It’s been a year now since we learned that I had a mass on my liver. At this time last year, my formal diagnosis still was pending, but we knew I had a serious challenge. We’ve been through a lot of ups and downs. We’ve been through disappointment, despair, denial, fear and a hosts of other emotions in confronting my disease. We’ve had so many people embrace us and our situation with such amazing support, wonderful acts of kindness, giving us faith that humanity and compassion still exist! Those of you that still take the time to email, text, call, attempt to reach out to get together with Felice or I – you all make every day a little bit better for us.
Cycle 6 went pretty well. Each cycle presents slightly different nuances that we need to learn how to manage, but I am generally pleased with the way that I am handling this protocol thus far. I felt spectacular for the 2nd week of the cycle and really made the most of those feel good days.
If you’ve been following, you notice that I have changed the format a little. There are so many personal moments that highlight the fact that I am able to be active and live life while going through this journey. I want to share some of those moments, but don’t necessarily want to make them the central theme of what I am writing.
Every day, every treatment cycle slightly alters my perspective on living with this disease. Right now, generally I feel really good. I’m almost to the mid point of cycle 7, and feel a little ‘yuck’ today, but no room for complaints. I have far more good days than bad. In fact, I have very few days that I really refer to as ‘bad’. I hesitate to get too excited about how good I feel. It’s a great sign that I feel so good, that my liver enzymes and all of my critical blood levels are normal or near normal, and that I am handling the protocol well. All of these things are positive indicators, but these positive indicators can change quickly. I’ve learned that I just need to enjoy the good days and as you’ll see in the new ‘Quick Hits Gallery’, I try to take advantage of the good days.
There are a lot of data points that my oncologists use to determine how I’m doing.
#1 – How do I look? How’s my skin look, do I appear ‘healthy’. The consensus answer as of last several weeks is that I’m looking good.
#2 – How do I feel? Am I experiencing abdominal discomfort? Do I have discomfort in my liver or any other aches and pains? I’m getting really good at listening to my body for pain. I have not had any pain for at least a couple of months, aside from the aches that chemo can introduce for a couple of days. No pain – pretty encouraging!
#3 – How am I sleeping? I sleep really well – aided by CBD oil, which I am a huge fan of.
#4 – What about those bowels? I continue to improve the management of my GI tract and that is making a huge difference in how I feel!
#5 – How am I managing side effects? I continue to tolerate the other side effects really well. Fatigue is unavoidable, so I try to do the best I can to anticipate what days I’m likely to experience fatigue and make sure not to make any commitments for those days.
#6 – How are the labs? Watching the red and white cell counts before each treatment tells the story of toxicity levels. I take Neulasta with each cycle to help keep my white cell counts strong. They watch the red cells and the platelets closely. I’ve had 2 blood infusions so far and those bolster the red cells. Platelets have to reproduce naturally. With the exception of delaying cycle 2, I haven’t yet run into a delay of receiving treatment due to counts but that possibility always exists. As I referenced above, my other labs have been steady and stable.
#7 – How are my cancer markers? They don’t run the markers every cycle, in fact, they typically only run the markers when I do a full work up at MDA. We bench marked my markers here, because not every lab has the same exact results. If I were experiencing issues with items 1-6 above, they would likely go ahead and run my markers. Otherwise, we wait. Last time I had my primary marker taken, it was in the normal range.
#8 – The all important scans. This is where the rubber meets the road. The scans are the story. They show the big picture, the trends on how tumors are responding to treatment. They show progression, they show new activity, they show shrinkage. The scans are the single event that cause great anxiety to any cancer patient.
Currently, I am scoring really well on these various health check factors, but I have another month before I get to Houston for scans. It is the toughest mental challenge I am currently dealing with. I felt really good after cycle 4 of the protocol that I was going through last spring. I was absolutely certain that I was responding well to that protocol. The fact was that my liver mass was responding to the protocol, but there was metastatic activity appeared to be on the rise. The Doctor felt that we needed to move away from that protocol. So I’ve had to adjust to the fact that I can’t assume that this protocol is continuing to work – it’s a scan to scan process. That won’t go away either. All of the patients that I have talked with about this – even if they have been stable or NED (No Evidence of Disease) experience varying levels of ‘ScanXiety’.
I was disappointed to recently learn that the tissue that was biopsied from my Liver in December did not have enough RNA in the specimens to run the genomic tests, so I am no closer to finding out if I have actionable genomic mutations that might be treatable with Immunotherapy. It’s a frustration, but the team is going to discuss alternatives to conducting the genomic profiling when I go for scans next month. I don’t know enough about RNA to really dive into the details. What I do know is that there are a lot of immunotherapy therapies emerging, both currently in use and a pipeline of trials involving various immunotherapy options.
Meanwhile, in Baltimore, Megan earned a new moniker this week – Megan is now a ‘Bionic Bad Ass’! She received a new hip and is looking forward to recovering from that surgery and returning to more normal activity levels. Her strength and attitude are incredible. I wish her a speedy recovery and continued stable reports and general wellness! Please keep Megan in your prayers.
The last year has certainly been a year that changed our lives forever. Felice and I were talking the other day. Neither of us had any expectation last year at this time that I would feel as good as I do at this time. I feel so fortunate to be able to experience ‘feeling good’. I work really hard to maintain a good attitude, realizing that I can only control the things that I can control. Still, not a day goes by where I don’t want more. I desperately want to be here to watch my family continue to grow and thrive. I want to share in their lives. I want to grow old with Felice. I suppose these are the things that we all want. That’s what I visualize, that’s what I fight for, that’s what I dream about. A year ago, my view was less hopeful, we weren’t given much hope when diagnosed. Today I have hope. Today I still dream of a future. Today I believe that anything is possible. My strength, my conviction of purpose, my resolve is fueled in part from all of the support that you all provide.
I can’t express often enough how much Felice and I appreciate you being part of our lives.
Thanks to all – I’ll be back in touch. In the meantime, Be Well!
Love, Mike #cancersucks. #ShaneStrong. #BionicBadAss #curecc