Wanna See?

It took awhile this time but the CT scan images were finally available in the Mayo Clinic app today. I’m a visual person so I always like to see these along with the radiologist report. Like is probably the wrong word when it comes to this but you know what I mean.

To be frank it’s pretty grim. These are the screen shots with measurements showing some of the tumor growth and proliferation. If you take a look and zoom in to see the measurement you get an idea of just how big of a primary tumor mass. Here’s some wording from the report:

IMPRESSION
1. Marked progression of diffuse metastatic GI stromal tumor in the abdomen and pelvis. The largest confluent mass is in the left upper quadrant measuring 22cm.
2. Innumerable implants surrounding the liver, gallbladder, pancreas, adrenal glands, and involving the omentum, rectovesical space have also enlarged.
3. Stable occlusion of a branch of posterior segment right portal vein.

Without going into all the descriptions of where and how big everything is, the summary is it’s pretty much all over the abdomen and getting bigger by the day. And this is just the abdomen. Another report discusses how it’s crossed the diaphragm and is invading the space around the left lung. Waiting weeks to get on a new drug to try is excruciating knowing this, but we have to follow the protocol.

So what does this mean or change? Nothing really other than knowing time is of the essence in every way. We need the time to keep trying new possible drugs to tame or reduce this size and growth. Time that we don’t appear to have. But we’ll keep trying and pushing for time.

It sure explains the marked increase in pain I’ve been having in my lower left quadrant and back. It’s like I’ve been sucker punched in the left kidney and hurts beneath the ribs. I can push in the pain points and feel it. I constantly try to stretch or pop my back to relieve the pain, but that’s not the source of it. But I keep trying. Ice, stretch, heat, hot epsom salt baths, etc. lots of pain pills that I’ve been avoiding for months. Looks like this is a new reality I need to manage and come to terms with at this point. But hey, at least I have an excuse when I’m out of breath or can’t keep up the pace I used to 😉

From the massive spread and all the organs involved they’ve told me I’m inoperable and I can see why. Maybe I can convince a surgeon to buy me some time with some debulking, but likely not. They know it would just return quickly, but perhaps I can plead it buys me some quality of life and time to try additional drugs.

It’s strange to me how much how I feel and being constantly aware of different sensations in my body has become a hire part of each day. Ive always been one to take note of changes in feeling to know when I’m getting sick or when I need to address me fitness, diet, or sleep. Now it’s nearly all encompassing. I’m not happy about that, but again it’s a new reality.

So again, what does it mean? It means I need a bit more intervention to make days manageable. This last week I’ve powered through some days and others I’ve had time to rest and recoup so I’ve used them. In some ways it was necessary but also banking some rest getting ready for a busy week in Atlanta on a job. I’ll take my pills with me and know that being engaged in work and good friends will give me a boost.

More than ever it makes me want to get out and make memories with family and good friends. I want to do all the good and fun things while I can. My family planned a surprise for me this last week right out of the “Live Like Your Dying” song chorus, skydiving. Unfortunately we got rained out but we have it rescheduled soon. Stoked for it. Don’t think bull riding is up next but I’m all for some bucket list items if we can do it.

We’ve had some very generous offers from family and friends to make some excursions possible. Mostly we just haven’t seen how we can fit them into everyday family life, but we’re trying to see what we can make happen.

There’s life to live and a driving desire to make every day count. I love my family and want to have those memories be lasting and enjoyable. Life is meant to be celebrated and I intend to do just that and spend it with those care most about.

Hopefully this all doesn’t sound to fatalistic or gloom. It’s a dose of the reality we are experiencing at this time. There’s every possibility the next drug could be the one that makes a big difference for me. Given the recent history of how I’ve responded to the drugs so far I’m not overly optimistic but I hope remains. Hope for time. Hope for some miracle to change the current direction and speed I’m heading.

That’s lots of hope, but we can always hope. In the meantime, I still choose to live and will for as long as possible.