With three major surgeries, five post-surgical rounds of chemotherapy, and one PET/CT scan completed so far this year, we have learned that the only remaining cancer has set up shop in my right adrenal gland. We are astonished at just how far we have come and how little disease is still present; however, the fact that some of Trudy’s offspring still remains means that my body has developed a tolerance to the chemo or the cancer has mutated enough where the current drugs have stopped being effective. There are a few other chemo drugs that we haven’t tried yet, so it is time to mix up a new cocktail and begin another three months of treatment.
Extremely optimist that this will be the final battle before being able to use the word “remission” and celebrate being a cancer survivor, our hopes are at an all time high. Of course starting a new treatment plan means that there will be new side effects and challenges to deal with. Given what I have already experienced, how much different or worse could they be compared to the previous rounds? One infusion down and things were happening as expected. After just four days, the chemo has let go of the choke-hold it had on me and I was back in the gym. Every set was ten times harder than it should have been and workouts were short and anything but intense. Not quite two weeks into the new plan and my hair was falling out in chunks. My doctor told me this might happen, but he didn’t mention the crazy scalp pain. I could barely dry my head after a shower and the pain would often times wake me up in the night as I shifted in my sleep. The first time looking in the mirror as a bald man was a bit strange and I wasn’t quite sure what to make of my new look, but it only took a day or two to get used to it and I actually started to like it a bit.
Unfortunately, saving a few dollars and not having to get a haircut every other week was the only positive thing this chemo had going for it. Somewhere around the third week I started developing these mouth sores. I am not talking about the little tiny canker sores that you may have experienced at some point. These things were nearly dime-sized mouth ulcers that made eating, drinking, and brushing nearly impossible. The fun didn’t stop there. Next up was the joint pain and freakishly-weird swelling. It started out as just an inconvenience, but quickly started to intensify. It wasn’t long before I was incapable of doing anything. Simple activities like lifting a glass to my mouth to drink or even pushing the buttons on a remote almost became too much to handle. Although I never actually did, I considered going to the bathroom in my pants several times because standing up and walking to the bathroom was just far too painful. I know it sounds funny that a 33 year old man would be having this inner dialogue, but that was my reality. It felt like every bone in my body had been shattered as if I was run over by a steam roller.
Chemo is rough and making any real gains is difficult, but I wouldn’t say it was two steps forward and three steps back. It was more like nine steps forward and 10 steps back. Loosing 10% of your strength and energy isn’t the end of the world and you may not even notice that it is gone at first, but loosing 10% every other week is quite different. By the time I got to that fifth cycle and my energy levels had been cut in half, I really started to feel the cumulative effect. All-in-all I have had nine consecutive cycles of treatment spanning nearly 5 months, which led to something called chemo toxicity. My body was being completely dominated by the repetitive injections of poison and wasn’t recovering in between treatments. At first it would take me about three or four days to start feeling decent again after treatments, but with each successive infusion it was taking longer and longer until I just wasn’t able to bounce back at all before the next round.
I would love to tell you that it was all worth it and the cancer was gone, but I don’t want to lie to you. The PET/CT scan results are back and we are shocked. I wasn’t fully expecting the doctor to tell me that the cancer was completely gone, but I certainly wasn’t prepared to hear what he had to say. Not only did the tumor in the adrenal gland increase significantly in size, but there were now two lesions in the liver and another five in my lungs. To go through all of that just to learn that the chemo was completely ineffective was devastating. At this point we believe we have exhausted all FDA approved treatments and finding a clinical trial was our only option.
Way back in the beginning when the original biopsy was performed, there was evidence that I had a mutation within my cancer cells, but we didn’t really do anything with that information because things were progressing as good as they could those first couple of months. Now that things are heading in the wrong direction, it is time to re-examine those original findings. If these current tumors are indeed from Trudy, and if I still have that mutation, there might actually be one more chemo possibility. In order to confirm this, another biopsy must be completed. As it turns out, obtaining the sample wasn’t going to be as simple as anticipated. With the needle, they needed to take a pathway through my lung to get to the adrenal gland. I was originally supposed to be under anesthesia, but the doctors needed me to be completely coherent so that I could control my breathing as they fed this sword through my lung. Remaining completely still and holding your breath while this little metal hand pinches off chunks of your organs is not a pleasurable experience. The procedure took about an hour and within a few days it was confirmed that I did have that special mutation.
Before jumping back into another series of chemotherapy treatments, we wanted to pick the brain of one of the oncologist at MD Anderson. The wifey and I are off to Texas. Our local oncologist has been amazing through this entire process and we trust him wholeheartedly; however, another brilliant mind couldn’t hurt. We were facing a few different options: the new chemo, a clinical trial, and potentially a procedure called RFA if things were stable. We had no idea which direction to head and at this point, the wrong decision could be catastrophic. We were so hopeful that this new doctor would feel strongly one way or another and would be able to confidently give us our new plan of attack. The consultation went on for some time and the doctor was quite thorough. She ordered a whole new set of scans and labs to be done after our meeting with the assumption that nothing had changed since the previous scan just a few weeks earlier. It seems as if we are going to get exactly what we were hoping for, direction. We left Texas feeling pretty good about the course of treatment and were so relieved to have gotten the news we did. Just a few days later, though, we received a call from Texas and everything had changed. You guessed it! This was not good news at all. As it turns out, within those three weeks between scans, my lesions had nearly doubled in size and the cancer was acting quite aggressively. A new chemo regime was the only option at this point. We are just hoping that it can stop the rapid growth of the cancer and prolong life for awhile. My cancer is now incurable. Being told that it is only a matter of time and that chemo and all its wonderful effects every other week is the very best it is ever going to be for me wasn’t exactly what we wanted to hear, but we did ask for brutal honesty.
I know that our Lord has chosen me for this journey for a very important reason. I am still a little uncertain as what it is, but that’s where my faith comes in as well as knowing I have been given this opportunity to touch the lives of others and hopefully inspire them is amazing. It’s not always easy to find the good in bad situations, but if you look hard enough, I promise you it’s there.
don’t give up…DON’T EVER GIVE UP!
[This blog post dates back to the post-surgery events occurring in February 2011 through our Texas MD Anderson visit in August 2011. My hope is for the next post to bring us to the present time. Thank you always to those who continue to pray and support me on this journey.]