Saturday, February 19, 2022

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 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.

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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Sunday, November 15, 2020

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 9th 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??)                                                                                                      

Sunday, April 5, 2020

HOPE in affliction...


HOPE in affliction…
In this time of uncertainty, people are searching for HOPE.  We are seeing it in so many different ways, all across the world.  People helping people.  It seems simple enough, but right now I’m not able to help.  Me, the helper, the advocate, not knowing how to help.  I’m in that ‘At Risk’ category that shouldn’t be out in public, and that’s been getting me down.  But in the last several weeks I’ve had four different people comment on my past blogs.  This may not seem like a big deal, but I haven’t written in over a year, so I was a little surprised to see the notifications. It wasn’t just my blog though.  Someone also commented on a Facebook Live video that was taken of a conference speech from 2016.   It seemed strange to me that all of a sudden more people were finding me, and my past messages again.  They had to search to find them...and I’m so glad they did.  God works in mysterious ways, and this time HE seems to be working through Google searches and social media.  The comments, on both my blog and the video, filled my soul as I read how my message resounded with them.  Seems that I AM able to help, not physically, or in person (maintaining social distance and all), but through my words.  The comments revealed how my words had given them hope and helped them deal with whatever battles they or their loved ones were facing.  Then I realized that I needed a little bit of that help and hope again myself. 

After reading all the comments, I was humbled by their kindness, and replied with whatever resounded in my heart at that moment.  As I did, I noticed some past comments which somehow went unseen before, and I replied to those as well…some replies nearly a year late.  As I was writing to each person who had so thoughtfully reached out to me, I hoped that the lapse in my response wasn’t ACTUALLY a year too late.  Several of the comments were written by cancer survivors or their families.  I crafted my words, with prayers, that the recipient was still alive on the other end to receive it…a sobering reality in the world of cancer.   When I started writing my ‘blog’ (which is more the beginnings of my book than a blog), I never realized that my message would circulate around the world.  I wrote it with the intention of sharing with my family and friends the trials and tribulations of my journey.  The fact that God has allowed me to help others find hope in their own situation is not lost on me.  HE has repurposed my pain for the sake of helping others.  But sometimes, we have to help ourselves too.  And y’all are helping me do that!

I took the opportunity, after seeing the comment on my conference speech, to watch it.  I’m not sure I ever HAVE watched it, because I don’t like the way my mouth looks when I speak (a result of my tumor and treatment). I know that in the grander scheme of things that may sound silly, and maybe it is, but that’s just me.  As I sat in the comfort of my brown recliner and watched that 2016 conference speech on my phone, I had no idea the emotional journey it would take me on.  I saw a bold, confident woman up there, sharing both personal stories and medical information related to her disease.  I didn’t see the wonky mouth I so worry about.  I saw hope and faith, and the power of proton therapy.  It was like I was watching someone else speak.  When I watched that woman remove her palate obturator during the speech, tears started streaming down my face as I heard her powerful, bold voice become unrecognizable (like a deaf person trying to speak).  I couldn’t help but feel such heartbreak for her, because I realized that the woman whose speech I could no longer understand, was ME.  And even now as I write this, it brings me to tears.

I try to live my life so normally, that even though the pain from my disease is never gone, I tend to forget all that I’ve been through.  Or I prefer to, and CHOOSE to, remember what I’ve still got.  But there are certainly times, like some of the last month, and even many parts of the past year (if I’m honest), that the pain was overwhelming.  And I didn’t take the time to write about it.  Today I think God is using the power of my own words to motivate me to continue fighting, to not lose hope and to persevere, like that woman in the video.  If I can do that, then I will be able to continue sharing and helping others.  I think HE was ever so gently, but with authority, kicking me in the butt (I wanted to use another word here J).  God is telling me once again, to get busy, because my work here is not done yet.  Get writing.  Start sharing.  Be bold.  Your story matters.

Yesterday God was browsing Facebook with me (He was too!) when I came across a post from a dear friend, Jim Murphy, who some of you might remember me talking about in blogs past.  He showed me what it looked like to go through a cancer diagnosis and treatment with faith, courage and dignity.  He shot a commercial for the City of Hope Cancer Center a few years ago and has recently been diagnosed with another cancer.  His commercial from several years ago, was put in circulation again, and he was surprised to see it on his feed (like I was with my speech).  There was awesome footage of Jim on his mountain bike in the trails.  Jim never stopped riding during his treatment, even riding his bike to and from treatment (not around the corner either!).  All I could think about was the fact that maybe God wanted me to tell him what I had been feeling myself; that seeing your past self can remind us of how strong we can be.  I don’t know if Jim needed to hear that message or not.  Maybe it was just a Godincidence that the commercial recirculated now (like my video), but I wanted to tell him, that it’s ok to be momentarily weak.  Or maybe, that’s just what I wanted to tell myself.

A few weeks ago, on my daughter Meghan’s 21st birthday, I felt that momentary weakness.  You see, Meghan goes to school in Arkansas (Woo Pig Sooiee) and I wouldn’t see her on her birthday.  The last 2 years I’ve been able to see her the following week for Mom’s weekend and we would celebrate then.  But this year, a trip to the Bahamas for me (more on that later), and a trip to Austin for Meghan with her boyfriend Austin’s fraternity (of course when I wouldn’t be home) meant that we wouldn’t be together for Mom’s weekend.  I did what I could to make her birthday special, purchasing a fun martini cake for her and giving her money to go out with friends.   I even spent 10 hours (no joke) making a picture slideshow to music that I posted on Facebook. But my heart was aching inside that I couldn’t be there.  My heart was aching realizing that time, which is so important to a cancer survivor (well, anyone, really), has passed me by.  My little girl was a 21 year-old woman, but the mom in me wants to hug her like a 3 year old little girl. 

My friend, Alice, sends an email every day with different devotionals.  This particular day, on Meghan’s birthday it was about joy in suffering.  OK, I get it God.  It’s sad I can’t be there, blah, blah, blah.  Get on with it (me, not God!).  So, to take my mind off things I curled up on the couch with our bunny (yes, bunny!) and started to watch that week’s Greys Anatomy. That’s always happy, right?  Not.   As they always do, the narrator (Meredith this time)  proceeded to start the show by saying this:  “A survey says that a typical adult says ‘I’m fine’ 14 times in a week, but less than 1 in 5 of them mean it.  Our default is to put on a brave face.  But sometimes it’s braver to admit something’s wrong.  Because pretending everything’s fine eventually catches up to you…”

Wow!  I heard those words and felt like I had been slapped and dragged through the mental mud pits (and I’ve done Tough Mudder).  I started to feel the tears welling up and before I knew it they were rolling down my face.  So many times in a normal week I would say the same thing, “I’m fine.”  But all I could say right then, was “I’m not fine.”  Living with pain, day in and day out, is exhausting.  Life as I knew it has changed so much, and sometimes something like missing your daughter’s birthday can trigger other deep rooted emotions.   

To make a long story longer (sorry!), this past year has been extremely hard on me and my family.  To say that I’ve dealt with excruciating pain, would be a monumental understatement.  So many nights I’ve woken myself up moaning in pain.  So many 3am mornings, awake for hours, just waiting for relief that wouldn’t come.  So many times it was so hard for me to eat even the simplest of meals because I couldn’t open my mouth or even chew soft food.  So many times I felt like my brain was going to explode.  So many different pain medications, to get only minor relief.    Last year was hard.  And it’s OK for me to sometimes say, “I’m not fine.”  But do you really want to hear that from me?

I’m not fine.  Last year was hard.  We lost my mother in law on January 31, 2019, and as we were driving home from the hospital after she passed, we saw a huge sign on a building that said FINALLY.  Pain Free.  We had driven this route many times before, and I had never noticed it.  But this time God wanted us to see it.  Sheron had passed away, but FINALLY, she was pain free.  Her severe COPD could no longer cause her pain.  Her lungs were clear.  She could FINALLY breathe.  FINALLY!  I am so thankful for our God, who comforts us when we need it most.  Even if it’s from a sign on the side of the road.  I felt a wave of relief pass through me as I read that sign.  I think it was Sheron reassuring me that she’s OK.  Now, I could only hope that I too would be FINALLY, pain free.  But the doctors were going to have to figure mine out! 

I’m not fine.  Over the course of the past year I was also diagnosed with additional metastases to both my lungs, liver (again), sacrum (had to look that up) and presacral space (is that where your sacrum parks?!?).  I can joke about it now, but I remember getting a call last April from Leah (Dr. Hannah’s sidekick) with the CT results which confirmed the lungs and liver were indeed ACC.  I was so surprised.  I thought I had opted out of the lung mets portion of this disease.  My liver was the problem, not my lungs.  Most people get either/or, not both.  I couldn’t believe what she was telling me.  For a moment the fear and doubt just overwhelmed me and I couldn’t do anything.  Luckily, Molly had to leave for dance while I was on the phone outside.  I just cried, came inside and turned on the television.  I don’t even think I was watching really.  I just needed a distraction.  Will was grocery shopping when I called to ask when he would be home.  He asked if everything was alright (remember our song…Everything’s Gonna Be Alright?).  He could hear the tears through my voice and I simply told him “no”.  I don’t remember what else I said, if anything, but he headed home, hugged me and we both just cried.  The television, that I hadn’t really noticed until that moment, showed a father walking his daughter down the aisle at her wedding and I lost it.  Once again, like that first diagnosis on May 2, 2013, fear made me wonder if I would be there to see Will walking Meghan and Molly down the aisle.  For an instant I let that doubt and fear consume me.  I was wondering if this time I wouldn’t be so lucky.  But I was quickly reminded that we have a great God who hasn’t let me down yet.  There is no ‘luck’ with God, just HOPE, and I musn’t lose hope. 

The timing of this diagnosis was terrible...but when is it ever good? It didn’t fit in well with my social calendar. I was about to leave the next day for my 50th birthday trip to Vegas, with one of my best friends Shelly, whose 50th we would also be celebrating (don’t tell her I told you!).  Even through the turmoil of the newest diagnoses, there was not one moment that I considered canceling the trip.  Will agreed that I needed this trip; to go have fun, to get my mind off doctors and cancer.  We decided not to tell the girls about the newest diagnoses until we had a plan. Funny, it’s almost a year later and we still have no plan.  But obviously the girls know.  And, God’s working it all out in the background.  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.  (This is my life verse)

I went on that trip with Shelly, and it was the best thing I could have done.  After Vegas, I drove back to CA with her and stayed for a week.  On May 2, 2019 (the anniversary of my first diagnosis and Shelly’s 50th birthday), we ventured around LA with Deb (another one of my dearest friends).  I can’t say I didn’t think at all about the diagnosis I had been given a few days earlier.  But when Deb switched the radio, I smiled an ‘A Ha’ smile, as I heard the words, “It’s your breath, in our lungs, and we pour out our praise…” God’s got this.  Great are you Lord.  It’s HIS breath in MY lungs, and yes, I will pour out my praise to Him for reminding me of that.  There may be cancer in my lungs, but His breath is stronger than any cancer.  Like Sheron, I could FINALLY breathe realizing this.

When we got to the top of the US Bank building, which we decided on after another plan got foiled, I was shocked to see HUGE angel wings painted on the side of the building, just waiting for us to take pictures (I LOVE PICTURES).  There was God, once again reminding me of His faithfulness (remember Guardian Angel Catholic Church?).  As I saw two of my very best friends pose against those angel wings, I realized that they, too, are my guardian angels protecting me and loving me on this journey.  There is a host of both heavenly and earthly angels that continue to watch over me and help me.  And I would certainly need them to help get me through what would be a very hard second half of 2019.

 In between all the appointments for pain management, and the back and forth with Infectious Disease, I was prepping for a clinical trial specific to my cancer(Adenoid Cystic Carcinoma).  I had been waiting and praying for so long for something systemic that might help treat the cancer, and here was my opportunity…FINALLY.   The trial, a combination of Axitinib and Avelumab, has shown promise in helping to stabilize ACC.  Every time stabilization has been the goal of one of my treatments, my cancer has gone away!  So, I’ll take stabilization and be thankful for anything that can keep the cancer from growing.  Dr. Glisson had run the litany of tests to preauthorize me for the trial.  I had the scans and the bloodwork.  I had filled out the paperwork.  I had signed my life away (LITERALLY!).   I knew that I could get off the clinical trial train at any time, so what did I have to lose?  Well, as it turns out, it could have been a lot!

I was set to start the trial on 9/24/19, after having one last appointment with my oncologist (Dr. Glisson).  I had mentally prepared for this day.  I was IN.  I was at peace with my decision to start the trial.  The fear of the unknown was gone, and I was 100% ready.  I had that peace that surpasses understanding.  I would head to the infusion area to start the immunotherapy portion of the trial, as soon as that appointment was over.  But as we were talking about my A.M. scans, and she answered some further trial related questions, I heard her say the words, ‘bite the bullet’.  She was referring to the fact that this study could lead to increased osteoradionecrosis, due to the blood vessel inhibiting feature of one of the drugs.  That could then lead to a massively debilitating surgery IF I were to have any further bone loss.  This wasn’t new information to me, but it was the way she said it that made me pause this time.  The brakes had been slammed on my 100% certainty, and all I could feel was the hand of God on my shoulder telling me “No.  Do not start the trial.”   I told her that I wasn’t ready.  I thought I was, but now I wasn’t.  She told me she understood, but said, “You’re going to expire in 2 weeks.”  She was referring to the pre-authorizations, of course, not me…LOL.  I was having to come back in a week for more appointments, and I told her I would start then.  I just needed to pray more and re-boot.  I’d need that boot to kick cancer’s ass again, right?! 

As I was about to leave, I was holding the right side of my face, as I often do because it helps calm the pain.  She moved my hair to the side, which typically covers the side of my face, and she expressed concern for the deep purple tone.  I had been seeing pain management, and infectious disease, so I really didn’t waste my time discussing it with her on other previous appointments.  We had more important things to discuss, like saving my life.  I told her what’s been said and done about it by the other 2 factions, but she said that she wanted the radiologist to dig deeper into the MRI I had that morning.  It looked extremely concerning to her.  Not even an hour later I got the call that he had indeed found infection deeper in the scans that wasn’t evident on the surface.  Had I started the clinical trial that day, it could have had severe long term consequences for me.  God, when he made me pause, saved my life (again!).

For me to recount further the litany of appointments and diagnoses from last year would take another 3 or 4 pages, and I’m already on page 5(!!).  But I will tell you that the majority of my deep-rooted pain WAS from an infection…or two…or three, that went too long without proper diagnosis.  This is a reflection of one doctor, and one doctor alone (in Infectious Disease) that refused to listen to what I was saying.  Luckily, that doctor is no longer a part of my care team or MD Anderson.  But I had pain so bad I couldn’t eat; I couldn’t open my mouth.  My face felt like the hardened stone of a concrete statue.  My jaw/cheeks felt like a fire was blazing throughout, and the deep purple of the flames were protruding through my skin.  That same purple skin so sensitive that even the soft touch of a sweeping feather would make me drop to my knees in pain.  Shooting ear pain every few minutes, sharper and deeper than your worst dental nightmare.  Pain in the back of my head, behind my ear, that felt like a ticking time bomb in my brain about to explode.   Pain meds, acupuncture, cbd/thc (that’s a really funny story on its own – my next blog) and even a nerve block, which hurt like hell (pardon my French), didn’t help. 

No, I wasn’t fine.  After I had been on antibiotics for a week (for the umpteenth time that year), I sent my new ID doctor a picture of my skin and was happy to inform him that I was already feeling better.  Things were looking up!  Dr. Torres unfortunately, completely disagreed with me, and told me I needed to go to the ER the next day.  The concoction of 3 different drugs weren’t doing enough.  That next morning, after stressing all night about what was happening to me, we drove to the ER at MD Anderson in Houston (3 hours away).  I assumed I would be there a night, they might fill me up with IV antibiotics, and I would go home the next afternoon.  But things were worse than we thought, and one night turned into five.  They sent me home, on a different regimen than before, and I just prayed it would work.

Will, who is almost ALWAYS with me, was out of town for my next follow up, so my dear friend Stacy went with me.  I only had one appointment, it was routine, and would be quick.  She and I would enjoy chatting for the 3 hour drive to Houston, then, after the appointment, we would go to Rice Village, enjoy a leisurely lunch and shop in the cute, little boutiques.  We would be home in plenty of time for her 6 o’clock meeting.  Unfortunately, our plans got foiled, our lunch got spoiled, and I ended up in the ER/hospital once again for infections that were so bad they used the words ‘life threatening’.   Stacy was an angel, another one of my precious ones on earth, that refused to leave my side.  I told her she could drive home; that my parents could get me the next day (or whenever they decided to let me go).  She called her husband, who was also adamant she stayed with me.  Neither of us were prepared for an overnighter, but Stacy headed to the gift shop and bought us matching alligator pj’s (I hate hospital gowns) and some necessities.  We made the best out of it, playing with SnapChat filters and laughing so hard it almost seemed inappropriate for the ER/hospital J 

I ended the year on portable IV antibiotics (that Stacy had to learn how to change) at home for 6 weeks, along with 2 other pill antibiotics, and a multitude of pain meds.  I had osteomyelitis, cellulitis and some other infection (probably also ending in ‘itis’).  The infections were indeed the culprit, causing much of my pain, and as the IV began its work, I felt much of my pain and worry fade away.  The six weeks leading up to Christmas, were still filled with holiday preparations and parties (I love to have fun and no IV was going to stop me).  For the most part, life went on as we had planned.  But remember that trip to the Bahamas (I talked about it an hour or two ago…lol)?  Will and I were supposed to go in December to celebrate our 25th anniversary.  It would have to wait.  I was so upset, but then again, happy to be alive.   We rescheduled for my birthday in March.

The IV was really quite fascinating; it was a ball (no ball and chain jokes, please) that I could hide in the sleeves of my big, comfy winter sweaters (good thing it wasn’t summer) or inside a little purse hanging at my side.  It was hidden so well, that unless I rolled up my sleeve, you wouldn’t even know it was there.  A nurse came weekly to change the dressing, but it was up to one of my family members (usually Will, sometimes Molly) or friends to change the IV daily.  Meghan, who was home for Christmas, was forced to change it for me one day.  She turned sheet white and started sweating.  Good thing she’s a Finance major, not pre-med.

I went through the holidays with our extended family in town and felt better than I had all year.  By the time the IV was ready to come out, I felt like new life had been breathed into me.  He’s the breath in our lungs…I can still hear the song playing in Deb’s car.  The antibiotics had done their job.  My scans this past January showed no signs of infection.  For several weeks I was able to eat, drink and be merry.  My trismus had improved, and my jaw pain better.  I ate, and ate, and ate J And gained ‘ate’ pounds…ha ha.  I was fine.

I started the new year eating healthier and going to the gym.  I hadn’t been able to work out most of last year due to the pain.   2020 was a new start for me.  But as the days and weeks passed by, the pain started to creep up again.  That familiar piercing ear pain had returned, as did the jaw pain that made even eating mashed potatoes near impossible.  We were just weeks away from our Bahamas trip on 3/2, when I reached out to ID again, explaining the symptoms, that I knew to be infection.  Seven years of cancer has created in me a keen sense of my body awareness.  They were reluctant to believe it could be infection, as it didn’t show on my last scan.  But the infections didn’t show on scans most of last year either, until the osteomyelitis appeared later in the year.  I asked if I could take some of the leftover amoxicillin (that they had taken me off to be replaced with stronger meds).  They said it wouldn’t help.  But early in my journey last year, it DID help when my ENT had prescribed it. Normally I would never take something I wasn’t recently prescribed.  But here was the dilemma…we had a prepaid, all-inclusive trip to Sandals, and that meant lots of eating and drinking to be had!  Now, I shouldn’t admit this, but I took the amoxicillin.  And I got better.  We went on that trip and celebrated our anniversary and my birthday in grand style.  I’ve since gone off the amoxicillin, and some of the pain has returned, but not as bad as before the trip.  I’ve continued working out, participating in a challenge to walk 200 miles in 90 days.  I read the Bible in 90 days years ago…200 miles will be a breeze in comparison! 

Next time you ask me how I’m doing, I may smile and say “I’m Fine”, but I may really be wanting to cry out to you, “I’m NOT fine.”  And I know that’s OK.  For so long I was so strong, but it’s OK for me to show when I’m weak.   2 Corinthians 4:17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.   Sure, the pain of cancer can get me down (regardless of its source).  The new ‘normal’ of self-isolation and quarantine from the Corona Virus can get me down.  Not being able to see my friends, who are my angels, can get me down.  Having my daughter so far away in Arkansas can get me down.  Knowing Molly won’t get to go to school or prom because of Covid 19 can get me down.  Yes, I get down.  I’m human. But then God will send me a sign.  And this time that sign is you.  Things are looking up.

As I look back at the comments on my blogs or videos, I forget my pain.  God reminds me how sharing my story might bring someone else a spark of hope.  So many times over the last several weeks that’s been made clear to me.  Just today, as I came close to finishing this blog, a new comment popped up from a man who has ACC (my cancer), now lives in Texas (where I live), and who has been looking for a sign of his own.  Then he found my “Here’s Your Sign” blog. If that isn’t God working, I don’t know what is.  I’ve been looking for a sign too.  And it’s been the many people commenting and reaching out to me lately, that were my sign to keep writing.  Writing heals my heart and eases my pain.  Sharing my story, the good, the bad and ugly cleanses my soul.  It reminds me that HOPE brings light.  I need to remember to be my own light sometimes too.  I’m proud of the lady in that speech who shares her journey with the world.  As I finish this, my tears are now of joy.  Her journey brings me hope.  I pray it does that for you too.  Romans 12:12  Be joyful in Hope, patient in affliction, faithful in prayer.   

On this Palm Sunday, may you and your family be filled with the HOPE that is alive in Jesus Christ.  As he entered Jerusalem amidst people laying down palms, crying out ‘Hosanna in the highest’, He knew what would happen that week.  He knew he would be betrayed, be sacrificed and would rise again.  And he went willingly…FOR US.   That’s how much HE loves us.  HE thinks we are worth it.  Remember, there is always HOPE, no matter how bad things seem, that’s alive in HIM.  God Bless you as we enter this Holy Week.

Cathleen McBurney  (April 5, 2020)