Living with a Diagnosis

Whew, what a whirlwind trip for a day long meeting. I was in Boston for 25 hours from wheels down to wheels up and heading home. A quick trip necessitated because of other plans and just too costly to extend at personal expense. Got home late last night, but this morning I needed the benefits of yoga and drug myself out of bed to attend at Brick Canvas. It was tough and despite being late due to a big accident on the freeway causing delays, I was there. I needed to mentally go back to my post last week about finding center and being balance because I was well of balance this morning! The practice session was just what I needed and I'm grateful for the energy shared with the class.

I’m grateful for the opportunity to meet this pharmaceutical company looking to hear patient experience, concerns and suggestions to improve their programs and protocols. There were genuine questions asked, interactions and charting of ideas that hopefully provided them with valuable information. They expressed gratitude for our participation and even times of surprise at responses that could change thinking.

While there wasn’t a lot of new information learned personally, it was a good experience hearing the stories of others in their past and ongoing treatments. The actual information offered was under non-disclosure agreement for both the protection of proprietary information and also privacy for those in attendance. Not everyone chooses to be public about their individual experience, which I can completely appreciate. Some expressed they choose not to comment or share about their cancer trials because they simply don’t want that to define them. Others said it would simply make it too real or absolute. Others, like me, are public about their dialogue and interactions. We all find our pathway that best suits us at the time, and of course that is appropriate and what we should do.

It was impressive to see a group of 18 gathered that represented those relatively early in their treatment such as 6-9 months since diagnosis, to others that had been treating this for decades. Some were caregivers supporting family members or representing those recently passed. The viewpoint of caregivers was unique and enlightening at times compared to first person views as the one being treated. I’m constantly reminded and expressed in one of my “sticky note” comments that we must always remember the caregivers because their needs for support are often overlooked when giving so much to the patient.

I had a long discussion on the flight home (thanks free messaging Wifi Delta) with my good friend George about the experience. Kind of a dump of thoughts and emotions. I thought of copying some over to a post, but then did realize some of my frank comments may not be for public consumption. Sometimes those first thoughts require a bit of a filter, although when I write like this I call it a stream of consciousness and typically publish immediately without review. I like the frank honesty and transparency as long as I don’t stick my foot too far in my mouth.

I’ll try to reiterate a few of those feelings. Be ready, they are not all that motivational but “real talk.” I’ll also try to limit to impressions I had and understood without disclosing anything about anyone else or information disclosed to or by the company.

Overwhelmingly the biggest pain points are information, knowing what might be useful to try and the huge financial impact of treatment. Often financial issues prevent some possible treatment options. With such a rare cancer most oncologists know little to nothing about it. So they just look up the standard protocols and go with that. I know that’s what has happened with me. There are no specialists in my state or even neighboring states for my specific cancer. Going out of state means out of network so less or no insurance coverage plus all the associated costs of travel. Thus far it just not seem feasible. I don’t want to leave that kind of burden on my family.

So often people and even doctors will think of things to offer in terms of what other cancer patients can do, but it just isn’t something that works for us. This doesn’t even mention all the alternate theories and treatment ideas people have, but I’ll leave that topic for another day as it’s been rattling around my brain still.

GIST patients get people saying “well at least you don’t have to do chemo or radiation” like we’re lucky. People discount an oral chemo like it’s somehow better and we’d be cured if we just believe harder or better. It was interesting to hear this said by others in my same situation. We are all grateful that treatment options do exist for this very rare cancer, but they are not easy and are limited. We have drugs that can work and may for a time, then some options to move to try and later clinical trials exist if you qualify. It’s a winding path, but the effort is to extend life and quality of life. So often it us up to use to learn what’s possible because so little is known locally, and in the end we are our own advocates and responsible for finding our best care options.

Another comment was how people who finish chemo get to “ring the bell” at their last treatment. Very popular in treatment centers and a big moment for people. We GIST cancer patients never experience that moment because we don’t go in for intravenous chemo and our treatment never ends. There is no cure. We continue taking treatment until we die. It’s our reality. It’s a sobering thought and yet also something important to understand in the mental process of learning to LIVE with the diagnosis.

Many thoughts were heavy, but the feeling of unity and desire to connect was strong. I doubt you could find a more diverse set of backgrounds and life experience in such a small group that is unified by a common personal cause. But then I also can see it being true in any significant diagnosis. It was good to meet in person some that I’ve only met in the online support group in which we participate. We each seek more knowledge and understanding that can help us and others with our diagnosis.

I have much more of this to process in the days coming, and while I didn’t feel like I gained anything that changes my current treatment efforts it was good to continue in the effort to gain knowledge and understanding. I’m in my second month of the drug Sutent and just scheduled the next CT scan for the end of this month to take a peek at the progression of the new tumors. Regardless of the results of the scan, we will likely continue on the drug for at least another period of time to scan one again as this next scan is simply a data point in which to compare. We need to see if the drug is holding or limiting the growth, or if the growth continues and at what pace to know if this is the right protocol for me. If I fail this second drug, then a third (even less desirable) drug might be in my future or perhaps a clinical trial. Lots of unknown, but for now we stay the course and suck it up on the side effects.

The final takeaway for me on this meeting was essentially I’m not alone. There are others going through this journey, and they have experiences both good and bad to share and learn from. Some have succumbed quickly, others have lasted long with a relatively good quality of life. My journey is my own, and the success or losses of others when it comes to treatment efficacy is no guarantee of how it will work or fail for me. And yet, in many ways it shows me there is a path to not just trying to survive, but also LIVE with the diagnosis. It’s a great reminder and confirmation of my desire.