As this is the beginning of my journey, this first post will be lengthy because I need to bring you back a bit earlier than 9/8 in order to set the stage. Let me start by saying I am 49 years old (with a few months left until 50) as of this entry.
On October 10, 2022, I had been spending time with family. My Brother, sister-inlaw and nephew were out visiting from California. My Brother has had kidney stones in the past and I guess for some reason, I figured, that might never happen to me, until it did. When the family finished our activities and we started to head home, I began having pain that I would describe as cramping, in my upper left abdomen around the area of my stomach and spleen. Over the next few hours, the pain would become unbearable until I told my Fiance, “something is wrong, I need to go to the emergency room” I had also consulted my ex-wife who is a nurse and she agreed.
As a healthcare worker myself, we are some of the worst patients. I was so upset that I was going to need to insert myself into this “healthcare system”, that I know too much about, in order to get better. So, off to the emergency room I went. I made it there something in the afternoon and did not get to leave until 2 am but at that point, I had a clear diagnosis – Kidney Stones! Ugh! What?!
I was referred to a urologist that right off the bat, impressed me with her no-nonsense, direct and extremely thorough assessments and patient education. She was amazing and while I certainly did not care for what we needed to do to fix the issue, her professionalism and bedside manor was superb and I cannot ask for anything more.
One interesting note that is related now but maybe wasn’t at the time, was that on August 9th, I was also sent for my fist colonoscopy. Most men do not appreciate this procedure until they have been through it for the first time, then we all pretty much describe it as “the best sleep ever” and as long as the procedure comes back clean, you’re ok with it after that. In my case, I was totally clean and don’t have to go back for 10 years! Great!
After dealing with the kidney stone, I had a followup to make sure I was healing well. We found a second kidney stone and had to go through everything described above, again. During the second followup in July 2023, a pretty routine ultrasound identified a swollen lymph node (not associated with the kidney stone per se. I was immediately referred for a CAT scan. That CAT scan, completed a week or two after the initial ultrasound, found the same lymph node was not only still enlarged, but it had become larger than what was found on the ultrasound. You can imagine my concern and my Urologist was equally concerned but stressed that it could be many things, we need to stay calm, follow the course and track down what the true issue is. In a time of so much fake news and people making decisions from very little reliable information, I found her approach comforting as concerning as it was. She immediately referred me for a biopsy of the lymph node.
August 30 – The biopsy was a bit scary for me but in this case I was given twilight anesthesia so I really didn’t notice much. This led to the September 8th finding of the cancer.
On September 8th, I was teaching a class when my Urologist called. She was hoping to get me on the phone but I had my phone on silent. She left a message to call her back as soon as possible to review the findings of the biopsy with her. I was not alerted to the voice mail until about 5:08 pm – it was Friday. I did what I think most people would do – even though looking back, I should not have done this. Knowing her office was closed and thinking, “how can I get the information I want as quickly as possible”, I went into my “MyChart” app and looked at the pathology report. One bolded string of words stood out and thinking back, I don’t remember noticing ANYTHING else. I saw the words, “Mantel Cell Lymphoma”.
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