My father used to say, “I’m in pretty good shape for the shape I’m in”. I always thought I was in pretty good shape, maybe a little over weight but still able to keep up with my wife on a brisk walk down Las Vegas Blvd in route to our favorite casino show. Or running to the window to get that final bet in at Saratoga. Or sometimes just chasing a little white ball around the golf course. At least I thought I was in good shape, until September 2018.
I went to the bathroom that day in September and had a generous amount of rich blood in my urine. As luck would have it, I happen to have an appointment with my PCP that day. She ran a urinalysis but told me she didn’t see anything wrong and perhaps it was just the passing of a stone. I didn’t think much of it. Over the next several months, I was conscious of it, checking for blood every time I went to the bathroom. On occasion I would see traces but nothing like what I saw in September. Everything seemed fine…. until January 2019.
It was a Thursday, two days before my daughter’s baby shower. I saw a few drops of blood and had pain in my lower abdomen and lower back. I had a difficult time getting comfortable and couldn’t sleep. My wife urged me to go to afterhours care, but I told her I would be fine. I was off the next afternoon and thought I would go then if the pain persisted. Friday the pain was still there. I visited an afterhours care center and after running a few tests, they directed me to the ER at Rochester General for additional tests. RGH ran blood tests, a urinalysis, CT scan and ultrasound. I sat there for what seemed like hours before an ER doctor finally came by to talk with me. He explained the abnormalities in the bladder wall that is consistent with bladder cancer. He instructed me to see a urologist within the next 2 days and see my PCP for follow up. Wait, did I just hear him right? Did he say cancer? I didn’t want to believe what I heard. I left the hospital stunned.
The Urologist - I got in to see the Urologist right away and after a quick scoping, he confirmed the diagnosis. He recommended surgery to remove a tumor as soon as possible. The objective was to see if the tumor penetrated the bladder wall. I had the surgery on February 12th. Two days later I received a call from the Urologist. I had an aggressive form of bladder cancer that may have already spread to other parts of my body. He would take no further action until a CT and bone scan were completed, which he ordered promptly. Within a few days after the scans he confirm that the cancer had spread to my lymph nodes. He would now hand my care off to an Oncologist.
The Oncologist - My first visit was to explain the results of the scans and to talk about next steps. The bone scan was clear and my other organs seemed clear. That’s the good news. The bad news, the lymph nodes in my upper left body were enlarged. She wanted to do a needle biopsy to see if that was the same cancer as what was in my bladder. If it was, she told me that was uncurable. Treatable, but uncurable. It seemed like every test I took brought more bad news. We went ahead and scheduled the start of my chemotherapy before doing the needle biopsy, so we could get it on the calendar. The plan was 4-6 treatments if my body could handle it with a scan after the 3rd to see how effective the treatment was. The needle scan was done the week before the treatment start. Consistent with my other tests, this came back as bad news as well. The cancer in the lymph node they biopsied was the same aggressive cancer that was in my bladder. While not what I wanted to hear, we remained positive and knew that we would beat this!
The Treatment - I didn’t know what to expect with the treatment but went into it thinking it would not be good. I was told they have come a long way with the medication to stop the nausea and vomiting and was pleased to find out that was the case. While I wasn’t sick, I did feel very run down and tired. I also had a lot of trouble sleeping which just made me more tired during the day. My appetite was gone and when I did eat, I could hardly taste what I was eating. That all contributed to me losing 20lbs in 2 weeks. During one of my check-ups, I asked it that was a problem and was told it is when the person doesn’t have the weight to lose! I guess I was more over weight than I thought!
I’ve completed the 2nd treatment and just as I was told, my hair started to fall out. I decided I would shave my head now before it looked any worse. Everyone tells me I look good, but I just don’t see it that way. I’m sure I will get used to it. Other than getting more and more tired as the day goes by, I really haven’t had any other issues with the treatment. I still don’t have a good appetite and my taste buds seem like they are shot. But I am in good spirits and able to put in an honest day of work.
Speaking of work, I want to send a special shout out and thank you to my colleagues at MVP. They are wonderful, caring individuals that make me proud to be associated with them. Not only have they been very flexible in terms of me working from home, but after my first treatment, I received a very generous GrubHub gift card to help us with meals while we go through the treatments. That meant lot to me and I couldn’t help but feel how fortunate I was to work with such amazing people. People will ask me why I work so hard, especially given my condition. It’s simple. I want to help MVP and the great people I work with be successful. It’s the least I can do!
One more shout out. This is for all the people that have reached out to my wife and I and have offered their support, thoughts and prayers. Some of these people I have never met. Some are good friends. Some are former colleagues. Some are family. But all have offered to help however they can as we go through this process. I am lucky to have the support of these people and wish I could reach out to each one individually to personally thank them. I hope to do that someday. But for now, I have this website, thanks to the help of Gina Pekola, one of those amazing colleagues at MVP, to keep you updated and to thank you again.
Finally, I want to thank my amazing wife Lisa. She has been the positive inspiration through all of this. She is the one that leads the prayer for me and rallies folks around supporting me. She has pushed me to eat right, exercise and get the rest that I need. She makes me laugh and comforts me when I cry. I could not imagine going through this with out her. Thank you Lisa for everything you do!
I took on a catch phrase thanks again to several of my MVP colleagues - You Got This! With the caring, prayers and support from all of you, I can tell you.... I Got This!
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Hi all. I wanted to provide a quick update on my treatment. I was going to do this update last week but I wasn’t feeling up to it. I've now completed 4 treatment cycles with each cycle being 3 weeks. The first 2 weeks were chemo treatments and the 3rd week was a series of injections to boost my immune system. I also had a scan at the end of April. The good news is the scans showed that the cancer had shrunk significantly. In fact, in some areas it was gone completely! The treatment I was on did its job and has been killing off the cancer cells. We are all happy with those results!
The next issue was what do we do for a maintenance plan. For now, I will continue on the treatment plan I was on but with one chemo drug instead of the two I was taking. The first 2 weeks will still be the chemo treatment but the injection in the 3rd week will depend on where my red and white blood cell counts are at. The main side effect from the treatment is the lowering of my blood cell counts which results in me feeling exhausted. We’ll continue on this plan for as long as my body can take it or until something better comes along! I will have scans done in another couple of months and hopefully the result will continue to be good!
Thank you again to everyone who provided thoughts and prayers. As I’ve mentioned in the past, it is a lot easier going through this when you know you have the support of family and friends. Thanks and love to all of you!