Chemo round 4 review
I am very pleased to report that Round 4 of chemo was the easiest yet! My oncologist lowered the dosage of my chemo drugs in Round 3 to try and reduce some of the adverse side-effects, but it didn't really work, so for Round 4 I was back to my original dosages. For some reason, this round produced almost no nausea and no pain. The fatigue was noticeably more with Round 4, but trading added fatigue for reduced nausea and pain is a trade-off I'll take every time!
I've also begun receiving iron infusions on Wednesdays following my chemo on Mondays to help improve my iron-deficiency anemia (which is caused by the chemo). I haven't been able to receive iron infusions up until this point because the sinus cavity tumor biopsy had not been completed. Although I believe the iron infusions may have added to my fatigue with Round 4, during my off-week I have felt better than I have in months. It has been a blessing to be able to have some "normal" days with my wife and children.
Next Monday I will have Round 5 of chemo, and will be going back down to MD Anderson in Houston on June 16-17 for scans to determine whether the chemo is working to slow the growth of the stomach tumor and the cancerous lymph nodes.
Thank you so much to all of you who continue to intercede on our behalf. Please continue to remember the following requests:
- For unusual efficacy of this chemotherapy against my specific cancer.
- For continued easing of the chemo side-effects
- For good news from the scans in June.
Finally, some good news; Chemo round 2 review
Last Friday, I spent the day in a surgical center to finally complete a biopsy of my sinus cavity tumor. Today, I met with the ENT specialist who did the biopsy to find out the results. Thankfully, the initial impressions of the doctors at MD Anderson were confirmed. My sinus cavity tumor is a benign neurofibroma, and not a metastasis from my stomach or a second primary cancer.
I told my ENT that he was the first doctor in three months that had delivered good news to Melissa and me, and he was, of course, happy to be bearing good news. Because of the size and location of the tumor, he recommended following up with the head and neck specialists at MD Anderson for treatment options. Given that it is a slow-growing, non-malignant tumor, he advised that the likely course of action will be to wait for a year and see how much growth has occurred. Eventually, the tumor will begin to cause problems as it is very close to the brain and optic nerve, but it may remain asymptomatic for quite some time.
Melissa and I were so glad to finally receive some good news... Thank you to all of you who have been praying with us that this would not be a second primary cancer!
Last Monday, I spent the day receiving my third round of chemotherapy. My tests for enzyme levels and chemo toxicity did not provide any clinical rationale for the significant side-effects that I experienced during Rounds 1 and 2. However, my oncologist did reduce my dosage for both the Oxaliplatin and 5FU by about 5%. He also prescribed a morphine-derived painkiller for use as-needed in the days following the infusion. Although I experienced the same levels of fatigue and more significant nausea in Round 3 compared to Round 2, the pain was more well-controlled, which made the overall experience of Round 3 more bearable. With three rounds of chemo finished, we all know a little bit more about what to expect, and have somewhat settled in to a predictable rhythm of good days and bad days. By this morning, I was feeling much better, and was able to spend almost a full day at work completing end-of-semester tasks.
When our son Matthew was born, Melissa made the choice to teach part-time, and stay home with him most of the time. She continued in that arrangement after the arrival of Raegann, teaching statistics and research methods classes in the Ph.D. Psychology program at UT Southwestern Medical School.
We have recently begun having the difficult discussions about preparing for her to return to full-time work, and the types of full-time jobs she might enjoy in the eventuality that she needs to be the breadwinner for our children. As a husband and a father, it is difficult to think about your family going on without you. Certainly, we hope and pray for the best possible outcome, but recognize that we must plan for every eventuality. I know that whatever happens, my children will be so very well-loved and cared for by their mother, and I am grateful to have a partner in life who leaves me in no doubt about the wellbeing of my beautiful son and daughter.
I continue to be surprised, almost daily, with notes of encouragement, Facebook messages, care packages, text messages, and phone calls from those of you who love our family and want us to know that you care. It is so much better to walk through this knowing there is an army of support behind us, and that we are not walking this journey alone.
We covet your prayers on our behalf. Please continue to pray for strength and endurance for Melissa, for the efficacy of this chemo regimen against my cancer, and for celebration on the good days that we enjoy together.
Chemo round 2; Week in review
Monday's chemo infusion appointment was fairly uneventful. Similar to my experience with Round 1, the infusion of oxaliplatin and connection to the 48-hour pump of 5FU didn't create any immediate side effects. I was able to eat a normal lunch and dinner on Monday, and Tuesday morning, I was able to go in to campus and teach my classes, but went home to rest immediately after finishing my second class at 12:20pm.
Tuesday afternoon and evening between the hours of 2pm and 10pm may have been the worst 8 hours of my life. Between the waves of nausea, overwhelming fatigue, and stabbing abdominal pain, relief was rare and temporary. None of the palliative medications, including my narcotic painkillers, provided any relief. For some of this time, I literally sat in by bed, rocking back and forth and weeping because the sensory overload was just too much to handle. As the evening turned to night and then morning, the pain lessened somewhat, and hours-long stretches of sleep provided some relief.
Wednesday, I stayed in bed and slept as much as possible until my appointment for an infusion of IV fluids and more anti-nausea medication. Thankfully, the fluids and nausea meds worked, and the nausea mostly subsided by early afternoon, so I was able to go in to campus for some end-of-semester student presentations. By Thursday morning, I was feeling nearly normal except for the fatigue, so I was able to again teach my classes, and then return to campus in the late afternoon for more presentations. Throughout this time (Tuesday-Thursday), I wasn't able to eat much beyond grapes and watermelon, and even that was in fairly small quantities. Thursday night was perhaps my best night of sleep in the past three months, with 8+ hours of uninterrupted slumber.
Friday morning, I had the CT angiogram to examine the blood flow to the tumor in my sinus cavity. I'll meet with the ENT specialist on Monday to discuss the results and find out if the tumor can be biopsied. After the appointment, Melissa and I went out for lunch, and I had my first real meal since Monday (a delicious cheeseburger with fries from Taco Diner).
Today, I've been eating more normally, and aside from lingering fatigue, feel nearly normal again. My local oncologist is still confused about why I've experienced such severe side effects to this chemo regimen, so he ordered some additional blood tests to check for enzyme levels and chemo toxicity that might explain this pattern.
My favorite part of the week was sitting on the floor tonight, reading dinosaur books with Raegann and Matthew. I haven't had the energy for most of the week to spend any significant amount of time with either of them, so it was encouraging just to be able to hold them in my arms and have a shared experience. Each moment like this becomes so precious when the circumstances of your life make its transience so salient.
I don't know how old I was when I first understood the concept of death, but I can't remember a time when I didn't cognitively understand that life was a finite thing with a beginning and an end. It's pretty easy to give mental assent to the idea that we will all die; in my experience it's been another thing entirely to experience that mortality in the form of a Kaplan-Meier curve. It is, all at once, enshackling and emancipating. On one hand, the clock is ticking down, and on the other, every second is a gift. In this liminal space between life and death supplied by a Stage IV cancer diagnosis, I've found myself shifting between these perspectives, sometimes mutliple times within the same moment. In trying to find myself in the perspective of emancipation more regularly, this week I have been reflecting on Psalm 90:12: "So teach us to number our days, that we may apply our hearts unto wisdom." As I've considered my own life and the concept of numbering my days, I think the Psalmist is recognizing that a healthy perspective on our personal mortality results in fewer wasted moments. As we recognize, rightly, that every second is a gift, we find ourselves wasting fewer moments, and using our time more wisely.
Melissa and I continue to be grateful for all of the support that we have received from family, friends, neighbors, and those in the community. For those of you who are praying for us, here are the specific things you can remember this week:
- That we would "number our days" and make wise use of the time that we have.
- For continued progress toward diagnosing and developing a treatment plan for my sinus cavity tumor.
- For unusual efficacy of this chemo regimen against my specific cancer.
Thank you for caring for us in so many ways, tangible and intangible. We are so thankful.
Update on the sinus cavity tumor; Chemo round 2 starts Monday
This week has been wonderfully normal. My aunt and uncle were visiting Dallas from Washington state this week, and we had the opportunity to spend many wonderful hours with them during the week. Both Matthew and Raegann took an instant liking to Uncle Ken and Aunt Julia, and spent most of Wednesday's outing to the Dallas World Aquarium perched on Uncle Ken's shoulders or walking with Aunt Julia. Although fatigue usually came early in the afternoons for me this week, it was wonderful to again have family visiting and to have days that seemed so normal.
This morning I had an appointment with an Ear, Nose, and Throat (ENT) specialist here in Dallas for a consultation regarding my nasal cavity tumor. Looking at the latest MRI, my doctor was surprised that the tumor has not caused any symptoms thus far, as it is a fairly large (nearly tennis ball sized) tumor and is very close to both my brain and my optic nerve. He has scheduled an angiogram CT scan for next week to look at the blood flow into the tumor to determine whether a biopsy is possible. Assuming a biopsy is possible, I will likely undergo a surgical procedure to biopsy the tumor sometime in the next two weeks. We remain hopeful that this is a slow-growing, benign tumor. However, it seems to be the case now that this tumor will need to be removed at some point.
Based on the tumor's location and size, it may be a very complex operation to remove it. The ENT shared that he had experience with similar tumors being removed successfully at MD Anderson, but that the operation sometimes lasted over two days because of the complexity of removing large sinus cavity tumors. Complicating things is my chemotherapy schedule. The operation to remove the tumor cannot be completed while I am undergoing chemotherapy for the gastric cancer. Thus, we must establish some stabilization of the gastric cancer such that a long enough break can be taken from chemotherapy to allow the surgical resection to be completed and my body to recover prior to resuming chemotherapy.
My second round of chemo will begin on Monday. The last round was very rough. This time, my oncologist has ordered a slower infusion of the Oxaliplatin, which may reduce some of the side-effects, and has also ordered more anti-nausea drugs in the pre-medications I receive before the chemotherapy. I have lost nearly 30 lbs. in the past 3 months, which puts me near a healthy weight range for the first time in years. However, I am reaching a weight where it would be best to not lose much more weight. With that in mind, reducing the nausea and fatigue during chemo weeks is critical to helping me maintain my current weight.
I feel very fortunate that my undergraduate academic advisor, professor, and friend has been calling me several times each week to check on my progress and to offer his encouragement through this time. This week he left me with something to "chew on for a bit."
"We are not responsible for the length of our life, only its depth."
As I've ruminated on this, I've been thinking a lot about what it means to live a life with depth. I've come to the conclusion that the only thing that really matters is to love God and love others. Consistently accomplish those two things, and your life will be meaningful, no matter its length. We continue to be so amazed and humbled by the number of people who are following our story, encouraging us, helping with childcare and household responsibilities, and praying for us. Here are the specific intentions you can remember this week:
- That the nasal cavity tumor would be able to be biopsied, and that the results would confirm a benign, slow-growing tumor.
- For reduced severity of the chemo side-effects, especially the fatigue that makes it difficult for me to fulfill my responsibilities at work.
- For unusual efficacy of this chemo regimen against my cancer.
Treasuring the good days
Today was a good day. After the hellish week that the first round of chemo put my body through, it was such sweet relief to have a brief respite. I had my best night of sleep in probably two months on Friday night. For breakfast on Saturday, we went with my mother- and father-in-law to one of our favorite local places, Mama's Daughters' Diner. Although I haven't been able to eat nearly the portions I am accustomed to, I still managed to down two eggs with cheese, two sausage patties, two cups of tea, and half an order of hashbrowns.
I'm trying to take joy in these times that I have with my family when life seems normal again, without letting my mind wander to the dark thoughts that these moments are only temporary, and may end sooner than any of us hope.
In truth, this impermanence of life is true for all of us, but when you get a provisional expiration date from your doctor, it becomes more salient. In that moment, your priorities shift pretty radically, very quickly. Long-term dreams of seeing your young children grow up, of cherishing your beautiful wife into old age, of nurturing decades-old friendships, of achieving professional success and advancement, all of those evaporate. Instead, your priorities and dreams and goals become very near-term: what can I do today to show my children how much I love them? What can I do today to love my wife well? How can I reach out to a friend and encourage them today? What can I teach my students about life through this experience?
I wish one thing for all of you who are following my treatment and this blog: don't waste your time. Build deep, strong, meaningful relationships with others. Love God. Learn as much as you can. Share the gift of your attention and of a listening ear. And make the most of every good day.
Thankfully, the nausea has passed for this round, although the fatigue is still oppressive. I am hopeful that a planned iron infusion early next week will help reduce some of the fatigue that has kept me down for many of the last few days. For those of you who continue to pray for us, thank you; we are so grateful for each of you. Please continue to remember these requests:
- That the chemo drugs would be unusually effective against my cancer.
- For Melissa's energy and patience as she bears the majority of the household and childcare duties.
- That each of us would make the most of every moment we have together.