It has been a while since I posted. I hope that you all had a nice Thanksgiving and are enjoying whatever holiday season that you celebrate / observe during this bustling, holiday season. Always good to share some good news, so I am excited to share that we’re expecting our 2nd granddaughter in May. Babies are wonderful and I love the excitement and anticipation that will accompany us welcoming a new member to our family.
The road has been a bit bumpier for me the last month. I was supposed to have my 2nd cycle on the Tuesday after Thanksgiving. My blood counts were too low, so that treatment was delayed until the following week. That was a gift. I was feeling really tired and worn down and the extra time gave me a smoother runway for my second treatment. In addition to waiting for the 2nd treatment, my dosage was reduced in the 2nd cycle. The combination of the extra time and the reduced dose definitely made a huge difference in the way I have felt during this 2nd cycle.
Felice and I just returned from Houston. We went to Houston primarily to have a biopsy to do some genomic testing, looking for some mutations that might exist and may open doors to immunotherapy options. The best thing about the biopsy is the fentanyl (think poppy fields). They aren’t particularly aggressive about how much they give you. I was alert enough after the first dose that when they asked if I could feel the meds, I said ‘I definitely feel something, but I spoke clear enough and quick enough that he released some more. Wasn’t able to even ask for another release after the 2nd one :-). The worst thing about a biopsy is having to lay still for 3 hours afterward, especially when you’re in the middle of bowel uncertainty :-). Of course, they were quick to tell me that if I had issues that they would assist in facilitating – i.e. helping me with a bed pan. Quick motivator to lay still and try and nap! They did harvest plenty of good tissue. A good portion of that tissue will be used to look for those mutations – I call them gargoyles (more Wizard of Oz references). If we can find some immunotherapy drugs that will kill the gargoyles, that would be really awesome. I’m not banking on it, but I’m definitely hoping and praying and clicking my heals together in hope that they find some gargoyles that they can sprinkle some pixie dust on and put out of their misery. The balance of the tissue is going straight into research. They’ll grow my tumors from the tissue, eventually place those tumors in some mice that ended up in the wrong place, and then further attempt to try various treatment therapies on those mice to see what works. It’s a lengthy process, as this is brand new research at MD with regards to the cholangiocarcinoma disease. Cancer research chases dollars. What do you pursue – the 120,000 cases of breast cancer that are diagnosed each year (using numbers that haven’t been substantiated) or the 5,000 cases of Cholangiocarcinoma. Pharma generally is going to choose the larger fish. Anyway, if the research element of this biopsy doesn’t help me directly, it might help some other poor soul that will be saddled with this disease. Got to pay it forward!
I also saw Dr. Wolff for a quick check up. The shortness of breath that I’ve been experiencing, coupled with a higher heart rate than normal had created concerns that I might have a blood clots in my lungs. They started me on blood thinners as a precaution and I had scans first thing this yesterday. It’s not uncommon with my depressed immune system, and my cancer to have this happen. The scan came back negative, so there are no signs of pulmonary embolisms. I was actually kind of hoping I had some small clots. I know that sounds crazy – my kids have been on me about ‘hoping to have clots’. Fact is that, while dangerous left untreated, the clots they anticipated that I might have would have been quite treatable. The absence of the clots leads to the fact that this is almost certainly the evil work of chemo side effects and an extension of the fatigue that I am experiencing and I expect that I will continue to experience the shortness of breath and general fatigue, which has an unpredictable onset and requires naps at times that are often inconvenient. Don’t get me wrong, I’m not complaining. I have not had the terrible nausea and vomiting that have been all but promised side effects, and the other side effects are less pronounced than the fatigue. In all other regards, I am handling the chemo pretty well. Felice is definitely relieved that I don’t have a clot. My treatment for the clots was going to be twice a day abdominal injections that she was going to be doing. She did great on today’s injection, which was prior to the scan, but 30 days, twice a day probably would have become a less than desirable task for both of us.
My counts are stable and my overall blood work looks good. My primary marker, which has always been elevated since my diagnosis is in the normal range now, which is the good news that we’re going to hang onto here. We are planning a last minute family getaway after this round and look forward to being with the whole family for a few days. The current plan is that I’ll have two more treatments – the first Monday and the next likely on New Years Eve day. Then we’ll head back to Houston for scans the 2nd week of January to get the read on how this protocol is working.
As I mentioned, aside from the fatigue and the shortness of breath, I’m doing pretty well. yesterday in fact, was probably the best day that I’ve had in months. Dr. Wolff mocked me when I told him that I feel well. “Oh, not being able to breath after a short walk is doing well?”. I said, “Doc, if this is killing the bad guys, I’ll manage it.” I do get low grade fevers somewhat regularly, which brings on incredible chills, but that’s manageable too. The oversight and management of my bowels with these drugs is a constant challenge. I’ve made a couple bad food choices that end up disrupting my world for a couple days. It’s difficult because 99% of the time, I have zero appetite. I can tell you the Chemo diet works! There are lots of people gravitating towards the Keto diet, but no question the Chemo diet is very effective :-). Of course, Felice is constantly trying to find something that I will eat. It’s really frustrating. People ask me all the time, let’s have lunch, what sounds good? What would you like me to bring you? The answer is a frustrating one. Nothing sounds good, I can’t predict what I will be willing to eat, or if I’m willing to eat. I don’t expect people to understand, don’t want anybody to have to be in a position to understand. It is a side effect that we have to manage through. When we go out, sometimes I look at a menu that I’ve always been excited about and can’t find anything that remotely sounds edible. I order something so I don’t make other’s feel uncomfortable, and almost always end up eating – it’s the strangest thing. As I mentioned, I feel so fortunate to not yet have experienced the serious nausea and vomiting that is known to be one of the most prevalent side effects that everything else seems manageable. I have no significant pain. When I’m not napping, I generally feel really good, and i feel good when napping too! I can’t tell you how badly I want for this protocol to work. Of course, anybody with cancer wants their treatment to work. In the meantime, I just try to figure out ways to make today matter. My granddaughter, Sid is the best remedy going. She makes everything feel just a little better on even the most trying of days. Our family getaway will definitely provide the opportunity to spend some quality time with all, win some important backgammon matches and hopefully make some fun memories along the way.
I want to give a brief update on my friend Megan. She continues to get a bit stronger every day. It’s a slow process, but every day that she gets just a little stronger is allowing her to make her days count and that’s what she is all about. They’ll be visiting their favorite get away and spending a lot of great family time over the holidays. She continues to be a source of tremendous inspiration – so happy that she is showing what a true bad ass is! She defines what being a badass warrior is all about. She takes setbacks and makes them challenges to overcome. Rocky sets the bar for what it means to be a committed, loving, dedicated care provider. They provide Felice and I a great vision of what is possible! So happy to see them in a better place and enjoying moments each day! Please keep them in your prayers!
Have no doubt, while I am airing some of my gripes, I remain strong and confident that I will catch a break, that something will work, and may even be working now. As I’ve mentioned before, the effects of the treatments make it more difficult to see through to a brighter tomorrow, but every day I force myself to think of what a brighter tomorrow will feel like – can’t wait to get there. I also know all too well know that the brighter tomorrow I seek is a winding path with a lot of detours along the way. It has far more twists and turns than the yellow brick road that I would prefer to walking on. We continue on, side by side with Dorothy (Felice) my very own Scarecrow, lion, tin man and our very own granddog serving as Toto along with a couple other sidekicks, and the merry group of followers (all of you) helping us to maneuver our way to Oz.
Before I sign off, I can’t help myself but bring up the recent social media controversy over ‘Baby it’s cold outside’. For those of you that are unfamiliar with the situation, there is a strong social media movement as to whether ‘Baby it’s cold outside is a ‘date rape’ song. I’m going to go away from the typical content of my blog by addressing this topic, if that song gets taken off the air because of the innuendo of ‘what’s in this drink’ being framed as a date rape metaphor, what other songs from the 60’s. 70’s and 80’s about drugs, sex, etc., are heading towards being banned from our airwaves? If you can’t recall the song – here is a link to the Dean Martin rendition, which I believe he made famous in the late 50’s.
Deanna Martin (Dean Martin’s Daughter) is being pressured to stop performing the song. She is refusing. One radio station in Arizona reportedly stopped playing it after receiving just one complaint. Other radio stations are polling listeners and removing it from the airwaves. HELP, I NEED SOMEBODY, actually, we all need everybody to join me to get fed up about this social media bullying crap.
When ranting about this at my poker game last night, Al Brown referenced ‘I saw her standing there’ written by Sir Paul McCartney and John Lennon – ‘She was just 17, and you know what I mean’. What innuendo’s are in this song? How many of you can go to the lyrics of many of our favorites from Classic Rock, Blues, or a variety of genres and find songs that feature far more intentional inappropriate lyrics than ‘Baby it’s Cold Outside’. I believe there are people that will be offended by my insensitivity to the potential date rape implications. Sorry, I really try to be objective and look through the lens from the other perspective and just can’t see a reasoned interpretation being applied here. I’m mortified that a radio station would actually respond to 1 complaint, if that is really true. Could we possibly be approaching a societal tipping point on where we draw a line on social media attacks?
For those of you that open the blog to get inspired about cancer fighting, forgive my digression. It is my blog, so I reserve the right to go off topic, and of course, you reserve the right to not want to read my rant :-). Fair trade off! I have more to share on topics aside from my disease, although my disease is what typically inspires me to write. I have avoided creating a stage of debate on topics. This topic, fueled by other recent social bullying tactics caused me to want to air it out!
I mentioned that I was at my regular poker game last night. This game started with a group of guys that have been playing together since they were teens. I joined the game about 20 years ago and I was the youngest addition to the group at the time. It is a friendly game, yet extremely competitive game with stakes that some might claim to be on the high side. The game rotates each time to a different host house and the food and beverages are as much a part of the evening as the cards. The banter is great. I laugh so much at these games that I hate to ever miss them. Unfortunately, scheduling over the last year has caused me to miss more of them than typical. We have 12 players and put a meeting schedule out and the first 8 or 9 players to commit get a seat at the table. Getting 12 men to respond to a meeting request inside 12 hours (sometimes less) tells you how much the guys enjoy the camaraderie. Make no mistake, these guys all want to win, but we have a ton of fun in that pursuit. I have received so much support from this group. One of the long time players was the first to recognize that I wasn’t looking ‘right’ prior to my diagnosis. At the time, his comments elevated the concern I had. I was already seeing my docs about some GI Issues I was experiencing. His inquiries about my health were alarming, but on target. Another member of the group, was able to get me on a colonscopy schedule in less than a half hour for the next day, when my doc was going to need a week or more for scheduling. Another member of the group tried to accelerate my getting into see specialists. Others showed their support in different ways, but each member of this group has shown a level of care and concern that is unusual for ‘men’ to demonstrate. More commonly though, its guys giving each other a bunch of crap about anything that they can latch onto. It’s wonderful to see the other side from these guys.
So I don’t know when I’ll be back in touch – until then enjoy the moment. As always, I appreciate the text messages, the emails, the phone calls, the inspiration and strength that you bring to myself and my family. The acts of kindness that so many of you have bestowed upon us have taught us how to be there for others in a different way when people find themselves in a time of need. I’m going to try to relish the moments at an entirely different level. If the holidays pass before I post again – I hope you make some memories. I hope to be back in touch prior to the New Year, but if not, I can’t wait to see what 2019 brings and I wish you all a healthy, happy and memory filled 2019! The memory that we make today can’t be taken away! So worry less about finding the perfect gift and focus more on making the special moment. Love the ones you’re with – (oh my, what’s that really mean?)
Thanks for being a part of my journey and part of my life. You all are part of my community. You bring me inspiration, you give me hope, you share your prayers, you share your love and you open your hearts to myself and my family. God Bless all of you!
Love to all! Mike. #ShaneStrong #Cancersucks #meganisabadass #babyitscoldoutside