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“He … set my feet upon a rock, making my steps secure.” (Ps 40:2)

Dear family and friends,

I got good news this week.  The CT scan I had on May 31 came back as “stable, no change.”  Short of a miraculous eradication of the disease, this is always a good outcome.  All I have to do is get 240 more of these (every 2 months for 40 years), and it probably means I’ll die of something else > age 85. 

The berry-yum was not a shudder-free experience, so I guess I’ve gone a little soft since Lent and need to toughen up.  I just realized I did not make it clear in the last post in which I mentioned a CT scan, but I did accomplish my goal of not wincing and shuddering while I…enjoyed…my smoothie.  I guess I was distracted by the whole Plan B situation.  Want to know something silly and juvenile?  I’m sitting here hoping you all believe me and don’t suspect I’m going back and trying to revise history by claiming that I didn’t get grossed out by the barium smoothie back in March.  Oh the things we are I am proud about.  What is this 7th grade?  It occurs to me that it’s completely arbitrary whether it’s today or two months ago that I self-reported meaningless reactions to minor inconveniences.  Gotta make sure the cancer peeps know!  You people are too nice to me, what with all your asking me if I’m okay.  Note to self: write a post on pride.  Note to you: maybe substitute, “Toughen up, Portholes!” for “How are you feeling?”  That would actually do me a lot of good.  Okay, moving on.

I figure I should give an update on the new drugs:  I can tell I’m on them, but it’s a cake walk compared to interferon, for which I decided to start being grateful way back in ’18.  For the first 2-3 weeks, I had no side effects.  That’s a big contrast to interferon, which caused me to fall asleep shivering and with aches at about 8:30 pm on the very first night I took it in 2007.  In my last post I hinted that I might be starting to feel some side effects.  I’m now convinced that I started feeling the new drugs about 2-3 weeks in, and here we get in to some territory that borders on the embarrassingly trivial side effects of the clinical trial drugs. 

To provide more detail than I did the in the last post, I started feeling like the soles of my feet were slightly bruised.  Then I had some pain and stiffness in my ankles.  It was mild enough that I thought I might just have reached the age at which I started having morning aches and pains and that I was just going to have to take some extra time in the morning to get going.

It progressed over a few days to the point that it was pretty painful to get out of bed and walk to the bathroom in the middle of the night or first thing in the morning.  I told two oncologists about it, and their reaction was what I’d call “comically unsympathetic.” 

I was advised to take some motrin and keep them posted.  It worked pretty well to take the motrin and just get moving, and I found that none of what I was feeling was actually slowing me down.  And by the time I was several hours into the day, having taken a few doses of motrin by then, I really wasn’t in any pain.

And now that I think of it, to back it up before I even asked a doctor, of course I asked the internet.

Why do I keep going back?

I asked my oncologist friend about the “comic unsympathy”.  He helped me remember that interferon was much harder, and that oncologists also care for people who get hospitalized because of the intensity of chemo side effects.  It was a good wake up call to how easy I’ve had it.

Even so, the early morning pain and stiffness was strong enough that I decided to stay home from the Boy Scout backpacking trip my three oldest boys went on.  While I thought I could almost certainly make it, I didn’t want to get out in a remote place and need others to carry my pack – or me.  This was a bigger hit to the pride than worrying about whether people believe me about the barium smoothie.

Alas, wasn’t meant to be this year

Okay, so this is turning into a post about pride anyway.  Maybe I’ll cover that before I wrap it up.  In any case, I was telling one of the little kids what the scouts would be doing on their backpacking trip, and she said that sounded like fun and that she’d like to do that sometime.  So, we planned an at-home backpack trip with a hike around the block, tent in the yard, and hot dogs over a fire.

It ended up being great – the best thing I could have done that weekend.  I’ve been gone on a lot of scout trips that I couldn’t bring our little kids on.  This was a perfect impetus and opportunity to include them on something mysterious that their big brothers have gotten to do many times.  All because I had to get over myself and not try to prove by brute force that I can backpack in ill-advised situations.  Okay, I’ve talked myself into ending this post with pride.

Anyway as I said, the motrin helped a lot with the pain.  The foot and ankle pain was joined by some knee and lower leg aches, all very manageable with motrin.  Then the pain stopped for almost two weeks and I’d take motrin one time a day or not at all.  Then it started to creep back, and I even had some wrist, upper body, and palms of hands aches, plus itchy eyes and a non-irritating rash that seemed like it was under the skin instead of on the surface.  Most of that went away quickly.  Other than the first two weeks and the two weeks in the middle with no issues, the most consistent effects have been aches in the knees, ankles, and soles of feet.  But I want to stress that the doctors were right to be comically unsympathetic.  Night and day difference compared with the dearly departed interferon. 

Anybody been hoping for a hair update?  Well if you insist.  About two weeks ago I decided to give in and just go with the razor shave.  The baldness patterns from the radiation were just too weird and the clippers weren’t cutting it.  It also appears that some of the radiation bald spots are coming back gray, so I might be next in line for the Holstein pattern.  For now, it’s the razor.  The kids haven’t even noticed yet, so I’m going to see how long it takes them.  No tipping them off.

Okay, regarding pride: many great spiritual masters have said that pride is the root of all sins.  And I think the danger is in thinking that because I’m convinced I’m not really caught up in what car I drive or whether I have the same size office as everyone else or whether I got an award for this or that – that since I at least tell myself those things don’t matter to me, that I’m not a prideful person.  But as I’m demonstrating as this post comes together, pride sneaks in everywhere and it can make us unbearable.  If my thoughts become preoccupied with what people think about me over some trivial matter, it’s just as bad as the big obvious ways that we can assume are the only true watch-outs.

The best remedies I have found for sneaky pride are:

  1. Praying for others – good to get out of myself
  2. Performing acts of service for others they’ll never know I did for them
  3. Forcing myself to work on listening to others – good for breaking myself of the habit of assuming that everyone wants to hear my opinions on all subjects at any time, that they’ll think all my jokes are funny, and that my ideas are the best
  4. Breaking my workday up into hours that I dedicate as a prayer for one individual who needs it, and then working intensely for that hour to make sure that prayer is the best I can offer.
  5. When something goes right for me, trying to think of who I can thank before the instinct to congratulate myself settles in.
I’m better at some of these than others and perfect at none of them.  But I’ve picked them up from people I admire, so whenever I think about how I want to be more like that person who clued me in to one of them, it does usually occur to me to make a resolution that will help me get better in one of these areas.
Next milestone is the brain MRI, which will be in about a month and will tell me how the radiation did.  Please know that I pray daily for all of you and that despite a few aches and pains, I’m in a very good place.
With fortitude and prayers for you,