New Oncologist!

I finally have a new oncologist. And if you saw that exclamation point in the title and guessed that I was happy about it, you would be correct.

Let me remind you about the strange and sad saga of trying to find an oncologist.

When I was first diagnosed, I was assigned to Dr. R. I was very fond of him. He was young, which I liked -- I think younger doctors are more sympathetic because they haven't had time to push their emotions away yet. He and I got along great. He was smart and up-to-date, and we talked about family and baseball and living in Boston. He guided me through watching and waiting, and again through treatment with Rituxan.

And then he left me. After about 6 years as my oncologist, he moved to a warmer climate to teach in a medical school. (I'm sure he's doing great in that job.)

I took the opportunity to switch offices. The research hospital near me has a bunch of satellite offices. I had been going to one about 30  minutes away to see Dr. R. There's another 10 minutes away from home, and I decided to go to that one instead.

My new oncologist was Dr. K. He is without question the worst doctor I've ever had. He didn't listen. He told me at the first appointment that he had Follicular Lymphoma patients who just wanted to come in every 6  months and then not think about it. I told him I was not that kind of patient, and that I spent a lot of time learning about my disease. He didn't listen. He gave me lectures about stuff I learned when I was 12 and when I tried to tell him I understood all of that (kindly, of course), he just talked over me.

The worst thing, though, was when he told me I needed a PET scan. When I asked why, he told me that blood work and the exam were fine, and everything looked normal. I asked why I needed a PET, then, since there was apparently no reason for one, and I was young and didn't need the radiation. He couldn't give me an answer, but he insisted on a PET.

I didn't schedule the PET, and I started looking for a new oncologist. Before I found one, I got a letter saying Dr K was retiring. I was happy about that. He seemed to me like he had given up.

I was assigned to Dr. V. And he was awesome. He did one day a week at the satellite office, and the rest of his time at the main hospital, teaching in the medical school and supervising clinical trials. At my first appointment, I asked him what excited him about lymphoma research. He went on for 20 minutes, talking about new treatments and trials he was involved in. I was smitten.

And then, the next time I saw him, he told me that he was leaving for his dream job at a a major cancer center and was leaving in a few months.

I was sad again.

I really loved seeing a lymphoma specialist, and I called the main hospital to try to get in with one. For some reason, I could not get the office to understand what I wanted. I got so frustrated that when they transferred my call back to the satellite office, I just accepted the appointment they gave me. It was a bad day.

The new oncologist turned out to be OK. He was a generalist, not a specialist. But a friend with multiple myeloma (another incurable blood cancer) was seeing this same oncologist, Dr. F, and liked him. So I was willing to give him a chance.

Five minutes into my first appointment with Dr. F, he told me he was retiring.

I would need a new oncologist. If you weren't keeping count, that would mean 5 oncologists in 4 years.

******************

I decided that this time, I wasn't going to mess around. Last week, I called the main hospital's hematology department and explained my situation. They told me they would need a referral from the satellite office. Don't know why -- it's the same hospital. But that's what they needed. they said it could take a few days.

I got a phone message Friday from Doris, and couldn't call back until Tuesday. Then I spent about 30 minutes explaining what I needed -- my onc had retired and wanted to see a specialist. They looked up my records and told me that, since I had already seen one of the doctors there, I would need to keep seeing him.

Who did they want me to see?

Why, Dr. K.

Yes, the one who wanted me to get a PET scan that I didn't need. The one who was supposed to have been retired.

I politely told them that I really would rather not see Dr. K.

After a little more wrangling (they hung up on me once and then transferred me to the satellite office again), I mentioned Doris' name. I think they were happy to have an excuse to get rid of me, because they told me Doris would call me back.

I waited two days, and no call.

So this morning, I called and asked for Doris.

They put me on hold for a few minutes until Doris was free. I could feel my blood pressure rising as I got ready for a fight. But when Doris came on, she was great. She said she had received the referral from the satellite office, and she would find an open appointment with a hematologist. She put me on hold for a minute, and then came back with a date, and an oncologist, Dr. H. I looked at my calendar.

"Yes, that date sound great," I said. "What time is the appointment?.....Hello?......Hello?" [click.]

They had cut me off again.

I called back right away, and they put me on hold again until Doris was free. I took the time to look up Dr. H on their website.

What I read got me very excited. He's young. He's a hematology specialist. He teaches in the medical school. He does research on quality of life issues.

And here's the best part, given that they wanted me to see Dr. K again. Dr. H does research that shows that PET scans are often ordered when they aren't necessary.

Doris came back and we finalized the appointment. I'll see him in about three weeks.

Now, I know there's a chance he won't be perfect. And I know that, given my track record, there's a chance that I'll see him once and then he'll leave for a new job.

But I feel good about things. He seems like he has the qualities and experience that are important to me. I'll find out for sure in a few weeks.

More importantly, I feel good for being persistent and making sure I got what I wanted. Some days, I get beaten down easily and accept things that I shouldn't.

This was the best cancer-related news I have gotten in months. It was a lift I really needed.

I'll let you know how things go.