Life Report

I was going to write up a race report from last week’s trail 15k, because it went pretty well and I experienced some noticeable progressions in my fitness during that race, but more important perspective has been strung together for me in the recent weeks and all that needs addressed.

Two weeks ago I went in for another CT scan to determine if my tumors had shrunk, grown, spread, or remained stable. The follow up was this past Wednesday, where I went through the now oddly casual routine of meeting my surgical oncologist to receive what could be triumphant or disastrous news. Admittedly, the first time I had a follow up last year, after my first surgery, I was an emotional wreck as is to be expected. This time, however, it was like a routine check up. I know that’s a dangerous place to be, emotionally, just expecting everything to be business as usual, or maybe it’s just a recognition that I have no control over my body’s cancering and all I can do is respond to the results. Regardless, I drove myself to the follow up with very little apprehension.

While sitting in the waiting room a couple came out through the doors where the exam rooms are lined up, probably in their 50’s, and the woman visibly shaken. I didn’t linger my gaze, but it was obvious the woman was holding back more tears. They sat across from me, saying little, and with distant stares that I could read very well. Things were not well and they were faced with a great trouble of which I couldn’t assume, but could probably guess. After minutes of tense silence she couldn’t hold back her thoughts,

“I just don’t understand why we’re told one thing and then we come here and they tell us something different.”

No sooner than the man tried to respond, who I now understood was the one with cancer, the scheduler popped out of another door and called them back. It’s an odd thing, this other door. It’s not the one you enter for the exam rooms, but is it’s own separate space where you go after your exams. There is another door in that room where the scheduler enters, as if she is some “woman behind the curtain” type figure that just appears magically. But you aren’t happy about it. This room feels almost like punishment, or a test. Patients sit in the waiting room and take note of everyone that comes out. If you exit the exam rooms door and head straight out, it’s like you won. You’re free to go about your days and maybe check back in the future for another scan, another test. If, however, you exit the exam rooms and sit back in the waiting room chairs, it means, in a way, you lost. You’re anticipating the dreaded call back into the other room with the scheduler.

The scheduler is the staff member that sets up your surgery. This is why you don’t want to be in this room. Or maybe you do, it depends. She goes through some formalities with you and then asks quite directly, “So when do you want to do this?” As if it’s nothing more than taking your temperature. It’s an odd thing to shift from this moment where you are waiting potentially life changing news to having to just spit out a date for surgery, as if you’ve processed the emotional burden in the five minutes you were sitting in the waiting room. There are, of course, so many dynamics to consider.

What does this mean for my job? (if you are able to work)
Do I have enough money to get by during recovery?
Who do I need to see and what do I need to finish before surgery?
Will everyone be taken care of?
What am I not thinking about?

Some people who have to make these considerations are in a better place than others. I am one of the lucky ones. My cancer grows so slowly that I have time to wait. I can put off surgery until after I’ve spent the summer with my son, completed my fundraiser, or simply organized my life to make this as unproblematic as possible. Others, well, aren’t so lucky. Their cancer is fast growing, life-threatening, and it doesn’t matter what you need to make happen, surgery needs to happen right away. So I felt for that couple called back to the scheduler’s room, because I remember being in that emotional place, frustrated at the changing information, having to make quick life decisions for surgery, and knowing that meant things were really really serious.

I don’t like to get too close to cancer unless I have to, or choose to, but it was good for me to see this couple, to remember how fortunate I am to be in this current moment where I’m doing so well, not so burdened by the what ifs and can still plan my life out when cancer forces its way back into my consciousness. And that’s when I was called through the first set of doors.

The process remained the same as the nurse took my vitals, chatted me up about the weather, and then sent the Fellow in to practice some patient/doctor relationships. As I’ve continued to reiterate in the past, cancer patients should listen to their Oncologist’s Fellow, but take what they say with a grain of salt. They aren’t always up to date on your situation and are really just practicing for their sake rather than yours. That’s fine…just know that’s what’s happening in case they tell you something totally wrong, which I’ve received in the past.

Admittedly, this Fellow was very nice and personable, actually telling me he was excited to meet me as my oncologist had been talking me up to everyone (which is great to hear). Apparently, since my situation is so unique and positive, I’ve become something of a reference point for other patients, an example of a success story. I told him, for selfish reasons, I appreciate being that example…but I’m also glad to offer something of hope for others as I really enjoy hearing other people’s cancer success stories all the same. No matter how brief a moment it can be in someone’s life, just knowing cancering CAN be overcome is very important. He then went on to say that I’m doing so well and since I’m getting so far with this, that they “have to throw out all the books…there is nothing to reference anymore”, which I think was in relation to surgery. I’m not sure how true that statement is, but I can say it was as exciting and encouraging as it was quite frightening. I don’t really want to be the one in “uncharted territory”, where changes and adaptations in my cancering process have left no previous guidance to follow. But hey, here I am, and I can’t really complain about that. A few more formalities and the Fellow left to send in my oncologist.

Since the Runner’s World cover experience, the connection I’ve had with my oncologist seems to have grown to a more personal level. I know he really enjoyed the article, was a previous runner himself, and appreciated my gratitude towards his work…how couldn’t I? He reiterated that I’m talked up to a lot of patients he works with, complimented me on “bulking up”, and went on to explain that my scans were as stable as they had always been. The tumors have simply not grown since the first scan last year after the initial surgery. He might have mentioned nominal growth, but nothing of concern. They had not spread and they had not caused further complications physically. On the contrary, since not being on chemo, I’m back to 80+ miles a week of running with a full set of workouts and am slowly feeling the fitness progressions, leading to his observation of my “bulking up”, which admittedly is a pretty fun term to ascribe to my body type. Then again, surgery is such an incredibly wasting process that since he last saw me, I probably did look noticeably more muscular in my body.

Then he dropped the relative bomb. “So…when do you want to do this?”

Just like that. The third surgery. I knew this was coming and in a way I HOPED this was coming, but, I don’t know, it just didn’t resonate as positively as it did the last time. When I went in to meet with my oncologist before my surgery last August, I honestly didn’t know if surgery was an option. I was neck deep in chemo and for all I knew that was going to be my life until…forever. It sure seemed that way. It was awful, so when he excitedly said we were going back in a second time, I was damn near ecstatic, which is a funny thing to feel about having your body split in two and wasted away to nothing. But then it meant that I was off chemo and might have another chance of being past cancer and could get back to running. Two out of three ain’t bad, I guess.

So this time, I consented to the surgery plan again, because I know it’s my only hope to be past cancer, but consented without as much enthusiasm. Actually, there was a bit of dread. And it’s all related to the life and strength I’ve been able to build back up since last August, not even a year ago.

Last September I was recovering from the second surgery at an astonishing rate and just started getting back to running. Since then I’ve gone from run walks, to consistent efforts, to full weeks of running, to 30 miles a week, to 50, to 80+. I’ve gone from 5 mile runs to 20 miles runs. I’ve gone from 9:30 minute miles to 6:45 minute miles for long runs. I’ve run strong workouts, throwing down 5:40 miles and running quarters like I never had to stop. And I’m not even close to done. I’m still struggling, yes, but the wall of progression that seemed so definitive during my training continues to crumble bit by bit. I’m can look ahead and see myself getting faster and faster. I can push my boundaries and see better workouts, faster mile times, quicker intervals, more and more. I’m not done.

As a matter of fact, next week I’m doing the Cape Cod Ragnar and my first leg is 12.8 miles, a damn near half marathon that I would love to test myself in…though I’m going to end up just short. I feel like I’m very close to putting in an effort that doesn’t feel demoralizing, and although isn’t where I want to be, is honorable enough for my standards. Then the week after I’m pacing my friend, Andrew Peterson (RW cover contest finalist and Special Olympian), through the Region 8 Spring Olympics Opening where we are going to attempt to run under 10:00 for the 3000. 10:00. Yes, that scares me. That’s a 5:21 / mile pace. I have SERIOUS doubts that I’m there yet…but we’re going to try, and I’ve been gearing my training towards this incredible goal for both of us. And, of course, there is the Because We Can benefit run in August, where all my training will be headed towards after the Special Olympics opening. I have a lot of running and progression to look forward to.

But there is a third surgery. And where it was an idea leading up to this last scan, it’s now a reality. And that window of opportunity was given a tentative shut date in late September, after I’ve spent July with my son and after I’ve completed the Because We Can benefit run down the State.

I wasn’t really prepared for the emotional frustration that would put on me, but I’ve been feeling it this past week since the follow up, swinging back and forth between the excitement of my training and the almost depression of realizing it’s all going to come to an abrupt halt. In the moment I can’t help think, “Why bother?” Why am I pushing myself so hard when I’m going to be knocked back to zero after simply laying down on the hospital bed. There are, of course, so many reasons why, but in the moment it’s hard to reconcile them.

I left the exam room and headed out into the waiting room where a few new patients were sitting. I wondered if they had been there enough to know about “the other room”, and I wondered if they were anticipating having to enter it after their appointment, or if they were waiting to see if I was as well. And I was. I sat down and distracted myself flipping through my phone.

The door opened and my name was called.

I tried to respond to the scheduler’s questions with some level of positivity and enthusiasm, but I couldn’t shake the feeling that this surgery wasn’t being met with as much hope as my previous appointment. We discussed my life obligations in the coming months and decided September might be best. Going through the Tuesday dates (Tuesday is surgery day), she started rattling them off.

“We’ve got the 8th, the 15th, the 22nd, the 28th.”

I thought about it momentarily and debated the 22nd. But then it hit me.

Wait…that’s Laura’s birthday. And the day my sister died from her cancer. I wondered if that was a somewhat momentous day and the surgery on that date was fitting, or if it was too emotionally loaded to add to my loved one’s burden. I opted for the 28th. Then with little more formality, I left the room, past the waiting patients and back into my life with little change except a new perspective on the coming shut date of my window of opportunity.

And I can’t shake it.

Since that appointment I continue to have incredibly encouraging runs, showing me that my fitness will continue to return. To what extent? I don’t know, but I’m being shown time and again that I am building endurance and gaining speed…slowly, but surely. Then today I ran down to the Mini Marathon to cheer in some teammates and watch one of the runners I coach go for another Half PR (he got it!). I knew it might be difficult being in that exciting race environment, debating all the what if’s and could I’s and all that, but I needed to be there for others. I’m glad I went. I ran into my old coach at one point and he said what I was thinking, of course, “Do you wish you were out there?”

“Of course…I’ll always wish I was out there.” But I still need more time to know that being out there means I’m running as strong as I can and, more importantly, FEELING as strong as I can. I could have run today, and run fairly well, but I would have suffered and suffered hard. Not just physically, but emotionally, and that’s not why I run. So as much as I wanted to be out there today and as close as I’m getting to be there again, I just wasn’t ready today.

But it did light another fire in me. It did reaffirm that I NEED to test myself, that I’ve put in so much work and it’s not ok to keep pushing without really testing my abilities, honestly. Not in a Ragnar. Not in a pacing situation. Not in an ultra run. But in a race, where I’m not racing against others, but figuring out what I’ve been able to accomplish in that environment. And yet…there is that window, now getting ready to shut.

I walked out of the appointment room with a tentative date set for September, but watching the runners today and on my way back home, I started to think of alternatives. I started to look ahead and see if there was just one moment, one race, where I could put this mind and body on the line before that surgery wipes me out again. I don’t want to fully admit this would be “one last time” at these abilities, but I’m not sure what will happen after this third surgery. What I have is what I’ve built right now, past the ravages of surgery and chemo, and it would be disrespectful to myself to not test it.

Of course I mentioned this to Laura when I returned home and before I knew it we were considering what races might lay out ahead near my surgery date. There was talk of the Chicago Marathon and some local Halfs, but when we figured out what would be best for seeing my son and not pushing the surgery out too far, it seems the Runner’s World Half on October 18th will work. Granted, I need to have this confirmed with my oncologist, but I don’t foresee any issues there. That means surgery might get pushed to October 27th. Admittedly, this all needs to be confirmed with my oncologist, but for now, this is a pretty solid plan for us, and will enable me to prepare emotionally, physically, and financially, and to go for it one last time before surgery…to see what I’m capable of, to see how strong I can get, and to finish one more honest race before that window firmly shuts again.

Then we start all over.


5 responses to “Life Report

  1. Great news that you will have full summer and fall running seasons! Have fun in Cape Cod, sounds like a blast.

  2. Hi Scott. I am a curious character so I apologize if these questions bother you. If you are doing so well, then why do you need more surgery? It seems odd that they are operating on you again. Did the tumor start growing again? You d u dnt say in this post so im just assuming it dud. Did your sister have the same thing? How long did she live past her diagnosis? You are inspiration to many. I wish I was there for the relay. Im not sure why I didnt end up running with you guys as I live two hours from the Cape. I think maybe it’s because its kinda close to my marathon in Vermont in ten days from now. What was the ave. miles per person.? I did Reach the Beach and think id end up running 18 miles or so divided up each time.

  3. Ok I think I stayrd up too late last night. The adrenaline from my track workout and just spending time on fbook etc when I should have been sleeping. So the doc said that the tumor has not grown or spread. It sounds like its dormant. And you look healthy and doing so well otherwise. Im no doctor but why get surgery when all signs point to health? Thats almost like me asking for surgery when there’s nothing that indicates cancer or any motor disfunction of any kind. I hate to see you go through chemo or surgery again if youre healthy. Why not wait until a scan shows things progressing. I wish you the best.

    • The fortunate side of my type of cancer is that it is slow growing, so since the first surgery when things were really critical, I’m able to take my time with treatment, where other types of cancers grow quickly and take over the body and its functions rapidly. The downside to my cancer is that, even with full treatment, recurrence rates are significantly high (91% is one figure I’ve seen), and so the best chance of staying cancer free is removing every last tumor as soon as possible.

      Also, the surgery is so extensive that it’s best to do it when I’m young (relatively) and healthy and strong, allowing me to receive the full treatment (debulking, intra-operative chemo, post-operative chemo) with significantly lessened risks during recovery.

      Ultimately, if we wait to see what happens, despite me feeling healthy right now (mind you, I felt healthy when I was on the verge of dying before my first surgery too) we risk the tumors growing or becoming more difficult to remove and a compromised recovery, which could be severely problematic.

      I didn’t take the time to explain all this in my post…and although I’m not as psyched about going into surgery a third time (and maybe more), I also know it’s an imperative step to take. Trust me, after hearing about so many others dying from this cancer, I’m looking forward to getting this taken care of as soon as possible, despite how depressing it is that I will lose all my current strength. I’m fortunate to be in this position. Thanks for your concern.

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