‘Karp’isms & Clinical Trials

 

As part of my journey and literary process, I keep a journal with me to write down all the necessary mumbo jumbo of my treatments, results, expectations and general thoughts.  Every once in a while, one of my doctors will say something so sweet or so funny, that I have to write it down to share with you.  I actually think I could compile a list of these quotes and make a funny little bathroom reading book with one quote per page.  But I can barely get through this one, so that project will have to wait for another time ;) And, does anyone actually read in the bathroom?

I first met with Dr. Karp, my clinical trial doctor (hence the Karpisms), in May 2022 via a telemedicine appointment.  This was a ‘get to know you’ appointment, and I know I was just as happy to get to know him as he was I.  He was so kind, with a Boston accent and white hair, and a wonderful demeanor that immediately put me at ease. We talked about my past history, which he had thoroughly reviewed prior to the call, and he explained that there were gene fragments in the blood which were driving mutation markers.  As that point the Karpisms began as he called them ‘cellular weeds’ and compared them to Satan attacking.  I immediately knew that he was a man of faith, because who else talks about Satan’s attacks?!  In immediate response to his comment, I replied, “Well I have a faith and a God that CAN and WILL ultimately defeat Satan.”  And he agreed, confirming what I already knew.

Dr. Karp told me that he had a meeting scheduled with the 10 other doctors that very next day to discuss my complicated, extensive case.  Before hanging up he said to me, “You’re amazing.” And that given my history, he wasn’t expecting me to look as good as I do (the beach background on zoom must've made me look both tan and relaxed😂)  I took that as a compliment and as a reminder of the grace and mercy I’ve been shown by the Lord.  Ephesians 1:6  To the praise of His glorious grace, with which he has blessed us in the Beloved. 

A week later I heard back from Dr. Karp regarding his discussions with the rest of the clinical trial team.  He had found an exciting new protocol (not the same one that my oncologist had called me about) which was labeled with a series of seemingly esoteric letters and numbers that included 2021 0178.  Since the numbers did little to explain, he added the terms Radioisotope and Actinium 225 (still got nothin').  And knowing that sounded like something out of Star Trek, he called it a ‘smart bomb’ to dumb it down and the Karpisms were back in action.

I won’t bore you with the actual scientific explanation of how the drugs were to work, but let me continue (as Dr. Karp did for me) with the smart bomb analogy.  And when you hear the words ‘smart bomb’ just try to imagine his Boston accent…lol.   In the simplest terms, the treatment involved two different things that worked together to blow up the cancer cells.  He called it a 'homing pigeon with a hand grenade.'  The ‘homing pigeon’ sought out the cancer and the ‘hand grenade’ (radiation molecule) that attached to the homing pigeon would explode inside the cancer.  OK, even those not trained in military action could understand that.

I was excited about the use of radiation, which sounds odd to say, but it has been the only effective treatment other than surgery in the past.  So, using a radioisotope seemed like it might be the answer I’ve been searching and praying for.  As I continued over the next couple of weeks to gather information and get schedules aligned, Dr. Karp compared that process to 'choreography' (not knowing it was an analogy that hit close to home – Molly danced her entire youth) that is different for every trial.  How many visits, how many treatments, for how long, baseline scans, bloodwork, test run, etc.  All these things put together was like 'choreographing a dance'.  And I knew that I wouldn’t be dancing with the devil… My dance card is saved for Jesus.  Psalm 149:4 Let them praise His name with dancing, making melody to him with tambourine and lyre.

It seems that the devil is a suitable analogy for cancer in general.  I asked about side effects of this new treatment and Dr. Karp said that it’s like ‘fighting the devil.  It’s a demonic problem; don’t want to be nice to it.’  That didn’t deter my desire to take the treatment, but increased my fortitude knowing they would be attacking it with great strength.  Any weakness that might come as a result was fine with me.  2 Corinthians 12:9 My grace is sufficient for you.  For my power is made perfect in weakness.

The trial itself was a Phase 1 trial, which Dr. K compared to “trying to pull a rabbit out of a hat.” (Did he know I have a rabbit?!). All these analogies seemed personalized, but he couldn’t have known that when he made the references. Maybe it was God giving him the words that He knew I could relate to.  Anyways, the trial itself had only been used on humans for a couple months, but had been wildly successful on rats with ACC.  Then this might be the one time I wouldn’t mind being compared to a rat ;) When comparing it in both efficacy and effort to my previous clinical trial (that I was on for a year during COVID), he said, “If that pill treatment was a soloist (vocal), this is like an opera.”  Somehow his words always seem to make sense, even when they don’t.

The choreography I mentioned before would take longer than I had hoped, waiting on financial clearance from insurance.  Once that finally happened a few weeks later, I was set to do a ‘test run’ that would mimic the treatment but with a low enough dose of radioisotopes that wouldn’t harm the tumors but would tell them if the medicine went where it was supposed to go (the cancer cells alone).  As I met with Dr. S (Dr. Karp was on vacation) on July 5^th to review the process and PET results, I was happy to see that he, too, had a sense of humor.  When I asked about my PET results, he simply said: “Good news is you’re getting treatment.  Bad news is you have cancer.”  I chuckled a bit at this, realizing that he wasn’t going to get into the details, because it didn’t matter at that point.  And it didn’t matter to me either.  It wasn’t like I didn’t already know ;)

I won’t bore you with too many details about the treatment test run, other than to say it was a very detailed, 4-day process of bloodwork, daily imaging after the injection (which is very time sensitive and driven 30 hours from Toronto, Canada) and transporting the results to the study sponsor in Canada, then waiting upon their conclusions.  Oh, I will tell you that I broke one of the imaging machines😂.  Well, not actually but they did have to reset the whole thing and do the 30-minute scan all over.  It is fascinating to me that they measure exactly how much of the medicine goes to the bone marrow and kidneys, so they can calculate an exact dose and number of treatments to protect those organs. 

I remember how excited I felt when I got that first injection, and truly believed that this was THE treatment that was going to cure me.  I had never felt so sure before; I knew it with every bone in my body.  As I saw the universally recognized sign (☢) on my treatment bag, I laughed to myself as I heard the song over and over in my head…Radioactive (I heard the Imagine Dragons version).  I imagined replacing the Cancer Plum Sucks shirt that I made 9 years ago upon diagnosis, with a radioactive sign and the accompanying words, “I’m Radi-o-active, radi-o-active.” That's funny, right?!

Since we were stuck in Houston for the week, we decided to go to an Astros game at Minute Maid Park.  They happened to be playing the KC Royals which was fun.  I had just gotten home from a trip to see my Aunt in Kansas City and we drove by the park on our way back to her house.  I had fun texting back and forth with her about the game.  Although now as I write this I can’t remember who won and who got the last word.  I loaded up on Astros gear at the game, which I proudly wore as they won the World Series. 

We also discovered a fun little area called East Village, which offered lots of cool bars, restaurants, breweries, giant 20-foot-tall statues of the Beatles, a plethora of funky wall art including one that said ‘Gon Be Alright!’  While the message may have been intended differently, I received it loud and clear as a sign from God for me that ‘everything’s gonna be alright!’  I decided to compile a Facebook post with all my pictures when we got back in the car and it was as if on cue, ‘Everything’s Gonna Be Alright.’ was playing.  I haven’t heard it in so long.  The timing could be nothing more than God speaking to me through the airwaves.  The excitement of earlier in the week continued and so did the assurance in my mind.  And that assurance continued when I heard it again, as we got in the car to leave my parents ranch, after the long week in Houston.  Side note: I was freaking out thinking I had lost my rx sunglasses (after already losing my rx glasses) and once again, it was like God telling me to stop freaking out and listen.  Everything was going to be alright…and I found my glasses.  You couldn’t choreograph that better.

As I patiently waited for the results to come back and a treatment plan to be formulated, I noticed a small lesion on my jaw scarline from the major reconstructive surgery I had in September of 2021 (more on that later).  Over the course of several days it looked like it might be infected, and I couldn’t bear for infection to interfere with the trial.  I was so close.  I had to go back to MDA the next week for additional scans, so I struggled with the idea of telling them or not.  In my mind I knew it was the right thing to do, so I mentioned it to the trial tech thinking he might elevate it for me if he thought necessary.  It didn’t seem like it was in his wheelhouse, which was fine with me, and I said nothing more.  I figured I had let someone know, so I was good.  I had my girlfriend Shelly B. with me, and we sought out another friend, Diane who was there with her husband who was very ill, with no clear diagnosis or treatment.  I’m glad we sought them out because Diane really needed that support that day.  Please say prayers for his complete recovery.

The following week, with still no word on when I would start the trial officially, I called the trial coordinator to ask her if a hypothetical infection would exclude me from continuing with the trial.  I didn’t want to ask, but the Cipro I had been taking (left over from a different time 😯) didn’t clear what I assumed to be infection and the guilt was getting to me.  In my mind getting on the trial, being part of the 'opera' audience, was worth a little white lie.  But guilt is funny thing.  The Holy Spirit has a way of nudging you out of it, and that’s what happened to me.  After I finally had the nerve to spill it, she asked if I’d talked to Dr. Karp (our master of analogies).  I replied with an, “Um, no…why??” , not confident of the news I assumed he was to tell me.   Huiying went on, with hesitation in her voice, to tell me that the drug company didn’t find enough uptake of the drug in my tumors to be effective.  I don’t normally cry when I get this kind of news, but this time was different.  That assurance that I had deep in the recesses of my soul was gone.  That excitement that I had in my heart was gone.  I was in shock.  And I was radioactive no more😢.

Maybe it was the infection that affected the uptake, or maybe God just needed to protect me from infection and what the combination of that and treatment might do.  I don’t know the reasons why, and I never will.  I just have to trust in His plan.  Exodus 15:12  The LORD is my strength and my song, and He has become my salvation;  this is my God, and I will praise Him, my father’s God and I will exalt Him.

When I had the opportunity to ask Dr. Karp himself why I couldn’t start the trial, he replied with one of his now expected Karpisms, saying, “It’s a lock and key situation.  If the key doesn’t fit, then it’s not going to work.”  Enough said...for now.