Hazy lungs and other weirdnesses...

Yesterday I trekked into the city to see the Sloan Kettering pulmonologist. They fit me in with an urgent appointment, which is a good thing and not-so-good, of course. The issue is this lung thing I have going on. My oncologist had prescribed prednisone and two antibiotics, which I'd been on for seven days. Three days ago, still on both, I suddenly got incredibly nauseous and started throwing up like crazy. I don't think I ever managed to vomit that much and, coupled with the diarrhea that had started with the antibiotics, all the progress I was making seemed to grind to a halt. I felt like hell and stopped the antibiotics while waiting to come in. The pulmonary area of Sloan Kettering is a scary place. People there are coping with very bad stuff. One imagines its either lung cancer or some other cancer coupled with something great like emphysema or copd. I was the youngest patient there by about 20 years from the looks of it. A fair number of breathing machines. Not a lot of smiles. I have to say it was pretty efficient. Lots of forms to fill out that were very brief if you don't smoke. Basically, if you don't smoke, you can skip most of the questions. So, if you don't believe smoking is really, really, really addictive, try to imagine sitting there in that terrifying place, with all that money being thrown at your condition and all sorts of nasty tests and treatments facing you, not to mention your very likely death, and still having to write on the forms that you smoke. What goes on in your mind? Denial? Despair? Self-loathing? Anger? It's hard enough to go through this without the pretty certain knowledge that you brought it on yourself. As a friendly hint, never let anyone talk you into a nasal swab just for the fun of it. To rule out infections of various sorts, they stick very long q-tip thingies WAAAY up each nostril for what seems like much longer than a few seconds. I love the way they say it will be "uncomfortable." I don't know about you but, to me, uncomfortable is like an itchy shirt, or a sofa with broken springs. Not that I recommend them saying "now this is going to hurt like hell..." but it's funny how we just accept code words for things. A little conspiracy of denial. The nurse was quite sympathetic and apologized, which does help, somehow. If you know you have to get one of these in advance, take Tylenol before you go! The doctor described what they are seeing in my lungs as a " diffuse haziness." If it were pneumonia, they'd expect to see it in one place, but they can't rule out some rare types. One of the first chemo drugs I was on, adriomycin, can also cause congestive heart failure, which this could also be (oh, great!) but seems that I don't have many of the other symptoms. So the working hypothesis remains that the Taxol has caused inflammation in my lungs. Treatment is continued prednisone. I didn't realize that this depresses immune function, which is why they also want me on a very expensive (as in $1,000 a month) antibiotic called Atovaquone, used for HIV and organ donor patients to avoid a lovely fungal pneumonia. Side effects of the drug, other than bankruptcy, are nausea/ vomiting, diarrhea, etc. Sounds like a great way to get strong and fight cancer, huh? The pulmonary function test was pretty interesting, though. They have you sit in a glass phone booth-like enclosure, put your lips around a plastic thingie and bite down on it. Then they clip your nose shut and tell you what's going to happen. There were three tests. The first was to take a deep breath and blow out as hard, fast and long as you can. The technician is your cheerleader, urging you on "Great, great, keep going, more, more." phew! Exhausting and made me light-headed. It's a little hard not to feel a bit panicky with this thing in your mouth and your nose shut. I am grateful, as always, for my practice at relaxation techniques. The second test is to take short little breaths, which they then block off, so you are sucking away with no air coming in. Suffice it to say that the body doesn't care for this and you are very glad its only a few seconds. I can't imagine what it would be like to have truly damaged lungs, or an anxiety disorder and go through this, even though it isn't painful. I did very well on the first two tests, which check your airways. I scored even higher than expected in one. The third involves breathing in from one bag, holding your breath and breathing out into another. It checks how well the membranes that transports gasses to and from the lungs to the bloodstream are working. Apparently, disease or some meds can thicken the membranes. Yuck! They look at oxygen, carbon monoxide and helium. 80% or above is normal range, I was 78. So it seems my lung are getting enough air but not getting it into my blood well enough. The technician seemed to think the chemo also the most likely cause. So we are now looking at a delay of at least another month before surgery. Aside from putting off getting my life back, it makes me worry about the cancer. The purpose of the surgery is to remove tissue that may still be cancerous (in one of the sweet ironies of life, we won't know this until it is removed and checked.) If it is, then getting it the hell out seems like a good thing to do, and not something to delay. If not, then having more time to recover before surgery is a good thing. Of course, having general anesthesia while your lungs are broken is just plain dumb, which is what they are worried about. What a mess! The good news is that I am feeling better today. My lungs still feel tight and heavy and I cough when I talk too much, but I am more energetic. I plan to take as much vitamin c and niacin as I can tolerate and get under the uv light for vitamin d and drink lots of fluid to recover from and prepare for the antibiotic effects. In many ways, the hardest part of my current treatment plan is the isolation. Interestingly, the doctors do not recommend staying away from people and crowded places. They agree its good idea, but they don't tell you to do it. In fact, they think nothing of sending you into hospitals and their offices, which are crawling with sick people. It's as if they don't even consider it possible to avoid exposure. It's not in their model, and not in theiinterstate to think they could be part of the problem. So this I've had to impose on myself, which doesn't make it easier. At a time when I am most lonely and in need of people, I am cut off. Thank God for the Internet, email, phone and texting. But I miss being out in the world, shopping, literally seeing people, getting hugs (anyone who does visit has a strictly hands-off policy.) Butters is some help...he is the world's cuddliest dog and I can feel the oxytocin flood my system when I pet him. Of course, he also has dog breath, licks my face and tries to steal whatever I am eating. But you can't have everything! And there is Steve, of course, my valiant and hard-working guy, tortured by his worry that the course of treatment I am pursuing may be harming more than its helping, being supportive while still offering alternatives. It doesn't make it easier in the short run, but may well save me. Hard to know what to do in the face of something this awful and that has not, frankly, been one of the great successes of modern medicine. So we muddle along, doing the best we can with the information we can get, hoping for the best, enjoying what we can. Sounds a lot like life!