Welcome to That Year I Had Cancer

Posted on by
Reply

On September 13th 2010 I was diagnosed with Stage IV Hodgkin’s Lymphoma.

I was 28 years old.

Over the course of my treatment I underwent just over 6 months of ABVD chemotherapy (every 2 weeks) and afterward did 3 weeks of radiation therapy. During that time I blogged 5 days a week in order to keep my friends and family updated and did my best to present and honest and thorough account of my experiences.

This blog is an archive of those original posts.

BUT it’s more than that. This new blog is still a work in progress. And it’s actually two blogs in one!

During this next year I will be updating and expanding on those original posts. On the one year anniversary (or there abouts) of each post I will be adding additional comments and thoughts. Basically a “What I said then” and a “What I think now”

Why do this? Well, I don’t know. There are parts of me that think maybe I shouldn’t be dwelling on the past, but then again, it’s REALLY easy for me to compartmentalize the whole experience. Already, now a year later, I look back through these posts and I look at these pictures and I can’t believe it happened. Its almost like it didn’t, like it all happened to another person, and I’m sure in many ways I was another person.

My hope is that this project of reflection will become a part of the healing process, so I do it for me. But I also do it for anyone who, like me, would often plug my fears and anxieties into Google, searching for answers.

If you’re here because you searched for something related to Hodgkins Lymphoma, remember, Hodgkins is one of more curable forms of cancer. Not JUST treatable, but CURABLE. If you came here through searches for other cancers and your prognosis is different… well, just remember that you can’t believe everything you read on the internet.

About Me:

I am an actor living with my wife, dog, and two cats in Seattle. My wife (Christine, or Stine) has many posts throughout the blog as well, mostly on those days that I had chemo =)

Some things about the blog and my diagnosis:

Originally at my first appointment the doctor suspected it was non-Hodgkin’s Lymphoma and the early posts reflect that. Shortly thereafter the lymph-node biopsy returned a diagnosis of Hodgkin’s.

You’ll also note that it was originally thought that I was Stage II (with multiple tumors, above the diaphragm). But after my chemo treatments were complete, the Radiation Oncologist noted that there were many more areas of concern that he could see when comparing my original PT Scan with my “clean” PT Scan which was done after chemo. They were areas of early tumor growth that weren’t apparent in the “before” tests, but became apparent when you compared them to my “after” tests. It was his opinion that I had true Stage IV disease.

Enjoy

I’ve got “The Cancer”

Posted on by
3

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.

My Cancer Symptoms. Or: How I Spent My Summer Vacation

Posted on by
9

What I Said Then:

Lets start at the beginning.

In hindsight, it all started with a cough. It was the cough that showed up first, and a few months later, it was the cough that finally convinced me to go see a doctor.   When I called the doctor last Monday I told them that I wanted to be seen for what I could only describe as a “persistent, non-productive cough that I’ve had for about 2 months.”  I first took notice of my cough, during tech rehearsals for a small fringe-theater show I was doing. In general I’d be fine during the day, but when I would arrive at the theater every night this cough would show up, and then would peak as I was going to bed. I clearly didn’t have a cold or anything as there was never any mucus or anything associated with the cough. I would just get to the theater in the evening and would basically cough and hack my way through the show while I was backstage. I could control it while I was onstage, but all evening I there would be this weird irritation in my lungs that would make me have to cough.

We did that show at the Center House Theater, which is an old musty space, so my initial instinct was that there was something in the space that I was reacting to. I tend to have allergies to molds and things, so I just assumed that there was mold in the space and that was why I was coughing every evening. After the show closed and I still had the cough hanging around I started to assume that perhaps it wasn’t mold at the theater, but mold in our house. It was at about this same time that the summer was finally starting to show up so we began using the air conditioning regularly and I thought, well looks like there is something in our central air system here in the house that I’m reacting to. After all Christine wasn’t sick, and if it was some kind of disease wouldn’t Christine have contracted it by now?

As one show came and went and I transitioned to my second gig for the summer, the cough stayed. Always there, always just in the background and in the back of my mind. The pattern stayed the same. I was fine for most of the day, it would pick up in the evening, and then going to bed would be a production as laying down would always aggravate that pesky cough. I started to think that there might be some fluid in my lungs. It wasn’t coming up at all, but maybe that’s why it’s worse when I lay down? The mold theory was still in full effect too. We did that second show in a another small basement theater with low air circulation, so there could have been molds and such in that space too (or so I thought).

Further perpetuating the theory that it was environmental irritants that were making me cough was the fact that during the latter half of our August trip to Hawaii my cough went away for a few days. It was there for the first half, I remember promising Michele and Eric (who we were traveling with) that I wasn’t contagious as I would hack and cough around their 1 year old son. But it didn’t go away permanently, as it returned during the run of that 2nd show shortly after our vacation.

I don’t want to paint an inaccurate picture here. I wasn’t coughing all the time, I would just have several coughing fits throughout the day. It was just enough to notice that you still had that cough, and just enough for Christine to bug me for several weeks about making a doctor’s appointment.

When I checked in at the doctor’s office, they saw that I reported a cough and so they made me wear a mask in the waiting room. I was already pretty unamused at the fact that I was here so I took this picture and I texted it Christine.

Unamused Brian is unamused

What you need to realize is that the last time I went to see a doctor for something like this it was my pediatrician. I don’t care for doctor’s offices, and frankly I’d never been the person who gets sick a lot or needs to go to the doctor for a cold or slight flu. So for me to even be here was a big deal and kind of a huge annoyance to me. And now I had to wear this mask, and to make matters worse, no one would sit next to me in the waiting room.

I was called back to the exam room, and before I even saw the doctor, he had me go in for a chest X-ray, just based on my “persistent, non-productive cough that I’ve had for 2 months” that I told them when I called to set up the appointment. After the X-ray I went back to the exam room and waited a few minutes. When the doctor came in he told me that I could take my mask off and that knew why I was coughing. I didn’t fully grasp the gravity of what he was saying at the time, though I kind of thought I knew where it was going when he cut to the chase and opened with: “The X-Ray doesn’t indicate any signs of infection in your lungs, but there does appear to be a mass in your anterior mediastinum.” To which I replied: “Great! That’s one of my favorite Steinem’s, right behind Gloria.”

Hi, I’m Brian, and I make jokes when I’m uncomfortable.

He was indicating to me that I had a serious medical condition, and I came back with a joke. Not what he expecting, and it took him a few seconds to regain his professional composure after a good laugh. But at least we understood each other now.

I should tell you at this point, that in the end, it wasn’t just the cough that finally made me think it might be a good idea to see someone. There was a handful of other things which (like the mold theory for the cough) I had perfectly good justifications for. But when I started thinking about them all together I realized that there was a chance that I was actually looking at a short list of symptoms.

As it turns out,  if you Google non-Hodgkin’s lymphoma symptoms you’ll get a list a looks very similar to this:

  • Fever
  • Drenching night sweats
  • Weight loss
  • Fatigue
  • Loss of appetite
  • Severely itchy skin, often affecting the legs/feet

When the doctor and I sat down and started talking I pretty much went straight down that list and hit each and every point on it with little or no prompting or questions from him. And with most of them I even had a reason for why I had dismissed it.

Fever: I had a fever of about 100 when I checked in to the doctor’s office, and I assumed that I had been running a low-grade fever for a while, but that wasn’t so surprising to me. By the time I went to the doctor I was pretty much willing to admit that I was sick. But I just thought it was something mild.

Night Sweats: For most of the summer it was it was not uncommon for me to wake up two or three times a week completely drenched and dripping with sweat. But it was summer, it’s hot out, and I can’t sleep without covers on me so I didn’t really think much of it. Additionally Christine had bought a new comforter for the bed at the beginning of summer, so I have been bitching to her for months that “this this doesn’t breathe!” (For the record, she maintained that it breathes just fine.)

Weight loss/Loss of appetite: I actually blogged about this several months ago. We have really tried to make some major changes in our diets over the last few months by switching to mostly local and organic foods. The result of which I assumed (and as I wrote about) was that I was eating much more wholesome and fresh food. As such I wasn’t eating as much and I was less, since my body was getting was it needed (or so I assumed) and it lead to a natural weight loss. Though I do have to admit that recently I was a bit surprised. I’ve always been pretty scrawny, and I normally walk around at about 145-150. But at one point a few weeks ago I stepped on the scale and saw 134 (I’m 5′ 11″ BTW) That was a bit surprising, but even then I’ve been that skinny before. I even had a conversation a few weeks ago with some cast-mates and we talking about weight and I mentioned that I was oddly back at the weight I was at when I graduated High School, even without exercise. =)

Fatigue : Not something I put too much stock in at the time, but I have certainly been tired a lot lately. Sleeping in, AND I could think of several instances in the last month where I had taken a nap in the middle of the day, which is completely unheard of for me. Still, I keep waking up because it’s so hot at night, so maybe I’m just not sleeping well =)

Severely itchy skin, often affecting the legs/feet : The easiest of all the symptoms for me to dismiss. I have always had a pretty serious grass allergy, but this summer I fell in love with sandals (Tiva’s) for the first time and everyday I would walk around in the backyard while playing ball with dog. So that would explain why my ankles are pretty much scarred from me scratching them mercilessly all summer. Additionally I’ve taken up Golf pretty seriously this summer and have played quite a bit. I even had a conversation with Dane (one of my golfin’ buddies) earlier this summer about how badly my ankles and feet had been itching because I have grass allergies and how it’s especially bad by the time we get to the back 9.

Each thing alone seemed pretty benign. But when I thought about them together, even I had to admit that I was probably sick. But even then, when I went to the doctor on Monday the 13th, I thought for sure he was going to tell me that I had walking pneumonia or a low-grade infection of some kind. No one suspects the Spanish Inquisition cancer. Except for my doctor of course…  he pegged it right away.

After we talked he gave me a physical examination. He noted that the lymph nodes in my neck were severely swollen and I told him that they had been for sometime now (afterward I remembered back to one of my costumes, I remembered how I wasn’t always able to button the top button of my shirt because it put uncomfortable pressure on my neck, but not always). He completed the physical examination and we sat back down he typed a few things into the computer, turned to me and gave it to me straight.

“I see no reason to sugar-coat this, I believe that you have non-Hodgkin’s lymphoma.”

It’s always interesting to see how someone responds to frank bad news (we’re getting pretty used to dishing it out lately) but I even managed to surprise myself with my immediate and enthusiastic/sarcastic response:

“Great! Just what I’ve always wanted!”

As I understand it now, aside from the swollen lymph nodes, most of the symptoms aren’t really the symptoms of lymphoma itself.  But as the cancer spreads outside of the lymphatic system, the body starts to loose its ability to fight infection and these tend to be the most common side effects of that. In my case it all comes back to that “mass in your anterior mediastinum.” The cough comes from the mass (or tumor) pushing back against my lungs and trachea as I breath in. The tumor is also responsible for the other side effects, both as the body attempts to fight it and as it throws off various chemicals and whatnot as it grows.

What even more interesting is that we’ve since learned that the tumor is necrotic. Cancerous cells are highly metabolic. They divide, and grow up to 20 times faster than normal cells in the body. In this case the tumor grows and swells rapidly until it quickly out outgrows it’s blood supply, at which point it starts to die and shrink back before the process repeats again. Right now the mass in my chest is in a necrotic stage and is slowly shrinking.

The most terrifying thing about all of this is that in the last week all of the symptoms that I’ve talked about, the cough, the night sweats, the fever, practically everything has completely disappeared. Gone. If I had waited a couple of more days before finally deciding to go to the doctor I wouldn’t have called.  It’s unclear what sort of time frame this tumor would continue to cycle on, but to me it seems possible that had I not gone to the doctor it could have been a while before these symptoms came back and all the while the cancer would be continuing to spread and take hold in other parts of my body. I shutter to think at what stage it might have been at the next time I started to feel symptoms. It’s a sobering thought.

Back in the doctor’s office:  So, there I was. I had reluctantly gone to the doctor for the first time in 20 years. I’m 28 years old and the doctor just told me that I have cancer. On my way out of the clinic I stop at the lab for a blood draw (again, my first in 20+ years). Then I get in the car, head to the Post Office to mail some packages, and then I head home and wait. Christine was due home in about 20 minutes, and we were about to start officially dealing with this news.

What I Say Now:

Updated 1 year later – September 29, 2011

One the most remarkable aspects of this story turns out to be the speed at which I was “diagnosed.” I walked into the doctors office and less than hour later the doctor said those words which are now burned into my memory “You seem like a fairly straight-forward guy, so I don’t see any reason to sugar coat this: I believe that you have non-Hodgkin’s lymphoma”  (HA! The joke’s on YOU Dr. Dodge, it was HODGKINS Lymphoma …)

I have since met several people my age who have been diagnosed with Hodgkin’s Lymphoma and most of them went through a fairly long (often over a year) series of referrals and doctors visits. They would go to the doctor because they didn’t feel good, or just didn’t feel quite right, so there isn’t much the doctor can test for. Or maybe they went in for that slight cough and lethargy and then get sent to a ear, nose, and throat doctor or something like that. Then maybe they get put on a steroid, or tested for asthma. Then (as happens with these necrotic tumors) when cough goes away, you’re cured! Or at worst, you stay on those asthma drugs for a while.

I’m sure the stories are out there, but I have yet to hear another diagnosis story like mine. Maybe it was the way I described my ailment when I called, but for whatever reason, the doctor read that I had a “persistent, non-productive cough that I’ve had for about 2 months.” and BEFORE HE EVEN MET WITH ME, had me take a chest x-ray which showed the tumor in my chest.

As we were walking out the door together, the doctor asked me if I wanted him to call and help me tell my wife. I declined and after he had asked several times if I wanted him to call that night I agreed it might be a good idea. I’m pretty sure that I stopped being able to fully listen to what he was saying after he told me I had cancer, and I was sure that Christine would have questions that I hadn’t thought to ask.

Like I said in the original post, after leaving the doctor’s office I went to the Post Office. As a part-time eBay seller it’s a place I’d been hundreds of times before, but obviously this time it felt a little different. Right away I realized that things were different, and were possibly never going to be the same. Now that I knew I was sick, I felt sick, and it was more than just the shock I was in. Again, this was a place I go to almost everyday at this time, but now it felt like an out-of-body experience. Am I really here? Did that appointment really just happen? Can these other people in line tell that I’m sick? AM I really sick? Maybe the doctor was wrong. This can’t be happening … “Uh… yeah, First-Class International please…”

I drove home, still very much in that distracted out-of-body state. My brother-in-law (who was staying with us for the summer) was on the couch playing video games. It was a routine Monday afternoon for him, not so much the life-changing afternoon that I just had. I have NO memory of anything that happened during the next 30-45 minutes while I waited for Christine to come home. I probably just sat there in shock, and running possible scenarios in mind for how I was going to tell her.

She came in, excited that I had finally gone to the doctor, and eager to hear what the doctor said (especailly since I think she was excited to see if she was right to suggest I go in =) She had texted me earlier and this is a screenshot from her phone:

I apparently over-played my hand with my use of exclamation marks. I was trying to be fun, so as to not alarm her too much. But apparently she knew something was up by the way I responded with punctuation. To quote her just now: “Yes, you only use punctuation when you’re drunk or upset about something”

I told her that the doctor that gave it me straight, and so I was just going to do the same thing for her. And I said out-loud for the first time the same opening line that I would soon repeat to the rest of my family. “He told me that I have non-Hodgkin’s lymphoma… which is to say, that I have cancer”

Dr Dodge was right, and we were both thankful for the phone call that he gave us from home a few hours later, he was able to help talk Christine off the ledge and it was helpful that he reiterated some of the same “life-changing, not life-ending” points that I had told her. The rest of that night though was a flurry of emotions and I don’t recall many specifics moments, mostly just what I wrote in the next post. By the time we went to bed at like 10 or 10:30 we were pretty exhausted.

Day 2

Posted on by
7

What I Said Then:

That first Monday night was a long night.

We laughed, we cried, we started working through the 5 (or 7 depending on who you ask) stages of grief. But most of the time we just sat there looking at each other as we each individually cycled through the following at different rates: “I can’t believe this is happening,” “Why is this happening,” “Maybe he’s wrong,” “This is unreal,” and my personal favorite, I would occasionally just go with a good “WHAT?!?”

As is often the case with these things, I awoke the next morning with a deep sigh. It was real. This was Day 2.

Our health insurance and medical provider are through Christine’s employer. By 9 o’clock in the morning on Tuesday the 14th (Day 2) we already had received several phone calls from them and our calendar was quickly filling up with tests and appointments.

By mid-day we found ourselves at the clinic checking-in for a CT (or CAT) scan. If this this whole thing wasn’t surreal enough already it was starting to feel completely unreal.

We were asked to arrive about an hour and a half prior to the scheduled scan time because I had to drink the contrast solution that would allow the scanning equipment to see my bowels. They brought out what I can only describe as two Iced, Venti, Watered-Down, Runny, Cheap, Pina Colda Mixes which I was to drink over the course of an hour or so. Not surprisingly it was pretty terrible.

Once I choked down the “fizzy lifting drink” (it wasn’t fizzy, but that’s what I took to calling it for some reason) we were taken back into the exam room where I changed into some robes and was given what was to be the first of many IV’s that I’ve had in the past two weeks.

Jedi Knight? or Cancer Patient?

I don’t look so amused in this picture, because honestly I wasn’t. But as we learned while I was puking off the side of the boat earlier this summer, in hindsight, I will always wish later that we had taken the picture.

The scan itself was pretty quick and simple. They took a couple of quick passes with the just the drink contrast and then they injected some contrast into my veins through the IV and took some more images. There was the possibility of some weird side effects to the intravenous contrast but I didn’t really experience any of them. The technician explained that there was a strong chance that I might feel like I was urinating when the contrast entered my system, but he assured me that I wouldn’t actually be peeing myself. Fortunately all I got was a slightly bad taste in my mouth.

When I got back to the exam room after the procedure I broke down a little. For the first time I just felt really scared about what was to come. It was all starting to sink in. Here I was at the hospital (WHAT?!?) undergoing the first of many medical procedures when less than 24 hours ago I was fine and far as I knew healthy. But now, I was all of a sudden acutely aware of what the next few months of my life were going to be like. And for a moment it overwhelmed me.

I don’t think that poor technician was really prepared to see someone cry after a CT Scan.

At home that night we got a call from the doctor that I had seen the day before. He just wanted to check-in on us and let us know that, while he wasn’t a radiologist, he’d seen the CT Scan results and that it was exactly what he would have expected to see with lymphoma. Additionally my blood work had come back from the day before, and that it too was consistent with lymphoma. At that point, even we had to admit that this was happening.

The only other hope that we had was also gone by this point. Before leaving the clinic the night before (and after the blood draw) I had been given a tuberculosis test. The doctor thought there was a small chance that my cough and other symptoms could have been caused by TB but he was giving me the test just to rule it out as a matter of due diligence. The TB test is given by injecting a small (and benign) amount of the disease under the skin on the arm. If it turns into a red bump within 2 days then you either have, or have had, tuberculosis.

No red bump. Just freckles.

(An aside for us young kids:  This test is apparently something that our parents know all too well. When I began telling this part of the story to my parents they both instinctively rolled up their sleeves to start showing me their own TB Test scars on their upper arms. Apparently it was a mandatory test back in the day and it left a much bigger and more permanent mark than it does today.)

So, about 24 hours after the initial diagnosis based on a chest x-ray and a list of symptoms, we suddenly and definitively had the x-ray, the CT scan, and the blood work, and my list of symptoms so we could no longer deny this was actually happening.

It kind of sucked.

But, what was hard to see at the time was that we had already worked our our way through quite a  few of the early stages of grief, and we were well on our way to acceptance.

What I Say Now:

Updated 1 Year Later – September 30, 2011

I would write about this moment in later posts, but I remember what really set me off during my little emotional breakdown in the exam/changing room was the simple thought that one day this WOULD become routine. I was now a patient. And as scared as I was to be going through this, eventually one day soon I would reach the point where I wasn’t scared anymore. That I would be comfortable in a hospital setting, that I would become a regular. That meant something to me, that I would eventually become a “patient.”

As I suspected and feared, tests at the hospital did quickly become routine. But that first one was terrifying. It was the morning after I first went to the doctor, and there I was, IV in my arm, about to have my first procedural test. I would be back, again and again for this and other tests over the first few weeks, and at some point it would become routine.

I when I did become an old veteran, it wasn’t so bad. I was continually impressed with the people (nurses, doctors, technicians) that I met throughout my treatment. Many of them do the same thing, over and over again all day long, but yet I really got the sense from most of them that there wasn’t anything routine about their jobs at all. The patient becomes the X Factor. Each of us is different and the people that I met always seemed to do a good job of tailoring their care to the patient. Helping to put the patient at ease when the situation calls for it, or rolling with their outgoing nature when it’s clear that this isn’t their first rodeo.

Overall, I got there pretty quick, like by the end of second week.

Still, it doesn’t discount the shock of those early days. It was pretty intimidating. I remember that at many of these early appointments (like the later surgical consultation, and my first time meeting with my oncologist) I couldn’t get my resting heart-rate below 114. I could put out a calm and collected persona, but inside my mind and body were racing.

It’s not “really” surgery…

Posted on by
7

What I Said Then:

3 days after first receiving the news (so Thursday the 16th) we met with a surgeon to talk about getting a piece of lymph node tissue for a biopsy. It was also our 3 year wedding anniversary, not how we had originally planned to celebrate, but hey, at least we got to spend the day together!

It was at this appointment that we actually got to see the results of the CT Scan that I had 2 days earlier. The doctor walked us through what we were seeing and showed us the tumor that is in my chest. On the computer she was able to show us  hundreds of 2 dimensional images that were almost like layers and slices of my body that we could quickly scroll through. She showed us multiple angles of the right side of my chest and showed us the mass, indicating “You see this here? Yeah, there shouldn’t be anything there.”

The tumor itself is about 6 cm tall and 2 cm wide (about the size of an egg) and was the reason that I was coughing for so long. I would go take a big breath in and my lungs (and to a certain extent my trachea) would expand outward into the tumor. My body would react by thinking there was some kind irritant in the lungs and I would cough to try and get rid of it (but to no avail!). I also now understood why, when my symptoms were at their worst, that my cough was most acute when  I would lay down at night: because I have this egg falling back onto my lungs.

As I mentioned the other day, my symptoms, including the cough, have all but disappeared. But when I’m thinking about it like I am now, I start to feel that little tickle again.

The doctor explained that we were there because they needed to get a piece of diseased tissue in order to biopsy it and get a definitive answer on what we were dealing with. She said that it was something that they could do as an in-office visit using what amounts to a large needle to get a tissue sample “But, the neck is a busy place,” she said. And she would feel better doing this in an environment where there were more resources available should anything unexpected happen. Plus this way they could get the whole lymph node to ensure that there was enough for a usable sample. Translation: “this is a really simple and minor procedure, but we want to do it in the operating room just to be safe.” Great! Safety first!

Since it was now “surgery” (Pfft!) we spent about 20 minutes going over paperwork, what you can and can’t eat or drink beforehand, wash yourself with this, etc, etc. I put the word surgery in quotes because in my mind this was all really just a technicality and that in reality we were looking a quick in and out. I was pretty much thinking of this as “Drive-Thru” surgery (and even then I am still using the term “surgery” loosely).

Monday the 20th was to be the big day! But we had to get through an agonizingly long weekend, as we still hadn’t really told anybody and were started to feel a bit isolated.

When I say that we hadn’t told anybody, I mean we hadn’t told anybody. It had been almost a full week and we hadn’t told my parents or the rest of our family. My parents had left for a two-week vacation in their motor home (or RV, if you will) only a few days before my initial doctor’s appointment. For better or worse, I refused to call and deliver this news to them over the phone when they were 1200 miles away. It was a heavily debated point our house, but ultimately I decided it was my decision and would stick with my initial instincts and not ruin their vacation. We would wait the two weeks for them to get back so we could tell them in person.

It was for the sake of my whole family then that we didn’t tell my sister Tanya right away either. She was scheduled to go out and join my parents for a spell during their vacation, so we couldn’t just load her up with this bomb and send her out to spend a weekend with them. Instead we drove the “happy wagon” (as we would lovingly come to call the car when we were on our way deliver the news to people) out to my sister’s house on Sunday night when she returned home and told her the news. At some point I may see if I can convince her to write a post about what it was like to get punched in the face with news of the cancer bomb.

The next morning we checked in for the procedure (note: I’m still not calling it surgery here). There was a little more paperwork, some “change into this,” and a few lines of questioning from 2 nurses, an anesthesiologist, a surgeon, and a nurse anesthetist. Before I knew it, I looked like this, and things were suddenly getting much more serious than I had initially prepared myself for:

Lunch Lady? Or Cancer Patient?

That is probably going be a tough image for my family to see. And I’ll admit that at this point I was rapidly getting way over my head and was starting to question my choice of not having told my parents yet. If you look closely,  I think you can even seen the doubt creeping onto my face in this picture. Or maybe that’s just my crustache.

In my mind, I was still okay though as far as my decision to not tell them goes, especially since I wasn’t going under a general anesthetic (for some reason I’d decided that if I was “going under” then I would have called, as if THAT would have meant it was actually surgery). Instead I was just going to be lightly sedated while they performed the procedure under a local anesthetic.

About an hour and a half after we had arrived at the hospital, the nurse anesthetist came to get me for the big moment. As we walked he asked me what I did for a living and as it turned out he and his family are season subscribers to a local theater where I have worked regularly and that he and his family had seen me in shows there. A few quick turns later and I was suddenly in the Operating Room. And it looked just it does on TV. Holy shit. Was this really happening?

I was really only allowed to be scared for a few minutes as I was quickly relaxed by the sedation medication that went in through my IV after I had laid myself down on the table. They numbed the area around my neck and while I don’t remember too many specifics do I remember that the nurses and the doctor were talking about pretty mundane things, and the doctor told me that’s how I could know that things were going well. The nurses occasionally asked me a few questions to ensure that I was still doing well and I was. I was awake throughout, but certainly drugged and a little sleepy. I was relaxed, and in a good place as my mind wandered freely.

Just as I had expected, the procedure was short. It couldn’t have been more than about 10 minutes,  and before I knew it I was asked to slowly sit up and move into the wheel chair so that they could take me to the recovery area. I wasn’t there for more than a minute before Christine joined me. She was happy to see me and was happy to see that I was already doing very well.

I was given some food and some juice since I hadn’t eaten all day, and as Christine and I chatted I noticed that her eyes kept wandering down to my neck before snapping back up to meet my eyes. “Oh, right!” I thought. “I should see if I can even tell what they did.” I asked if there was a mirror and Christine pulled out her iPhone and snapped a picture  which she reluctantly showed to me.

“I am going to be in … so … much … trouble!”

That was all I could say. It was the first and only thought that popped into my head. My parents were going to kill me. How was I going to be able to explain this. I mean, I looked like I had just had surgery!

“How long was I in there for?” I confusedly asked Christine.

“About 45 minutes.”

Shit.

On top of the 2 inch incision on my neck I had now pretty much “gone under.” Even according to my own previous definitions I’d officially had surgery.

A week later, when we were finally able to sit down with my parents and tell them what was going on, my neck looked much better. But I still think that this was one of the pieces that of the story that made everything that much harder to bear. After all, it’s visual evidence and a reminder that this whole thing is real.

After the surgery, and although I was now filled with a little more doubt, I stood by my decision not to call and tell my parents yet. As hard as it was going to be on all of us and as much as they may not understand right away, I was doing it for them, and I was doing it because I still thought it was the right thing to do. They were 1200 miles away, there was nothing they could have done either from there, or if they had been here for that matter. I know how much they look forward to their vacation and if I would called to tell them over the phone they would have driven straight through for 2 days to come home just to see me. By waiting until they were home they would get to see me and touch me and just be there with whole family when I delivered to them the hardest news that I can ever imagine a kid having to deliver to their parents. For better or worse, I was determined wait and load up into the “happy wagon” when they got home.

Besides, I’d still have plenty of cancer left by the time they got home!

It’s now been almost two weeks since the surgery and everything looks much better than it does in the picture taken minutes after I came out. In fact I’m pretty stoked about what a bad-ass scar this is going leave!

Knife Fight Victim? or Cancer Patient?

You should see the other guy!

At least I hope it makes a good scar since I don’t really have any. Though the surgeon (cause you know, it was surgery after all) did a great job, and with the liquid stitches they use these days, it may not leave much of a scar at all. And if that’s the case, then I declare that having cancer sucks!

What I Say Now:

Updated 1 year later – October 1, 2011

Well, if nothing else, I did get a pretty good scar from the surgery.

Here is what it looks like today:

I can’t get over how much bigger I look in this “now” photo. I will talk about it later posts, but I was severely underweight at the time of my diagnosis. I normally walk around in the 150’s but at the time those pictures were taken I was weighing in 130’s (I’m 5′ 11″). Today I’m on my way back down to a normal weight and in the mid 160’s after topping out in the solid 170’s.

In the post I talked about our surgery consultation (which happened on our anniversary) I mentioned that we were shown the CT Scan. YOU can see the ACTUAL IMAGES (!) we saw up on the left side of the title banner at the top of the blog, the “Then” picture. She showed them to us, but I’ll admit that I didn’t really understand what she meant by “there shouldn’t be anything there” until I would see the later images from during and post chemo treatments. “Oh, so there REALLY shouldn’t be anything there,” I remember saying once we finally had something to compare it to.

My surgery was on a Monday morning, and that night my sister, Tanya, came over. We had only JUST told her what was going on a day or two before, so it was all happening really fast for her (hell, for us too). We had dinner and since I was on pain pills, and feeling like a rock star, we went out and got Blizzard’s from Dairy Queen. Because of the pain pills I don’t remember much else about that night, but I most certainly remember the Dairy Queen. Mostly because a few hours later I would learn the hard way that I have what is known as in “intolerance” to vicodin. In short, I spent the night throwing-up every 30-60 minutes. Lovely.

I was still nauseas, and exhausted from lack of sleep, when we woke up the next morning for our first appointment with my oncologist. I have this distinct memory of my head hanging into the toilet and hearing Christine on the phone with the oncology front desk to see about rescheduling. They didn’t have anything available for another week if we rescheduled, so I rallied and we went in. We were only T-Plus 8 days from my initial visit to the doctor, but we had lived a lifetime of worry and anxiety during that first week, so it felt like an eternity, and there was no way I was going to wait another week.

Really though, there weren’t too many answers she could give us once we were there, since it would still be several days before the results from biopsy were back. As such she was reluctant to give anything other than generalizations. In fact, it was at this first appointment with her that planted the seed that it might not be “non-Hodgkin’s.” She wasn’t convinced, and felt there was a good chance of the biopsy coming back and showing Hodgkin’s. As it turns out, she was right.

After a few days there wasn’t any more “pain” from the surgery. But it was sore for a little over a week if I remember correctly, and I was probably a week-and-half to two weeks before I would no longer think about it. All in all the surgery wasn’t so bad, and as far as procedures go, I would have worse. The upcoming Chest Port installation was probably worse.