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 21^st 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 50^th birthday trip to Vegas, with one of my best friends Shelly, whose 50^th 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 50^th 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 25^th 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)