It’s Been A Tough Few Days
South Padre Island.
We’ve been a bit quiet lately as we’ve been dealing with a few challenges. I’m not going to beat around the bush, so to speak, but jump right in and save the more personal note for later in the update.
Rex and I both tested positive for COVID on July 27th. Fortunately, we both had milder cases and were treated with different processes. He received antibodies at MD Anderson and did exceptionally well! We both lost our taste and smell and had a lot of fatigue, but we managed and made the best of it for the most part. Needless to say, this caused his chemo treatment to be postponed. Here is the text he sent to his family to share the news:
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Dear family,
As you know, I did my bloodwork yesterday ahead of my scheduled chemo treatment tomorrow. Unfortunately, my CA 19-9 cancer marker number increased 38% to 83,260. As a reminder, it had increased by 18% when I had my bloodwork done about two weeks ago (from 51,100 to 60,460). Therefore, Dr. Wolff has recommended adding an additional chemo drug to my treatment to try and get my tumors under control.
I also learned this morning from MD Anderson that I have tested positive for Covid, which complicates my situation further, especially since my treatment schedule will have to be suspended indefinitely until my condition has stabilized. On a positive note, the only symptom I have experienced so far is periodic coughing when I lay on my back at night. I haven’t lost my taste or smell, and I don’t have a fever. Nevertheless, they sent me to an isolated wing in the hospital’s Emergency Room this afternoon, where I am currently writing this message, to monitor my condition closely. Hopefully, I will recover quickly (preferably getting released sooner than later to do so at home). However, if/when I am able to go home, I will have to stay quarantined from Sherry (she has also tested positive), which is the absolute worst part of this whole situation. We have two bedrooms/bathrooms in our apartment, so at least we can still live together under the same roof. I’m sure Sherry will welcome the respite from me stealing the sheets while I paw at her throughout the night (not to mention my periodic “symphonic interludes”)! Thank you for your continued prayers! I will keep you posted! Sherry and I love you all!!!
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Just another opportunity to make some more new friends! In fact, pretty cool that one of my nurses today is named Holly (see screenshot below)! Please know that all of you are close to my heart!!! And God is right here by my side!!!
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Update………
They took an x-ray of my chest. And just finished giving me (by drip through the port in my chest) a Monoclonal Antibody Infusion called CASIRIVIMAB-IMDEVIMAB that blocks the spike protein of COVID-19 to prevent serious respiratory complications (see information in screenshots below). They will continue to monitor my vitals over the next couple of hours and make sure I don’t have any major reactions to the drug. And then, assuming the x-ray does not surface anything of concern, and despite everyone wanting me to stay and hang out with them, they will let me go home. I hope so. Because it’s Friday night!!! And it’s time to be “Livin’ It Up”!!!
Click on the link below to enjoy a Bell & James blast from the past!!! You’re welcome!!!
Sherry and I love you all!!!
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Numerous YouTube videos of songs were exchanged here (Livin’ It Up, Brick House, Disco Inferno, Soul Train Line Dance).
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Great songs! Love it! Made me dance in front of the sliding glass door they keep me locked behind! I made sure to spin around and expose all the glory behind my open-backed hospital gown for everyone on the other side to enjoy!!! I think they are actually going to send me home early!!!
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Update:
Good news. I have been discharged from the ER.
Bad news. My ears are now completely stopped up. And I just ate dinner and discovered that I no longer have taste or smell.
Good news. I am taking this as a positive sign that the Covid is working its way through my system.
Bad news. It is doing the same with Sherry, so we both bid adieu for the next seven days, wished each other well, and retired to our separate rooms (at least we can FaceTime each other as we watch Netflix each night).
But the final word. And the ultimate GREAT news. I am home! I have an amazing wife! A loving family! And, most important, an AWESOME GOD by my side!!! Good night everyone!!! Sherry and I love you all!!!
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Rex and I spent the next couple of weeks in separate rooms even though we were both positive. Not knowing how this virus ultimately works, we didn’t want to take any chances. I did get my taste and smell back within about five days, and Rex’s is returning a little more gradually. It is a crazy ordeal, but we are extremely thankful for the stellar treatment we received. We both rested a lot and watched countless episodes of various Netflix/Amazon Prime shows “together” from our separate rooms.
We were both hoping chemo treatment would resume on Saturday, but there were some logistical issues at MDA, and it had to be postponed. Rex still had his blood work done in preparation for treatment which, unfortunately, led to him needing to get another CT scan. He sent the text below to update his family:
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I just received a text from Dr. Wolff. Due to some logistical challenges with Covid requirements and it being the weekend, my chemo treatment has been moved to Monday. In addition, he texted me….
“Your scan is worse but not as bad as the marker would suggest. Pancreas tumor bigger and liver spots slightly bigger with some small new ones seen. That was a quick read on my part.”
His reference to CA 19-9 marker number is that it went up to 149,200 from 83,260 in my bloodwork this past week. Will keep you posted.
Sherry and I love you all!!!
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That CA 19-9 marker number increase knocked the breath out of us both. As I’ve stated before, a healthy person’s number is below 40. Granted, his number has been pretty erratic since the beginning of this journey, but never like this. He had been feeling really good for the most part, and his pain had been manageable. Combined with the amount of rest we have gotten lately, we truly believed his number was going to come down drastically. But going up to 149,200??? How could that be? Rex sent the following text to his family:
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Wanted to give you all an update….
After texting back and forth with Dr. Wolff all morning, I can share that my next chemo treatment is now scheduled for 10:45am this Wednesday, 8/11. I don’t know yet if Dr. Wolff will be adding an additional chemo drug to my treatment. He hasn’t confirmed this, but I believe he is wanting to get the results of some additional lab work he has scheduled for me to get done at 9am Wednesday (although I am trying to get them to change the lab work appointment to tomorrow late afternoon to give us more time to digest information).
Thank you for your continued prayers. I am feeling good. Although, the pain related to my tumors has unfortunately intensified and become more frequent. Will keep you posted. Sherry and I love you all!!!
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So that is where we stand at the moment. The return of the pain is concerning. And while there is a “pain blocking procedure” option we have previously talked about with Dr. Wolff that we may consider soon, balancing the quantity of life decisions with quality of life realities can be complex.
On a personal note, I’m struggling—a lot. I’m not sharing this for any other reason than to be completely transparent with all of you. Everyone always asks me how I’m doing, and for the most part, I am good. I know I have to take care of myself as I can’t pour from an empty cup. But friends, this is a gut-wrenching journey for even the strongest of souls. I’m in several Facebook groups for Stage lV Pancreatic Cancer, and it has been an amazing resource. Patients (or their caregivers) battling this cancer have shared things they have experienced, tips and tricks on handling different chemo reactions, possible red flags to look for, etc. So there has been a tremendous amount of good to be found there, but like most things in life, there is a flip side to it as well. The stories about how things can turn quickly with this cancer is terrifying.
But my faith has not wavered. I know Christ is here in the fire with us. I pray for a miracle. I pray for the science to catch up. I pray for the pain to go away. I pray for the numbers to come down. I pray for life to be normal again. I pray for complete healing and restoration for my sweet husband. I pray to not be afraid. Is God even there??? Does He hear me? Is He even listening??? The answer is a resounding YES! I know HE IS, and HE DOES! In my times of questioning, darkness, and never-ending tears, I know it is the enemy using my pain to try and separate me from Christ. I will not give him a foothold. My God is good. He is a healer. He is a way maker! Will He give us a miracle? I don’t know, but I will believe and never stop praying for it.
Rex and I often say that our time here on this Earth is nothing more than a vapor. We know how the story ends and that we will both spend eternity in Heaven together praising Christ. There is a reason for our pain and struggle right now. We live in a fallen world. I may never know or understand why this is happening to the man I love more than life itself. And I will no doubt be too mesmerized when I am in the presence of Christ to even ask Him what it was all for. None of this will even matter. We will all be made perfect. No pain. No sickness. No tears. There will be beauty from the ashes.
On August 8th, we celebrated our 16th wedding anniversary. I made a Facebook post that I would like to share with those of you who may not be on social media.
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Wow… I’m just a crying, babbling mess today. Sixteen years ago, we said “I do” on Polo Beach in Maui. I was terrified. Not because I didn’t love this man with all of my heart, but because I was scared of failing him as his wife. I knew I had more than a boatload of baggage that had yet to be unpacked and dealt with, and pre-marital counseling had barely even touched the surface. But after seven years of dating, we knew we didn’t want to ever be apart, and it was time for the next chapter.
My life changed on the beach that day.
I have never met anyone with more unconditional love, patience, loyalty, and honesty…. ALL of the things we dream of in a spouse. He taught me how to communicate. How to self-reflect. How to face conflict and not run and hide from it. He has taught me to take risks, get out of my comfort zone, and to really experience what life has to offer. Go to far-off places. Eat the weird food. Listen to Gregorian chants if you can’t fall asleep. He taught me to laugh at myself… and his jokes! He has loved me on even my most unlovable days. He has forgiven me when the old unhealthy habits have reared their ugly head. He had called me out when I deserved it. Not to shame me, but to help me grow and be a better person. He has cherished me, honored me, respected me, and loved me like the daughter of Christ I am.
Rex Rust… I absolutely adore you! I thank God for the day we met back in 1998 and for every second since then. The day I became your wife is the greatest gift I could have ever dreamed of. Thank you for being an incredible husband, best friend, and leader of our family. You are a warrior and a man after God’s own heart. I love you. Happy Anniversary handsome! You are my world!
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To continue this shared “love of the beach” theme from our wedding, Rex and I were able to take a short road trip to South Padre Island last month for some much-needed time in the surf. It was such a wonderful getaway for us! There is something about the beach that soothes the soul like no other place can. God’s creation is breathtaking. On our first day there, we were in the water, and two dolphins showed up swimming less than 20 feet from us and continued back and forth for about 15 minutes. It felt like God sent them to assure us of his presence. It was a beautiful moment.
On our way down, we stopped in Corpus Christi and toured the USS Lexington. Definitely, a recommended stop if you’re ever in the area!
We returned to Houston refreshed, and our friends Sandra and Mrs. Gloria treated us to an authentic, homemade El Salvadorian meal. It was delicious. Those two and their extended church family have been such a blessing to us on this journey, especially during those times we must endure heavier doses of reality. Such as today. Rex’s blood work from yesterday came back this morning, and his marker number was not good. It has risen even more to 162,400. And sealed Dr. Wolff’s recommendation to add yet another chemo drug to the 13th round of treatment. Rex completed this afternoon and is now home in bed, recovering while I finish this post.
Here is the text Rex sent to the family this morning:
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Thank you, everyone. I have chemo treatment this morning at 10:45am. I got lab work results back, and my CA 19-9 marker number went up again to 162,400. So Dr. Wolff is removing the immunotherapy drug Nivolumab (Opdivo) and adding the chemo drug Cisplatin to my cocktail today. I will also still be getting the Gemcitabine plus Abraxane chemo drugs, so the overall infusion time will take 6 to 7 hours. Thank you for your continued prayers. Sherry and I love you all!!!
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In light of this news, I wanted to add one more thing before wrapping up this post. As most of you know, Rex is almost always smiling, dancing, making jokes, laughing, and making friends wherever he goes…. all of the things that make him so unique. But if you have spent time in a cancer center, you know it is where hopelessness relentlessly tries to make a permanent home in people’s hearts and minds. Understandably so. Individuals are hurting and tired. And the staff often gets the anger and despair of their patients taken out on them. Not that they deserve it, but many patients have little to no hope left to cling to. They are tired of being sick, being stuck, disappointed in what the latest scan shows, and not getting better.
Which makes me praise God that much more for wiring up Rex in such a unique way for such a time as this. I love watching Rex, when I have been allowed to join him, walk into MD Anderson like a big ball of sunshine! His smile lights up the room, and he speaks with everyone he passes by. He lifts up those struggling to get through another day, be it a 10-hour shift or a patient getting chemo or more testing done. He talks to them and gets their story. He is such a good listener. People feel his genuine concern and authenticity.
He does the same outside of MD Anderson as well. An example being a simple phone call we had with a Bank of America employee yesterday. The lady helping us had had a rough day. I’m sure dealing with the public regarding finances is pretty challenging on even a good day. We were her last call of the day. She was asking us the normal questions as we were going through the process, and when she asked Rex what his occupation is. Without pause, he blurted out that he was recently “encouraged to retire” from being a Chippendale dancer after being reprimanded for wearing his clip-on bow tie in the wrong place one too many times. The laughter on the other end of the phone was priceless! After she composed herself, she told us that it had been a really rough day for her, and the call with him had made it better. She said her ten-year-old daughter was by her side (wearing a full face of Cruella Deville makeup), waiting with anticipation for mom to be done with work so they could enjoy “Taco Tuesday.” We could hear her smiling on the other end of the line as we said our goodbyes and imagined them having the best Taco Tuesday ever!
Rex truly strives to treat all people like the children of Christ that they are. He knows we all are fighting battles on a daily basis. They may look different on the outside, but they are hard for each of us, just the same. I love him and his genuine love and concern for others. Thank you, God, for your gift!
Rex and I are grateful for each and every one of you! And we truly appreciate your continued love, prayers, and support on this journey. Please know that our prayers are also with you as you continue to fight the good fights in your lives! God is with you! We love you all!
Verses:
Isaiah 61:3 NIV
The Spirit of the Sovereign Lord is on me,
because the Lord has anointed me
to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
to proclaim freedom for the captives
and release from darkness for the prisoners,[a]
2 to proclaim the year of the Lord’s favor
and the day of vengeance of our God,
to comfort all who mourn,
3 and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the Lord
for the display of his splendor.
