Keep riding that roller coaster

(8/17/09)

Well, I'm hoping I don't get stuck on a stopped ride like these people, but I'd also like to get off of this thing at some point. My roller coaster appears to have more downs than ups of late, which makes for a strange ride.

The short story is, I'll be getting more surgery on Wednesday (August 19th) to see what's been wrong with my lungs. Although my most recent PET-CT was clear except for the two nodules that were there before and seemed to be going away, I've been having respiratory symptoms that have gotten progressively worse over the past month or so. It started with a slight chest tightness when I would inhale deeply. I mentioned this to my doctor in mid-July but no one thought much of it, including me. After Lake Shasta (see last post) I felt more tightness and pretty serious fatigue and went to the on-call doctor. She said my lungs sounded fine and didn't have any of the characteristic wheezing or other issues that come with respiratory infections. Also, my red cell counts were fine, so I wasn't dangerously anemic (which can make you feel fatigued, but so can chemo). The following week I was starting to cough a bit with deep inhalations, and I went to see the radiation oncologist resident (my rad onc was out of town) to see if there was any connection to the lung radiation I've had. She said it probably wasn't due to the radiation, and a chest X-ray didn't show anything unusual.

Meanwhile the tightness and coughing were getting worse and I went to see my cardiologist, to see if there were any heart issues that could be causing it. I had a cardiac ultrasound that was normal, and the bloodwork didn't show anything substantial. I would wake up in the morning with my chest feeling pretty tight, and I started having to have 10-15 minute hacking fits every day (dry cough) just to feel like I could breathe somewhat normally. I went back to my cardiologist, who said it'd be good to treat this as if it were an infection but also that I should get a chest CT to make sure it wasn't something more serious (he seemed to think it could be a blood clot in my lungs). In any case, he gave me a steroid inhaler and some antibiotics.

I had the CT scan last Tuesday and that's when they saw abnormal gunk in my left lung, though no blood clots. I say gunk because it's hard to know what it is. There's a diffuse something there that has what they call a "ground-glass" appearance. Apparently it's not a radiation side effect like radiation pneumonitis (something that can happen after lung radiation), and it doesn't look like normal tumor either. It has the appearance of an infection of some sort, but my oncologist won't say anything definitively about it until we take a chunk out and find out what it is. Hence, more surgery. A needle biopsy might be possible, but there's no guarantee they can get enough tissue to get a good diagnosis.

So, I'm getting another VATS (Video-Assisted Thoracic Surgery). It'll be pretty much the same procedure as the previous lung surgery I had in February, where they inserted tools through a couple of small incisions in my side and cut out the tumor spot that was there (I think they'll even use the same incision points). This time, the surgeon will take out a couple pieces of the "ground-glass" stuff, as well as the two nodules that were there before (the ones we zapped with radiation), and a couple of spots that might be new nodules. Oh, that was the other bit of fun news the CT showed - the possibility of new nodules. Guh. Hopefully they're just part of "the process", which is what my oncologist calls this ground-glass stuff, and hopefully "the process" is not something too serious.


Chemo-coaster

Meanwhile, I'm supposed to start this new regimen of chemo any day now. Originally it was three drugs - Irinotecan, Temodar, and Vincristine - but my doctor decided to drop the Vincristine, because I've been having some neurological issues (i.e. dizziness) with the last regimen (Navelbine and Cytoxan). She didn't want to aggravate them with more neuro-toxic Vincristine. Actually it's the Irinotecan that's supposed to be the nasty stuff, though it's shown to be a good drug against rhabdo. When I finally get to doing this, I'll be taking it once a day for two weeks (1-2 hour infusion), with one week off to end the cycle. If I tolerate it well, we'll do at least two cycles and maybe alternate with the Navelbine/Cytoxan I was on before. The main side effect of Irinotecan is diarrhea, so I'll be taking a bunch of stuff to try and fight that off, including a daily antibiotic and a 3-times-a-day dose of activated charcoal (Janet was quick to point out, "I put that in my fish tank."). The charcoal should help keep my GI tract nice and filtered so the Irinotecan doesn't upset things too much. That's the theory, anyway.

I've been off of any kind of chemo for a couple weeks now, and I'm starting to feel a little antsy about it. Hopefully we'll clear up this lung thing and get back on track with chemo soon. It looks like the way things are going, I'll still be getting treatment at least through December. On top of all this, my medical oncologist is going on sabbatical at the end of the month. Supposedly the doctor covering her patients is really good, but it's pretty crappy timing.

Anyhow, wish me luck on the surgery!