T Cell Infusion. Day 0!

Today is the day I have been waiting for for years. Through all of the delays and the complications, we made it to today. Getting to this day has been a battle that has raged for years. And in the end, it was an anticlimactic 2 hour infusion of some T-cells that only leads to more waiting, more questions, but most importantly more time. The cells are my Trojan Horse. Designed to identify my tumor for my immune system. The picture below shows a simplified look at the cellular level of how the T-Cell finds the cancer cell based on the tumor specific antigen it expresses. Now, for the next week or two, we will look for side effects from the transfusion, mainly cytokine release syndrome. This is basically a large immune response that can cause fevers, flu like symptoms, hypotension, and a host of other things that vary from patient to patient. These side effect are normal, but can vary in severity.

So today is a day to celebrate because I received a treatment that did not exist in April of 2008 when I was diagnosed. But today is also a day to reload for the next fight, because I will not rest until there is no fight left in me. And while I am optimistic that this treatment will help me, it may not be the cure. So if it is not I will find my next move to stay one step ahead.

From a patient perspective going through this clinical trial, I think it is important for me to say the I have never felt like a lab rat. I think the common misconception about clinical trials is that there is no goal to really treat you, but just to collect data from you weather you live or die. This could not be further from the truth. Lets break that thought process down. First, it takes an immense amount of work just to come up with a study objective and then to design said study so that it is approved by the IRB ( the board that reviews the study for ethics and safety). This does not even take into account finding the funding and staff needed to implement your study. Also, clinical trials are very selective about who they admit because they want their study to succeed, AKA you the participant have good outcomes compared to standard treatment. All of this is common sense now that you read it, but the stigma of clinical trials is alive and well. In my experience, I have felt no different as a patient going through this treatment vs. an established treatment. If anything, there is more positivity and excitement around me because everyone wants to see this new therapy work!

A final though for today:

If there is one thing I have learned in this process it is to never quit. Rage on and stay alive until the next thing comes along. Be smart and trust your gut. I have learned as much as possible related to my disease so that I can make educated decisions about my own life. While I know the doctors that treat me have a vast amount of knowledge, they do not know everything. I have never met a doctor who didn't want me to survive, but I never met a doctor who wanted me to survive as much as I did. I have made decisions that went against doctors opinions and I have pushed for treatment I was first told no to. Not because I disrespect doctors, but because I have the right to be an educated decision maker over my own life. That is how, with the help of brilliant doctors, nurses, and researchers I have survived twice as long as I should have at this point. That is why I have a wife and daughter to fight for; two things I was never guaranteed. For any nurses, doctors, or future healthcare workers reading this, please consider these words. Sometimes a patient may seem to challenge everything you say. Before getting upset and writhing that patient off as non compliant, take the extra time to find out what he/she knows and believes about their treatment. Then take the time to educate them properly so that they can be a contributing voice. Now I am a nurse who knows that there are some patients out there who will never get out of their own way, and don't care what we have to say as professionals. But for many, the roadblock my just be education and empowering the patient to have a voice in their own fight. People have asked me repeatedly here, are you glad you are a nurse? Are you glad you have that background knowledge? And I always say of course I am! Because I can contribute to my own treatment. We should feel bad that a majority of our patients are not healthcare literate and therefore handicapped in the process from day 1! That frustration and lack of knowledge breeds anger and conflict. Make it part of your job to teach and navigate from day 1 with your patients. If more patients are healthcare literate, we might just start having more people live a little longer and more willing to participate in clinical trials. So today is a day to celebrate because I received a treatment that did not exist in April of 2008 when I was diagnosed. But today is also a day to reload for the next fight, because I will not rest until there is no fight left in me. And while I am optimistic that this treatment will help me, it may not be the cure. So if it is not I will find my next move (which I may have already found), to stay one step ahead.