20210409 Cancer Treatment Update:

Labs, CT Scan Chest, Pelvis, and Abdomen, PET Scan, MRI, Pending Echocardiogram and Endoscopy to biopsy preexisting tumors on my Pancreas. The Bronchial Endoscopy from March 26, 2021 confirmed what we already knew comcerning the metastatic nature of the largest tumor located near the AorticPulmonary window.

So now I have a question for all of you. Family, friends, classmates, acquaintances, Lambda Chi Alpha brothers (IE1328), coworkers, visitors to the blog, everyone in between…What would you do if you were told you had two years left to live?

I now find myself in unfamiliar territory for the first time in a long time. With the cancer getting more aggressive than it has in the past, I was faced with asking the tough questions. What is a realistic life expectancy for my situation as we are right now? How long do I have to live? Who hasn’t wondered what the answer to that question is? Well, now I know, or at least have an estimate that most people will never know, or would want to know. Surprisingly, I wasn’t freaked out. I will admit that there was a back and forth, a surreal, and breathtaking sensation that came in waves. I guess it can be frightening to imagine how it will go down. I caught myself thinking, “Will it be painful?”, “Will I be panicked?”. But no matter what thoughts you have, you can’t stop it. It is going to happen and there is nothing you can do to stop it! When I was 16, I read a book called, “No One Here Gets Out Alive” (Biography of the Lizard King), and truer words have never been spoken. But a strange thing happened when I woke up this morning. I rolled over, kissed Sonja, I told her I loved her, and got up to go get us some Starbucks. A strange peace washed over me and I thought, “How unbelievably fortunate I am to have this opportunity!” To leave this world and the people I care about, on my own terms, or close to it. But then I realized, this is not just an opportunity, but a responsibility. A responsibility to the Cancer Community, to my family, my friends, to all of you fine people reading this blog! I have a chance to make a difference in this world, to leave a positive mark on humanity in a world where we desperately need some positivity. If you are given that rare and unique opportunity…seize it! It was one of the best feelings I have ever felt. It was like all of the really unneccessary minutae of my day just became unimportant, and I was left withall of the “good stuff” to focus on. I don’t know exactly what that is going to look like yet, but sit tight and I will think of something.

20210417 Ammendment to the 20210409 Cancer Treatment Update:

This post is going to be way off of the original format I usually use, so please, bear with me. I have had another appointment with the Oncologist on the 14th to discuss my current situation. We have decided to stop this round of chemotherapy because it is just not working. The cancer is advancing on all fronts. This is very typical for carcinoid tumors and probably most cancers. As time progresses, so does the cancer. The existing tumors have grown as well as new tumors in the spine and bone. This would explain the increase in symptoms, pain, and my overall feeling. I told Sonja a few months ago, something was changing in my body. I could physically and mentally feel it. It is just astounding how the body fights disease and how we can know and understand our own bodies. The good news is that I have tentatively been accepted to a clinical trial. To a lot of people, a clinical trial means your options are narrowing, and they are, but it also means there is a path forward with new medications we have not tried yet. There is hope. There is always hope. I hope the symptoms go away. I hope they find a cure for this disease. “Hope is a good thing, maybe the best of things, and no good thing ever dies.” Andy Dufresne. This is one of my favorite quotes. This is not the first time I have posted this quote, and I have no doubt, it won’t be the last. If you have been following my updates since the beginning, you know that this whole website started due to a clinical trial. I had been on the fence about posting something so personal, and to be quite honest, a little frightening and stressful. But with the encouragement from Sonja, Beth Green, and several of you, I made that first post and I was floored at the number of positive responses. It was truly humbling and very emotionally charged.

20210421 2nd Ammendment to the 20210409 Cancer Treatment Update:

The amendments are coming quicker than the doctor appointments right now, but this is for good reason. There are family members that I was not able to get a hold of about the life expectancy issue we received on April ninth, and I absolutely had to speak with them before I updated my blog. I just could not have posted this without them hearing it from me first. I now feel much more comfortable posting this without feeling like I had slighted someone very close to me. Now that I have informed everyone, I want to make sure this doesn’t sound like the doctors have given me a timeline, and I am accepting it as law and laying down without a fight. Anyone who knows me at all knows that will just not be the case. Nothing changes in the way that I will approach this new information and new scans. The fact is, we knew this was coming. I am surprised, looking back, that it did not come sooner. That is great because along with the dedicated and ridiculously talented medical staff I have had the pleasure of getting to know and trusting with my healthcare, I have extended this journey longer than most docs would have given me back in 2008. It is so true that your mental state and a positive attitude go a long way in determining how things will turn out for you. I believe this, and so should you. Yes, there comes a time when your body just says, “No more.”, and things begin to shut down. And maybe part of that is because you get mentally tired and can’t keep going. I am not arrogant enough to say this way is right and if you want to keep living, you have to do things this way. The fact is I don’t know. None of us do. We get up to face each day, and we do the best we can with what we have, and really, that is all anyone can ask from us. Do the best you can. So that is what I will do, the best I can, and hopefully, I can inspire or educate someone else so they can live a while longer. I mean, that is what this blog is all about. That is what the clinical trial updates have always been about. Helping someone else that might be in the same situation to get every last ounce of life we can with what we have. I’m sure I will have some really great days ahead of me, and I’m sure I will have some really bad ones too, but if I can Just Keep Moving on those really bad days, it will make those really good days that much better.

I have some additions to the website I want to have incorporated by the beginning of next week as well as some twists to some old ideas that are necessary and should be pretty cool. My next appointment with the Oncologist is next Wednesday, April 28, 2021. Next week should have been a week of testing and getting baseline numbers for the start of the clinical trial on May 03, 2021, but I just found out I got booted from the clinical trial because the tumor I have is not the right kind for the study drug. I refrain from going any further at this time because I need to do a little more research and speak with the Oncologist before I try to explain how and why I am not eligible for this particular trial. In the meantime, I will begin on another form of chemotherapy while we search for another clinical trial. When I explain the how and why for my acceptance or rejection to this clinical trial, I will use it as a springboard to how the clinical trials work. I may have to do a couple of interviews with the doctors so I know what I am talking about, or at least appear to know what I am talking about.

So until next time, take care and Just Keep Moving!

KG