis, and the most probably outcome after completing the 3 cycles of BEP chemo. But unfortunately for me, it wasn't served up on a silver platter. Quite the opposite in fact - the final steps to finally getting to that "R" word included amongst the most traumatizing days of the whole journey to date.

I apologize for the length of the post, but it's a difficult one to keep brief.

THE TESTING PROCESS

Similar to the process following surgery, completion of chemotherapy includes tests to determine whether the chemotherapy worked and the cancer is gone - primarily testing the blood for tumor markers (see my post [INSERT INFO]) and a CT scan to see if the imaging confirms no sign of cancer cells. But the testing program actually started even during chemo, because after each cycle was completed I would have a tumor marker blood test. So: 3 weeks of chemo, then a blood test to see if it was working, repeat. 3 cycles.

Those tests brought the anticipated anxiety, hoping the tumor markers would be down, and thankfully, they consistently and precipitously dropped throughout the program. My oncologist actually warned me they may not drop right from the start and could even rise at the beginning as the chemo "blasted" apart the cancer cells, but thankfully mine began reducing from the off. Actually, after only the second round, my tumor markers were very nearly back to normalized levels - those horrid infusions were doing their job!

Thus, when I finished the last week of the last round of chemotherapy and prepared for continued blood tests and the CT scan, we had a solid degree of optimism. The plan was: weekly blood testing until a trend was established / confirmed, and a CT scan after 3 weeks, once my body had a little time to recover from the intense chemo drugs.

TUMOR MARKER TESTING

The first couple of blood tests which were conducted in the first two weeks after finishing chemo confirmed my wife and I's optimism. My tumor markers - primarily AFP - were back down to safe levels, indicating there should not be any remaining cancer cells from the testicular cancer in my body. Those two tests gave my oncologist more than enough confidence to stop the blood testing program.

CT-SCAN(s) & FOLLOW-UP

Everything was then down to the CT scan, scheduled for Monday Oct. 28th - exactly 3 weeks after finishing chemo. A clear scan - no signs of the enlarged lymph nodes or spot on my lung - and I'd be in remission. To be honest, it felt somewhat like a formality given the clear blood tests, but my oncologist explained that if anything suspicious showed up in the CT images, it could mean some pesky cancer cells - while dead - were still lurking, and could require surgery in order to remove them and reduce the increased likelihood of recurrence the presence of those dead cells would carry. So still something on the line.

That Monday is when the roller coaster took another dramatic turn.

MONDAY

I made the familiar commute to the hospital, but this time on arrival headed to the radiology ward. Unlike the first time I had a CT (post-surgery), for this scan I had to ingest contrast agent orally, in addition to having it fed in intravenously. I was given a huge bottle of liquid to drink - it tasted mostly neutral, but with a hint of liquorice. Anyways, I was told I had an hour to drink it, which was no problem. I've had a good amount of practice chugging in the past ;)

My pint of contrast agent

Then, in for the scan. As described in my post-surgery testing post, quick and easy, over in minutes.

Finally - back home for the agonizing part. waiting for the results. Watching the phone, panicking if you left it in the other room in case you somehow missed the sound of the ring. The call finally came in the early evening, and went something like this:

Dr: Hi Sean, I have the results from your CT scan

Me: F*****G FINALLY (OK obviously this wasn't actually verbalized)

Dr: There are two things I would like to discuss with you.

Me: Umm, OK

Dr: the first thing - regarding your lymph nodes & lungs - they look completely clear, there is absolutely no sign of any remaining cancer from the testicular cancer. Truly, it looks perfect

Me: AMAZING! That's great news. But the second thing?

Dr: I do not know how to explain this, really it's almost unexplainable. But the CT scan shows a suspicious new mass which has formed near your stomach. It was not there before.

Me: A mass? But what could that be? Is it some liquid or something that my body produced as a response to the chemo?

Dr: I'm not sure, honestly I cannot give you too many answers right now. But it could be a new tumor. It doesn't make any sense, and I've called around to other specialists in the hospital and we are all really struggling with what it could be. Because it's not small - it's about 9cm across. So for something to have grown that big in such a short period of time, it's concerning.

Me: HOLY S*** (that one I may actually have verbalized)

Dr: Yes. But in the meantime I cannot give you any hard answers about if it's a new tumor, cancer, etc. We need to run more tests. Can you come in tomorrow?

Me: Of course, I'll be there first thing

I don't think it's necessary to belabor a long explanation about the panic that ensued for my wife and I as a result of this call. It was an excruciating night. How could this possibly be happening? A new cancer, and growing that aggressively?

My gut told me it was impossible - how could something like that grow when my body was in such a toxic, unhospitable state: in the midst of an intense chemo program? How could I not feel something so big, or have any symptoms - pain, energy, gastrointestinal, etc.?

Lots of questions, but they would need to wait for the doctor in the morning and further testing.

TUESDAY My oncologist had me in first thing for an ultrasound of my abdomen where the mass had turned up in the CT scan. Unfortunately, the quick ultrasound confirmed what was seen in the CT - a large black mass. She indicated it looked like it was solid and had blood vessels growing into it, wiping out my hope that it was some kind of fluid buildup. It was the week of Halloween, and my oncologist legitimately called what she was seeing "spooky".

She said the next action would be to have a biopsy, to take a sample of the mass and to test it to try to figure out what exactly what it was, and crucially if it was cancerous. I pushed hard to have the biopsy that same day, waiving the usual waiting period the hospital recommends in order to ensure you are comfortable with the risks. Thankfully, and probably due to the crazy circumstances, I was able to get a slot for the biopsy that same afternoon.

After a few tortuous hours waiting and contemplating what on earth was happening, it was into the operating room for the biopsy procedure, to be performed under local anesthetic. Another ultrasound was required in parallel, to ensure they guided the big needle in and removed a sample from the right spot. This time, the ultrasound also included contrast agent. And crucially - though this may not make sense at the moment - I was also having a bowel movement at the time. The doctors - my oncologist included - poked around with the ultrasound wand for a good 30 minutes, probing my abdomen and speaking in Germany to each other. It wasn't long into this process that I sensed something wasn't right. It was eventually explained to me that the doctors were having trouble locating where to take the sample from - made difficult by the fact I was in the midst of a bowel movement so everything was moving around. They couldn't see the mass that was seen earlier.

Eventually they seemed to give up, and told me that it would be better if I had an MRT scan - more accurate for soft tissue - to then confirm the mass in greater detail. Then I could go for a biopsy, rather than take a sample from the wrong place now. I cannot tell you how confused I was.

I was told to wait while they confirmed the plan, and when I could get an MRT.

Another tortuous hour or so. And then - the turning point.

My oncologist came back with updated news - and it was the good kind. She explained that during the latest ultrasound (crucially, performed with contrast agent), they simply could not find the mass which had showed up in the CT scan and the ultrasound from the morning. It was puzzling, and after a few more phone calls around to other doctors in the hospital and especially to the radiologist who wrote the CT scan report, the new hypothesis was that the dark mass was just my small intestine (!!!???). Not a new and unexplainable tumor growing at an outrageous pace, but my small intestine. It was all pretty dumbfounding. But, it was further explained that what likely happened was that I had drunken the contrast agent too quickly before the CT scan, and what showed up in the scan was not a dark mass so much as an absence of imaging around the intestine which only looked like a dark mass. The same thing in the morning ultrasound, when there was no contrast agent used and I also was not having a bowel movement, so it looked like a suspicious, motionless tumor.

What a wild turn of events. My oncologist said I would need another CT scan to confirm this new hypothesis, but that she was quite certain this time and it was the only reasonable explanation. There was also a lot of apologizing, especially on behalf of the radiologist.

I am not even sure how much relief we felt at this point. Some of course, but after so many twists and turns in the story, we were unsure of what might come next. Thankfully, after making some calls I was able to get a CT scan first thing the next morning. You won't be surprised to know that I booked the scan at another hospital - my level of confidence in the radiology department at my regular hospital having been obliterated.

WEDNESDAY

I'll skip the details as this post is already obnoxiously long, but the next morning after VERY carefully timing the consumption of my contrast agent and having another CT scan, the results were ready shortly thereafter. The radiologist at the new hospital confirmed my oncologist's latest hypothesis - there was no tumor or other suspicious mass to be worried about, just my small intestine looking as normal as ever. This radiologist told me that while he saw the dark mass in my scans from Monday and understood why the other radiologist had been concerned - he also saw that the contrast agent was not present in that area of the scan and so if it was him in the same situation, he would have simply made me drink more and pop me back in the machine, rather than jumping to such a dark (pun intended) conclusion and writing it up in a rubber stamped report so quickly.

I'd love to say this was a moment of immense relief, a crescendo to end a horrifically bad few days (not to mention the months prior), but that's not really how it felt. The false positive was an additional layer of stress and heartache that we were not prepared for, and made the news feel almost anticlimactic. Of course, we were relieved, but it wasn't the way we had expected to receive the news and I think meant it took more time to process. I do remember getting home after the new scan and having a good long cry, surrendering to one of many waves of emotion I had never really felt before this journey.

THURSDAY

It was back to my regular hospital the next morning to meet with my oncologist and discuss the new CT scan results. After more apologies about the false positive and all of the stress it caused (she told me she herself didn't sleep Monday night because of it), she gave me the news we had been striving for since Day 1. REMISSION. Official!

It does not mean cured - that is a status I will need to wait 5 years for, a process for which I'll write another post about. So while the journey is not truly over, it is absolutely a major milestone. I have to be honest that I wasn't sure how much we should celebrate, but we definitely didn't let the occasion go unmarked.

That day happened to be Halloween, and though we had originally hoped to head to a Halloween party in town when the week began, my doctor advised me that my immune system was not back fully firing and I needed to be careful about large social interactions. So, we had a much more low key Halloween party for 2 at home. Carved a pumpkin, Jo DJ'ed (she is an amazing DJ), and I dressed up like Popeye to take advantage of what was hopefully the one and only Halloween I'd be fully bald.

FRIDAY & SATURDAY We kept the good vibes rolling - first on Friday with a dinner at a small and very fancy restaurant in town where we were able to get a last minute booking, and on Saturday at a small dinner party hosted by some very sweet friends of ours (where we also celebrated Jo's upcoming birthday). It was a great few days of celebrating remission and starting to ease back into some normalcy and social interaction while being mindful of being immunocompromised. It also gave Jo the opportunity to tell everyone her own medical theory of what happened with the scan: that my small intestine had been enlarged because of a big pork roast we had eaten Sunday night - so what the radiologist had seen was just a big poo. She will forever refer to the remission story rather as the poo tumor or "Poo-mor" story.

FINAL THOUGHTS

The old saying goes that it's about the journey, not the destination. I don't think that applies to the nightmare few days and testing journey that ended with the joyous news of remission. We are also very cognizant that this is not the final destination for this cancer journey, and a long 5 years of testing (and the anxiety that comes along with it) lies ahead. But the traumatic path to remission will have prepared us well for whatever might lie ahead. So maybe it is about the journey? Hmm...