Is it Time for Some Good News?

Many of my updates through these first few months have been about how I’m feeling and the effort to fight the good fight because I simply didn’t have much information to know whether the treatment is working. Just going on faith that the right treatment was being made for my tumor type and doing my best effort to aid in the treatment. 

That’s about to change.

So if you’ve been with me through my journey, it’s been a lot of little to know news. You’re my team, so you deserve to get in on the real data when I’ve got it.

Each month I’ve been visiting the oncologist mainly to get some blood work done, to check in and see if my body is handling the treatment. The daily dose of Gleevec I’m taking hits the body hard. I can’t say it’s as bad as a chemo treatment, but it’s very similar in the side effects but spread out in a daily treatment. But this is something I can be 100% in. I have a perfect record in taking my dosage every day from when I started.

Seems simple, right? But that’s the way I view most of my efforts. I can’t be perfect in all things, but there are some things I can do exactly that. I hesitate to say I’ve done my “best” every day because there is no doubt I fall short in many ways on almost every day. So was it my best? Probably not in a literal sense. But pretty darn good is close enough on most days. I’ll keep trying for better, and on some days that’s good enough.

So shut up already and tell us the news.

I know, drawing this out a little. But I haven’t had any news to share for awhile so I’m relishing the moment.

Four months ago was my first CT scan that changed the direction of my journey in a big way. That room spinning, rock your world kind of change. If you remember, it was a big tumor - BFT I called it - and too invasive to remove surgically. We had no idea how long it had been there, but based on a slow growth number the assumption is it’s been there for quite awhile. My recent efforts to get fit, lose weight and improve my health had squeezed in on the tumor and made the diagnosis possible.

Here’s a reminder of what it looked like at that point:

Monday I had a new CT scan performed at the American Fork Hospital. Here’s the summary notes from the radiologist:

“Marked decrease in size of extensive upper abdominal masses when compared with the prior CT scan 4 months earlier. There is some low-density fluid appearing material in these regions, probably related to some residual tumor but well-defined masses are not visualized. There is some retroperitoneal lymphadenopathy as described.”

Marked decrease.

Those are the power words in that statement. I didn't get any new measurements from the radiologist, so we look for the phrasing in that summary and the other descriptions in the report. Marked decrease is a good phrase for only 3.5 months into my treatment. That’s a good thing. A really good thing.

The oncologist did some unofficial, not-an-expert in office measurements and we saw around 3 cm decrease in size in a loose comparison of about the same cross sectional slide. In a 20 cm tumor that’s a marked decrease. I’ll take it. The important part in the phrasing is also low-density fluid in areas of residual tumor. That is pockets of necrosis where the tumor appears to be breaking down within the mass.

Does that mean I’m on the way to a cure? Well yes and no. Gleevec isn’t a cure and never will be. It’s a growth blocker, which means it can shrink the tumor but will never eradicate it. If I can tolerate the drug and side effects, one philosophy is to stay on it as long as possible. But drug treatment is expensive and eventually the remaining tumor could mutate further into more drug resistant cells that grow again. The other philosophy is to shrink the tumor as much as possible and then go cut it out. Currently that’s my preference. Let’s cut that sucker out.

So how long? Really no idea at this point. The good news is it appears to be working to some degree. We are seeing some pull back. So maybe another year of drug treatment is when we start getting serious discussions about surgery. Maybe longer, maybe less. Only time and some future scans will tell.

Another good takeaway? My body is really doing well handling the treatment according to my blood work numbers. That’s a testament to my health and fitness efforts. Sure the numbers have taken a hit, but they’ve stayed in an acceptable range and even rebounded a little. The hard work is paying off. Enough so that the doc switched me up to an every other month checkup schedule. Yeah baby. #X4ever & #GoBeyond remain my mantra and I’m seeing the fruits of the labor. In basic everyday stats my last read was 122/60 blood pressure and a 50 bpm resting heart rate. Pretty good considering I had a little anxiety walking into the appointment as well. WBC, RBC, Hematocrit & other numbers on the low end of normal range.

Back to that phrasing in the last part of the summary. That’s the not so great news category. Retroperitoneal lymphadenopathy (I looked it up) means disease in the lymph nodes of in the abdomen. In the first CT scan things were so big we simply couldn’t even see the lymph nodes to know if they had tumor in there. Given the size of the tumor we kind of suspected they were invaded, but it was a grey area (pun intended). Now that things have pulled back a little we can see there is some signs of disease, which means I’m likely a solid stage 4 for this cancer. Not the best information, but it’s still information. Hopefully the Gleevec is doing some good in there as well. I expect that means some nodes will have to be removed down the road as well.

Ok, that’s enough. You get the picture. Well, here’s the picture for those visually inclined like me.

So the takeaway here is there’s still a big frickin’ tumor in there, but it’s a little smaller BFT that’s taking a beating. And I plan to keep beating on it with everything I’ve got. Medication, check. Hard workouts, check. Good overall diet, check.

I choose to live and so far it appears to be working. We’ve got this.

#ichoosetolive