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 1st, 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 4th grade Science, or was it 5th, (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.
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.