On my journey through cancer, I’ve tried to always be open about what’s happening. I firmly believe in the power of open discussion to demystify and dismantle the fear of the diseases like cancer. In keeping with this belief I’d like to share a little bit more about my journey and the things I’m learning.
I’m going to provide a MASSIVELY OVERSIMPLIFIED view of what I’m facing, so please don’t call the medical geeks down on me, ok?
First off, you need to understand the type of cancer that I have — it’s called follicular lymphoma. It’s a slow-moving, indolent cancer of the lymphatic system. The lymphatic system is a crucial part of your immune system and does a bunch of interesting stuff that’s not really relevant to this discussion. The important bit here is that the primary characteristic of my type of lymphoma is that the lymph nodes fill up with long-lived cells and get bulky.
Most of the cells in your body have a timer of sorts that ensures they self-destruct after a while – this mechanism is apoptosis. This is important since it ensures that cells don’t start making bad copies of themselves after a large number of splits. Basically, it’s a method for anti-entropy at a cellular level. :) In my case, one particular type of cell (B-cell) tends to get created without this timer set. They typically hang out in the lymph nodes, so over time all the lymph nodes in my body start to get kinda bulky and impinge on other things around them. Mechanically, this can be problem, since you wind up having large lymph nodes pressing on organs and such. But, mechanical issues are not that bad (since it can take many years for the nodes to get that large), so you might be wondering why it’s a big deal at all. Annoying, yes. Dangerous? Not for a long, long while.
The danger comes in the form of statistics. If you have enough long-lived cells hanging out, there will come a time where they start making transcription errors. With enough time and enough cells, you will get some really BAD transcription errors. Thus we get “transformation” – where the slow-moving, lazy lymphoma suddenly starts churning out highly-aggressive, consume-your-body-in-months lymphoma. Obviously, we’d like to avoid that situation.
Thus far, you might be thinking that this is a straightforward problem. Just use some chemo to clear out those bad B-cells before they ever get bulky and statistically significant. Easy, right?
Well, not exactly. Problem is that most times you don’t even know you’ve got a problem until the disease is widespread. In my case, it was stage 4 (i.e. every lymph node in my body had significant disease, including my bone marrow). Stage 4 follicular lymphoma is currently considered incurable. There are enough bad B-cells floating around that you’re not going to get them all and at some point, it will come back.
So, here we are. When I was first diagnosed, I was stage 4 and we needed to take immediate action. We used one of the biggest guns (chemo-wise) and it worked wonders. By my second (of six) treatments, I could no longer feel the lymph nodes all over my body and after three treatments they could find no evidence of disease using the PET scan. In other words, chemo worked like a champ. However, as expected, it didn’t get them all and now 4 years later, I’m slowly starting to accumulate those B-cells again. For the moment it’s just stage 1 — 3 nodes in a single area of my body. It is slowly progressing and the odds are that I will need to do another course of treatment within the next year. While it’s possible I could go longer — FL can stop progressing for a while or even regress — it’s not likely or predictable.
The challenge I now face is knowing when to do treatment. The natural progression of this disease is that each time you do a treatment you will get remission, but it will come back typically after a smaller interval each time. Thus, we want to delay treatment as long as possible, without incurring significant risk of transformation. Treatment works better when there is a lesser disease burden though, so that also has to be factored in. There is also the question of secondary risks of treatment. You typically can’t repeat the same treatment multiple times. If I re-used the treatment from my first battle, my heart would literally stop. The chemo in the second round has a non-zero chance of triggering secondary cancers such as multiple myleoma or acute leukemia. Later rounds of treatment have up to a 10% chance of mortality just from exposure to the treatment.
Adding to the complexities of my case is that I’m very young for this disease. On average, one is diagnosed with this disease in their late 50’s / early 60’s. Most of the treatment and research shoots to get you 20 years of survival after diagnosis. Being that I was diagnosed in my early 30’s, I’d like to figure out how to double that survival time. That’s non-trivial, to put it mildly.
As you can see, it’s a very, very tricky situation. I have the luxury of time to think and plan, but I’m playing a very long game — hopefully another 20 years at least! I’m in no immediate danger for the moment. There is a very small chance that those nodes which are growing could trigger a transformation, but it’s quite small. The hardest part is the mental strain. Realizing you have a set shelf life is not something you typically face at this age. Facing it the first time was incredibly difficult — I don’t know that facing it the second time has been much easier. I will say that it’s a pretty good kick in the pants to deal with those parts of your life where you are not happy or productive. It also encourages you to make the most of every moment, to be free with encouragement, sparing with criticism and most of all to pay attention to every breath.
This has turned into quite the entry. I hope it explains some of the challenges I face and clarifies my “I’m not dead yet!” quote. I have gotten so many emails and tweets of support — I am so grateful for them all. The best treatment for mental anguish is the kind and encouraging words of friends. :)