‘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.  

This Ragdoll Wears a Crown (4/28/22)

As I sit here to write today, it’s with joy in my heart and a crown on my head.  I know you think I’m speaking metaphorically, but the fake diamonds on my head say otherwise.  I don’t typically spend my day wearing a crown (well, not most days anyways ;)).  But today in Community Bible Study we completed the end of the Book…Revelation.   And as you can imagine, this was not an easy book to study.  It required a lot of faith and a lot of discipline, at a time when I struggled with many aspects of my health.  It’s my third time reading through and studying Revelation and there are still just as many questions as answers, and that’s OK with God.  I’m not wearing this crown as a consolation prize for finishing the book, but as a reminder that He deems us worthy. 

2 Timothy 4:8 Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.

Jesus died wearing a crown of thorns, so that we might receive the crown of righteousness, glory and life that none of us deserve.  He will take a ragdoll like me and stitch me back up, even better than before putting a glorious crown on my head. 

Being the last day of our study of Revelation and the first day of our summer break, we had a luncheon (princess theme with crowns for all who chose to accept it) to celebrate and to share any personal revelations about our study of either Daniel (from earlier in the year) or Revelation which we just finished.  I sometimes hesitate to share everything I want to, for fear that someone might roll their eyes and say, “Oh, her again.”  But I know the women in my group would never react in that way and have been so incredibly supportive of my journey, so I didn’t let that stop me.

As I opened my mouth to share, I could feel the tears start to well up, recognizing not only the physical wounds from the events of the last month, but also the emotional wounds that left me with a question I was afraid to ask (Why am I afraid?).  As I began sharing, I admitted that while I’m “All In” for Christ and believe God’s word is truth, and I know the beginning and the end and I know that eternity with Him will be better than anything we can imagine on earth, I struggled once again with fear before my last surgery.  Fear is not my M.O. (although I sure seem to be talking about it a lot lately).  But I was faced with an internal dialog where fear and truth were butting heads (and my severely fractured butt couldn’t take anymore!).  But with three mini strokes and a subarachnoid hemorrhage that could’ve killed me just 16 days prior, combined with another round of anesthesia for yet another surgery (the aforementioned severely fractured/collapsed sacrum), I wondered if that last surgery might be the last time saying goodbye to my daughters on the other end of the phone and it was convicting me.  I keep telling myself I'm all in, until the moment that I think I might be closing my eyes for the last time, then reality hits like a wrecking ball.

In sharing with my group, I recalled the phone conversations with Meghan in Austin and Molly in Arizona.  I called prior to my surgery, just so I could hear their voices again and tell them ‘Everything’s gonna be alright’, even if in my mind I wasn’t sure that it was true.  I didn’t want them to worry, which I knew was a futile effort.  They’ve seen me go through so much in the last 9 years, how could they not worry just a little?    Fighting back tears unsuccessfully on the phone, I said goodbye (I love you) to each of them, and my desire to convey strength disappeared with each tear that rolled down my face.  I spoke to my parents, and the word goodbye, wouldn’t even come out of my mouth.  I was lucky to have Will with me when they wheeled me in for this surgery, and he leaned down to give me a kiss on the forehead and the last thing I remember was telling him I loved him.   The tears and the fear were NOT that I might die, but more that I might not stay.  And in that moment, the thought was unbearable. 

As I shared this very personal confession with my Christian sisters, I was once again fighting back tears.  But as had happened so many times before, I was the recipient of very personal prayers on my behalf.  Little did I know that their prayers, both spoken and unspoken, would be answered within half an hour of getting home!

Any time I get a call from 713 or 832, I know it’s Houston (MD Anderson, not NASA😉) calling.  I answered the call, assuming it was related to some recent bloodwork, but was surprised to hear the remnants of what I believe to be an Italian accent on the other end of the line.  It was my new oncologist speaking with a sense of excitement and urgency at the same time.  I was taken by surprise, and quickly realized that her call would illuminate the prayers from earlier in the day. She got notice of a clinical trial that has but a single spot open starting in June (2022). It's an immunotherapy trial, which most people believe is the answer to all cancers, but it hasn't shown any measure of success treating my particular type. BUT it IS a new type of immunotherapy that targets a different genetic marker. It's been very successful in treating mice (sorry, Mickey 😉). It's not specific to my cancer but has worked in some similar solid tumor types.  She informed me that the last time a slot opened it was scooped up within five minutes by another doctor eager to offer their patient hope.  This time, with my consent, it would be God using her to offer me hope once again.   I told her without hesitation and with my crooked smile (from the major facial reconstruction surgery I haven’t even told you about yet), to add my name to the list.  How great is our God the He sometimes answers prayers in unexpected, yet amazing ways?  My sisters in Christ prayed for God to cover me and release me from any fears. And He answered with a mighty YES and so much more.   He answers prayers and He deems us worthy!

The Surgery That Wasn’t (And The Trial that might be?

The surgery that wasn’t and the trial that might be? Seem like rather conspicuous words. But like I’ve said before (or have I?), one thing always leads to another with my treatment. Does anyone else hear the Fixx song sounding in the back of your mind?  You’re singing it now aren’t you? Anyways, sit back and see how the truth of these lyrics played out in my life ;)

I don’t even remember going to sleep the morning of my second liver resection on September 8, 2020, but I certainly remember waking up!  The abdominal block didn’t quite do its job and I woke up sobbing, in what I could only call the most unbearable, excruciating pain. It was so jarring that I struggled for each breath.  But what came next was even worse…when Dr. Aloia’s fellow told me that the surgery had been aborted because my body was scattered with more cancer than we even knew.  Say what??  It was like I had been stabbed in the heart.  I tried to ask a simple “HOW???”  But the words were stifled by the sharp pain.  I heard them say they had found too many pea size nodules to count on the omentum and peritoneum.   The what?  I knew I wasn’t of right mind at the time, but it was like they were speaking a foreign language.  If you’re like me, you have no idea what those are!  Not that you’ll ever need this information again, but for the sake of understanding, I’ll tell you.  The omentum is the fatty apron off the stomach (and there’s plenty of fatty apron LOL) that has some immune properties which help other organs in distress, so cancer there is kind of a bummer.  The peritoneum is the inner most layer of the abdominal wall in the pelvis area.  I went into the surgery thinking I would wake up with one less mass (and gall bladder) than before, but for whatever reason, it wasn’t meant to happen that way.   At some point I began to question why these pea size bits didn’t show up on the scans I had prior to surgery, especially given the sheer amount.  But apparently the nodules were playing a cruel game of hide and seek.

During the surgery, upon their discovery, my surgeon took a biopsy from each area and personally ran them to pathology, where he immediately got the results.  And, to no one’s surprise, it was ACC… the same nasty beast that keeps trying with all it’s might, to take me down.  But apparently the beast hasn’t gotten the memo that he will lose in the end.  John 10:10 The thief comes to kill and destroy.  I have come that they may have life and have it to the fullest.

Romans 16:20  The God of peace will soon crush Satan under your feet. The grace of our Lord Jesus Christ be with you.  A second set of nodules were sent through normal pathology, but there was little question as to their origins (deep sigh...).

While I was still on the table, deep in my created sleep, with my stomach slit open along the same scar line as before, from belly button to chest (from my first liver resection), the surgeon called Dr. Glisson (my oncologist) who immediately took his call.  After discussion, she was the one who ultimately decided to have him halt the surgery.  With that much new cancer, and the existence of known metastatic disease in the liver, kidney, ovary and lungs, it was clear that a systemic treatment was the only thing that might possibly help me.  And the surgery, at this stage in my disease, wasn’t worth the risks.  Any complications from the surgery could keep me from getting on a clinical trial, which is what we have been praying for all along.  So the decision was made, and I was stitched back together, no better off than I was the moment they wheeled me in. 

Reeling with pain, and devastating news, I have never felt so very alone.  Once again, Covid prevented Will from even entering through the hospital doors.  This hurt just as much as the pain from the failed block.  He couldn’t be there for me the way he so desperately wanted to and the way I needed him to.  I had no one to comfort me and calm me down.  No one to ease the fears and uncertainty of that moment, other than the nurses that were scrambling to try to ease my physical pain.  And for what was probably only 15 or 20 seconds, my mind (already altered from the meds) went astray.  The enemy was telling me that this was the beginning of the end for me.  And for just a moment, the pain and fear let me believe it.  But just as He always does, the Lord swayed my thoughts from fear to fierce, as I remembered the t-shirt Chris gave me that sat tucked away in my suitcase.  NOT TODAY satan, NOT TODAY!! I proclaimed God’s power and satan’s defeat. And I remembered with the LORD I am never truly alone.  My attitude changed and despite the disappointment and the long recovery from the surgery that wasn’t, I realized it was part of His greater plan for my life. 

And like God often does, He flips the script and shows me how His plan is always better.  Every time that God has stopped a treatment (or surgery for that matter), it has protected me from something worse, or provided opportunities that would have otherwise evaded me.  He is navigating me through this crazy journey with exact precision.  Sometimes I don’t understand why it must happen this way, but His way is the best way and the ONLY way.  My precious friend Shelly, upon hearing the latest in my crazy life, said that I was inspiring people to work hard to get better. I hope that is true.   She said she believed me 100% when I told her that God stopped the surgery so I could go on the clinical trial (hang tight for more on that).  That to me outweighs the suffering!  

A precious family member also talked to me about how God makes a path for us that might not look like we expected but it is what is right.  He has clearly seen what God has done in my life and is starting to believe it and proclaim it to some degree for his own life too.  I have been praying for him for years to fully come to know and accept Jesus as his Savior.  Slowly, but surely, I’m seeing that prayer being played out over time.  Sometimes it’s hard to wait.  And sometimes the answers aren’t always what we want, but they are what He wants and that’s what matters.  Case in point, my mom said she prayed for the doctors to be led by the Lord in their decision making and precision.  My surgery didn’t play out the way she thought she prayed it...for the cancer to be removed, for no complications or no pain, etc.  But God answered it in the way the decision making about the new tumors took place.  Had it not been for the surgery, the cancer might have continued to go unnoticed and multiplied further. My care team’s communications were absolutely led by the Lord (Dr. Aloia calling Dr. Glisson), and their precision to close me up without complication.  Other than the pain, that is! 

We didn’t tell the girls about the newest discovery right away, because I didn’t want them to be alone when they heard.  I didn’t want them to pulled into that place that I had ever so briefly gone, of wonder and fear, and then not be there to support them and hug them.  It may not be the result we wanted, but it could be the answer we needed.  When we did tell them, a few days later, we had some good news to share.  While I was still in the hospital, Dr. Glisson came to visit, and gave me the news we’ve been waiting for.  A new clinical trial protocol was being made available as early as a week away!  Had they proceeded with the surgery, I would have been ineligible for it.  Thank you, Lord, for your protection and your perfect plan.  Jeremiah 29:11 For I know the plans I have for you, declares the Lord.  Plans to prosper you and not to harm you.  Plans to give you hope and a future.  This verse, his Holy word, never fails me. 

Like I said at the beginning of this post, one thing, always one thing, leads to another!  I was abounding with excitement at the prospect of the new trial.  I followed up with her a few weeks later and was disappointed to learn that there wasn’t a spot currently available, but I was next on the list.  Disappointment seemed to become a theme in my treatment lately.  I had been waiting 7 years, what’s another month or two?!  When I mentioned my disappointment to another dear friend, she said, in all her wisdom, “Thank Him for the assurance of the available spot.”  I was thankful for this perspective that helped set my mind pointing back up where it needed to be. 

With the news still looming, we headed back towards home after my hospital stay, with a stop at Walmart, where you never know what you might see or hear.  And it did not disappoint when we heard a lady say, “Not Today Satan.”  Even though I didn’t get the news I wanted, He still offered me a reminder (at Walmart, no less) to trust in Him and to not give satan a stronghold.  That night, we went to dinner where I proposed a toast, “Here’s to a spot on the trial.”  Will cut me off and said, “A spot that’s not in your body for once.”