So, for the first time in all the years I can remember, I had a flat out temper tantrum in the car on the way to a doctor appointment. I must first apologize to the best person I have ever known; So sorry Sonja, the frustration had just hit the limit. I love you with every ounce of my being.
That said, My appointment today was with a new Oncologist at CU Anschutz. Over the last few months, I have been doing a chemo treatment that, in my opinion, is not working anymore. I know now when things are going sideways. I feel different when something is happening. The problem is the lack of urgency. I do not question my oncologist’s knowledge or professional status, but it took them three weeks to give me the results from my latest imaging. The PA called me on the way to my appointment with CU Anschutz and told me we will continue on our current path of treatment, new lesions in the spine, but small and nothing to worry about. Then she proceeded to tell me they are in the L1, L4, L5, S1,S2 , but they are small and we don’t know when they originated. My thought was, “What?” I want to make this clear, if you are the person that this shit is growing in, it is a big deal. In the last year, I have had two new tumors in my L2/L3 and L8, and now several new lesions! This is cancer. This is no joke and time is all I have. So when I get to the new Oncologist, we go through the report and the first thing that jumps out from the radiologist report is, “This new growth is worrisome.”. I just cannot fathom why they would tell me not to worry and continue on a path that has clearly no effect anymore. I understand my situation very clearly; I am not looking for a cure at this point; I am just trying to stick around until the research catches up with the disease. I understand my station in life and my battle with this disease. Just tell me what is your medical opinion. No emotion, no sorry, just tell me. Give me the information I need to sit down with Sonja, and make the best decision with the options available. Period.
So, back to the update; I have a few options, but they are getting fewer and fewer. I will definitely switch oncologists and move to CU Anschutz. They feel more like what I had at IU Simon Cancer Center. I miss Dr. Patrick Loehrer; if you are reading, I really miss your demeanor, conversation, and professionalism. But I digress. It looks like my best option now is to start a known chemotherapy regimen that is a little more traditional. I am going to lose my hair, I am going to be very sick, I am going to be tired and my blood counts are going to go way down. I have the option to do a clinical trial, but I would have to travel to Arizona every three weeks. I am not willing to risk exposure to Covid-19 at this time. So the Chemo/Immunotherapy will buy me some time and hopefully the clinical trials on hold because of the pandemic will open back up. I will wait for other clinical trial options before I make that decision, but I am almost sure of what I need at this point.
I guess my takeaway from this is; advocate for yourself. I am sure I have posted about this in past posts, but it is my #1 rule and the first thing you should do. Research your situation, find support. If you don’t have support…call me (317) 691-2760 or DM me. I will give or find support for you. I mean this. You are not on an Island. Time is of the essence.
The song I posted today on Facebook is Soundgarden’s fantastic rendition of “Fell on Black Days”. It has been the best song I have ever known to help me through this process. Don’t take this the wrong way, and I already know Chris Cornell’s explanation of this song is not about anything that happened in life. No tragedy, no cancer, just nothing. You just fell on black days. Its life. Its healing to me. Today has been rough on me and more importantly, on America. I hope all find peace and a true solution to our issues now.
Thanks for visiting and supporting me through this journey. Life is good. People are good. Let’s let that sink in for a while.
Just Keep Moving. Just keep moving…
KG