Giant Cell Tumor – Nearly 3 Months Post Op

Next Tuesday will officially be 3 months since the surgery for my giant cell tumor took place.  I still have good days and bad days.  Some days I manage a 4.5 mile walk.  Other days I can barely muster 1.5 miles.  While it still hurts every single day, some days are far worse than others.  I “finished” with physical therapy – which doesn’t in any way mean my leg is back to full strength or that my knee is 100%.  It means they’ve given me the tools to continue my rehabilitation on my own.

Random takeaways at this stage of recovery:

  • I’ve struggled with my focus, attention and memory retention quite a bit.  I have a difficult time concentrating and staying on task.  Sometimes I forget words.  I’ve read a few new studies about the affect of anesthesia on the mind and I wonder if that’s the culprit.  I was put under twice for a not insignificant amount of time in the space of two weeks (once for biopsy, once for the procedure) and was on a variety of pain medications for a month if not longer.
  • The hardware they installed is irritating, literally.  I can feel the top and bottom periphery of it.  The top, which covers the site of the tumor, is constantly irritated and tender – much more so with exercise.  I wonder if that will ever subside.
  • I’m able to fully straighten my leg, but still lack 5-7 degrees of bend as compared to my right leg.  Trying to bend it further feels both painful and just plain wrong, like there’s some resistance inside the joint.  Low level swelling is still present, and that may be the culprit.  I’ve been told it can take 6 months to a year for swelling to disappear entirely.
  • I’m frustrated by the fact that between the bone growth around the tumor and the hardware it appears that I may always have a prominent lump below my knee that I will have to be careful and cognizant of:

  • Weather has a profound impact on the joint. We had a few days in the high 50’s/low 60’s, and it felt comparatively wonderful.  We’ve also had days well below freezing, and it would feel as if it didn’t want to bend at all.
  • While I’m sleeping far longer than I had been, it still wakes me aching every morning without fail.  I often don’t feel properly rested regardless of how long I’ve slept, and and any extended exertion wears me out.  I still tend to be in bed between 8:30-9:00 every night (for proper perspective, I wake at 5:30 AM for work).
  • Remaining in any position for too long is a recipe for pain.  Sitting, standing, laying down, whatever.  If it isn’t allowed to bend or move for any period of time it begins to ache.

I miss running and biking, but I also know that to attempt either is a recipe for disaster.  Running in particular would be impossible.  I’ve tried a light jog.  The impact causes pain and the joint feels utterly unreliable.

The good news is, despite the challenges, I continue to improve.  The day of my PT discharge one of the staff told me they thought my surgery had been in October, not December.  That, I suppose, is a testament to my recovery.  While I don’t pretend to be at all versed in joint replacement, some doctors and therapists have said they consider this to be more debilitating and difficult to recover from than knee replacement.  I’ve been told the tibia bears the brunt of your body’s weight far more than your femur, so it being compromised – fairly significantly in the case of my not-at-all small tumor – is profoundly impacting.  I have no idea if this is true or not.

I’m posting all of this online, rather than in my private journal, because when I started researching after having been diagnosed I just didn’t find much out there to help me understand what I was in for.  I hope that other people diagnosed with giant cell tumors will discover these posts and find them helpful.

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