Healing, Hacking and Harumphing

It’s been awhile and I have lots to catch you up on, so let’s dive in!  Today is 8 weeks post-op.  I have a little residual numbness on my right side, but nothing really bothersome. At this point, I think I can call myself healed from the thoracoscopy.  My next chest xray is scheduled for the Monday after Thanksgiving — I’m eager to see if there’s been any change or not. Fingers crossed that all looks the same as my baseline images!

I’m still trying to get off prednisone, though I have confidence I will succeed this time.  Until now, I haven’t been able to drop below 15 mg without getting wheezy.  My pulmo decided to try a slower step down, dropping in increments of 2.5 mg instead of 5.  I’m happy to say I’ve been at 10 mg for 4 days now and no wheezing!  As soon as I can get off prednisone, I’ll meet with the research team about joining the current protocol.  Thankfully, I haven’t had any of the typical side effects associated with prednisone (edema, “moon face”, irritability), but I’m still eager to be done with the stuff.  It suppresses the immune system, and since my #1 risk factor is infection, it’s gotta go!

MAC Attack?

Speaking of infection, I finally saw the infectious disease doc to talk about the MAC “colonization” in my right lung.  Dr. Campbell told me MAC (mycobacterium avium complex) is actually quite common, and is even found in drinking water. Most people’s immune systems fight it off no problem.  However, white women over 50 (guilty on all counts) seem to have a propensity for MAC infections.  The thing is, they don’t think I’m infected. The doc suspects I inhaled some MAC-infested water vapor during my shower the morning of surgery and my body hadn’t kill it off yet.

To determine whether or not there’s still MAC in my lung, the doc ordered a sputum test. Yes, it’s exactly what it sounds like — hack in a cup. When I agreed to the test, I didn’t realize there was a special technique involved. I guess saliva messes up the results, so I was instructed to expel the sample directly from my lungs into the cup — without touching anything. Short of performing the Heimlich on myself, I was unsure how I would actually do this. I did manage to get a sample that only briefly ricocheted against the roof of my mouth before exiting my body. I hope it was good enough because I am NOT doing that again!

Settling In

I’m now two months into my “new normal” and continue to struggle with understanding exactly what that means.  Friends are still finding out about my diagnosis and their reactions sometimes surprise me.  Most give a warm hug and offer prayers, both of which mean the world to me.  But it’s the look of horror on their faces and exclamations of “how awful!” that confuse me.  I guess it is awful — I would never have chosen this for myself or anyone else. Yet it is now a part of my reality, another piece added to my personal mosaic, just like my love of jazz, spy novels and mom’s meatloaf.

I’m sure the moment will come when I suddenly realize I’m not thinking about it, when grabbing my pony bottle will be as natural as grabbing my purse, when watching a sunset paint the sky with fire will once again simply bring joy in being at the right place rather than a conscious acknowledgement that I need to savor every moment.  Someday, the new normal will just be normal. I hope that day’s not too far off.

What’s up with you?

Breathing Freely — Another Step in My March Toward Normal

Not this MAC

The room is quiet as I sit down to write this post. Stephie’s silence is yet another indication that I am nearly recovered from my lung biopsy a month ago. During my pulmo appointment this week, I was able to walk 150 feet on room air before my pulse ox  dropped below 90%. And even though my sats dipped to 85, a minute of deep breathing quickly brought me back up to to 91 and the all-important “green zone.”

What this means is that I am no longer tethered to Stephie while at home.  I can roam freely throughout the house under my own lung power! Of course, this also means I can now reach the washer and dryer unimpeded, so I guess laundry moves back over to my chore column. Bummer.  But the joy of winding up that 70-ft. cannula more than makes up for it!

I still wear the cannula to bed, and take my pony bottles with me when I go out just in case I have to walk further than 150 ft.  And I will probably always use oxygen when I exercise. But I am finally starting to feel “normal” again.  In fact, other than a little residual numbness on torso that will go away eventually, I’d say I’m pretty much back to my old self.  Wait. That’s not true.  I’ll never be my “old self” again. Things are different now. I am different. But in many ways I feel stronger than I have in many years — stronger emotionally, stronger mentally and even stronger physically.  The wracking cough is under control. I’m eating better, treating my body with the respect it deserves, and I have a focus and clarity I haven’t felt for a very long time.

Monday I return to work.  I’m eager to see my friends and coworkers again and ready to get back to business.  I have to admit though, I’m a little nervous — nervous about how the new me fits into this final piece of the “normal” puzzle.  I’ll know soon enough.

UPDATE — My AFB is MAC

More news from my appointment last week — the lab identified the AFB they cultured from my lung.  It’s actually MAC (mycobacterium avium complex).  My kids laughed when they heard the name of the bacteria.  Our dog’s name is Mac (that’s him pictured above). He fancies himself a parrot and frequently perches his furry bum on my shoulder when I sit on the sofa. They thought perhaps I’d been exposed to a bit too much of Mac’s business end over the years. They may not be far off.  MAC bacteria are actually quite common in the environment, but usually only infect people with compromised immune systems or underlying lung disease.  The usual treatment is a year-long course of Zithromax or a combo Zithromax and Biaxcyn.

I see an infectious disease specialist next week for a consult.  Dr. Potts isn’t sure if I have a MAC infection, of if I’m just colonized with MAC (creepy, I know).  And the decision to treat isn’t a given.  I promised him I’d keep his life interesting and so far I’m living up to my word!

I’ve also dropped, 10 pounds which puts me 1/8 of the way to my goal.  At this point, I’m simply focused on eating fresh food with lots of greens, lean protein and whole grains.