Status update, hospice care starting today
Just a quick update for those who are following our story and praying for us.
The cancer seems to be spreading rapidly, as I am losing control of my limbs and muscles at a fairly rapid pace. The tumors pressing on my spinal cord have completely paralyzed my legs. While I can still feel people touching them, I have to exert a lot of effort to even move my toes.
I can feel a slow loss of control coming to my upper body as well as my fingers and hands are losing dexterity.
Today we will officially begin hospice care, as it has become clear that I will not be physically able to complete any of the palliative radiation therapies or the immunotherapy.
This will provide us with in-home doctors and nurses, as well as medical equipment to provide palliative care for me to make my time with my family most enjoyable.
Thank you so much for those of you who have kindly reached out in tangible and intangible ways to support our family. We are so very grateful.
I am most grateful for the coming promise of Easter, and a risen Savior who triumphed over death so that we all may have eternal life.
Many thanks to all of you who have been a part of my wonderful life. I have known more love and happiness in my (shorter) life than many will know in a full one.
Medical leave from the university; 2 days in hospital; hospice status
The past week has been a whirlwind of activity. Because it's so hard to keep everything straight, I'm going to write this entry almost as a timeline so it's easier for me to write and for you to follow.
Sunday, April 2
My parents arrived from Washington State for a short visit. They always claim they come to see Melissa and me as well, but we know full well that their only grandchildren, Matthew and Raegann, are the real draw.
Monday, April 3
The family spent a relaxing day around the house, with the kids enjoying so much having two extra playmates to entertain them. The abdominal bloating caused by suspected stool blockage continued to grow slightly, but it remained only a minor inconvenience. It was not a complete blockage, and so although I needed to eat and drink slowly, I just continued to deal with the problem, hoping that as I reduced my use of narcotic pain-killers, the normal bowel function would slowly return.
Tuesday, April 4
I woke up at my usual time, showered, and got ready to teach my classes. At this point, the abdominal bloating had become so pronounced and tight that it was making it hard for me to walk upright normally. I was able to borrow a walker from my mother-in-law that made it much easier for me to get to my car and into SB Hall, where my office and classroom are located. Because of the counter indications for some of the medications I was taking at the time, I was unable to drive myself to campus, so my dad was kind enough to take on the role of chauffeur.
I arrived on campus, set up my classroom for BUS 3306: Business Communication, and completed the first 80 minute class section with some mild abdominal discomfort and some difficulty breathing because my abdominal cavity was so swollen that it left little room for lung expansion. As I dismissed my 9:30-10:50AM class, the abdominal pain suddenly took a turn for the worse, and I knew I wouldn't be able to make it through a second class. I packed up my things as my students entered the classroom, and once everyone arrived, quickly apologized for the late cancellation, but informed the students that I was experiencing too much pain to conduct the class section and that I would be in touch via email with assignments for the day.
As the students left the classroom, my dad and I made it back to my office where I picked up the walker and began the now seemingly miles-long trek to my parked car. Dad drove us back home as quickly as he could safely do, and I texted Melissa to tell her that I needed to go to the hospital. Previously, my oncologist had instructed me that if the abdominal swelling became much worse, I should call him and he would admit me to the hospital. Melissa quickly called my doctor, explained the situation, and we went directly to the emergency room at Baylor, Scott, & White Hospital in Irving, where I was admitted.
Eventually, a naso-gastric tube was placed down my nose into my stomach to begin slowly suctioning away fluid from my abdomen as a way of reducing the pressure. Slowly, this process did relieve much of the pressure in my abdomen, and x-rays revealed continued blockage in my intestines, so I was given some shots directly into my stomach to stimulate the intestinal peristalsis and allow some movement to occur. This process was successful, to a point, but the blockage was not completely cleared, although the swelling in my abdomen did go down by more than 50% and the discomfort was drastically reduced.
My first night in the hospital was one of the worst nights of my life. For the previous two weeks or so, the tumors in my psoas (back) muscles and the tumors pressing on my spinal cord have been causing pretty intense pain whenever I attempt to lie flat (you'll remember the problems with the CT scans from the last post). I had been sleeping in a recliner for at least 12 days by the time I was admitted to the hospital. My problem with the hospital bed was that, as adjustable as it was, it could not adjust to a position that my back and neck could tolerate. Throughout the night, my pain grew worse and worse due to the position my back and neck were being forced into by the hospital bed. Eventually, I was hooked up to an IV pump with Dilaudid (a stronger-than-morphine narcotic painkiller), and for much of the night I had my phone timer set to beep every 10 minutes to remind myself that I could take another dose. At home, my typical treatment for the cancer-caused lower back pain would be to take a scalding hot shower that would relax the muscles and allow me to sleep peacefully in my recliner for several more hours. Unfortunately, hospital showers seem to lack a "HOT position on the dial; instead, they move between "freezing cold" and "slightly warmer than dog spit." Adding insult to injury, the irony was that the vast majority of the pain I was experiencing was due to the hospital bed, not due to my cancer.
The next day, my oncologist arrived at the hospital to check on me, and suggested that I consider hospice care. It was his opinion that the only way I could be even remotely comfortable at home would be by having access to an intravenous pain pump, and I would only be able to get access to one of those at home through a hospice organization. At a later point, in the hall, Melissa candidly asked my oncologist what he thought my prognosis was. His honest opinion was that I probably have days or weeks to live, and the best course of action would be to take me home and make me as comfortable as possible so I could spend whatever time I have left with my family.
With this knowledge, I called my direct supervisor at University of Dallas and regrettably informed him that a sudden negative turn of events related to my cancer necessitated that I go on immediate medical leave from the University. It was one of the hardest phone calls I've ever had to make - aside from being with my family, teaching is the activity that has brought me more joy and fulfillment than anything else I have ever done.
Wednesday, April 5
My doctor recommended that I stay a second night in the hospital with the nasal-gastric tube draining my abdomen and so I would continue with access to the pain pump. This second night in the hospital was, without question, the worst night of my life. Again, the positioning of the bed wrought havoc on my back and neck muscles, so most of the night was spent rotating every five minutes between an electric heating pad, bags of ice, and an electric massager, trying to find enough comfort to sleep, even for a few minutes. My heroic father, who stayed both nights with me in the hospital, must have spent at least six hours between the two nights massaging my back and neck with the electric massager, filling bags with ice, moving around the heating pad, or reminding me to again punch the button on my Dilaudid IV drip. And again, the worst part of this was that the vast majority of the pain I was experiencing was due to the bed, not due to the pain caused by my cancer tumors. Eventually, I ended up getting about 2.5 hours of uninterrupted sleep late in the morning by sitting upright in the visitor chair with pillows tucked behind me, sitting on a pillow, and with my feet propped up in the lowest drawer of the night stand, used as a footrest.
During the day of April 5, Melissa contacted my radiation oncologist at UT Southwestern to see if there was any possibility of trying to get a single radiation treatment that migth be able to reduce my back pain enough to be able to lie flat for the CT scan so that the additional palliative radiation treatments could be completed, potentially improving my quality of life. She discussed this option with my medical oncologist, who discouraged this plan, believing that it would needlessly take me away from my IV pain medication drip, and potentially send me into a pain spiral that would be difficult to recover from. Melissa continued her discussions with my radiation oncologist, and he firmly believed that if the first palliative treatment session could be completed, it could drastically reduce my pain and potentially open up the possibility of completing the full 8-session treatment. As we discussed it, Melissa and I wanted to give our God as many opportunities as possible to grant us the healing miracle we have been so desperately praying for, so we decided to try to complete the radiation treatment. (You'll remember from my last blog post that this was the treatment I was not able to complete due to being unable to lie flat enough on the CT machine table).
Around 11PM on April 5, Melissa returned to the hospital where I was staying and made plans with all of the nurses on duty to ensure that I could be discharged no later than 6:30AM the following morning.
Thursday, April 6
If you've ever tried to get discharged from a hospital, you know what a nightmare it can be. "Just a few more minutes" often becomes hours, days, or weeks. I think that the nursing staff was a bit afraid of Melissa after her meeting with them at 11PM the night before, as much to my surprise and delight, the charge nurse entered my room at 6:22 with discharge papers that were pre-filled, and she requested only my signature twice and my initials once. An orderly wheeled me to the car where Melissa was waiting to pick me up, and we drove the two blocks back to our house where I took a glorious scalding hot shower which relaxed the muscles in my neck and back to a state of comfort that they had not experienced since my hospital admission. After my shower, I quickly dressed, and we made the drive to the newly opened UT Southwestern Radiation Oncology facility in Dallas. During the trip, my back muscles, so badly abused from the two nights in the hospital bed, began to seize up again, and we began to worry that I wouldn't be able to complete the treatment.
As soon as we arrived, we talked to my radiation oncologist's nurse practitioner about the state of my back muscles. She grabbed two chemical heating pads, which we started up, but they were unable to provide anything near the heat output that would be needed to soothe my back. As there was still a little time until my scheduled procedure, Melissa elected to drive back to our house to pick up our electric heating pad, hoping that the morning traffic (it was now about 8:35AM) would not prevent her from returning in time to be of use.
Shortly after Melissa left, a team of three nurses and technicians arrived to prepare me for the initial CT scan upon which the first palliative radiation treatment would be based. I was taken in to a prep room where an IV line was placed to allow iodine-based contrast to be run through my veins to make it easier to identify structures within the body. I was placed on the CT machine and several new techs appeared who began the process of carefully packing by body into the specialized materials that would ensure the exact same position of all of my parts could be duplicated in the radiation machine. Typically, this procedure is fairly simple; patients who can lie flat on their back do so, and then the adjustable beanbag-like wedges and pillows are placed around the body and filled or deflated as necessary to ensure precise positioning and the inability to move.
Thankfully, this team understood that this was my second try for this CT scan and radiation treatment, and that lying flat on the table was not an option. Several additional technicians, nurses, and physicians appeared, and all of them stood around the table building a platform for me at the lowest possible angle that I could tolderate for the 15-20 minutes it would take to complete the needed scans. Shortly after this process started, Melissa returned with the heating pad, and it was placed inside my CT cocoon to further allow my muscles to soften. Once the positioning bags had all been placed, the final check was run where the table was turned on to run me through the tube of the CT scanner.
My feet entered the tube without any problems, then my chest, and when we finally came to my head, I was approximately 1.5 inches too tall to fit into the tube. In spite of all of the work of the team, we had come to a fail state that seemed insurmountable. I simplly couldn't lie flat enough to get into the CT machine. My radiation oncologist seemed unperturbed by the situation. He ordered everyone to move me from the table and take me into the next room with the radiation delivery machine. Although this device was primarily used for delivering the radiation, it also had the capability to complete CT scans, used to match initial CT scans with the tumors seen during the radiation delivery. Importantly, this machine lacked a tube, and was instead a large table with nothing around it except the flat delivery surface that actually shoots that radiation beams into the patient.
The team (now approaching nearly 20 individuals) placed me on the table at a much more comfortable angle (nearly sitting up this time), and again began packing me in to ensure that I couldn't move. Over the next 28 minutes, CT scans were completed, a treatment plan was developed and programmed, and I received the first palliative radiation treatment that I so desperately needed if I was to have any chance of completing the full 8-course treatment. I've never worked with a better team of doctors who were more committed to doing whatever was necessary for their patient. I didn't know it at the time, but my radiation oncologist, it turns out, is one of the best in the country, and is the Department Chair at UT Southwestern. In my view, he earns every penny of his $439,000 annual salary.
Following the radiation treatment, Melissa drove me home, and I spent most of the day relaxing, taking hot showers as needed, and spending time with my family. The fear of my medical oncologist that I would be unable to control my pain at home using only oral medications turned out to be unfounded, as once I was able to take showers and sleep in my recliner again, I was able to cut my intake of narcotic painkillers by more than half. As you might imagine, after spending two night in the hospital with very little sleep, I spent much of the rest of that afternoon sleeping. Around 3pm I woke up, but stayed sitting in my recliner, as I could hear Melissa on the phone with someone walking down the hall toward our bedroom. She opened the door a crack, saw that I was awake, and told the person on the line that I was avaialbe to talk. She placed the phone on speaker, and I was greeted by Dean Brett J. L. Landry, Dean of the Satish & Yasmin Gupta College of Business; Greg Bell, Associate Dean of Faculty Affairs for the COB, and Sheila Howard, Assistant Dean for Undergraduate Business Programs. Dean Landry didn't waste much time, but he told me that they had just been in a meeting with University President Keefe, and a scholarship had been set up for my children, Matthew and Raegann, which would cover 100% of their tuition and fees at the University of Dallas whenever they were ready to matriculate. Talk about working for an employer that values its people and practices the values it teaches within its classrooms! Melissa and I were completely overwhelmed at this gesture and how amazing this was, given the near immediate prospects of her becoming a single mother with two very young children.
Friday, April 7
This ended up being a day to again relax and simply try to recover from the two days of torture that my back and neck had experienced at the hands of the hospital bed. At 2:00PM, I felt well enough to attend a Rosary service at University of Dallas' Chapel of the Incarnation that students had organized to pray for my healing and comfort during this time. The service was an emotional one for me. First, I was astonished by the number of students, faculty, and staff who showed up for the service. I felt like George Bailey from the classic Christmas movie It's a Wonderful Life as he has the opportunity to attend his own funeral. I had the chance to talk with so many students and hear stories about how my class or something I had said to them in conversation at some point had had an impact on them. I was a blubbering mess by the end of the service, when students and faculty alike lined up to have a chance to talk to me. I had the chance to tell each of them that I'm not giving up. Jesus' short ministry on earth was marked by a whole lot of healing; that same Jesus now sits at the right hand of the Father in heaven and He is more than able to heal me, even as advanced as my disease has become.
I do not presume to know that He will heal me. The likely course of events is that this cancer will continue to spread through my body leading to multiple organ failure and my ultimate death. It will likely come sooner rather than later. But I promised my wife and my sweet baby girl Raegann and my tenacious little boy Matthew that I would never give up. That I will fight this awful disease for as long as I can, and that I will continue to beg God for a miracle of healing every day that I have breath.
And so I continue to do so - multiple times, every day: "Jesus - I know that you have the power to heal me. I ask that you will."
I am so grateful for the hundreds, maybe even thousands of you who are so earnestly praying for this miracle on my behalf as well. Live or die, I have become a better husband, a better father, and a better follower of Christ through this ordeal.
We continue to covet your prayers in these specific ways:
- That the palliative radiation treatment I received last week will be enough to allow me to lie flat and complete the full scheduled 8 rounds of radiation treatment.
- That the lowered dosages of narcotic painkillers will allow my bowel functions to return to normal and reduce the pain and discomfort from my abdominal distension.
- That the radiation treatment will be successful at shrinking the tumors that are attacking my back muscles and my spinal column, making it difficult for me to walk and necessitating the use of a wheelchair for all but the shortest trips.
- For my beautiful wife, Melissa, as she remains, in my eyes, caretaker of the century - constantly looking after my needs ahead of all others.
- For a miracle of complete healing. I believe that God has the power to heal me. Please pray with me that He sees fit to do so. I do so want to see my children grow up, and to have the opportunity to teach many more generations of students like those from University of Dallas who I have grown to love so much.
As of now, while we have selected a hospice care provider, I have not officially entered hospice care. There are some treatments, including radiation, chemotherapy, and immunotherapy, that hospice providers consider to be more than palliative, and so they disallow patients who are pursuing those treatments from receiving hospice services. So long as we are able to manage my pain at home with oral medications, we plan to aggressively take whatever actions we can to stave off this cancer. At this time, this will likely include completion of the palliative radiation treatments and beginning a course of immunotherapy to see if anything can be done to slow down my incredibly aggressive and treatment-resistant tumors.
So sorry for the length of this post - there was a lot to cover. Thank you for all of you who read it, or at least skipped to the bottom to say a prayer for us.
LONG update; Bad news from Houston; Radiation and treatment update
It has been quite a while since I’ve written an update, so this post will be somewhat lengthy as I recap the past weeks. This has also been, by far, the hardest update to write.
If it’s tl:dr, please just skip to the prayer requests at the end. :-)
Chemo rounds 21-24 were blessedly mild in terms of side-effects. Other than the expected fatigue for 3-4 days following the infusion, the nausea, loss of appetite, and other awful side effects were almost entirely controlled by medication during each of these rounds. It was so nice to be able to have a few weeks where my off-chemo weeks were nearly normal, other than having less energy than usual!
As a family, we hit a few major milestones – Matthew and Raegann upgraded from their toddler beds to a big boy/girl bunk bed. Although beds are supposed to be for sleeping, the bunks ended up being their favorite play spot for the next week and a half or so. It was a great joy for me to be able to help Melissa assemble the beds and to see the pure happiness on my children’s faces as they built forts and played castles and dragons on their wonderful new sleeping arrangements.
A second big milestone was the removal of Matthew’s training wheels from his bicycle. Although he’s only 4, turning five in late August, it seemed like he was ready, so Melissa took them off and spent some time helping to stabilize him as he rode back and forth down our driveway and into the cul-de-sac. After about 75 minutes of practice with Mommy’s help over two different days, he was cruising around the neighborhood like a pro. Of course, Raegann (2 years old, turning 3 in July) now thinks she is ready to remove her training wheels as well. We'll see...
And now, the update on my chemotherapy and other treatments. You may remember that the eight rounds of radiation treatments I had at UT Southwestern in December and early January were incredibly effective at reducing my pain. For the sake of future comparisons, doctors ordered a full chest, abdomen, and pelvic CT scan once the radiation treatments were completed so that the effectiveness of later treatments (specifically, the systemic chemotherapy treatments) could be precisely measured.
Those eight rounds of radiation were a resounding success! For more than six weeks immediately following treatment, I was able to completely eliminate the narcotic pain killers I was taking for back pain caused by the tumors in my back muscles and near my spine. In fact, since I cannot take over-the-counter NSAIDS and most other OTC pain killers because of my stomach tumor, I was off of ALL pain killers during that time.
This brief respite from the narcotics and their associated side-effects was a true blessing. However, starting in early March, I began experiencing minor pain in my left leg that seemed to originate from a small lump near my groin. My local medical oncologist confirmed that this was a swollen lymph node, and encouraged me to keep an eye on it during the coming weeks. Although the node itself didn’t seem to grow very much, the pain in my leg continued to become more severe, resulting in the necessity of recontinuing the narcotic painkillers, although at lower doses than I had previously required.
As time passed, the back pain returned as well, indicating that there may be new tumors in my back that aren’t responding well to the new chemotherapy regimen of Irinotecan and Paclitaxel. Over the first few weeks of March, the pain in my left leg and back grew to the point where I was limping to avoid full extension of my left leg, and I was forced to return to even higher doses of narcotics to control the pain. My local care team offered to order CT scans at that time, but since I had prescheduled scans at MD Anderson in just two weeks, I opted to wait and have the scans done only one time.
As many of you know, we traveled down to MD Anderson in Houston March 15-19 for new scans and follow-up appointments with my medical oncologist and her team there. In order to avoid as much Houston traffic as possible, we left on Wednesday late morning and returned home to Dallas on Saturday late morning.
We took both kids and made a mini-vacation out of the trip. The hotel’s indoor pool was a hit, and turned out to be a great way to burn off some of the seemingly endless energy that powers our children. For them, even staying for several nights in a hotel was a fantastic adventure. Daddy got to show them the fun of jumping on a king-sized bed in a hotel room (but NEVER at home!), and how to make a bed out of a pull-out couch. Since we stayed at the Jesse H. Jones Memorial House Hotel, which is directly connected to the UT Medical Center, there was even a self-serve frozen yogurt bar just a short walk from our hotel room, and this also turned out to be a huge hit with the tiniest Yales.
On March 17, I had a complete chest, abdomen, and pelvic CT scan to compare with the post-radiation scans from January, and on March 18, I had a follow-up appointment with my medical oncologist and her team. Based on the few side-effects that I’d experienced from the new chemotherapy regimen and the mostly good days I’d been having over the past two months, I was hoping for good news. Certainly, both Melissa and I were concerned about the enlarged lymph node in my groin and the pain in my left leg and in my back, but we were hopeful that the chemotherapy was keeping the other tumors in my body at bay, and that radiation could again be used on the tumors in my leg and back that didn’t seem to be responding to the chemotherapy.
Unfortunately, the news we hoped for was not the news we received. The comparison of the two CT scans revealed that the chemo regimen I had been on for the past eight weeks had been completely ineffective at slowing the growth and spread of my cancer. Existing cancer sites in the lymph nodes, the stomach tumor itself, and the tumors in my psoas muscles (in the back) were all larger in the March scans compared to the January scans. Even worse, new lymph nodes which had previously not shown involvement were growing larger with new cancer tumors, and there were new tumors in both my liver and my spleen. Essentially, the combination of Irinotecan and Paclitaxel had done absolutely nothing to slow the spread of my cancer.
My oncologist explained that treatment options were becoming more and more limited due to the number of treatments I had already used to combat this aggressive form of adenocarcinoma in my body. Although there are about a dozen drugs commonly used to treat gastric (i.e., stomach) cancers, many of them are related, in that they use the same mechanisms to kill cancer cells. Thus, if you’ve had one of the drugs in the family, it is pointless to use any of the other drugs from the same family. So far in my treatment, I’ve received Oxaliplatin (in the platinum-based family of drugs), 5-FU, Irinotecan, and Paclitaxel.
Given that all of these drugs have become ineffective (or were never effective) at treating my specific cancer, the only remaining drug FDA approved for the treatment of gastric cancer was Ramucirumab, a monoclonal antibody therapy. The problem with using Ramucirumab in my case is that it is a drug that is typically ineffective on its own – it is almost always paired with Paclitaxel to produce the greatest benefit for patients. Since I had already been on Paclitaxel for 8 weeks with zero reduction or slowing of the cancer in my body, using the Ramucirumab + Paclitaxel regimen seemed like a poor option in my case.
My oncologist from MD Anderson spent some time consulting via telephone with my local oncologist here in Dallas, and they both agreed that the best option for me at this point in my treatment was to try to get an off-label prescription for an immunotherapy drug called Keytruda. Keytruda is FDA-approved for the treatment of several types of cancers, and there are ongoing clinical trials testing its effectiveness in patients with gastric cancers that have shown extremely positive results in some patients.
Given the advanced nature of my gastric cancer, entering one of these clinical trials is not an option for me. However, it is sometimes possible for physicians to petition the drug manufacturer (Merck, in this case) for compassionate care provision of the drug at no cost for patients who do not qualify for clinical trials. My local oncologist was willing to attempt this, and although all of the paperwork has not been finalized, it does seem as though Merck will provide Keytruda for me at no cost. We are praying that any further delays are minimized, and that Merck does agree to provide the drug to my oncologist as part of a compassionate care protocol so I can begin the immunotherapy regimen as soon as possible.
Upon returning to Dallas, I consulted with my radiation oncologist about a second round of radiation to target the lymph node in my groin and the new tumors near my spinal cord and in my psoas muscles that seem to be the primary source of my back pain. He reviewed the scans from MD Anderson as well as some MRI scans that he ordered here in Dallas, and agreed that palliative radiation treatment would likely reduce or eliminate much of the pain that I’ve been experiencing.
Complicating all of this, starting around March 23, I started experiencing severe abdominal bloating. Drinking liquids and eating food seemed to result in extreme swelling of my abdomen that never fully resolved. It would be somewhat reduced in the morning, but after a normal intake of fluids, the abdomen would become swollen and almost hard to the touch. March 23 was also the day that I noticed swelling in my left leg from the knee down to the foot. I monitored these symptoms through the weekend, and went in for an unscheduled appointment with my local oncologist on Monday, March 27. He ordered an ultrasound of my abdomen and left leg to check for blood clots, as well as a CT scan of the abdomen to look for other abnormalities that might be causing blockages. The ultrasound was completed same-day and did not show any blood clots or blockages in my left leg. The CT scan was scheduled for Wednesday.
The actual process of completing the CT scan on the morning of Wednesday, March 29, proved to be extremely painful. The four-hour trip to Houston and back, as well as the discomfort that sometimes comes from sleeping in an unfamiliar bed, wrought some havoc on my lower back muscles. You may remember from previous posts that my back is somewhat prone to easy injury. After returning from Houston I was able to sleep in my bed for one or two nights, but since then, have been sleeping in a recliner with my legs up, but with almost no recline for my upper body in order to keep my back muscles from tightening up and devolving into painful spasms.
The CT technicians were incredibly sympathetic with the back pain that I was experiencing when lying flat on my back, so they would lie me down, snap a set of X-Rays, and then quickly re-enter the CT room to lift me back into a sitting position and reduce my pain. Although I was only lying flat for a total of about two minutes for the abdominal CT scan, it was enough to put my lower back muscles into severe spasms that didn’t resolve until I returned home and treated them with an extremely hot shower.
This period of spasmodic activity seemed to further injure my lower back muscles, which created an even bigger problem on the evening of the 29th when I was scheduled for my first of 8 radiation treatments to help eliminate the back pain caused by tumors near my spinal cord and in my psoas muscles. Due to the injury of my lower back muscles caused by the spasms during the morning CT scan, I was unable to lie on my back in the radiation machine for more than a few seconds. My pain level would go from a 2 when standing or sitting upright to a 10 when lying completely flat. I went home without completing my first radiation treatment with the instructions to return for my next appointment the following evening after allowing the back muscles to rest for a day.
I consulted with my medical oncologist about the pain, and he suggested the doubling of most of my narcotic pain medications in the doses immediately prior to my radiation appointment, as well as the addition of a muscle relaxer and Valium to reduce further spasmodic activity. I returned for the second radiation attempt on Thursday evening and attempted to lie flat in the machine. Sadly, even though I had enough drugs in my system to be considered essentially under conscious sedation (per my radiation oncologist), the pain was so severe when I was placed on my back that I was again unable to receive treatment. It’s a classic Catch-22: I need to be able to lie on my back to receive the radiation to eliminate the pain so I can lie on my back.
The current plan is to attempt a new simulation study on Tuesday (April 4) where my radiation oncologist and his team will try to find a new position (i.e., not lying flat on my back) that I can tolerate long enough to complete the radiation treatments.
The abdominal CT scan from the morning of March 29 did reveal a stool blockage that my local oncologist suspected could be the cause of my abdominal bloating. Narcotic pain killers as well as one of the anti-nausea drugs that I take all contribute to constipation, and although I was taking medications to deal with this, it appears they weren’t quite doing their job.
My doctor prescribed an even more aggressive regimen of stool softeners and laxatives, similar to a protocol a patient might go through prior to colon or intestine surgery. After these treatments had been completed, the bloating in the abdomen and the swelling in the left leg and foot continued. The constant tightness of the abdomen makes it incredibly uncomfortable to eat and drink normally, as any additional fluids or solids entering the abdomen only further increase the pressure on the already bloated area.
As it stands now, I am still sleeping in a recliner, allowing my back muscles to rest and recover as much as possible. Next Tuesday I will go back to my radiation oncologist for a new simulation study to try and find a position I can tolerate so I can receive radiation therapy targeting the tumors in my psoas muscles, my groin, and near my spinal cord. In the meantime, we continue to wait for approval from Merck for compassionate care provision of Keytruda so that my treatment with the immunotherapy drug can begin (note: both my medical and radiation oncologists agree that this immunotherapy drug and the radiation protocol can be provided concurrently, so as soon as approval for Keytruda comes in, I can begin treatment).
If you have read this far through this incredibly long update (so sorry!), you have probably gathered that my prognosis given these recent developments is poor. The radiation treatments, should my team be able to find a position that I can tolerate, are purely palliative in nature. They will reduce my pain, but they are not curative. Similarly, although Keytruda has shown some amazing results with some patients at fighting back various cancers, it is still at an investigational phase vs. gastric cancer, and in all likelihood, will not work for me.
In short, I need a miracle from God. It is a prayer I have prayed nearly daily over the past year: “Dear Jesus, I know that You are able to heal me; I ask that You will.” Over the past several weeks, I have prayed that prayer dozens of times every day: every time I hold one of my children in my arms; every time I embrace my wife; and every time I am reminded of one the future milestones I will miss with my beautiful family, I can’t help but utter it once more.
I know that Jesus, fully God and fully man, walked on this earth and healed thousands of people during his short ministry. I know that same Jesus sits now at the right hand of the Father in heaven, petitioning the Father on my behalf and on behalf of all those who cry out to Him. With this full knowledge that God can heal me, I also recognize that He may choose not to. In His view, so far beyond my understanding of the world that is limited and bound by temporality, my seemingly early death may produce the most good in this world. As hard as it is to acknowledge this, I know that whatever happens to me, the view from eternity will make all things clear, and the reality of eternity in heaven with my Savior is far more precious than any additional seconds I might spend upon this earth.
And so, I hug my children as often as I can; I whisper in their ears how much I love them and how proud they make me; I affirm my wife every chance I get; I take the steps that I can to provide for my family and to leave them with good memories of their Daddy and spouse. I write these words mostly for them, so they can have a glimpse into the heart of their father, and ultimately so that they will someday know, beyond a shadow of a doubt, that they have a Father in heaven who loves them far more than I ever could.
Thus far, I have been able to continue to teach my classes at University of Dallas, and I find my time with my students to be invigorating and therapeutic. So long as I have breath in my lungs, I will continue to teach, as it is an activity that brings me so much joy.
For those of you who continue to pray for us, please remember these requests:
- Modern medicine has mostly exhausted its options for me. I need a miracle from God to experience long-term survival given the recent progression of my disease.
- For quick approval from Merck so I can begin immunotherapy treatment as soon as possible.
- For fast healing of my back muscles and success on Tuesday at finding a new position so I can successfully complete the eight palliative radiation treatments.
- For my wonderful wife Melissa, who is watching her mother and her husband battle this terrible disease at the same time, and who is constantly going above and beyond what anyone should be asked to do as a caretaker: for our children, for me, and for her mother.
- For Melissa and me as parents, as we begin to talk about death and dying in new ways with our children.
We are so thankful for all of you who have faithfully walked this journey with us; those who have prayed for us; written encouraging notes and cards, provided meals, assisted with monetary gifts, watched our children, and all the myriad ways you have shown love to us over the past year. We can never repay the love that we have been shown, and we are forever grateful. We love you all.
Rob, Melissa, Matthew, & Raegann
Chemo Round 20 Review; Thanks for supporting Melissa's business!
As I write this, I'm sitting in the clinic receiving chemo round 21. If you'll remember from my earlier post, Round 20 was the first round with the elimination of the 5FU and the addition of the Paclitaxel. For the most part, my worst expectations about the new drug were not realized. Although the new drug, added to the Irinotecan, dramatically increased my fatigue for several days after the infusion, the nausea and other awful side effects I was expecting were mostly well-controlled with medication. My care team has told me to expect the complete loss of ALL of my hair over time with the Paclitaxel, but generally, the side-effects have been fairly minor compared to some previous regimens I have experienced.
Thank you for your prayers on my behalf - I am so grateful that the side-effects of this new regimen are manageable. The fatigue caused is overwhelming at times. After my last Wednesday infusion, it took until the following Monday for me to be able to do much more than move from my bed to the couch and back. Even taking a shower required a rest break before getting dressed because my system was so depressed by the chemotherapy.
Last Wednesday, I was finally feeling well enough to spend a day with my family. We spent the morning at the Dallas Zoo, and even enjoyed a picnic lunch near the elephants and giraffes. It was good to be able to get out of the house and walk around for a while, enjoying the time with my wonderful wife and children.
Melissa and I also want to thank the many of you who supported her business by buying the single earbud and writing a review. Our reviews number has more than doubled, which provides the social proof leading to ongoing higher sales numbers. Thank you!
For those of you who continue to pray for us, please remember the following requests:
- That this new chemo regimen will be uncommonly effective at treating my tumors.
- For faster recovery from each infusion so I can continue to meet my obligations as a teacher and faculty member.
- For strength for Melissa as she continues to bear a majority of the burdens related to running our household and caring for our children.
Why do you keep teaching?
Some people jump out of planes, or run marathons, or race mountain bikes on impossible trails. I teach. From a very young age there was nothing more exhilarating for me than knowing something that someone else didn't, and getting to tell them about that thing I knew. Eleven years ago, when I stepped into my first college classroom as an instructor, I remember my fellow first-timers expressing anxiety about their first class period. I remember nothing but exhilaration: An entire room full of people looking to me to guide them in a learning adventure. Breathtaking.
Charles Jones once said "You are right now who you will be five years from now except for two things: the people you associate with and the books you read." As a college professor, the opportunity to not only select books for my students to read, but the opportunity to be a person they associate with, at least for a brief time, is an important responsibility. Being a teacher affords us lucky ones unparalleled opportunities to shape our students' lives in profound ways. I love the communication classes that I get to teach; nothing is more rewarding than helping students find their voice and learn to communicate effectively and persuasively about issues that matter to them.
As I have grown and progressed as a teacher, I have found few things that are more rewarding than hearing from students (and even more so former students from long ago) that something they learned in my classroom made a difference in their personal or professional endeavors. These interactions with students provide that same exhilaration as my first day teaching: they are breathtaking.
Ever since my diagnosis, I find myself in a teaching role I would never have chosen, but one which I find even more important and rewarding. My assigned teaching roles, guiding students through the foundations of business or how to be an effective communicator, have been dramatically expanded. Through this blog and the countless interactions I have with students about my illness, treatment, and prognosis, I now find myself with the responsibility to educate my students through my actions about how to live the good life, the importance of making the most of each day, and the transience of life and its concomitant preciousness. Eventually, I will have the opportunity to teach my students how to die with grace and dignity. These are not lessons I look forward to giving, but ultimately they are probably the most valuable contributions I can make to my students' lives.
On Thursday mornings after a Wednesday all-day chemo infusion, I often wake up, look at my wife, and tell her: "I can't do this today." She patiently reminds me that my students are waiting for me, and without exception, the promise of a room full of knowledge-hungry students provides me the drive to get out of bed, dress myself, and make my way to campus for a few precious hours of class time and interaction. Some have asked why I continue to teach when the cancer symptoms and treatment side-effects present so many challenges. Why do I put myself through this? Because nothing is more therapeutic and healing than doing the thing that I love the most: teaching. It is the joy of my life - the thing I was born to do.