What I Said Then:

Yep. Cancer…  I has it.

On Monday September 13th I was told I had non-Hodgkins Lymphoma, which is cancer in the lymph nodes. In short: I have Cancer. <Pause, for effect>

As the doctor told me that first night: this is a life-changing event not a life-ending event. I will survive this. I will be fine, eventually. That said, this is serious. And this is not a drill. Please be sure that your seats and tray-tables are in the full upright and locked position.

So, what have we been doing for the last two weeks? Monday the 13th was a long night. Lots of just sitting and looking at each other. Lots of crying. After a long night on Monday, we hit the ground running on Tuesday morning. Tuesday I had a CT Scan, which combined with my blood-work results from Monday, was further confirmation that we were dealing with lymphoma. Thursday (our 3 year anniversary!) saw us at a surgery consultation, and on Monday the 20th I had surgery to remove a lymph node from my neck so it could be biopsied.

The next day (Tuesday the 21st) was our first meeting with my Oncologist. While she was able to answer many of our questions, we are still waiting for the final pathology report due back early this week. What we do know based on the tests that I have undergone over last two weeks is that it is Lymphoma. We also know that it is Stage II (out of 4). Stage II indicates that there is cancer found in multiple locations, but all contained within one side of the diaphragm. In my case the diseased areas are all within my chest. Additionally Stage II means that it has not yet made it’s way into my bones (a very good thing) as my Bone Marrow Biopsy came back negative!

What we do not yet know is what exactly it is. We are presuming that it is a Non-Hodgkin’s Lymphoma based on my symptoms (as opposed to Hodgkin’s Lymphoma, also known as Hodgkin’s Disease). However there are 16 different types of non-Hodgkin’s Lymphoma, each with it’s own joys. On the plus side, everything so far has been fairly typical, so we are expecting the most common form (B-Cell Lymphoma) which accounts for about 85% of all cases. This is the one we are rooting for.

So, what does this mean? Well, already this news has seen us make some big changes in our lives. I met with the people at theater where I was going to be working this holiday season and withdrew from the show. But what I’m most upset about is that Christine will no longer be starting her Master’s Degree (MBA) program this fall. Instead she has differed enrollment for a year, and will be starting next fall.

These changes were necessary as I will be starting chemotherapy as early as the second week of October. At this point we are anticipating 3-4 months of chemotherapy, followed by additional radiation therapy. This treatment course could change based on the final pathology reports, and could be further adjusted based on how my body reacts to chemo. The funny thing about lymphoma is that it is painless, right now I feel fine. It’s the treatment that’s going to make me really sick.

That’s sort of the overview for now. I’ll go into more details on all of this later, as well as write about the insane number of tests and procedures that I’ve already had to this point (to give you an idea, not including the weekends, we’ve been to the hospital 7 out of the last 10 weekdays).

All of that said, I would like to welcome all of you to my blog! I have been blogging for the last 2 years here though my audience was intentionally kept small (family, and a group of close friends that I’ve had since high school). I started it just as a random experiment. I only posted random links to things etc, and in fact never even told anyone that it existed. Until about 6 months after I started it when my wife Christine randomly stumbled across it during a series of Google searches. Since then I started slowly posting more and more personal stories and anecdotes and it eventually grew into what I now describe as an open letter to my mother. So she knows what I’m up to, and doesn’t have to call me as much =)

Moving forward I would like to welcome any and all of you who wish to follow along as Christine and I start what is certainly to be the most uncertain and trying period of our lives so far.

I will do my best to try and post 4-5 days a week (typically weekdays). This week will primarily be focused on bringing everyone up to speed on what our discovery process has been like over the past two weeks.  Beyond that, it will continue to be a “blog” in the oldest definition of the word. A “web log” to chronicle my experiences and this journey. I don’t anticipate that we’ll be posting much to FaceBook so this is the place for updates, should you want any.

Feel free to comment below (or on any post). You don’t have to log-in or even leave your email address to post, you can just fill in your name and add a comment.

Here we go!

What I say now:

Updated 1 year later – September 27, 2011

That blog post was a version of an email that we first sent out to close friends and family about two weeks after I first went to the doctor. By then we had a chance to tell my immediate family in person, and additionally it gave us some time to come to terms with my early diagnosis. Though even then there were some things that turned out to large inaccuracies, (the diagnosis was later changed from non-Hodgkins to Hodgkins and from Stage II to Stage IV, etc)

That email went out on a Sunday morning to about 30 people and then quickly spread from there. For some reason (and I don’t know why) I was kind of surprised by how it made its way into so many other people’s inboxes. I remember my sister was the first to ask if she could forward it among her friends. I of course said yes, but the request still took me by surprise for some reason. It was just one of those moments when I first realized how big this was about to be, and that it would soon be something that EVERYONE I know would eventually learn about me. And even beyond that, as it would certainly have impact on people I had never met such as my wife’s co-workers, and countless other people who are connected to the people that I’m connected to. This was suddenly something that was going to possibly identify me for the rest of my life.

A life-changing event” indeed.

As it turns out, that first day of telling people was just the beginning, and soon I would begin to realize and understand the that there is a wide-reaching network of people out there that I’m connected to and who care about me. You’ll just never know how much you are loved and how many people care about you until something like this happens. For some reason I honestly didn’t see that coming.

The next day (a Monday) we posted it on the blog and then Christine and I both put the link up on Facebook. And just like that, it was out there in the world.  The news hit people hard, and the immediate outpouring of support that came flooding in was, at times, overwhelming.

I remember I then spent the next several days on the computer and on the phone returning calls and answering emails. At one point I actually described it as a full time job. I don’t remember if I actually ever blogged about that, but responding to all the well-wishes from all corners of our lives (past and present) became quite exhausting. I wasn’t prepared for that at all.

One of the largest overall themes in most of those conversations centered around “how well I seemed to be handling everything”. The thing that I kept reminding people though was that Christine and I were a full two weeks ahead of everyone in terms of dealing with the news. We had waited so long to tell everyone because my parents were on vacation, and I needed to wait for them to come back so I could tell them in person. It turned out to be a huge blessing in my opinion (and I think that my parents eventually saw it that way too, but maybe not). Rather than having everyone come with us on the stressful and uncertain journey that was those first few days, by the time we starting talking to people we  were able to approach everything from a “this is the test I HAD, and this is the RESULT” rather than having to nervously wait with us.

The downside of that however was that it was a bit a much for most people to digest. Reading it now again for the first time in a year I can see why. It’s just not what people were expecting when they got up on a lazy Sunday morning. Then again, it wasn’t what I was expecting when I went to the doctor on a lazy Monday afternoon.