Since I last posted, life has been interesting, challenging and frustrating. First, I came down with what we believe was the flu. That on top of the chemo turned me into a crazy mess real quick. Worse yet though, Felice came down with it as well. Thankfully, Jordan was already heading home to visit for the weekend – he just didn’t expect to spend it as nurse. Fortunately, both Felice and I recovered in time to come down to Houston. Tuesday turned out to be quite an adventure. My blood sugar spiked, likely due to the steroids that I take to prevent allergic reaction to the scans. It required that I drink a ton of water and walk and eliminate in attempts to get the sugar levels below their minimum threshold that they could inject me with the dying agent. Finally by 2:30 p.m. (reported at 7:30 a.m.), I was able to begin the prep for my scans and wrapped up around 5:00 p.m. I had not been able to eat since the evening before, so it was straight to dinner. After dinner, one of my fellow Cholangiocarcinoma patients, Jack, dropped by our hotel for a quick visit. We met on Facebook, then at the Cholangiocarcinoma conference. He’s in town for three weeks of radiation. He knew I had a long day, and we spent some time just talking from a point of view that only those of us dealing with this crazy disease can relate to. We talked about how hard it is to adjust to a new normal, when that ‘new normal’ is so far from the normal we once knew just a short time ago. The wear and tear and the toll that it takes on our families, and how difficult it is for our caring friends and family to grasp the magnitude of what we are going through. It was a great opening of our hearts and souls to one another and came at a great time for both of us. Thank you Jack!
I met with Dr. Wolff this morning and the results are mixed. I had some continued shrinkage of the spot on my bone and the lymph node. There was some small growth of a couple of my Liver lesions and a couple new very small nodes are presenting in my left lung. The Doc said that cancer cells are a lot like kids. No two kids are exactly alike, some respond to direction and some don’t, others rebel. The current protocol has some of the tumors responding, while showing signs of rebellion with other tumors. Dr. Wolff isn’t ready to make a treatment recommendation. He held me at the hospital for a few hours and had me do some more tests. Our Chemo options are narrowing, so we’re looking at trials, possible immunotherapy trials, possible radiation, targeted therapy, no immediate firm answer. For now, I’m on hold with any further treatments.
It’s quite frustrating, unsettling and scary. Dr. Wolff says it ‘isn’t time to sweat’, but we need to find a treatment path. I’m confident that he will, but in the meantime, I have little to share. The good news is that I feel good. The one thing I know for sure, is that when you’re looking for something that has been misplaced, the place that we find it is the last place we look. I’ve lost my health and have been looking for it, I have lots of people looking for it. We’re probably going to find it in the last place we look.
I’ll be back in touch when I have more to share. In the meantime, thanks for all the continued emails and text messages.
Love Mike, #cancersucks #ShaneStrong
8 thoughts on “From Gut Punches to Gut Wrenching….”
Mike I will continue to pray for your recovery and I wish you the very best. God holds the directions to you health. I will pray that he shows the way to you and your treatment team.
You never cease to amaze me! I can only imagine how you must feel! My thoughts and prayers are the only contributions I can make!
Mike, I always look forward to reading your Blog even if you don’t have much to say. You are the best and team Shane is a force not to be taken lightly.
Hi Mike you have said it so well. So please you and Jack caught up, as you said it gives you both a chance to express yourselves at a level no t many can relate to and is so therapeutic. well done.
Mike will be adding your big link on cholangiocarcinoma.com.au site this week so that the Australian and Kiwi Warriors can benefit from your efforts as well.
look forward to your next post
Mike, I can only begin to imagine how “gut wrenching” all this is. I’m glad to know you have such great support from so many wonderful friends and family, and especially your fellow Cholangeo Warriors. I keep a list of people who I want to remember to think about each and every day. That list includes YOU and Felice, and I hope that you can feel all the “good vibes” I am sending your way. I’m adding your friend, Jack, to my list too.
Sending much love to you and all the family, Anne
Keep going Mike! You are surrounded by much love and support! #youvegotthis #shanestrong
The answer is out there and you WILL find it! Healing thoughts from Colorado…
Hi Mike, great to see you met up with my brother Jack. I’m positive Dr will find the best treatment for you, you’re at the right place. It seems like this ugly disease has lots of twists and turns…..Prayers and peace to you.