Greetings friends and family. I know I haven’t posted much lately. I will again soon. What follows is the account of our cancer journey from the perspective of my wife, Kim. She was asked to give her testimony at a women’s retreat on March 16, 2018. Reading this blows me away, honestly. I wanted to post this because her story is important in all of this, too, and it rarely gets heard because of the focus on my condition.
4 years, 11 months and 7 days (1,800 days)
1 cancer diagnosis
1 cancer recurrence
176 days away from the kids (90 in Houston, 86 in Nashville)
23 days in the hospital
4 abdominal surgeries
5 scopes (2 colon, 2 rectal, 1 small bowel)
5 sets of ureteral stents
1 abdominal mesh implant
4 ER visits (which isn’t bad)
22 CT scans (probably more – I’ve lost count)
6 PET scans
60 Chemotherapy treatments
28 Chemo-radiation treatments
36 Immunotherapy treatments
8 Eye exams
Thousands of miles flying to and from Houston and driving to and from Nashville
Throughout this whole “cancer trip”, I have learned to find joy in the suffering, be thankful for the manna and to practice the presence of God. It has been a process and not always easy.
In the beginning, Brent was having abdominal symptoms that lead us to a colonoscopy on 4/11/13, the same day as the 10th birthday of our twins, Samantha and Caroline. We found out that day that Brent had a walnut-sized tumor in his descending colon. He would need to get surgery to remove the tumor and meet with an oncologist to discuss the future.
But I was just sitting in the waiting room planning for Westminster’s Field Day (I volunteered to head that up), and we have to go straight from this procedure to Sam’s Club to pick up the twins’ cookie cake to take to their class to celebrate their birthday.
Life has to go on? I can’t! Our world has just been turned upside down!
The next several days were very surreal. We had the twins birthday party. We had a wedding to attend, and Brent took our 3 girls to the Father/Daughter dance at school. We didn’t tell the kids until 4 days later. At the time, Joy was 12, Samantha and Caroline 10, and Owen 8. I don’t think they completely understood what we were telling them, but their grandfather (my dad), Gibby, had been living with metastatic kidney cancer for 6 years. He was their benchmark, and so I think they were optimistic. At the end of April, Brent had surgery to remove the tumor and then had 12 chemotherapy treatments. His last treatment was at the end of October, and we hoped that would be it.
During this time, I found encouragement from the body through prayers, meals, playdates for my kids among many other things. But I was beginning to grasp what it means to take the manna, be thankful for what I have today, not wander down the “what-if?” rabbit holes, and understand that being in the presence of God takes practice. A friend whose son had just finished treatment for leukemia wrote me a note, and in it she had the verse from Psalm 46:10 “Be still and know that I am God”. At first, I thought it was a very strange verse to give me, but by the end of 2013, I was begging to grasp it. I had never really faced any kind of suffering like this in my entire life. As I would read scripture, I learned as Christians, suffering is inevitable. It isn’t an “if” scenario but a “when” scenario. I would have to learn to be still even in the suffering. Everyone suffers in different ways and our family would suffer by means of cancer. In 2 Corinthians 1:5, Paul says “For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ”.
Okay. so we suffer.
Fast forward to April 25, 2014, we found out after a routine CT scan that Brent’s cancer had returned in the form of a pesky tumor that was wedged in the a tricky area in his lower abdomen. Not only that, but a PET scan revealed that distant lymph nodes had cancerous activity. The reality hit us hard — Brent has metastatic cancer and would have to be on some kind of treatment for the rest of his life.
Devastation! I had thought that our suffering was only going to be short-lived, not life-long.
I will never forget the night we learned about the spread of his cancer. Brent, his mom, and I went to a French restaurant near the Rice University campus in Houston. Between the 3 of us, we had 2 bottles of wine, a very nice French Montrachet vintage, and we drowned in our tears. The suffering was here to stay. We could face it on our own strength, or we could hand it over to the Lord. I must admit that there were days that I would rely on my own strength, give myself a pep talk that we could do this. We’ll be just fine. What other choice do we have? But I would just find myself completely weary, not taking in the manna and not allowing the presence of God and the Holy Spirit to carry me. I have this verse on a notecard taped to my bathroom mirror. Romans 5:3-5 “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”
Okay, so we persevere.
Through the rest of 2014 until June 2015, Brent was getting chemotherapy every 2 weeks, and we were beginning to get into a rhythm of life with cancer. We would plan big events like trips to the beach and Disney World around his treatments. We were really getting a taste of what it was like to live off the manna for the day and trusting that God has a plan. We were trying to live as “normal” as possible. Then in June, Brent started getting severe abdominal pain again. After a trip to the ER and a rectal scope, we found out that the pesky tumor had grown into his rectum and was causing a 98% blockage. We got on a plane to Houston that evening, and Brent had surgery 2 days later to divert his colon. He was given a temporary ileostomy that we named Vesuvius due to its sporadic, eruptive nature, and we began to talk to the surgeon about removing this tumor that was causing so many problems. Brent wanted this “bleeping” tumor out of his body.
So, we had a new focus, a whole new set of prayers to be praying. To prepare for this surgery, Brent had to go through 28 days of chemo-radiation (5 days/week for 5 ½ weeks) at MD Anderson in Houston . We rented a temporary apartment with an awesome pool, a game room, fitness center. It will be great, right?. Brent would live there most of July and part of August. The kids and I stayed with him for 15 of those days. Brent’s mom rented her own apartment in the same complex so that she could be with Brent when we had to go back home. The radiation was supposed to shrink the tumor to make it easier to remove. I kept telling myself, “Don’t forget the manna, Kim. Make the most of this time. Take the kids to all the sites in Houston while still spending time with Daddy. Stay busy, that way no one has to feel how hard all this really is.” I had the manna but was ignoring the presence of God and numbing the suffering. I began to lose focus of how God would be working now, today. I was so focused on making things normal.
Supress the stress. It’s going to be fine. God is good, right?
We made it through the chemoradiation. Brent came home. Surgery was set for early October. We went through all the preparation for the surgery only to find out that the cancer had spread again to more distant lymph nodes. Surgery was off the table. Back to chemotherapy. But Lord, we trusted that you had a plan and that it was good. How was this good? I will never forget the night we found out that the surgery wasn’t going to happen. Again, in Houston, in an Italian restaurant this time, I sobbed through the whole dinner. I felt so bad for our waitress.
Then comes 2016, the most trying year of all. The trials and sufferings of this year would cause me to really live out and believe James 1:2-4, “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything”.
This was the year the tumor was coming out!
Brent was resolute to get rid of the tumor, and I was really apprehensive. The date was set for April 14. As the caregiver, I knew what it would mean. After the disappointment in October, I really began to think ahead and about what this surgery would entail. They would have to remove his bladder, his prostate, and resect his rectum. They would have to remove part of his abdominal muscle to rebuild his rectum. He would have a permanent bag for his bladder and hopefully a new temporary bag for his bowels. He would have days, maybe weeks recovering in the hospital in Houston, and then there would be the recovery and rehabilitation back home. It was overwhelming to think about. I was going down those “what-if?” rabbit holes.
Then I met a woman at MD Anderson whose husband is battling a rare form of brain cancer. He was getting a PET scan at the same time as Brent. So we had about an hour with each other. She was a believer and gave me the book, The Practice of the Presence of God by Brother Lawrence. She told me that she had been reading this book and thought I might find it helpful. She also got my cell phone number and said she would text me. (By the way, almost 2 years later, I still receive a text from her daily). I started reading the book right there, and it was exactly what I needed. The practice of the presence of God. I needed this as my focus. I needed to ask the hard question, “was it well with my soul?”
I needed the Holy Spirit. I needed God’s presence. I needed the peace that surpasses all understanding. No matter what happens. Whether Brent lives or doesn’t. Would I still rejoice in my suffering? Do I really believe what 1 Peter 1:6-7 says, “In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith – of greater worth than gold, which perishes even though refined by fire – may result in praise, glory and honor when Jesus Christ is revealed.”
April 14th arrives and the surgeon finds, when he opens Brent’s abdomen from sternum to groin, that cancer has spread throughout his abdominal cavity as if someone has blown on a dandelion and the seeds have scattered everywhere. They close him back up and take him to recovery. When the surgeon tells me all this and that Brent would have to go back on chemotherapy, I am so calm. He later tells me that he was amazed at how calm I was. I was the one to tell Brent in recovery that they couldn’t remove the tumor and that the cancer had spread throughout his abdominal cavity. I had to hear his cries of anguish to take him back into surgery to remove the tumor. I had to hear him cry out, “I’m dying!” I had to calmly tell him that he wasn’t going to die today. Man, those post surgery drugs are potent! But it was the Lord that was speaking through me. I was not in control. It was incredibly amazing how the Holy Spirit was completely and totally at work that day.
Well, now what?
The chemotherapy drugs were no longer effective. We entertained a procedure called HIPEC which ended up not being a viable solution given the advanced stage of Brent’s disease. We were at the end of our rope. The oncologist at MD Anderson told us of a new immunotherapy that was opening up as a clinical trial that he thought would be beneficial for Brent. The trick would be to find a doctor close to us that was conducting the trial. At this point, it was well with my soul. God is in control. Remain in God’s presence and feed on the manna. He would provide.
And then, on August 26, 2016, my father, Gibby, lost his battle to cancer. My father was a soldier. He fought cancer for 9 years, but in all those years, I truly believe that it was well with his soul, whatever would happen. I held his hand and felt his pulse stop as he left this world. I was able to experience grief with several days of crying and anguish.
I have felt the hatred of death, but it has made me long for heaven that much more so that I can be in the presence of God forever. Thanks be to God for his son Jesus who tore the curtain and has allowed us to enter the holy of holies. Jesus is the manifestation of the suffering, the manna and the presence of God. I do not want to forget.
Since October 2016, Brent has been on a clinical trial with Tennessee Oncology in Nashville. We travel 600 miles round trip every 2 weeks for him to receive an immunotherapy drug that takes a total of about 2 hours to administer. Every 8 weeks, he gets a CT scan to see how effective the drugs are, and he gets an echocardiogram and an eye exam at the same time to make sure the immunotherapy drugs aren’t attacking his heart and eyes. He’s had 2 bowel obstructions, one of them caused by a tumor that he just recently had removed. We’ve been given good news and faced setbacks. We don’t know what the future holds, but we cling to the promise that God will alway be present. He will not forsake us. His steadfast love endures forever.