The Stage IV Life

“Wow, You’ve been through the ringer, eh?”

This was my introduction to the back Doc I went to see for the first time who came through the door with my X-ray. Nice. Not wrong, but if I was someone who needed a little subtlety, this might have gone over a little differently. Luckily, this guy could read the room and realized by looking at my insides that hurting my feelings was not going to happen, but I digress. Let’s start from the beginning.

Firstly, I would like to apologize for seriously slacking at blogging and updating you all on the happenings, etc. If this was my job I would most certainly have been canned long ago. That said, I will work on getting better. No promises.

So let’s pick it up after the SOT shot I took back in August. This was the shot that was basically a vaccine created using my own blood by the Greeks to fight cancer around the clock for 4 months. After that time it is assessed, I am tested and we (docs and us) decide if another shot is needed by the number of my circulating tumor cells at that time. Because this “vaccine” is created using my own blood, the side effects are basically none, save one. Keep in mind that this is still considered a new therapy/protocol, so there is still a lot of unknowns, but the results so far in the testing have been really good, so…. About that one side effect… like many other medicines/therapies/chemos that attack tumors, it is always possible and likely that it will swell the tumor as it is “killing” it. This is pretty understood. I am quite sure that this was the case in the past for me when I was killing my previous tumor. The difference this time around is that it happened to be in a spot that was near other “stuff.” Here’s the story.

So the SOT was making me feel kind of crappy overall. For time purposes that is the best way to describe it. I was fine before it, and within the first couple of weeks after I could tell I was off. It started mostly in my stomach/intestinal area as usual because that is where all of the paperclips and rubber bands are holding me together from my tumor removal in ’21. As the month and into the next went on, I was feeling worse and started having trouble sleeping. I DO NOT LOSE SLEEP. This cannot happen. I am not the smartest cat around, but I am absolutely useless when I don’t sleep well. I’m talking slurring, walking into walls, unable to have a intelligible conversations. Real bad. I get it, suck it up- everyone has trouble sleeping, blah, blah, blah. Not me. So that was the first issue.

Next was the breathing. I did a 10 mile charity run in early Sept. at UNR and that is when I first noticed the pain in my chest. I could tell that I was laboring a bit, but I also knew that I wasn’t sleeping well, so I assumed that was the reason. After all, I have always been top notch when it comes to chest, lungs and heart health. I am an epic disaster everywhere else, but I always at least had that. After that run, I started to monitor my heart rate and breathing much closer while running and I could see that something was wrong. I mean, my HR was jumping up much quicker than normal on super easy runs and I was getting gassed out way too early. I was honestly super pissed because I had been training to do a full marathon early next year and had a half-marathon coming up in a couple of weeks and didn’t want any setbacks. It turns out that cancer does not give two “you know what’s” about my plans. [Sidenote: as I am writing this I remember how much I hate cancer and how much it slowly takes things you care about away, not matter how big or small]

I continued with my daily runs, but they were getting tougher and tougher. I was really bummed because the half marathon was a week away and I had regressed so much in such a short time!! My experience with running is that as long as you keep at it, even when you back off a bit, you don’t regress too much. If you take extended time off, however, whether for injury, work, life, whatever, it takes a lot more work to get back to where you were. A lot. Not to mention the mental part involved. Anyway, my point here is that I was a little concerned that I wouldn’t even be able to do the half marathon, and I was really looking forward to this one because I wanted to crush my time from the last one. Well, instead I ended up in the ER that week. Earlier in the week I spoke with my docs about the chest pains because I was worried and they said definitely get to the hospital as chest pains are no joke.

So there I was in my all-too-familiar stomping grounds of the last couple of years waiting for the news. It took the standard ER waiting time of forever to actually get any answers and when I did, it was what I thought. The tumor had not only grown (swelled??), but was now pushing into my diaphragm and aorta. Yeah, that explains it. After I got this fine piece of news, I received the most non-verbal “you are screwed” thing that any doctor can give anyone…..the hand on the shoulder. This is not my first time with the “I don’t know what to tell you” unsaid doctor speak, but this one hit a little harder. I have been fighting, dragging, falling, rising and putting everyone through all of this hell and here I am back at the beginning, with the hand on the shoulder. I respect you fine folks reading this so I will not repeat the words and thoughts that came out at that time, but it was dark. Very dark.

Needless to say, I couldn’t run that half marathon later that week after my ER visit. I did contemplate it though, because, screw you cancer! But alas, it could have ended badly and that isn’t fair to everyone else. I reached out to the organizers and they changed me to a 5K walk and added Jen on so she could walk with me, so that was a cool unexpected turn (shout out to the organizers).

So….. as I write this today, I am maintaining. That is the best way I can put it. I am “waiting” for the tumor to shrink back down so I can breathe normal again, I am also “waiting” for the SOT shot to wear off so I can see if I will feel better overall (other than the heart issue).

Cancer is a clever foe. It is capable of changing direction on a dime. It is a survivor. When you find a way to “win” a battle, it regroups and comes from a different way. It plays by guerrilla warfare tactics and has no emotion or mercy. There is no enemy in this world that you will face that can compare to the one that is within. People always say this stuff and for the most part I always thought it was blow-off word salad, but guess what? I can tell you first hand from the front lines that it is true. There is no rest when the enemy is you. That said, though, there is always hope. Always. I, as I always have, will never give up and never back down from this. Ever. I will drag myself across the finish line if I have to but I am not giving in and I know the Lord is with me. I have been down before, and I will be down again, but I will always get back up, and this time is no different. The path is unclear, but my faith is not.

To summarize all of this for y’all, this a is a time of a bit of limbo for us. We are looking to begin a new treatment that takes a more scientific and biological approach to this fight and are in the early process of getting into that. As I have details, I will share—-promise. As for the protocol I am currently on, I am a bit torn. I don’t want all that we have done (and spent) to be for nothing, but I don’t want to move forward with something that is not working and possibly making things worse. Again, cancer regroups and adjusts, so I have to be ready to do the same. The coming weeks will tell the story for sure and as we walk this next journey, I will document it for all to follow.

So the Cliff’s Notes version: I am awake and alive, and I am fighting. I’ve taken a couple of hard right hooks, and the jab is landing pretty good right now, but I will win the later rounds here and be standing at the end. After all, I have to run that marathon next year….

P.S. For context from the beginning, the back doc was for a severe lower back pain that I have been having and possibly need surgery on. TBD. I was also due to have surgery for a severely torn rotator cuff in my right shoulder on Oct. 31, but obviously had to put that off for now. Like I said, I am a disaster, lol. Remember to take care of yourselves people!