Things have definitely been rough lately. The punches have been coming at us like a prize fighter in a championship title round. I admit, we are a little beaten up, but we are still in the ring! Life’s issues don’t take a break when you receive a cancer diagnosis. You just now have that disease on top of everything else that we all deal with on a daily basis. Bills continue to accumulate; work still needs to be done; relationships can completely fall apart … the list goes on and on. The stresses of life can be fierce. And lately it seems that satan is working overtime with all the arrows he is shooting at us right now. But we are aware of his mission and will not be defeated. Discouraged at times? Yes. But never defeated. God’s amazing grace has assured us of that! 

 

“Finally, be strong in the Lord and in his mighty power. Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore, put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.” – Ephesians 6:10-18

 

Rex has continued to be incredibly positive and is letting God’s light shine bright throughout this journey. His spirit and determination always inspire me. Especially over the last few months. Last week, we found ourselves having to fly back to MO on a moment’s notice to take care of some things that couldn’t wait. It wasn’t the ideal time for him to travel, as he still wasn’t feeling well from the last treatment, but he felt we had to go, and so off we went. Our friend, Jack Oliver, was in NYC but insisted on canceling his meetings and flying back early just to drive us to Cape (120 miles south of St. Louis) and spend some time with him. As you may remember, Rex and Jack have been best of friends their entire life. Jack was Rex’s best man in our wedding and his wife Rachel was my maid of honor. They are truly family to us.

 

While we were in Cape, Rex developed a blood clot in his left leg. We were taking care of some things at his office when I noticed his ankle was extremely swollen. He had been having pretty intense leg pain for a few days, but his oncologist thought it may be something called a “bakers cyst” and told him to keep an eye on it and watch for redness and swelling. So naturally when I saw the swelling, we immediately took a picture and texted his doctor. Dr. Wolff was overseas treating a patient and was getting ready to return to the U.S. He told Rex to elevate his leg for a bit and if the swelling didn’t go down, he wanted him to go to the local hospital and have a Doppler Ultrasound, especially since we were scheduled to fly out the next morning.  Saturday night we went to the ER. The ultrasound confirmed he did in fact have a blood clot. They immediately put him on blood thinners and grounded him. No flying permitted. Not the best of news, but I was incredibly thankful that the clot was caught in time. Otherwise, it could have been a pulmonary embolism. And that could have taken him suddenly. 

 

So there we were, stranded in MO but needing to get back to Houston in time for chemo on Tuesday at 7AM. We knew we had to make the 11 hour drive, but we had no car. And if you’ve ever tried to get a rental car in Cape Girardeau on a Sunday, well, you know it isn’t possible because they are closed on Sundays. But help was on the way! Jack Oliver to the rescue… again! Saturday night Jack told us to reserve a car in St. Louis and he would drive it down for us Sunday morning and take an Uber back. We are talking a 120 mile Uber ride. Not to mention taking 4 hours out of his day to be on the road. What an incredible thing to do. Words cannot describe how amazing Jack, Rachel and their entire family have been to us throughout this journey. They have loved on us and been there consistently through it all.  Jack showed up in Cape at 10:30AM on Sunday morning with the rental.  We visited briefly before his Uber showed up and then we were all on our way by 11AM.

 

We drove halfway back to Houston and stopped in Texarkana for the night. We had just watched Smokey and the Bandit a week or so ago, so Rex felt that was the obvious stopping point for us! lol. The doctor had told us we needed to stop every hour or so on our trip for him to get out and move around a bit and they didn’t want him in the car for more than 5 hours at a time, so we took our time heading back. We finally made it back to Houston around 2PM on Monday afternoon and went straight to MDA for blood work (which is always required before chemo). We were exhausted from the trip, but glad to be home and needed to put on our game faces for another round of chemo bright and early the next morning.

 

At 1:47AM Tuesday morning, Dr. Wolff texted us and said he was canceling the chemo because of the lab results. Rex’s cancer marker was on its way back up (94,800 vs 72,970 on 10/17). A normal range is 40 or below. But more concerning was Rex’s liver number. That was at 613 and had been 430 on 10/17. The normal range is 129 or below. Dr. Wolff has always told us that it is usually other things besides the tumor that get a person into trouble (blood clots, liver failure, etc). The liver is working so hard with all of the poison being put into his body and it can only do so much. The cumulative effect of 9 months of chemo has really taken a toll as well. So with the cancellation, Dr. Wolff said he wanted to do another CT scan and go from there. We went to MDA on Tuesday evening for the scan. As Rex checked in, he was told that the insurance company hadn’t approved it yet, so he couldn’t get it. We returned back home. No scan. It was a little frustrating. Especially since he couldn’t eat anything for three hours prior. But sometimes you just gotta smile and roll with it. And that’s what Rex does! The next day we were notified that the scan was rescheduled for that evening at 6:35PM, so we followed the same protocol and showed up just as before. Rex has a port and they use that for his CT scans. Well, not this time. This nurse stuck him three times trying to get it where he needed it in the port before giving up and trying his arm… only to fail there a couple of times as well.  He finally called in another nurse to do it for him. This was just another frustration and being tired and hungry didn’t help. If you recall my previous entry about being nibbled to death by a duck, well there was a lot of nibbling going on! lol.

 

In a moment of reflection, I found myself thinking about all of the people in the world that have received the horrific diagnosis of Stage lV cancer. I looked around the room at MD Anderson as we sit anxiously waiting for Rex to be called back and wondered what everyone’s story was. Some are here with their spouse, adult child or friend. Some people are here alone. I hear people having conversations or watch them scrolling quietly through their phones. Even though we may all seem so different, I know we are the same as we sit there in this boat on the rough sea of anxiety.  Some people have hair. Others none. Some have ports, while others have tubes dangling from their arms. Some are covered in blankets, others sitting in wheelchairs, most sipping a contrast mixture in preparation. I overhear a son telling his dad he is going to text him his online passwords to all of his accounts… you know, just in case.  His dad is sitting beside him, looking at him with so much love and grief showing as he says… “that’s silly!  You’re going to be fine!” All the while all of us know we don’t know that he’ll be fine. The odds are against every patient in that room. Yet God’s presence is strong within those walls. 

 

And then there is my husband.  Bouncing into the waiting room like a giant ball of light! The Astros were playing the Braves in the World Series and there happens to be one television in the entire huge waiting area. Just below it is a BIG sign that read “DO NOT CHANGE THE CHANNEL”. So Rex starts taking a survey of all of the patients to see if they would like to watch the baseball game. No one objected and he walks over to the counter to ask the nurses if they could turn the channel to the game. They agreed. More and more people started to gather around the television; and I think everyone forgot for just a few minutes why they were there. We were all swept away to Minute Maid Stadium, just a few miles down the street, and watched America’s sport as it transported us away from the waiting room. What a delightful, and much needed distraction for all of us. But that is my husband. Let’s take these lemons and make some lemonade. So we did. And everyone loved him for it!

 

The nurse finally called Rex back for the scan. As I sat there with everyone watching the game, I was so excited to see him when he came out 45 minutes later to tell him the score. But he wasn’t the same. He had pain in his eyes. He was hurting. Not only physically, but emotionally. I could see the tears he was trying desperately to hold back. The stillness of being in the machine with nothing but time to think can take a toll. Just like all of the sleepless nights he has. The silence can be deafening. No one there but you with your thoughts. Going over situations, conversations with people that have hurt you, wanting to make sure I will be okay if he’s not by my side, coming to grips with where you find yourself. It can be overwhelming and gut-wrenching at times. My heart was breaking for him. All I could do was wrap my arms around him as we raced to our car parked on the 4th floor of the parking garage. He was trying desperately to hold it all together. But sometimes you just need to let it out. Cry, scream, break something… whatever it takes. Just get it out. Yes, even warriors fall to their knees in anguish. He stays so strong. I know his faith in God is solid, but no one can not feel the stress from this journey all of the time. It is a devastating one. I constantly pray for God to take this cup from him.

 

On Thursday we met with Dr. Wolff in the afternoon to go over the results of the scan. While we were meeting with him, the radiologist called with the CT results. The tumors have increased in size and there is also evidence of bile duct backup and/or leakage. The bile issue explains why he is having more stomach pain and problems with food again. We have been very fortunate up to this point that he has had a very good appetite and has been able to keep his weight steady. But, with that said, the pain he is feeling after meals is making him scared of eating. The pain is very intense. Another terrifying thing revealed in the scan were several small blood clots visible in his lungs. Thank the good Lord above that he didn’t have an embolism and these are now less of a concern (thank you blood thinner). Dr. Wolff suggested a medication to add into his daily routine to hopefully help with the bile duct issue. He showed the scan to the surgeon who may have been able to place a stent in the ducts to keep them straight and clear, but as he put it “they were like worms. Twisting and turning everywhere” around the tumors, so surgery wasn’t an option, as it could be fatal. We discussed treatment going forward. The plan is to check his labs again on Monday. If the new medication is able to bring his liver numbers down, Dr. Wolff may have Rex go forward with one more dose. If not, we will be looking at experimental drug options. Those are typically oral, but that is about all we know at this point. His labs will need to improve before he is able to try those as well.

 

You may recall I had mentioned Rex had a “nerve block” procedure done a month or so ago to help with his pain. This procedure was supposed to make a world of difference and hopefully get him off pain meds. Although it wasn’t a permanent fix, it will typically last for 3 or 4 months. Well, unfortunately, it didn’t work at all for him. And now, his pain seems to be on the rise. And the meds aren’t covering the pain for the length of time they once were and this will need to be addressed soon. I can’t watch him battle the pain. There has to be other options that will work better for him. Fatigue is also still a major battle. He spends the majority of his time in bed resting and I am typically right there by his side. We are so thankful to have this beautiful, bright apartment overlooking the city. There are so many windows and the light is just what we need. You will always find me by his side with the exception of going to the grocery store or running necessary errands. We watch a lot of Netflix and Prime and are so content just being together. My love language is quality time, while Rex’s are words of affirmation and physical touch. A great combination that God has especially blessed us with this time together. And for that I am extremely thankful. He is my world and I love him with all of my being. If only I could trade places with him, I would in an instant. :(

 

So that is where we are currently. A lot of not so great news. It’s been difficult… mentally, emotionally and physically, but we all know Rex is a true warrior. So I try to follow his lead and wake up every day and put on the armor of God, realizing that we have been given the most beautiful gift of another day together.  I don’t want to let anything, or anyone, ever rob us of one second of it!

 

 

Update on November 6, 2021

 

As I stated previously, things can take a turn suddenly on this journey. This week has proven that to be true once again. Rex’s lab results on 11/01 showed a continued elevation in his liver numbers. And his CA 19-9 cancer marker skyrocketed 244% in just 6 days. It was 94,800 (on 10/25) and at 232,200 (on 11/01). As a result, Dr. Wolff has removed chemo treatment completely and it is no longer an option. Experimental drugs are all that remain for him at MD Anderson and Dr. Wolff says those are very limited.

 

Now as I sit here typing this update, we are inpatient at MD Anderson. This past week, Rex suddenly lost around 30% of his vision (peripheral and all lower quadrants) and his stomach and back pain have increased. We texted Dr. Wolff and he sent us straight to the ER at MD Anderson on Thursday night in fear of another blood clot. While in the ER, they did a CT scan that showed Rex had suffered an embolic stroke in the back of his brain. Hearing that knocked the breath out of us both. It is hard to say if it is the remnants of the clot he developed in his leg a few weeks ago, or if this was a new one. Regardless, it is extremely concerning and he was admitted. Around 3AM he was finally taken to a room on the neurology floor and that is where we are now. I am so grateful that I am able to be with him while he is here. As you may recall, because of Covid, I wasn’t allowed previously, so being here is definitely an answer to prayer!

 

Yesterday they did an Echocardiogram of his heart. Today they are doing an MRI with contrast of his brain and Monday, they will be doing a Transesophageal Echocardiogram (TEE) to look at the back side of his heart through a scope. All of these procedures are hopefully going to provide clues as to where the blood clots are coming from. Even through all of this, Rex’s spirit has been as bright as always and his jokes are constant. He is very tired and sleeping a lot, which I’m sure the pain medication is adding to, but when he’s not sleeping, we are talking, meeting a new staff member, or watching a free movie on the TV provided in the room. Last night we watched the movies Friday Night Lights and Togo. Both were a good escape! Rex is still eating, although the pain he experiences after a meal can be excruciating as his body tries to digest it. It is so hard when you are really hungry, but know once you eat the pain is going to come soon thereafter. We have been fortunate that his weight has been steady over the last few months. The creon enzymes he takes with his meals have helped his digestion a lot, but it is still a very difficult and painful process for him. 

 

Even though, through all of this our faith remains strong. Of course, there have been many times of crying out to God in my anguish. I don’t understand why God has chosen such an incredible man for this assignment. But as my sweet husband says, “Why not me?”. I’ve always known Rex was a Godly man. A man filled with the spirit of Christ, light, love, forgiveness, truth, integrity…. all of the qualities that make him who he is. But on this journey I have witnessed just how deep his love for Christ and others goes. It is woven into his very being and soul. He has been the biggest blessing of my life and has shown me what true happiness and love are supposed to be. He faces each day with the heart and spirit of a warrior. He has taken this assignment and is using it to glorify Christ. If he can help bring one person to a personal relationship with Jesus, he feels he is accomplishing his purpose. Plus, Rex wants to spend eternity with as many people as possible! As we both know, we are all only here for a short while. One day we will be in the presence of our Father. No more hospitals. No more medication. No more pain. We will be free of all disease, despair and heartbreak.  We will experience nothing but pure joy and happiness for eternity. And knowing that truth gets us through the darkest of valleys on this journey. Our God loves us. We are His children and we were created in His image.

 

Once again, Rex and I thank all of you for your love, support and especially your prayers! We love our Lord and Savior! We love you all! 

 

God is good! All the time!