Prevent Defense

Today I had some interesting new therapy - respiratory therapy. See, when one undergoes chemotherapy, often one's immune system gets compromised over time. When this happens, one becomes susceptible to nastiness such as Pneumocystis pneumonia - aka PCP. (PCP happens to be one of the leading causes of death among AIDS patients.) The risk is low, but if it hits, it is often fatal. Some doctors recommend playing it safe, some doctors think it's not worth it. (More on this in a bit.)

The plot thickens ever so slightly because the normal treatment to prevent PCP is a sulfa-based drug - I am allergic to sulfa. So instead of taking a pill, I get to have my medication (Pentamidine) nebulized into my lungs. I "suffer" from some mild asthma symptoms on occasion. I use an inhaler maybe every other week, i.e. I barely suffer at all. But it turns out that mild asthma can turn relatively nasty when someone is trying to force what feels like cough syrup into your lungs. (Get it? "Plot thickens"? "Cough syrup?") It was a rather unpleasant experience.

Now for the soap opera part. Two weeks ago - back when we were first planning the trip to Mayo - Dale, my radiation oncologist's PA, expressed surprise that I was not scheduled for any medication to prevent PCP. He specifically asked me to ask the folks at Mayo what their opinion was on this. So Monday when we visited the high priests of cancer at Mayo, I made it a point to ask if my new favorite doctor recommended taking steps to prevent PCP. Without hesitation he affirmed that he does recommend it. He feels strongly that, even though the risk is low, the harm done if it strikes is too great to not attempt to prevent it.

Yesterday I had my regularly-scheduled check-in with my radiation oncologist. Of course he wanted to know how the visit with my new favorite doctor went. (He didn't refer to him as my "new favorite doctor", nor did I.) I told him my new favorite doctor (henceforth to be known as "MNFD") thought we were doing a heckuva job down here in La Crosse. I told him MNFD is thrilled with the surgery results and thinks our aggressive approach is spot on. I also mentioned MNFD's strong belief that we should be trying to prevent PCP.

At this mention, my radiation oncologist leaped into action - verifying various data regarding drugs, etc. He told me he would set up the respiration therapy for the next day (today) and we were all set. Dr. Radiation Oncologist certainly appears to be on board with the preventative therapy.

This morning I show up for my daily dose of WMD, to be followed forthwith by the respiratory prevention therapy stuff. Who should sidle up next to me as I'm waiting for the WMD techs to call me back? Dr. Medical Oncologist Who Doesn't Handle Many Brain Tumor Cases And Was The Reason For The Trip To Mayo. He wants to have a word with me before we do the respiratory therapy.

"It's not standard Mayo treatment." "It's pretty rare that PCP happens." I explained to him that we were quite convinced by MNFD that this therapy was warranted and worthwhile. I suggested maybe he could call MNFD. He said he would his check MNFD's notes. After checking MNFD's notes, Dr. M.O. said, "He recommends it but I don't know where he's coming from."

Long story short, my medical oncologist was very resistant to me undergoing this preventative therapy. He was trying to talk me out of ignoring the advice of one of the high priests of Mayo (aka MNFD). I am also venturing a guess that he disagrees with other doctors on the staff at my La Crosse clinic. I can't prove it... yet... but I'm betting I'm right. In the end, I respectfully (I hope) informed him I would be doing the treatment.

This puts us in an uncomfortable position. I said early on that I'll go to Mayo, dammit, if I have to and I will. But to move my base of care to Rochester would be fairly traumatic. And overall I'm quite happy with the care I'm getting in La Crosse. But... if I constantly have to fight with the doctor who is supposedly in charge of my care here in La Crosse, it may come to drastic measures. We will be carefully monitoring this situation.

Tomorrow we will be celebrating a very special birthday that is actually happening today. Instead, tonight we will celebrate 11 days of radiation therapy - done. This means I am 1/3 of the way through the valley of the shadow of WMD. Touch the monkey.