‘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.” 

WOVEN, PIECE BY PIECE

 

WOVEN, PIECE BY PIECE

January 15, 2022

I don’t even know how to start.  How can a person with all the words bottled up deep within her soul, be both a scripter and a hostage to those words at the same time?  So much to say that it is deemed too overwhelming and so much to say that it’s deemed paramount above all else.  How many times over the last year+ have I written notes in my journal that were deserving of their own blog (that isn’t 8 pages!), yet life pulled me away to do less important things.  I’m so grateful for the notes, as they are reminders of the journey…reminders of where I’ve been and who has been right there by my side through it all.  Bear with me as I share with you how God has worked in my life since he Answered Prayers.  You will see moments of Part 2: Radiation and Infection Again and Part 3:  The Surgery that Wasn’t (and the Trial that might be??), and how they all have affected the outcomes since my last blog.

Over the last week, I’ve felt what must be a nudge from the Holy Spirit to sit down and share with y’all.  It’s been an exhausting 4 months (well, year for that matter; well 9 years for that matter).  I know, I know.  I sound like a broken record.  Trust me, I wish the needle would stop skipping and my record would play a new tune from beginning to end without a scratch.  But I believe God wants this to be my song…a beautifully broken record that will eventually be music to His ears, lacking nothing.  So, I apologize if my story sometimes feels like Groundhog Day. 

At the beginning of the year my Community Bible Study class started Revelation.  We studied it about 6 years ago, but if ever there was a book that needed to be studied time and time again, it’s Revelation. I also started The Bible Recap on January 1^st, which is a yearlong chronological study of the entire Bible, verse by verse.  It’s quite interesting to be studying the beginning and the end at the same time.  So, over the course of the last week, I’ve been studying both Revelation and Job (the 2 hardest books in the Bible) and have had revelations of my own and seen God’s hand in my life through it. 

Job was an upright, righteous man in God’s eyes.  I know for certain that I don’t fall into the same category as Job.  But I can certainly relate to his cries out to God, and the anguish he felt as he was being tested.  Like Job, I try not to question God’s authority or omnipotence, or even His 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 for hope and a future.

I hold tightly to this verse, knowing that everything I go through is part of His plan to make me more like Him.  He clearly has His work cut out for him based on my trials ;)

Bear with me as I break down some of my thoughts through scriptures that have recently spoken to me.  Last Sunday, I was doing my studies and started with:

Revelation 4:4 Surrounding the throne were twenty-four other thrones and seated on them were twenty-four elders.  They were dressed in white and had crowns of gold on their heads. 

As we broke this verse down, we referenced many other verses which help to clarify what the crown is and who is to receive it.   It led us to:

James 1:12 Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love Him.

I felt like this verse was talking to me, reminding me (no, telling me) to hang on, to stay strong, because there is so much more for me.  There is a crown for me, a prize, which represents joy, glory, hope and life in Him.  As I continued my study, I went to Job where I saw him anguish in:

Job 19:9 He has stripped me of my honor and removed the crown from my head.

As I read this, I immediately wrote James 1:12 in my Bible next to that verse. If only Job could have read that verse in that moment, he would’ve known that God did not remove his crown and in the end he would be blessed two fold and that the crown would be his forever. That crown is for all of us who love Him.  I love how God gives us these moments of clarity.  But my clarity didn’t end in that moment.

I haven’t been hanging out much in public over the last week, as I’m having yet another surgery in 3 days and must have a negative Covid test on Monday to proceed with the surgery (more to come on that later).  With the spread of Omicron, I decided to lay low, which is driving me crazy. For those of you who know me, laying low isn’t my thing.  Laying low also meant not going to church last week.  I had every intention of watching our church online, but a funny turn of events took place and God had other plans.

Meghan has been doing a Bible study with friends and going to another church with them most Sundays.  It just so happens that last Sunday was one of those days.  As I sat in my chair, jammies on, hair a mess and curled up under my blanket (yes it gets cold in Texas), I told her I was going to watch church.  A slight tinge of guilt made me voice it to her, so she didn’t think I was skipping out altogether.  She asked, “Austin Ridge?” which seemed an odd question, her knowing my devotion to the Lakeway Church.  But something (or Someone) made me ask if they had an online service.  She nodded her head as she walked down the hall to leave.  Half joking, I told her I’d watch if she waved to me from the crowd.  So, I streamed the service from my phone to the TV and was shocked to hear the pastor say they were starting a study on James.  Really?  What are the odds?  James 1:12 tied together Revelation and Job for me already that morning.  Now from Revelation to James to Job and back to James, I knew that this was not a coincidence for me to be watching this new church (remember Godincidences?).  I didn’t see Meghan wave to me (unless I confused her wave with someone praising…lol), but I was overcome with the message.  Tears rolled down my face (good thing I wasn’t wearing mascara!) as I heard the pastor talk about trials and temptations and James’ words to believers.  Last Sunday I was meant to watch Austin Ridge, even if I felt like I was cheating on the church I love.  I was moved in a whole new way, similar to the time I went to church on Christmas Eve alone, as a young professional, and felt the tears and message tugging at my soul, like it was meant only for me.  Just the night before I was talking with a dear friend (Sue Sue) about all the difficulties I’ve faced.  She too attends Austin Ridge like Meghan and her friends.  I called her after the service and she told me she too had been crying the whole time, thinking about my resilience.  It’s truly amazing how God ties everything together for us, not always with pretty, wired ribbon, but sometimes with a needle and thread stitching us up piece by piece. 

I finished reading Job today and underlined:

 Job 40:6 Then the Lord spoke to Job out of the storm.  

What a blessing that we have a God who is in relationship with us.  Yesterday I saw God draw near to Job, despite all of Job’s questions.   Reading Job right now was no coincidence either.  It has reminded me that God is OK with me asking questions and it is OK for me to cry out to Him.  I haven’t allowed those emotions to flow freely throughout my journey.  I think that’s been God’s way of keeping me strong and protecting me through the storm.   But tears are not weakness, rather human emotions that God gave us to cope.  He spoke to me out of the storm through Job.  I needed that reminder yesterday after having a call with my oncologist.  But to tell you that story, I need to stitch it all together (see a theme here?) and go back to 2020.

Part 2: Radiation and Infection Again!!

January 16, 2022

Now before I cue 2020 again, I just have to say that this morning my Bible App daily devotional verse was:

Psalm 139:13-14  For you have formed my inward parts; you knitted me together in my mother’s womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.  

I tell you this because just yesterday (or a few paragraphs ago…lol) I was writing about God stitching us up piece by piece, and here he we see how he knitted us together before we were even born.  He knows our thoughts and needs and speaks to us. This verse spoke to me. What an amazing reminder of how we were made and how much more He will do to keep us stitched together, even when we feel like we are getting ripped apart. 

As is true of much of my time, 2020 was filled with multiple scans for multiple issues.  Prevalent among them, was a necrotic jawbone that was causing me excruciating pain.  I wish I could tell you that after I got off the antibiotics in June of 2020 (that I told you about in my last entry), and I wouldn’t have to cross that bridge again, but exposed jawbone and a glaring fistula eventually led me back to the hospital for infection.  But not before having radiation for a new tumor on my sacrum. 

Cue July 2020.  That’s right, yet another metastatic lesion, but this time it was in my what??  Sacrum?  Never heard of that (or have I?).  I remember that in 4^th grade Science, or was it 5^th, (in Katonah, NY) our very strict teacher (Vivian Kerns…she obviously made an impression) made us learn EVERY bone in the body.  Now being a studious young girl, I learned them all.  Fast forward to my 51-year-old self and that information was long, long gone in some ancient bone graveyard that I didn’t even know existed.  Well, Google taught me that it was the bones between the coccyx and lumbar spine.  If you knew that before you just now googled it, I’m impressed!

Dr. Glisson (my oncologist) sent me to Dr. Ghia for a radiation consult.  He told me that he could do SRS (Stereotactic Radio Surgery), which is essentially what I had after the recurrence on my jaw.  It is extremely accurate and is hypofractionated, meaning it is extremely high dose in few treatments.  In this case it would only be one treatment lasting about an hour!  Sounded like great news…sign me up.  Before he would, he had to tell me the side effects which included possible permanent numbness on your foot, pain flare ups on legs, skin irritation at site and it could make your bones more fragile.  Four percent chance I could get a possible fracture (hold on to that little tidbit).  If we worried about all the side effects they must disclose, no one would ever have anything done.  Blah, blah, blah…sign me up.

July 22, 2020.  We got up at 7:30 am ready to leave the house by 8:15 to embark on yet another 3-hour car ride to Houston. Before we left, I made sure to give Molly a kiss as I woke her to say goodbye.  I hate having to leave her at home, but my parents would always come and stay with her, which helps me worry less about her worrying about me.  Does that make sense?

Anyways, I spent much of the time in the car on the phone with my dear cousin, Bridget.  If you know her, you know she’s a talker.  If you think an hour is enough, you’re more wrong than a Prius in Texas (don’t be a hater, you know it’s true).  What time I didn’t fill chatting with Bridget, I used to talk to my mom, who holds a close second to the amount of time she can talk on the phone.  I’m no slouch myself, so it seems to be a genetic trait from the White’s.  As I talked to Bridget, I told her where I was going and why, she said and I quote, “You’re a strong bitch.”  I took this with the intent that it was meant, to build me up.  We come from a long line of strong women, who I won’t call bitches, but I get some grit from them for sure.  I always hear a crack in Bridget’s voice though after I tell her these things, even when she’s trying to be funny, which is usually to deflect.  Deflection is something I’m very capable of as well, and often use humor to deflect from the sometimes-hard realities that might otherwise make me cry.  I hope you’ve seen that and appreciated it in some of my writings.

Right before we pulled into MD Anderson we heard “Everything’s Gonna Be Alright”.  It had been a hot minute since we heard it played on the radio and it put a smile on both our faces.  Thank you, Lord, for the sign and reminder that with YOU, everything IS gonna be alright.  On that day, I didn’t really have any concerns or fears, and when a Facebook Memory from 7 years ago popped up tears started streaming down my face as I read the words of a poem I had written the last week of my very first cancer treatment.  I didn’t have a spirit of fear then and neither will I now.

 2 Timothy 1:7 For God gave us a spirit not of fear but of power and love and self-control. 

These words struck my heart and were a reminder to myself of God’s good and perfect grace and love.  Here I am 7 years later (in 2020), and I don’t even know if I could remember all the different treatments, hospitalizations, surgeries I’ve had, or even count all the metastatic tumors and their locations for that matter.  It’s been a long road for sure! But I felt good about the SRS treatment Dr. Ghia was about to perform.  And I only had to have one treatment, which in the world of cancer is like hitting a $5 jackpot on a penny machine!  And my cancer has responded well to radiation in the past, always leaving cancer in the dust.  If only there was a way to safely radiate my whole body to rid it of this disease.  But, like Dr. Hanna always said, we have to play ‘whack a mole’, killing it piece by piece.   That’s all fine and dandy, until the moles have taken over (why am I picturing Caddyshack right now?). The lack of a treatment to systemically kill all the moles at the same time is a bummer, to put it mildly. 

On radiation day, I wore the same camo leggings that I wore to the simulation, necessary to keep all measurement and placement factors the same.  I didn’t think about it at the time, but it’s kind of telling that I chose to wear camo to the cancer killing party ;)    The tattoo’s on my belly and hips are set to help align me with the machine.  Speaking of tattoos, I’m seriously considering a ladybug to cover one of them.  The simple black circle that is there now could be one of its markings.  What do you think?  I’ve never considered a tattoo before, but this belly is done being shown to the world, so maybe I should…LOL.  Oh, who am I kidding, I’ll never do it.

Prior to the treatment, I stopped at the hospital chapel, where I got on my knees and just poured it out to God.  Tears rolled down my cheeks as I prayed.  I tend to suppress my feelings about cancer and treatments, and then every so often when I’m all alone with the Lord they seem to come out.  As I sat there praying and writing in my journal, the largest thunder just played over the soundtrack of my life (on that broken record).  God was speaking to me in the thunder.  He was with me, even though Will couldn’t be…once again because of Covid.  Sitting alone in the chapel, with the occasional person coming in and out, I tried to take a selfie of me and Buc-ee (oh yeah, he’s here with me too).  I decided against it when I saw another patient come in.  They most certainly wouldn’t understand…I’m not even sure I do (lol). 

You should’ve seen the looks I got as I walked down the halls of the hospital.  A hospital that has some of the most important, educated medical minds in the world.  Contrast that with the crazy lady in her camo leggings walking through the hospital with a stuffed animal the size of a 2-year-old on her hip.  If Will couldn’t be with me, then I was going to bring something that makes me happy.  A few people smiled at me and simply said, “Buc-ee!!” (The Texans in the house could appreciate it).  Some people looked the other way (afraid to make eye contact with the looney).  And one man stopped to talk to me who told me how much he loved Buc-ee and I told that nice man that Buc-ee was my companion since my husband couldn’t be.  I also told him that Buc-ee made me happy, and I needed that heading into treatment.  Sitting in the empty waiting room, I couldn’t help but reminisce about when we were here alongside Elizabeth and Sonny and how God orchestrated that meeting and friendship.  But today, it was just me, once again (record skips).  A short time later, with treatment complete, I rang the bell signifying completion of my treatment.  It might have only been one treatment, but I deserved to ring that bell, and I did it with a buck tooth beaver in a red cap, on my hip.  Another part of my journey complete.

INFECTION…AGAIN, AGAIN!

It wasn’t long after my treatment (9 days to be exact) that I was once again headed to the ER at MD Anderson.  The broken record continues to skip like my Billy Idol Rebel Yell album circa 1984.  I needed to do some serious rebel yelling myself!  If my 15-year-old self only knew at the time what was in store for her. (Besides cancer, top on that list was getting a kiss from Billy Idol…ok on the cheek for a picture, but it was still a kiss.  LOL)

After the radiation, I was preparing for the next thing that would help stitch me back together.  This time it was another liver surgery to remove another tumor (record skips yet again).  I was curious as to whether Dr. Aloia, my liver surgeon, had spoken with Dr. Torres in Infectious Disease about putting me on antibiotics during and after surgery, given my propensity for infection and the lesion on my face.   It looked like a giant white volcano, ready to explode.  I explained that I thought it was getting worse, since I saw him at my preop appointment and asked if they would schedule a video call (the only good thing to come out of Covid) with Dr. Torres.  Soon after I had the aforementioned call and as soon as I took the dressing off the volcano, he saw that it had erupted slightly with blood and puss (I hope you’re not eating breakfast right now), Dr. Torres told me to come straight to the ER.  Do not pass go…do not collect $200. 

We left, yet again, for the long ride to MDA an hour later and I walked into the ER around 6:15pm, pulling my suitcase and 3 other bags(I know to prepare for a long stay now) and big baby Buc-ee once again on my hip.  But I walked in alone…AGAIN.  COVID=NO VISITORS.  I can’t imagine what it’s like for Will to watch me fumble my way into the hospital, not knowing when I would be coming home.  

Before we left home, I didn’t know Will had called Molly (who was at her boyfriend’s house) to tell her what was going on.  He realized I wouldn’t leave without seeing her, knowing this would mean another hospital stay. When I called to tell her what was happening, she told me that she had already talked to her dad.  I could tell she had been crying and I could still hear it in her sweet, soft voice that trembled ever so slightly with each new word. Judge drove her home so I could hug her and say goodbye, not knowing the next time I would see her again.  Meghan was at school in Arkansas, so we called her on the way down.  You could hear the fear and raw concern in her voice, more stoic like her dad, but I knew on the other end of the line was just my little girl with teary, red eyes wishing her mom didn’t have to keep going through this crap (although in her 20 year old mind it might have been a less distinguished word than crap…LOL).  My heart just rips into pieces when I see the toll cancer has taken on my family.  I see the way they each process it in their own way, and there is no doubt in my mind how much they love me and how much I love them all back even more. 

Dr. Torres had already sent instructions to the ER, so when I arrived after the 3-hour tour, they were ready for me.  After three tries and lots of digging for veins, I finally got my IV.  Well, that was after one of my veins burst leaving a lovely green and purple blob on my arm.  Then on to more fun and the giant swab being thrust into my nose for what we all now know is the COVID test(think Chris Cuomo…lol).  I felt like it hit my brain, but I was happy (like the tin man) to know I still had one.  All this was added to the fact that I woke up nauseous and puking, but I lost a pound, so there’s that.  They also took a culture of my wound with another huge swab.  I was just glad they weren’t putting any swabs up anything else!

Almost 5.5 hours later I was in my hospital room, and not long after headed to a midnight rendezvous with the MRI machine.  After what had been an extremely long day, I headed into the next day listening to the hypnotizing, clicking sound of the machine that is so familiar it is somehow now comforting (if only they had MRI soothing sounds on your phone I might be able to sleep at night).  I was wheeled back to my room around 1:30am where I spent much of the night being awakened by the sound of one alarm or another and being poked for bloodwork and prodded for vitals.  No sleep at all.  I looked like I had an all-nighter with too much fun or booze or both, and at this point I was wishing I had!

Another couple days had passed and we were at the mercy of the culture, which still hadn’t starting growing.  Before they can customize my antibiotic regimen, they need to know the exact strand of the bacteria.  One of my nurses (who remembered me from my last time in the hospital), took another swab which was more substantial, and hit both an actual and metaphorical nerve.  I was on a similar cocktail, with 3 of the same antibiotics as before, including a new one that covers a wider array of bugs (why do they have to call them bugs?? EW.)

That same day, the MRI results came in.  It showed a fistula(tunnel) had grown from the inside of my mouth to outside the volcano on my cheek which explained why every time I blow my nose it pushes air out through the wound (remember way back when the peas would come out my nose J).  Unfortunately, they can’t drain it because of all the radiation. I wouldn’t heal from the wound.  And they can’t pack it because the hole was too small (that would soon change).  The in-house Infectious Disease doctor told me I was’ so strong and such an inspiration’.  I didn’t feel like it, but sometimes their little words of encouragement can go a long way. 

After a back and forth on results from the cultures, they finally determined what the infection was (same as always it seems) and how to treat.  I would spend a total of 2 weeks in the hospital, once again feeling like a lab rat in a hazmat suit.  But the staff is great and I must admit I kind of enjoyed having people recognize me from my last hospital stay.  One day I opened my door to leave the room and a girl sitting at the nurse’s station said, “You’re back!” almost excited to see me, not realizing that me being back wasn’t really a good thing.  But it made me happy nonetheless.  Then another day a care assistant came into my room, looked at me and said, “You were here before.  On the other side.”  I replied in the affirmative and she said she remembered me ‘zooming’ by her station as I walked (that was when I did the marathon in the hospital).  Then I was given a confidence boost as she said she referred to me as the ‘pretty one’ when they were talking about patients.  I certainly didn’t feel pretty as I sat there in my pajamas (you won’t catch me in a hospital gown with my butt hanging out…EVER!), with my bedhead hair and a volcano on my face that looked like Mt. Saint Helens after it erupted in 1980.  But I’ll take the compliment and run!  OK, I’ll walk, my running days are over (and I’m a little bit glad about that…I hate running now).

A male nurse walked by my room as I waited for a nurse to bring a hazmat suit so I could take another short walk around the floor.  He had seen me out walking before, but I suppose I was more energetic than most patients and he asked if I was a visitor or a patient.  When I told him I was a patient, he said, “Wow, you look great.”  The dressing covering Mt. Saint Helens on my face must’ve helped my looks J.  While on my walk, as I passed my old wing, another nurse said, “You’re back!”  It’s been kind of fun having so many people that didn’t even take care of me last time recognize me.  I was the local celebrity in G20.  Forgive my ego boost if just for a moment.

This hospital stay was filled like all the rest, with it’s up and down moments.  I waited for the day I’d be released, and I thought that day had finally come on 7/29, but it wasn’t meant to be that day or even the next.  The night before Will was eventually supposed to bail me out (in the form of max out of pocket) my liver numbers were through the roof, which meant I wouldn’t be going home the next day.  The only plausible explanation (to me anyways) was that the new medicine they started that day had to be the culprit.  It seemed obvious by process of elimination, at least to my untrained mind.  The doctors, however, disagreed saying there was no literature stating that the medicine could do that.  Literature, I’ve realized, doesn’t necessarily jive with reality.  Like when they told me the doxycycline I was using couldn’t cause skin rashes so bad that the skin on my hands was peeling off in layers.  I digress, but it’s an example of science failing the literature, and literature failing the truth (Hmmm…similar to covid?).  Anyways, whether the doctors thought it was the culprit or not, I told them to remove it from my regiment.  Late that night, as the nurse prepared my IV antibiotics, I noticed that she was about to give me the same drug that I earlier asked them to stop.   When I told her I was not going to take it, she informed me that the doctors hadn’t canceled it.  She stood there staring at me, unsure what to do next.  She clearly never had a patient refuse a treatment.  Needless to say, I adamantly did and the next morning my liver #s were back down.  Even if it’s not what caused it, it sure validates my reason for stopping it and advocating for myself.  After a few days of making sure my bloodwork was stable, I finally made my way out of the system back home where I would once again be on IV antibiotics. 

August 2020 passed by, and the fistula that caused Mt. Saint Helens to explode, continued to drain, which the doctors said was a good thing.  But the pain continued to get worse, even as the infection began to clear.  Pain is relative, and it’s starting to become an annoying one at that.  I never had a little brother, but maybe those of you that have could relate (lol).  It seems that I get one thing under control (getting off the IV antibiotics on 8/31) and another problem pops up in its place (next blog entry…The Surgery That Wasn’t).  It seems that I have lots of unworking, working parts.  If only they could stitch me together again.  Even if they can’t, I know that God has been stitching me together piece by piece, creating in me a heart for Him.  And He can do that for you, whatever it is you’re facing today.  Without Him, all the stitching and weaving in the world will never make you whole. 

-Cathleen McBurney  (Completed 2/18/22)

NOTE:  Thank you for indulging me.  I know that reading 8+ pages takes time out of your day.  But I hope you can find something in my story that resonates with you.  I promise the next one won’t be as long!  I actually hoped to get it written to include with this one, but I decided to spare you page 9 & 10 of this ‘blog’ and save it for later.  As a side, the surgery I spoke about at the beginning of the blog was a success and I’m fully recovered.  I might get to that story in another year (LOL).  The 'Liver Surgery that Wasn't', is next.

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ANSWERED PRAYERS – Part 1 (of at least 2 more!!)

 

Reading the title of this chapter, you might have conflicting thoughts when I tell you that 2020 hasn’t been my best year.  In fact, it sucked.  It’s funny really, that when I pulled up my running blog document, I noticed that my last entry, “Hope in Affliction”, was originally called 2019 Sucked (the optimist in me found a nicer way to say it, thank goodness J). I see a trend, however.  It’s been a rough couple years for me, but despite it all God has answered so many prayers.  The timing may not have been when I wanted, or the answers may not have looked like I thought they should, but God showed up, and will continue to do so, even when things suck…

 Part I: Infection…Again                                                                                                                                            

The bulk of the last 18 months has been filled with more pain and aggravation than most people experience during the holidays with their in-laws.  OK, that’s not a fair comparison, since my in-laws have always been great, but I know there are others who at least giggled at the recollection or anticipation of such irritation ;)  But I digress. 

This year alone, due to severe infections and a surgery, I have spent upwards of an entire month(over 3 stays) in the hospital (and that’s just since my last blog in April!!).  I may have just heard a distant collection of sighs and maybe even a few ‘oh no’s’ under the breath.  Oh no is right!! Sigh away.  Try to imagine spending that much time in the hospital.  Now imagine that month spent entirely alone due to COVID.  You might cherish your alone time; even pray for it.  Heck, I might have even wished for it.  But this is not the type of answered prayer I was talking about in my intro.  In fact, it was devastating.

There are many people out there who have felt isolated due to COVID, and I don’t want to give it more time than it deserves, but it is stripping people of precious time.  As I was stuck in the hospital room, without my family or friends, I realized how sad it is for the elderly population that have been held hostage due to COVID.   They are spending their last months (or God forbid, years) without physical touch, without family gatherings, without birthdays, without church.  And don’t even get me started on church.  But I digress.

I was alone, with no family and no friends.  Taken to the hospital where Will twice had to kick me to the curb of the ER, unable to even help me through the door.  OK, he didn’t actually kick me out, but I felt kicked in the gut nevertheless, by a policy and a system that hurts the same people they’re trying to protect.  It was just me, Bucee and Hottie (my faithful stuffed animals), and a suitcase that was packed by an overly optimistic self, as evidenced by the only 5 pairs of underwear.  Are they underwear or panties when you’re a 51 year old woman?  Sorry (very sorry actually), but I digress.

This first trip to the hospital finally ended after nearly 2 long weeks of time served (4/20/20-5/6/20).  However, my underpacked suitcase left me with the aforementioned underwear and only 2 pairs of leggings, a couple t-shirts and a cute pair of pajamas (you won’t catch me dead in a hospital robe).   Not enough for much more than 4 or 5 days at most.   I kept telling the Infectious Disease nurse that if they didn’t get me out of there soon I was going to run out of chonies ( J Laura W.).  She actually offered to go to the store to get me some.  She was so sweet that it wasn’t quite as weird as it sounds.  I told her that if I was there much longer I might have to take her up on that offer…and unashamedly, I did.  It was actually pretty hilarious.  Just picture her calling me from Walmart asking me what kind of underwear I wanted (LOL).  That was a strange conversation!  My level of embarrassment clearly not as high as it should have been.   Since she was already there I asked if she would pick me up some yoga leggings and t-shirts too (and don’t forget the shampoo and conditioner).  The next day she showed up in my room, Wally bags in hand, with enough to get me through another 3 or 4 days.  Let’s pray it would be enough.   She was probably glad when her rotation was over ;)

That 3 or 4 more days came and went, and the once clean clothes were now placed in the plastic Walmart bag marked ‘Dirty’.  My sweet Infectious Disease nurse must have sensed what was coming, and her rotation ended, sparing her the humiliation of another trip to Walmart for the crazy lady in G2020.  But my sweet friend and neighbor, Janie called her daughter in law Christine, who lives in Houston, to see if she could assist me with my laundry.  When she didn’t answer, Janie (leaving no stone unturned) called Christine’s best friend Jennifer(which horrified Christine BTW), who happens to work in the Head/Neck department at MD Anderson to see if she could help.  Jennifer took Janie up on her request, without hesitation, and came to pick up my laundry.  Since she is an employee, they didn’t question her when she entered the hospital.  When she entered my room, a light seemed to shine on her familiar face (I had met her once before), and I could hear choirs of angels singing ‘Halleluia’.  OK, I might have taken some creative liberty with the above set scene, but that was literally how I felt.  I gave her a big hug as if we’d been dear friends forever, seeming to forget for that split second that we just broke the 6’ social distance rule.  Remember, because of the COVID restrictions I wasn’t allowed ANY outside visitors, which can weigh on your psyche.  Jennifer seemed like an angel to me.  She brought me Starbucks too, which was like hitting the lottery (hospital coffee sucks almost as bad as this year)!  Jennifer took my laundry home, and brought it back a couple days later, with a few extra articles of clothing she thought I might like that she no longer needed.  The running leggings fit my growing torso not quite as well as they did her Ironman figure I’m sure, but I was happy to have them nonetheless. (Why am I the only person who can gain weight in the hospital??)  The next day she returned, clean clothes in hand, with another Starbucks, and a sweet gift…a journal.  She had read my blog about the guardian angel, and the cover of the journal was an angel, and mixed in the blank pages were scriptures.  It was such a beautiful and thoughtful gift, and one I desperately needed.  On my next hospital stay, I would finally fill my first cancer journal after 7 years of appointments and disappointments, memories, fears and joys all written within its pages.  I liked that I would be turning a new page with my guardian angel journal, thanks to one of my newest guardian angels.  But she wasn’t the only one.  Halleluia.  Answered prayers.

My husband, Will, is definitely one of my guardian angels.  Not the type that shows up at some predestined moment to save the day, or that has come for a period of time to fulfill one specific need.  His angel wings might not be pristine, but he has been a constant support throughout this cancer journey, missing maybe a handful of hundreds of appointments over 7 ½ years time.  He has endured the pain and sleepless nights, the illness, the treatments…he has endured it all right by my side.   He is an answered prayer! 

So when we discuss the impact of COVID on me as a patient, imagine what it was like for him to watch me walk into the hospital alone.  It must have been like slow motion for him, as I wheeled my suitcase towards the front door and turned around to wave goodbye.  The tears I had in my eyes were met with the glassy stare of his, and I turned back towards the door, that I wouldn’t pass through for another 17 days.  Imagine what it was like for him to know that I was there for that long without any support other than the Zoom calls with friends and family.  But I didn’t even have my computer with me since I wasn’t planning on being in the hospital more than a few days.  So those Zoom calls were on the screen of an old IPhone 8S, with poor speakers and a small screen.  But it was the only connections I had with the outside world. 

Since Will couldn’t visit me, there was no point staying in Houston, but his heart wouldn’t let him leave for a few days.  He went home and about a week and a half into my stay, he called my dear friend Chris, who put out a message to my friends that he was going to return to Houston to drop off some things for me (including my computer). If they wanted to put a note or a little gift in to lift my spirits, he would deliver them all.  He drove the 3 hour drive from Austin to Houston just to drop off a bin full of goodies for me at the hospital entrance.  I wasn’t even allowed to go to the entrance to wave at him.  But it’s probably better that way, because that physical wave would’ve turned into a wave of emotion heightened by my loneliness and fatigue.  But I still had Bucee and Hottie, my faithful stuffed animals, who were introduced to a new rainbow unicorn (only Vale J), a Snoopy and an adorable bear.  There were flowers and other beautiful, thoughtful gifts, that made me realize how truly blessed I am to have such an amazing support system.  The most important gift, a 5x5 canvas with a guardian angel painted by my precious Molly.   I looked at that angel every time I could, seeing in it the face of my sweet girl, who just recently discovered she could paint (a talent she must have gotten from her Grandma and Nana, because I certainly can’t!).  Seeing that bin full of goodies made my heart full and the tears fall...the wave of emotion inescapable.  That bin full of goodies also made me the envy of G20.

While I had plenty of stuffed furry friends, the isolation and lack of real human contact can make you do crazy things (like doing a stuffed animal photo shoot!).  However, not only was I in isolation (being away from everyone I loved) but I was also in contact isolation.  In hospital talk that means special garb that the staff had to wear (as did I) if I left the room, which I did faithfully almost every single day (in my new workout clothes).  Trust me when I tell you with 100% certainty that I was probably one of the only patients to ever walk 3 miles EVERY DAY through the hallowed halls of G20.   When I hit my 9^th day I realized that I had already walked a marathon in the hospital (approximately 550 laps around all 4 wings of G20).  How many people can say that?  I must admit that I probably only did it because I had already promised myself that I would do a 200 mile in 90 day walking challenge and I wasn’t going to let a hospital stay, COVID, or contact isolation keep me from that goal.  I’m nothing else if not determined.  My masked face became a staple to the nurses on the floor as I passed by time and time again.  I finished that challenge, at home, on time, using a portable IV, with Christine and her daughter Maddie, who were visiting Janie from Houston.   In all this, I realized that God probably nudged me to do the 200 mile challenge, as HIS way of getting me in shape for whatever treatments were to come my way.  Even extra weight can be an answered prayer.  But I digress.

My inpatient infectious disease doctor told me that I was ‘The only patient he’s ever had that’s been in the hospital this long, that he hasn’t worried about getting worse.”  Most people that are in the hospital that long couldn’t walk a lap around the entire floor, but then again, who would want to.  My hospital stay kept getting extended because they were trying to treat 3 bad infections, which had become immune to most of the antibiotics that would normally work.  They were trying to figure out a way to get me home on a series of IV antibiotics that they would normally never, and have never, sent someone home on.  Imagine dealing with the inpatient hospitalist, their fellow, the inpatient Infectious disease doctor and their PA, the inpatient pain management doctor and their PA.  Then imagine inserting all my normal outpatient doctors into that mix.  I’m so grateful that MD Anderson has such a multidisciplinary approach, but this was getting crazy!  So many opinions to deal with…and let’s be honest humility is not most doctors’ strong suit.   

Luckily, I have learned how to advocate for myself over the last 7 ½ years.  I know my body and I know what I’m capable of doing.  The first week of this 17 day stint, was filled with naysayers telling me that the only way I was leaving the hospital would be to go to a long term skilled nursing facility.  Did I hear them right?  They wanted to send me, a healthy (well, besides the infection, cancer and all) 51 year old woman to a long term facility where COVID was running rampant and where the majority of the deaths were coming from??  There was NO way I was accepting that and I told them that I had done my job, and it was time for them to do theirs.  I don’t think they are used to patients advocating for themselves like that or questioning their decisions.   When the doctors said I would have to get stat bloodwork every other day, I called the home nursing agency and blood labs to see if it could get done.  I set my weekly hearing appointments.  I even got the inpatient hospitalist to agree to check my reports if they came in on the weekends (that is not even remotely their job).  But, like I said, I did my job now they needed to do theirs and get me out of the hospital and home with my family, whom I missed terribly.  My texts and Facetime calls with Meghan and Molly made me miss them even more, but they made my days bearable.  It was time to be home.

The doctors had finally come up with a plan, and I was set to be released.  While the adjustable bed had made for a better night’s sleep (well at least 2 hours at a time), I still woke up early and showered in anticipation of my release.    I did my hair and makeup.  I packed the room which had become quite cluttered and was beginning to look like a gift shop (whose flowers were beginning to wilt, but whose stuffed animals gained prominent placement at the foot of the bed next to Bucee and Hottie).  I was ready for the rainbow unicorn to start pooping skittles (or whatever it is they do when all is right with the world).  This was the day I had been waiting for.    It was time to rejoice.  All the pieces had fallen into place and I would be going home…until I wasn’t.

The pieces had fallen, but not into place.  They came crashing down like someone pulled the wrong piece from the Jenga tower.  I couldn’t believe it when they told me that the 6am bloodwork showed my liver #s were off the charts.  They wouldn’t be able to release me from the hospital until they came back down.  They day before they tested in the 40’s and 50’s, while on release day it was in the 400s.  I’m not sure why, but they changed one of my antibiotics the night before, which could have affected my internal organs.  Ironically, the medicine was still on my list to take.  I told the nurse that I refused to take the drug, because it was the only factor that changed in between the 40’s and 400’s reading.  Unless they could prove it wasn’t the drug, then I wasn’t taking it.  By process of elimination it had to be.  Once again, the nurse was not accustomed to a patient refusing a drug.  Her confusion led her to question me: “Did the doctor tell you to stop it?”, “What do you mean you stopped it?”, “So you don’t want to take it?”  That’s right, I refused to take the drug.  Thank the Lord that  I happened to be paying attention when they went to give me my nightly meds and that particular drug was still on the list.  Either by divine intervention or by stopping the medicine, my next day’s bloodwork showed the #’s starting to fall.  It would appear to be both.  Answered prayers.

That next morning, with the bloodwork heading in the right direction, I saw hope that my release was imminent.  With the clock ticking down, the ID team sent in Carlos, the poor NP to try to convince me that I would be better treated and cared for at a skilled nursing facility (my Grandma had been in one for a long time…how skilled were they really??)  Unfortunately, Carlos proved no match for me. I was quick to explain the truth that if anything went wrong, I would still have to head back to the ER at MDA, so that argument didn’t fly (thanks, Chris!).  I also asked him (in possibly a more irritable tone) why they are still pushing this agenda, when I told them the first time it was mentioned in week one, that I ABSOLUTELY would not be going to one, even if that meant having to stay at MDA long term (which they didn’t want).  We already had a plan, and the meds had already been sent to the infusion pharmacy.  He walked away, message clearly received and I walked out of the hospital later that afternoon.  Later that day, before my release, my Hospitalist said, "If ever there's a patient up to the task, it's you."  Now they understood me.  Answered prayers.

When I left the room, they had to bring a UHaul instead of a wheelchair, to get all my suitcases, bins and goodies down to the car.   Will was to pick me up outside the doors of the atrium lobby.  Trying to coordinate a hospital release and time the pick up just right, is near impossible in the era of COVID, since he wasn’t allowed to come to my room, or even wait in the lobby.  But somehow we managed to make it happen, without a wait for either of us.  I hadn’t been outside those hospital doors, or off floor G20 for 2 ½ weeks.  As the glass doors opened I was greeted by the smiling face of my husband, a beautiful contrast to the sadness and desperation I last saw in his face when he dropped me off.  It reminded me of the lyrics from a favorite song at church. “THIS is the day that the Lord hath made.  Let us rejoice and be glad in it.”  And rejoice, we did.  Hallelulia!

The next eight weeks were filled with lots of phone alarms, to coordinate the 3 different IV antibiotics that all had to be taken on different schedules. Most of the day I had a portable IV antibiotic ball attached to my arm, that deflated as the medicine flowed through the tube and into my body, healing me from the inside out.  It was a difficult regimen that required a lot of assistance.  But with my family by my side, we made it through.  But it isn’t the medicine that makes me whole.  My body is broken, but it’s the precious blood of Jesus running through my veins, filling in the cracks.  That is where true healing comes from.  And in the midst of all the troubles, and there will be many (we are promised that), this is the truth I need to cling to.  Jesus answers prayers.

A few weeks after being released, I went to my first follow up appointment with my dear friend Melinda.  We drove down planning to go to my appointment (well, me anyways…remember our friend COVID) and then enjoy a nice lunch in Rice Village, followed by whatever our little hearts desired.  But God had his own plans for us as we were about to find out.  As we drove down the familiar path from Austin to Houston, I had a text from Janie (remember her from earlier?).  Janie was friends with a police officer (Kyle) that worked in Wallis, TX, who knew my story of the Guardian Angel Catholic Church.  After many calls by him and Janie, we were told that they would leave the church open for us (even though no one would be there) if we wanted to drive home that way to see the inside.  Melinda and I were both so excited to finally experience the church, from the inside out.

We drove back to Wallis through the old (now familiar) one stop sign towns, that make up such a large part of good old Texas charm.  As we pulled into the parking lot to the outside of the church I’ve now visited several times, I felt a sense of excitement running through my veins.  Was that my blood or the blood of Jesus?  Both, I believe.  I felt the Holy Spirit with me as we opened the red door that I’d only seen from the outside.  There on a table in the narthex, was an envelope with my name on it!  A book with pictures and the history of the church, compliments of sweet Debbie (also a cancer survivor) in the office who helped coordinate my visit.  Even before seeing that envelope, I was immediately in awe at the beauty of this old, historic Catholic church.  The stained glass windows, the statues of saints, Mary, Jesus and the Guardian Angel (of course) was art that ranked up there with the best Museums that I’ve ever been to.  The beautiful deep jewel tones gave it a regal feel.  The ceiling had an intricate gold pattern and arches that looked like something out of Old World Italy, not little, old Wallis, TX.  It was simply stunning, to say the least.  We had been transported to another place. 

As Mel and I sat together in a pew, praying and thanking the Lord for bringing us here, I caught myself thinking I never wanted to leave.  If this was even a small glimpse of what Heaven will feel like, then I wanted to stay!!  I am not overstating my feeling at all here.  It was real.  My mind and my soul were at peace.  I’ve experienced the peace of God that transcends all understanding before, and this was it.  If you never have, it’s hard to explain, but you know it when you feel it.  I’ve held fast to these verses and I hope you will too.  Philipians 4:6-7  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus.  Upon leaving the church, the Bell tower rang twice.  Both Melinda and I were taken aback at the exact timing of the bells, and we both knew God was sending us each our own personal message.  What a gift we had been given that day.  Seeing that church was an answered prayer.

Ironically, my Facebook memory from 7 years ago that day, after just being diagnosed with cancer for the first time, just two weeks earlier, was this:  It is not God’s will for you to suffer, but in your suffering you can find God’s will.   And I believe I have.  It is sharing my journey with you.  What a gift I was given 7 years ago.  I couldn’t know then the extent of my journey with cancer, or with God for that matter, but I’m grateful for both.  This is one of those answered prayers I was talking about 7 LONG, treacherous pages earlier…lol!  And now, part one is complete.  See, God answered your prayer J

 

Part 2: Radiation and Infection…Again

Part 3: The Surgery that Wasn’t (and the Trial that might be??)