False Summit.

In my past endeavors as a long-distance runner and cyclist, one of the challenges I encountered was climbing hills that had a “false summit”. Every so often, you come upon a long, difficult, steep climb, where you work really hard to get to the crest, only to discover that what you thought was the top is only a change in the slope, and the climb continues for some distance after. There you are, reaching the point you’ve set your sights on, and you discover that it’s only partway to the actual finish, and there’s a lot more work ahead.

The time since the end of treatment has felt a lot like that.

For one thing, no matter how often and how earnestly they tell you that effects continue to worsen for up to two weeks past the end of treatment (oh, and by the way, thanks so much for burying that information in week 5 of treatment, guys), the real meaning doesn’t actually get across. What they mean is that they are giving your body so much punishment, it doesn’t all actually fit in to the treatment period. There’s a backlog. Just when you’re “done,” you really get worse.

(I will admit to wondering, in my darker moments, whether the intention is that the patient experience this part of the process when they aren’t scheduled to be in close proximity to those responsible for it, out of concern for the providers’ safety, or whether they figured that making patients also have to deal with going to appointments is just too much.)

Tissues that were already inflamed became more so. Areas that had not previously felt dry or painful started to. Problem spots in my mouth got more numerous and painful, to the point that eating anything by mouth became impossible. Saliva and phlegm got disgustingly thick and ropy. Everything bad turned up to 11.

So we’ve turned up our response as well. More applications of Aquaphor. A humidifier for the bedroom. In an effort to control the phlegm and get control of my fluid balance, I stopped using the relatively high-sodium, milk-based prepared formulas in the PEG, and switched to juice-and-protein-powder mixes of our own devising. Kimberly found a rice protein powder that mixes smoothly, and delivers a lot of body-rebuilding goodness.

I’ve even upped my dosage of painkillers, though I expect to still surprise the medicos.

All of which seems to have worked. I’ve now made it almost two weeks, day by day, night by night. I think I’m at a point where nothing is getting noticeably worse, and several things have started to get better, slowly, from their worst points. I think.

Or maybe I’ve just hit the worst kind of false summit. Sometimes, due to optical illusions and local effects, the road appears to have gone flat, but in reality is just slightly uphill. You find yourself struggling more than you think you should, and you’re unable to understand why it’s so hard to keep going. Aren’t we on the flat now? What’s going on? I thought that was the top. Did the climb take THAT much out of me? It’s really demoralizing.

Overall, I’m clearly getting better, but I’m still in a place where some things seem to be worse, or just different, each day, so I don’t have as strong a sense of “Yay! I’m getting better!” as I would like. The recovery is hard work, and slower than I’d anticipated. Maintaining morale is tricky.

I know I’ll get through this; it’ll just take time and continued “turning the crank”. But if my life were on Tivo, I’d be hitting the button to jump forward through this section.

13 thoughts on “False Summit.

  1. You are the little engine that could. “I know you can, I know you can, I know you can.” What does Anne LaMotte say? Just take it bird by bird. Day by day. Moment by moment. Know that we are all here right by your side. Stepping with you. I am about to go for a run, and my new mantra as I chug along is “shrink those tumors. shrink those tumors.” Thinking of you and Helen every step of the way. Pounding it into the pavement.

  2. Thanks for the update, Paul. I have been thinking of you & Kim frequently. I don’t pray, but I’m sure as shootin’ sending up my best thoughts for the both of you and for your continued strength & courage.

  3. well Cuz…if anyone can do it, it is YOU [and Kimberly]. I am glad that you are at the point where the road behind you is loner then the road to your recovery. The body is an amazing thing…and it does get worse before it is all better.

    You are getting there….better then I would!

  4. I must say that I appreciate your use of metaphor in these here bloggy posts. And of course, I appreciate the update. One of these days soon it will be the for real, no joking, guar-un-teed summit and you will get to ride downhill for a good long while. I can see you zooming by now, and you have a big grin on your face.

  5. Paul, do we tell you often enough how amazing you and Kimberly are?

    If there was a magic wand any of us could wave to make this go faster, we would do it. Let us know what we can for you – it’s yours. That includes praying, thinking happy thoughts in your direction – you name it.

    Hugs to you both.

  6. Thanks, everybody.

    And Janeen, I’m glad you appreciate the construction of these posts. Because, as I’m sure Browning didn’t write, “a blog’s reach must exceed its grasp, or what’s a ‘meta’ for?” 😉

  7. As miserable as it all is, I would guess that all this post treatment misery means you are getting post treatment benefits. I underwent chemo for some skin cancer and I was pleasantly surprised to be able to actually see the tumor shrinking for about six weeks after treatment ended until it was gone (I hope) but all that time I continued to experience side effects. Keep running up that hill! And give my best to Kimberly.

  8. Virtual hugs are the best I can send. You have already demonstrated strength few can show, and day after day. Your stamina is there to support your morale. The plateau before the downhill coast is near. D

  9. Brutal, I’m so sorry that you have to suffer like this. Sometimes the only way out is through. When Clayton hit his lowest, he didn’t have energy to even watch TV but we were able to distract him with reading to him or listening to books on tape. The Patrick O’Brian series that starts with _Master and Commander_ is very well written. Sort of like Jane Austen on the high seas. I hope the skin, even at its most painful, is starting to heal and that this new hell is temporary.

  10. Because unlike seemingly everybody else here I’m not a tireless optimist and I am a lousy cheering section, may I please state the obvious that all of this just sucks, and I’m sorry that the suckiness is still increasing?

  11. Rats! That just stinks! I’m constantly amazed at how you manage to just keep-on keeping-on. You and Kim are true survivors. I only wish you didn’t have so much difficult stuff to survive.

  12. Oh no! This was not the result you were looking for.

    So sorry this awful part got added in on top of everything. You made me laugh with your very logical reasoning about schedules designed to maximize the providers’ safety.

    The combination of misery and laughter in your writing is amazing and wonderful except for the misery part. Please feel better soon! (please is supposed to be “the magic word” right?)

Comments are closed.