I’m still waiting. My last treatment was around 6 weeks ago. As things stand, I have a large tumor in my pelvis that is growing at an unknown rate, though I can now feel it when I move or sit in certain positions. It is uncomfortable, physically and mentally. I last met with my oncology team in Nashville on Wednesday, October 10th, and that visit was a whirlwind as we discussed new, targeted therapies and filled out paperwork with the goal of placing me on a phase 1 clinical trial as soon as possible. I left thinking I’d be back in a matter of days, but now it has been over 2 weeks, and I still don’t know what my next step is. The group in Nashville has been very helpful, but things haven’t fallen into place like we’d hoped. Currently, there are no open slots in the most appropriate trials based on my biomarkers.
As I mentioned previously, one of my concerns with my being on a phase 1 trial in Nashville is that I’d need to travel there weekly and stay a few days for treatment and observation. This would obviously be a major disruption to my family and work life, but we need to do whatever is necessary to obtain the best treatment. As a backup option, the Nashville group, Sarah Cannon Research Institute, offered to refer me to a doctor at the Winship Cancer Institute at Emory. I don’t love the idea of starting over with a new medical team, but if they have effective treatment options, then driving to Atlanta weekly is much better than the 300 miles to Nashville. So, after some consideration, I decided to schedule an appointment at Winship, and the research nurse at SCRI faxed over all of my information. The appointment is tomorrow, Oct 26, at 2pm.
The hardest part is wondering when I’m going to get started. I need this tumor to shrink or at least stop growing, because eventually it will grow into something more important than my colon and bladder, like an organ or the pelvic wall. Needless to say, I’m battling exhaustion, and I often wonder how much more I can take.
I told my family last night as we drove to dinner that I was looking forward to bed, and it has been this way, really, for several weeks now. Months probably. I remember, though, when I thought of sleep as giving up on the day, actually–if you slept too much you missed out on life. I wanted to go to sleep last and wake up first. I don’t feel this way anymore; I can’t wait to take off shoes, clothes, compression socks, body wraps, and straps and collapse into bed (my wife has enjoyed sleep for as long as I’ve known her, by the way).
Is it bedtime yet?
I woke up early this morning. 4:45 to be exact. I enjoyed a quiet time of meditation, prayer and Scripture reading. It was relaxing and is the best way to start a day, to soak in what we call “new morning mercies.” After I’d consumed my first cup of coffee, the rest of the household began their morning routines, which entailed each gathering in the kitchen or living room and staring, heads down, at their phones. I sat in the corner chair and watched them. I didn’t disturb their time. Instead, I looked at the other books on the shelves beside my chair. I picked up Screwtape Letters, by C.S. Lewis, and opened to a page toward the end (I’ve begun but never finished this amazing book). I happened upon the penultimate chapter and began reading. Now, if you’re not familiar with this book, Screwtape is a “senior demon” and he writes letters to his nephew Wormwood, a “Junior Tempter,” so, for them, gentleness and quiet of mind are bad things, while anger, malice, and impatience are good things (they’re trying to tempt a Christian to give up his faith). My eyes caught this:
Fatigue can produce extreme gentleness, and quiet of mind, and even
something like vision. If you have often seen men led by it into anger, malice and
impatience, that is because those men have had efficient tempters. The paradoxical
thing is that moderate fatigue is a better soil for peevishness than absolute exhaustion.
This depends partly on physical causes, but partly on something else. It is not
fatigue simply as such that produces the anger, but unexpected demands on a man
already tired. Whatever men expect they soon come to think they have a right to:
the sense of disappointment can, with very little skill on our part, be turned into a sense of injury. It is after men have given in to the irremediable, after they have despaired of relief and ceased to think even a half-hour ahead, that the dangers of humbled and gentle weariness begin.
To produce the best results from the patient’s fatigue, therefore, you must feed him with false hopes. Put into his mind plausible reasons for believing that the air-raid will not be repeated. Keep him comforting himself with the thought of how much he will enjoy his bed next night. Exaggerate the weariness by making him think it will soon be over; for men usually feel that a strain could have been endured no longer at the very moment when it is ending, or when they think it is ending. In this, as in the problem of cowardice, the thing to avoid is the total commitment. Whatever he says, let his inner resolution be not to bear whatever comes to him, but to bear it “for a reasonable period” — and let the reasonable period be shorter than the trial is likely to last. It need not be much shorter; in attacks on patience, chastity, and fortitude, the fun is to make the man yield just when (had he but known it) relief was almost in sight.
I admit this is a confusing read. I had to read it several times, but I’ve concluded that Mr Lewis is asserting that complete exhaustion can actually lead to strength of faith when the exhausted give up the search for solutions to their problems from the world and instead turn their lives over to their Creator in order to find peace. The alternative is hopelessness.
If I’m correct in my interpretation (please tell me if you disagree), then I totally get it. Every time I put my hope in the “next thing” and it ultimately disappoints, I get frustrated and angry. Sadly, this is too common.
There have been moments, for sure, when extreme weariness has gotten the better of me; I’ve “despaired of relief and ceased to think even a half-hour ahead.” But instead of this leading to peace, it has led to wanting to simply give up. I’ve thought of things to do with my time, such as work, hobbies, etc, and none has interested me. From my position in a chair or in bed, I imagine myself traversing a long hallway with many doors on either side. Each door leads to some activity something that interests me (or at least used to). I open a door to peek into the options therein but, finding no interest, close the door and keep walking. For all my searching, nothing excites me. At the end of the hall, the final door is to my bedroom, and, finding no better option, I enter and get in bed to sleep. (I should confess that I found a secret door that leads to Italy or some other incredible vacation destination that leads to a temporary peace, but that one is locked. From what I see through the small window in the door it looks amazing).
C.S. Lewis is right. It is when I’ve felt totally exhausted and questioned whether I can carry-on that I simply carry-on, in faith. If I’m in that last room resting, I leave it and see what my family are up to; my wife and 4 kids are busy with life and they want to share it with me. And what’s more, if my hope for an end to this current turmoil has run out, I find that my kids still hope like children, and so I persevere for their sake, at least. As Screwtape fears, I let go of anger and frustration to embrace a quiet of mind that comes with faith. To continue hoping that my next medical move might cure me, or to dwell on the possibility that I might soon succumb to the disease, creates much angst; to let it go and live in the moment, maybe a “half-hour” at a time, is to realize the gifts of mercy that accompany suffering and receive the strength to persevere and to continue opening doors that lead to new experiences, even if mundane.
So, I find that there is exhaustion that leads to life and exhaustion that leads to death. I love a good nights sleep after a day well-lived.
As to treatment, well, I’ll just continue to wait patiently. The Lord knows this isn’t easy for me, but I’m going to trust Him all the way.
28 Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light. — Matthew 11:28-30
** The featured image is a studly picture of me that Kim stumbled upon today. It was taken back in April, 2013 on the day of the surgery to remove the original colon tumor. I’m not going to show you what I look like now, but, suffice to say, I look and feel a little different…
** Did you know that I have a book? If you haven’t checked it out, see here: Two Stories