I’ve Got Four Months…

It's been almost three weeks now since our visit with the surgical oncologist, and I've tried to sit down and write an update several times. The thoughts just haven't come in a way I wanted to write about it, so I've abandoned the task every time. I've had plenty of thoughts, but none have seemed all that suitable to write and share, at least in a cohesive form.

First off, that headline is a little misleading. Okay, maybe a lot misleading but it's a bit of how things feel and has some reality I'll explain. Apologies though for the clickbait though. Here's the gist of the message (as always, pun intended).

The Surgical Consult: Report In

We met with Dr. Tamara Bowles, who impressed us with her knowledge, experience, and credentials, and offered a frankness about my history and current situation that we both appreciated and needed to hear. Dr. Bowles has been reviewing my case since the beginning being part of the committee within the doctors group that my oncologist is a member. So with that familiarity she took us through my first scan to now.

The first message was that she and the committee felt there was more benefit realized form the last year on Gleevec than the radiologist report indicated in the scan report. That's a good thing, but to show how that was the case, both Heather and I were made more aware just how spread and invasive my cancer showing in the original scan. How we didn't really know this before I'm not sure, but there were pockets of cancer in many places, plus numerous nodules throughout my gastrointestinal cavity. These nodules have decreased in size, with many not appearing present at all in the most recent scan.

This is a very good thing because those many small nodules can be very hard to find and extract, and would necessitate removal of many areas in which they reside.

via GIPHY

The second and harder message to receive was that while Dr. Bowles feels confident in performing the surgery and that surgery would be possible and successful, it's going to be major and very damaging. Here's the breakdown of the likely impact:

• The entire spleen will be removed. The spleen is still completely enveloped by the largest tumor mass and will not be recoverable.
• Part of the diaphragm
• Part of the liver
• Part of one kidney
• Several lymph nodes in that region of the primary mass. Others unknown.
• Part of my small intestine, how much unknown until they go in
• Possibly impact to my colon, but need to scan more to know if this can be avoided
• Most if not all of the stomach.

While this was part of the realization from the newest scan report, that was some seriously difficult impact to hear. The last one on that list is the real kicker because it has the most impact on future quality of life. In all this time of treatment and fighting for good health I had never really pictured what the impact of surgery could or would be.

Now I have a picture, and it's not a great one.

I'll be honest in saying that my efforts throughout this last year have been driven primarily by the idea that I could shrink this tumor and lessen the damage to the rest of my body when they cut this thing out. Each time I'd go to the gym and every day of healthier eating and living was motivated by that effort. As I mentioned before, I'm undergoing a bit of a paradigm shift with this new information.

The Good News

Maybe that first part should have been termed “the ugly” but I guess it's just reality. Going into the meeting my wife confessed she was worried we'd be hearing that there wasn't much they could do. The good takeaway here is, it's survivable. What it means in the long term while difficult to hear and a change of some aspects of life is that I can survive this. We can buy more years of life, how many we don't know but hopefully many.

The doc was also very complimentary of my efforts to this point, emphasizing that going into a major surgery like this in top physical form will have tremendous impact on recovery and long term prospects. That's a good thing for sure and a testament to the efforts of the last year and a half. It was actually kind of funny at the outset of the visit. You know how doctors review your history asking the standard questions? Do you drink, smoke, history of illness, etc.? She also asked the standard “Do you exercise?” Uh, yeah. Definitely. “How often?” Six days a week for a couple hours a day. She smiled and said “So I've heard.” Well I'm glad to be known as that patient if they're talking about my healthy efforts along with my crazy tumor.

Getting all this new knowledge and info has been tough to receive and wrap my head around. No other way to say it really. Does it change my “I Choose To Live” mentality? Absolutely not. Has it required tearing down and then building back up my confidence and shaping my motivational framework for what I'm doing? You bet it has.

Amazing Friends & Support

For all that know me personally or even have surmised through our various acquaintances know I'm a fiercely independent cuss. I like to solve problems, get things done, and do it on my own whenever possible. This whole experience has forced me to swallow my pride on many occasions and say thank you to those that have reached out with their support in various ways. From simple time with friends to physical support in various ways, it has been both humbling and a great help for me and my family. We are still very much in a good place overall within our own resources and family, in no small part because of Heather's efforts to work full time and do so much more. And many have reached out offering support, to which we've typically responded that we are doing just fine and hold off because we know much harder times lie ahead where we may need more.

There are a few close friends that I've updated a bit more directly and frequently than these periodic updates. One of which having heard this most recent news offered that it was time Heather and I had a little getaway to decompress, review all this information, and most of al just have some time together. I had been thinking of this and he simply said “I've got this.” A week and a half later we found ourselves on an amazing couple of day retreat in Las Vegas getting some VIP treatment. Flown down, staying in the Flamingo with several shows lined up to see and plenty of relaxation time, it was the perfect and just what we needed. Plus we got to see this brother and sister show that was pretty good. I mean the brother was alright ;-P. Beyond what I could do every on my own and the generosity was amazing. Heather started referring to him as “Fairy Godfather.” Seriously what an amazing friend. Thanks Donny.


Beyond the trip that cannot be topped, there have been so many great friends that upon hearing this latest news have offered their love and support and ideas to help take our collective minds off of this situation a bit. To every one of you, thank you. Time will tell what I can and cannot do, and what my independent streak will allow.

So What's Next? What This About 4 Months?

At the end of the consult, having had all the current knowledge explained and the surgical prospects laid out, our question to the doctor was “what do you recommend now?” Her takeaway was that the surgical window has not yet closed, and we have a little time to try and do some more good with the chemo. As I mentioned previously, her biggest concern is the stomach and the prospects of losing it entirely. Given than the primary tumor mass has appeared to rebound and grow back in size, surgery is the best option at this point. But seeing that the Gleevec has done some good in the reduction of satellite nodules and reshaped some of the tumor mass, she recommended that we go another four months and do another scan. Not wait as long this time in case anything negative continues to develop, but in essence see if we can save part of the stomach.

So I've got four months to try and save the stomach. Or at least part of it. The question is then, what do I do in those four months?

From the doc's perspective it really comes down to the chemo and giving it more time to interfere with the growth receptors of the tumor, or the parts that are impacted by this drug at least. From my perspective, I've got four months to pretty much go for broke. It might be too little too late, but in my mind I've got to try. I can't get to the end of this four months and get a negative scan having not made an effort, forever questioning whether I could have done more.

So as of last week I've made even further changes to my diet, visited with a wellness doctor again adding more targeted supplementation to my daily intake, and I continue to workout as long and hard as my body will allow. I still may get to this next scan and come back with not enough change, but at least I will know I tried. When the next scan comes along, what that will mean next frankly is unknown. The doc says it's essentially a judgement call. If we look and see the scan as mostly unchanged, then it's a choice to say let's go in and do the surgery, or perhaps go another shorter period and try again to gain some further benefit. We may see that other growths or spread make immediate surgery essential. If that's the case, then they split me down the middle, pull everything out and see what they can safely put back.

Yeah, the surgery is going to be that bad. And recovery is a week in the hospital, then 6-8 weeks at home laid up. It's gonna be a doozy.

I Still Choose To Live

So what does this all mean here and now? It sure didn't help getting extremely sick with the flu right in the week I was visiting with the doc. In fact I showed up to the consult wearing a mask to avoid spreading the virus and looking pretty beat up. Getting the flu on top of everything else my body is enduring was not a good combination. Knocked me flat for days and frankly I'm still recovering physically. It's tough coming back from being that sick, which adds to the dread of what the surgery will mean.

While I've slowly gotten my workouts back to where they were a few weeks ago, my days have been tougher to complete. The afternoons I start to lose focus and feel wiped out earlier than before, and by the evenings I'm spending far too much time laid out on a couch before I eventually fall into bed with fatigue winning out. While I still retain some hope that I'll get that time and physical stamina corrected again thinking it's residual effects from the flu, it has made me take a hard look at what I'm going to do for these next several months.

With all that said, this all further emphasizes the biggest priorities in life. My family and how I spend the time I have each day with them and in what I do. I still feel this overwhelming desire to make the most of each day, and to focus my energy and efforts toward making every effort I can to not only survive, but live each day to it's fullest. The reality is aI do need to still work to help provide for the family, and I need to stay active in work and community because life will go on beyond these four months. So while I need to enact some change to allow for the ebb and flow of what I can do both physically and mentally, I need to be doing it all with a mindset of both now and the future.

It's tough to think beyond these four months. That's just being honest. So that will be my primary focus. I've trying to think of some ideas of some special things I want to do for and with my kids in that time. Not like things are ending, but because this time is precious, and what happens next is a big fat unknown. I've got some personal goals and a more than a few struggles to work out. There are some opportunities to explore, and some really good things I'll have to sacrifice in the interest of setting limits on myself in this time as well. Again I'm grateful for those around me that have been and continue to be understanding of this new reality and the changes it requires.

So I'm still working out, maintaining my low weight and pushing to build cardio and muscle. I've adjusted my diet further with both good health and cancer fight in mind. I'm changing some things in my work day to allow for additional rest when needed and some flexibility to make memories and focus on what's most important. Most of all, I'm still looking forward. I'm still putting forth the efforts and hoping for the best. It has required retooling some expectations and adjusting some efforts, but that's pretty much true of every one of our journeys in life. The adjust to get back on course and headed in the right direction, traversing the new terrain we encounter and do our best to enjoy the adventure along the way.

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