…I believe the tale of the past couple of week will satisfy you.
It’s been a crazy two weeks. I started chemo, had some kind of allergic reaction/side effects situation, stopped chemo, went to the ER, and fired my cancer doctor.
The first few days were pretty manageable. Then at exactly one week, I started having chest pain, shortness of breath, and fits of coughing. It was basically like asthma attacks I’ve had, but all the time. In addition to my regular inhaler, I was having to use my rescue inhaler several times per day. The pain and trouble breathing would subside slightly, then flare up again within 45 minutes of each chemo dose. After three days of this, I called my doctor. The nurse freaked out a little, talked to the doctor on duty, and told me to go to the ER.
Confession: I’m not the best patient in the world. After work I went to the ER, but the receptionist told me it would be a 3-hour wait. In my defense, I hadn’t had dinner, and the last time I was in the ER for similar symptoms I had to stay for six hours, which would have meant that I wouldn’t get any sleep before needing to hop another train back into the city for work. So I went home.
The next day a receptionist from my cancer center called me and asked how things went at the ER. I told her what happened and explained that I was still having the asthma-like symptoms. She put on some elevator music, then I had the same conversation with a nurse. After a while she put on some elevator music, then told me to come in for an immediate appointment.
Now, maybe my expectations are too high, but after all the arguments and calls and messages I had to go through to make the chemo appointment (and it was the same nurse!), I thought they would have put a note down somewhere that I can’t just come in at the drop of a hat. But apparently not. I reminded her that I work in the city, and she assured me that “Doctor will work with your schedule.” For the millionth time, I explained that I didn’t get back until 6:30 at the earliest. At this point she made a very scornful tutting noise and turned the elevator music back on. Then the doctor himself deigned to come to the phone, only to ask me to come in for an immediate appointment. I said that I couldn’t, to which he exclaimed, “You’re at work? NOW?!” (Um, excuse me, sir. It’s 11:00 a.m. on a Friday! And you’re at work, so I don’t see why the fact that I’m at work is so unbelievable and shocking) Then he told me to go to walk-in care the minute I got home. I asked if I could stop taking the chemo, and he said promptly, “Oh, this isn’t connected to the chemo. I really don’t think this has anything to do with chemo. It’s probably just your asthma flaring up.” Long pause. “Do you have asthma?”
I mean, let’s just ignore the fact that I’ve been going to see this doctor since I was a sophomore in college, and that he has my entire medical history one foot from his face on his computer. Let’s focus on the fact that he didn’t bother to check something like that before prescribing me an oral chemotherapy that has been linked to serious and sometimes permanent lung damage, which he didn’t even tell me, I had to find out for myself from the pharmacy literature at Walgreen’s. But sure, good question, doc. Yes, I do have asthma. I was diagnosed in fourth grade. And even though it’s been almost entirely under control since then (setting aside that little mountain-climbing issue and certain winter bronchitis complications) and nothing has changed in my life except for the tiny fact of the addition of four daily doses of chemo….yeah, there’s probably 0% of a chance that those two things are connected. It is probably just a random 4 day asthma attack.
So I stopped taking the chemo that morning, and I got steadily better all day. By the time I got to walk-in care after work, I was almost entirely pain-free, and taking nearly full breaths for the first time in days. So it was a little frustrating when the doctor at walk-in care said, “I don’t know why your doctor sent you here. You really need to have a chest x-ray, so you have to go to the ER.”
Side note: I did have the best nurse of my life at walk-in care. She clearly knew what she was doing, and she also actually listened to everything I said and sympathized with me.
Thus it was that I spent last Friday night in the ER, chatting with a really excellent group of medical personnel. The techs, the nurse, the scribe, the doctor, the receptionist–they were all fantastic and kind. I have found my ER of choice, people. As it happens, I was not having a heart attack, a clot, or a sudden case of pneumonia, so I got to go home after only 3 hours.
Over the weekend the chest pain stopped completely and I went back to only using my daily inhaler. On Monday I thought the doctor would call, what with having sent me to the ER on Friday, but to no avail. On Tuesday though, I answered the phone and the nurse said, “If you’re over your little chest congestion, the doctor wants you back on the chemo ASAP.” To which I replied, “I wasn’t having chest congestion, I was having side effects from the chemo.” “Oh,” said she, “In that case I’d better talk to the doctor again.” And she hung up the phone.
The next day she called again, but by this time my mind was made up. “If you’re too apprehensive to go back on the chemo,” she began, “There’s really only one other thing we can do: different chemo.” “Actually,” I said, “I’m done. I’m going to find a new doctor. So please make a note for him, or don’t, whatever, I don’t really care anymore. But I’m done.”
In the short time I was on it, the chemo did get my platelets down surprisingly far, to about 700,000. So I have some breathing room in which to find a new cancer doctor. Thank you for your prayers about the whole chemotherapy situation. If you are so inclined, I would greatly appreciate prayers or suggestions for my doctor search. I don’t have a lot of time to spend looking just now, and health insurance stresses me out. But I believe God will continue to provide for me, and I hope He will lead me to a doctor who is supportive and confident and who doesn’t suggest that I pattern my major life decisions on Angelina Jolie. I’ll let you know how it goes.