Walking!

OK, so I thought I'd do a "good news" post :).

1. I've been more or less steadily recovering for around 3 weeks. My walking has gone from around the house to around the block to a 20-minute walk in the morning. My feet are still tingly/painful, and my back/hips are stiff and weird-feeling (and I still have some odd nerve sensations in various places), but it's much more manageable, and I can do the basic things of life (and actually enjoy them). Yay!

2. I'm sleeping *somewhat* better, which might be related to this. I've gone from maybe 4 hours a night (my average from April through June) to a little over 4.5 hours of sleep. I'm using sleepio.com (it seems connected to Britain's NHS?) to do online CBT-I, if any of you insomniacs are interested in trying it with me. I'd someday love to sleep 6 hours :).

3. I talked to a spine specialist today, and they told me what I guessed: I have some pretty generic spine issues for my age: a bit of arthritis here, some bulging discs there, but no "red" flags (and no sign of cancer). My blood markers--thyroid, inflammation, potassium, calcium, etc.--all seemed normal. The specialist mentioned the possibility of a nerve getting bothered by some movement I didn't even notice, or perhaps some lingering side-effect from chemo all those years ago (the feet bit, especially), and the sleep issue possibly being related to fibromyalgia-ish symptoms. The fact that I wasn't in extreme pain means that none of this especially matters to the next step: going back to PT and trying again.

4. In the end, I'm pretty happy/optimistic that things seem to be (slowly) getting better, but am still a bit skittish about not knowing what exactly caused the whole "I can't walk" thing. (I'd prefer to avoid a repeat...). 

In any case, this should be my last post for a while (hopefully).  Thanks again for all the support!

Brendan

Back on the Deck Chair

 Hi, everyone, 

Thanks to everyone who's helped with meals, or stopped to visit me, or just sent texts asking how I was. It has really made me happy :). 

Since I got a few texts asking about it, I thought I'd write a brief update on how things have been going. 

1. First, the good news! I had some better days, starting around a week ago, and was feeling pretty good last weekend (when some friends visited). I managed to walk around the block, and up the stairs. I could cook and I drove a car. I've been going cane-free. I went to Rochesterfest on Wednesday.

2. Today and yesterday have been rougher, perhaps because of lack of sleep, or because I overdid it at some point in my excitement at being able to walk? I'm back sitting on the deck chair again, if anyone wants to stop by for a beer. I'm hoping for more progress, obviously, but it's nice to know that there can/will be better days.

3. I got my cortisone shot on Tuesday. The day of the shot went really well (I felt great in the morning before the shot, and for the rest of the day). It's probably too soon to say much about whether it worked. I feel better than I did two weeks ago, but maybe not as well as last weekend. My sense is still that it might be a disc/nerve issue, and it might not be (or, it might be a disc issue plus something else). 

4. My symptoms at this point definitely feel much more like "nerve" pain than muscle pain. There's often "electric" pain down my left leg and both feet, my hips are tight/weird, and my lower back/upper glutes constantly feel like they are tingling/squirming/twitching, as they have been for around a month. Too much movement seems to aggravate things. If that gives anyone new ideas, guess away!

5. I have a spine center appointment in mid-July.

Update: Bulging Discs?

A quick update: I got back my lumbar spine MRI today and things looked generally OK (no weird unexplained growths or anything terrible!). There are some protruding/bulging discs that might be hitting nerves, though, and my primary care provider has asked the Spine Center at Mayo to review my file, and consider seeing me. I don't really know much about the timeline for this, but hopefully, I'll know more soon. In terms of my actual pain, yesterday was tough (walking around Mayo hurt), and today's much better.  If it ends up being bulging discs, this would be awesome (well, not exactly "awesome", but definitely on the better end of things).  

Update (6/16): It sounds like I'm going to get an epidural injection to L5-S1, and then see the Spine Clinic in a month. Hopefully, this works!

A New Complaint

I have a new post.

It's been a long time (9 years!) since I've last posted here. I used to blog about my cancer treatment here (see my old posts), and abandoned it when my treatment was completed. It's been a good nine years--Anne and I have moved back to Minnesota, adopted a son (!), bought a house, spent lots of time with our families and old friends (and met some new ones). We've moved from Champaign to Winona to Rochester. All of my subsequent cancer scans and screens have been as clean as I ever could have hoped. Yay!

So, there's lots of good stuff. Now, onto the post. Over the last few months, I've slowly been losing my ability to move in all sorts of ways (first running, then biking, and finally walking and even standing), and I'm not sure what's causing it. As opposed to diminishing, the pain just seems to increasing in intensity, and spreading to new areas. The proximate cause is stiffness/pain in my backs, hips, and (recently) calves, groin, and feet. I don't know what's driving all of this, though, and that's what is bothering me. (Note: The massive amounts of Google-Scholaring research articles related to my symptoms has, shockingly, not really cleared things up.) It's stressing me out, and I thought I'd try writing a blog about it. 

In any case, I don't *want* to be the person who sits around and thinks (or even worse, talks!) about my aches and pains all the time, as that can be both stressful (for me) and boring (for you, hypothetical readers).  In recent weeks, I've felt like one of those old, cranky invalid ladies that populate 19th century novels, and provide comic relief with their caterwauling and complaining. It's given me sympathy for them! But I still suspect it's not a great model for life.

With all this in mind, I thought I'd write down my story so far, at least as it seems to me today.  This way, if I start to talk about it, you can say something like "Yep. I read all about it," and we can talk about more interesting things :). That being said, my experience has been that "today's experience of illness" bears only a family resemblance to last week's experience of it, or (in all likelihood) to next week's experience of it. So, I'd encourage you to read this all with a friendly sort of skepticism and to let me know where things don't seem right.   

Also, I really am open to advice and ideas. Many of you are very smart! Let me know if you have any thoughts.

The Short  Version: 7 points

I often stop reading essays after 1,000 words or so. If you're like me, here's the short version.

1. I have pain in my butt, both legs, and (very) low back. What hurts worst varies by day, but it gets worse with movement, and is better when sitting, at least in the exact right chair. If I avoid moving almost altogether, things can seem OK. If I exacerbate it in any way, the pain will spike for days afterward. My muscles in my low back/upper glutes constantly twitch and spasm. 
2. It started in February (seemingly related to exercise), but has steadily gotten worse. At first, I couldn't bike or run. Then, I couldn't walk long distances. Now, even walking around the house (or standing, or driving) can be painful. I
3. The only area that I can with any confidence identify as being "hurt" is my right butt/lower back area. I have been limping on and off on this side (I walk with a cane) for at least 2 months. Stretching/moving this area (e.g., using the stretches I learned in PT) seems to aggravate my more general symptoms.
4. Things I can't currently do (at least without pain) include: walking one block, driving, climbing stairs, lifting Harry, biking on the stationary bike (easiest setting) for 2 minutes, or (on occasion) crossing my legs. Taking a warm/hot shower also seems to aggravate my pain (don't worry--I'll continue to do it anyway!)
5. I have a clean X-ray and (Pelvic) MRI. My cancer markers (from December) were fine, as are my inflammation markers. Arthritis (or ankylosing spondylitis), cancer, and a herniated disc all seem unlikely. (Update 6/9: Apparently, I need another, lumbar-spine MRI to more definitely rule out cancer or a herniated disc).
6. Things I've tried: avoiding strenuous exercise (early on), physical therapy (April-May), ibuprofen/Tylenol/Aleve (on and off), Prednisone with almost complete rest (recently). None of these have seemed to help, at least so far.
7. I'm (hopefully) going to get in to see a specialist at some point. I'll update this when I know more.

The Longer Version: A History of Illness

I'll forgive you if you stop reading at this point (I might!). However, given that I have more time than I know what to do with, here's the longer version of my story.

First, a brief (non-cancer) medical history. Like many people (recreational athletes, especially) I have a history of both Achilles tendon and back injuries, going back at least to my mid-twenties. I'd say I've probably had more than most other people, but I've never had the terrible, life-altering back problems that some others I know have had (for which I'm grateful!). I statins for high cholesterol. I also had a cardiac arrhythmia as a child (maybe someday I'll write about it).

Now, onto our narrative:

January, 2021. I felt pretty good in January. I'd lost around 15 pounds over the past semester, and had started a "mindfulness" practice of meditating for 10 to 20 minutes/day. I'd just finished the first semester of my sabbatical and had gotten "As" in all of my coursework (yay!). Harry had just discovered that he really, really, really loves Frozen (he still does, and is in fact watching it as I type this). My sleep wasn't the greatest (I kept waking up at 5), and my left Achilles started acting up by the middle of the month, so I quit running altogether, with the thought that I'd take up in sometime in the spring again. I was in a good mood!

February, 2021. February was pretty cold, and most of my exercise was on the exercise bike downstairs at our house (generally between 30 and 60 minutes per day). I felt a bit stiff and sore at points, and probably should have taken more days off, but I really don't remember feeling awful or anything. I went cross country skiing once, on February 20th, and *definitely* pushed it a bit too hard (I skated fast for probably an hour; I now look on this as the most likely "cause"),  but didn't feel like I injured anything, and woke up the next morning feeling OK. Then, the next day, I went on the bike in the afternoon, and felt a bit off, but pushed through it (again, though, I hadn't even felt anything worthy of pain meds). The next morning, Feb. 22, I woke up and my whole lower body (everything from my lower back down) hurt. I decided to take 3 days off, and then tried biking again. It felt weird/bad, but not in an easily describable way (this has been part of the issue for me). It wasn't until the next morning I knew for sure it was a mistake. I took another 3 or 4 days off, and tried *slowly* jogging two miles, just to change things up. I woke in pain. By the end of the month (or the beginning of the next month), I'd quit biking indefinitely, and decided to stick with walking. 

March, 2021. For being injured, I was pretty optimistic. I bought myself a "step" counter, and decided to try to walk 12,500 steps/day (which is pretty normal for me in the summer, though I definitely hadn't been walking that much in the Spring). Walking went OK, but it never felt "normal"--it always seemed like my legs didn't move/work quite the way they were "supposed to."  However, it wasn't causing me any pain, and so I just figured it was one of those weird muscle things that would sort itself out with time, so long as I didn't stress it out by trying to run/bike on it. My back periodically hurt (especially at night, or while sitting), and I popped some Aleve now and then. Early on, I definitely did too much pacing indoors (i.e., I'd walk around in circles in the basement while watching my class video lectures). By the end of the month, my Achilles felt a bit off, so I stopped doing that, and aimed for a reduced step count. 

April 2021. April 1 (my first COVID shot! Yay modern medicine!) was another turning point. By this time, I definitely noticed something was wrong with my stride--both in my Achilles and in my hips/back. Everything just felt stiff/wrong, to an increasing extent. My last real "walk" was the day before my first COVID shot. By the next day, at work, my left Achilles just wasn't working in terms of getting me any further than a  block or so.  I contacted my primary care doctor to set up a PT appointment for mid-April. However, things kept getting worse from there. My back/leg pain (and my sleep) got worse over the second week of April, even as my activity decreased. I couldn't meditate anymore--it was just too tough to concentrate. The NSAIDs I was taking (Aleve and ibuprofen) started giving me digestive issues, and I had to go back to plain old Tylenol.

 I ended up in the ER on Saturday, April 10 for back and leg pain, mostly because I couldn't get into "Acute" care (it's a long story, but because I'd kept my primary care doctor in La Crosse, I wasn't allowed to go to the Rochester Mayo non-emergency location). They did an x-ray of my midsection, which didn't show any obvious signs of cancer or fracture (though with the caveat they'd recommend at CT or MRI if things didn't improve). The docs were all very nice, and I felt terrible for going to the ER for something so small. In any, clean x-rays! Woo-hoo! From here, it was on to PT and to the medical system. I felt pretty hopeful the day after the ER visit. 

May 2021. My early experience with PT (in late April and early May) were decent, though my body never quite responded to exercise in the way I thought it "should", based either on my previous experience or on the (many!) books I've read about strength and endurance training while working at Human Kinetics. My PT seemed perfectly competent, and I think I probably would have told me the same thing she told me (basically, that it was safe for me to exercise, despite my vaguely articulated sense that something was "wrong."). This is the kind of shit patients say/think all the time! 

 I found I really did get better at the exercises (bridges, short stationary bike rides, swimming), which made me happy, but the sense of discomfort in my lower back, legs, or hips. never really went away, and seemed increasingly exacerbated.  Even the easiest exercises (a slow 10 minute bike ride, a walk from my office to the other side of the building) never really felt easy/natural. There was always a sense of "wrongness" when I tried to move, like all of the muscles in my body were expecting...some other muscle? to help them out, and they felt stiff and awkward (and more than occasionally, painful) as a result. I often didn't know how much was "too much" until the next morning. Both of my Achilles tendons (the left, injured one and the right, "healthy" one) were pretty consistently sore from the exercises, but this is what my PT (and everything I read on the subject) led me to expect!.

Starting in mid-May, the pain started to increase in intensity. It started hurting to sit, and then to lie down, or stand. Walking felt increasingly stiff and awkward. I tried to do one 20 minute bike ride after I "progressed" in my PT (and learned new, harder exercises), which I loved (endorphins!). The next morning, though, everything was much worse, and I could barely sit,, or walk, or stand. My pain medication went from Bengay to Tylenol to (max Tylenol + max ibuprofen), and my back/hip/leg pain has progressed even as I've scaled back to "week 1" of PT (5 minutes walk/bike ride, neither of which are doable right now for me). 

June. In late May, I got in for an MRI (which was clean). I basically stopped doing PT altogether, given the progressive increase in pain and loss of function. I've tried to move as much as I can around the house (I don't want my muscles to atrophy), and yet my symptoms continue to progress. I've had some stretches of "good" days (where I barely move, and can get by with minimal pain pills) and "bad" days (where I somehow move incorrectly and am in constant pain for 24 hours).

In any case, I'm not sure what to make of this. I can certainly tell a story where each progression in pain/stiffness is caused by some sort of suboptimal, counterproductive rehab decision (from skiing too hard to walking too much to an imperfect PT plan to starting a recalcitrant lawn mower), perhaps combined with some sort of odd back muscle/nerve issue that set the whole thing off. And to be clear: that's what I'd prefer. However, its hard for me to be confident that this is the "whole" story.

More to come, at some point.