The next step.

  I haven’t written anything in quite a while. I apologize. My goal with this blog was to not only keep everyone informed, but to hopefully inspire others in their own battle…be it cancer or something else. But the results of my last CT scan put me in a really dark place. For those of you who don’t know, I was told my mesenteric tumor was back, or maybe that it never left ithe first place. The tumor is in the exact spot it used to be in, slightly larger, and has brought a few nodules with it. This probably explains all the pain I’ve been having for the last several weeks.

I pride myself in how well I’ve handled this situation so far, but the CT scan really scared me. I holed myself up in my dark living room and tried not to think of death every minute. I tried to twist my thoughts into something positive…but it just wasn’t working. All I wanted to do was cry. I wanted to cry and be cured. As if the tears were soaking up all the cancer in my body and pouring those malignant cells out of my body. As we all know, that’s not how this works. 

I needed time. Time to cry. Time to think. Time to pray. Time, time, time. But time isn’t a commodity I have right now. Fortunately, I have a team of Doctors who can think and digest things faster than I can. Within a day of having my CT scan results, my Doctor, Dr. Messersmith, had a plan for me. We would try to get me enrolled in a clinical trial with an PDL-1 inhibitor and Avastin. The inhibitor belongs to a newer class of medicine: immunotherapy. The goal is to take the brakes that the cancer placed on my immune system off. This medicine should allow my immune system to recognize the cancer and kill the tumor cells on its own. Avastin attacks the tumors blood supply and kills off newly formed blood vessels from the tumor. Ideally, this protocol will be a “one-two punch” to the cancer. Interestingly enough, this type of medicine (officially called MPDL3280A) has been shown to be effective on patients with a lot of mutations in their tumor and the characteristic of Micro-Sattelite Instability-High. Don’t ask me what that means…I’ve done a good job researching and I still don’t fully understand all of this. A hallmark trait of Lynch Syndrome is that the cancer is usually MSI-high and has way more mutations than normal. For example: sporadic colon cancer may only have 70 or so mutations….but with Lynch, I have over roughly 1200 mutations. This means my body is already recognizing some of the mutations and fighting them off. So, my T cells are already around my tumor waiting to attack…they just can’t right now. The goal is to get them all to attack at once now. Sadly, without the msi-high characteristic, and the lack of genetic mutations, the medicine is not effective for most colon cancer patients.
So once again, I am part of a small group of people whose curse may just be the thing that helps me out a little bit. Lucky me.

I would be lying if I said I wasn’t scared. But I’m also very excited about all of this. I cannot believe anything other than “this will work,” because it has to work. It has to work. It has to work. Please, God, this has to work.

I start the trial tomorrow morning around 7 am. I can’t help but feel a little pride in how I’ve chosen to deal with all of this. I really think I’ve taken a pretty daring path, utilizing as many cutting edge technologies as I can. Some friends have said I’m a pioneer of sorts…helping pave the path for those who come after me. That’s great…and I want to contribute to science, of course, but at the end of the day all I am trying to do is live as long as I can. And this trial seems to be the best way to do that for now. Some have questioned why I am taking such an unknown path as opposed to the standard of care that is still available to me. I don’t have a solid answer for that. But I feel drawn to this trial…or rather, I feel lead to this trial. So I am putting my faith in God and myself and my Doctor. This has to work.
I’ll try to do a better job about posting, as I have noticed this little blog gets quite a bit of love from you all. I appreciate that. I’ll keep fighting if you keep cheering from the sidelines. Thanks, friends.