City of Hope, First Visit

A couple of weeks later, I went to Dr. SF at the City of Hope. City of Hope is one of the top cancer centers in the US -- it has a huge campus east of downtown Los Angeles (about 20 miles east) and is basically the size of a large hospital but it is dedicated entirely to cancer. Dr. SF is the head of the hematology and stem cell transplant programs and is a prominent researcher in blood malignancies.

Jill and I drove out there, which took forever so we had no lunch. When we arrived, we valet parked and checked in. My office had already worked with Dr. SH's office to ensure my records had been sent over to City of Hope, and to fill out registration information. Of course the latter hadn't arrived when I checked in, so that was a little bit of a snafu but not the end of the world.

We were assigned a lady to shuttle us through our appointments, which included a new patient orientation, more bloodwork (I picked the wrong disease, for someone who dreads needles), a meeting with a social worker (will she, I wonder, hand out a pamphlet entitled "So, you've decided to get incurable cancer...") and the good doctor himself.

I was brought to new patient orientation where a lovely young lady of dutch descent missed the fact that my name was misspelled. Jill pointed out that I was in their system incorrectly, with an extra "h" in my first name and an "e" at the end of my last name. Not unusual for this to happen, so the woman began fixing it so she could print out the proper name tag and charts.

It was at this point that I realized I didn't have my iPhone. The iPhone, for those who don't know, is a really nifty mobile phone made by Apple that has a lot of interesting applications. One such application, which I figured would come in handy, is the ability to record a conversation. I taped the diagnosis with Dr. Hamburg with this device, and wanted to do the same for my conversation with Dr. Forman. But I realized I'd left it in the car. Jill went off to retrieve that while I waited for my paperwork to be fixed.

City of Hope is filled with very caring people and generally speaking everybody is very warm. But it's a frightening place. It really brought home that I am going to be very sick soon. Even in going to Dr. SH's office, I saw a lot of people getting a lot of tests done for blood ailments but it wasn't the same as being in a room full of people being treated with chemo, missing all their hair, undergoing these frightening treatments in the hopes of staying alive...and now it was all around me.

It was taking a while to finish my paperwork, but Jill still wasn't back from getting the cell phone. Just then, my work cell phone (not the iPhone but a Blackberry that I carry with me) rang. It was Jill and she was beside herself. The valets couldn't find the car, then couldn't figure out how to open it, then left her unattended for 10 minutes, then finally found her and had to take her in a shuttle to a remote lot. She was getting very frustrated. Meanwhile, my little old lady guide was starting to get cranky. I had to hurry up to have bloodwork done so I could make the appointment with the social worker. I asked her to please be patient, but we had a schedule to keep. I was concerned because this place is huge and Jill knew where I'd been brought but didn't know where the lab was. But I had no choice, so I called Jill and told her I would meet her in the lab.

The lab was out through the lobby so I could see the valet stand. I asked the little old lady to please wait and I went outside to check on Jill, but she was nowhere to be found. I went back in, and was brought to the lab. I sat down, and rolled up my sleeve as another volunteer came in with the 8 or 9 test tubes that they had to fill (they have to take a lot of blood...again not my favorite thing to do in the world).

The volunteer checked my bracelet, which had my name and ID on it, and we both noticed that the name on my charts and on the bloodwork was misspelled (Nicholas Vandyke). I told her that they had changed it, and she told me there was no way their system would accommodate a space in my last name. Around this time, Jill showed up, hungry for bear but finally with the cell phone. She and I both tried to explain to the volunteer that they had to have the space in there, or at least be consistent, or my records couldn't be kept proper track of.

After a little arguing, and a vigorous jab with the needle, and about five minute of bleeding into tubes, we left. Then we were told that the social worker -- the whole reason we were being rushed through this process -- had gone for the day. By this point, I was pretty damn angry. I wasn't exactly happy to be there in the first place, and then the administrative screwups were starting to get to me. We were brought to a waiting room where we were told it would be about an hour before we could see the doctor (since they'd planned on me being with a social worker for 45 minutes).

Soon enough, a nurse brought me into the doctor's office and they did more tests, including blood pressure. I am mildly hypertensive...around 135 or 140 over around 85 or so. Dr. PZ, the non-alarmist who has been my physician for 20 years, has asked me to monitor it and I have, but he doesn't believe it's high enough to need medication. At any rate, in my frame of mind I knew it would be high. I told the woman, whose English wasn't very good, that I was about to break her machine. Sure enough, it registered 189 over 99. She asked "are you on medication for high blood pressure" and I said "no, it's just the administrative screwups have agitated me." She didn't seem to grasp this. She tested my other arm, and it was the same. She asked, AGAIN, if I was on medication for high blood pressure. At this point, I was going to need it!! I told her again the situation, and we were brought back out to wait some more.

In a few minutes, we were brought back in to see the doctor by a different nurse. She put us in one of the exam rooms. Sure enough, she asked if I was on meds for high blood pressure. I almost lost it. At this point, I was not feeling very good about the City of Hope. More like City of Dopes, I thought.

In a few minutes, though, Dr. SF came in. I was holding an open bottle of water and a lot of papers in my left hand and when I stood up to shake his hand, I inadvertently turned my wrist over and dumped half the bottle on the floor. We laughed about it and spent the first two minutes mopping things up.

We had a long conversation with Dr. SF. He works very closely with Dr. SH, and SH would be the one that would do my induction therapy and I'd go to CoH for the transplant with SF. I liked SF from the start. He seemed very smart, had a realistic but positive outlook. He concurred with SH about the diagnosis, although even though I'm stage 1 he thought that my back pain might be an indicator that we might want to start treatment sooner rather than later.

As for treatment, he is basically a single autologous transplant guy. He believed, in contrast to SH, that Revlimid WAS a better agent than Thalidomide, and he suggested using Velcade as well. I told him we'd need to come to a consensus. One of my concerns was whether Velcade should be reserved for a relapse (same deal with Revlimid, versus Thalidomide).

I asked about mini-allogeneic transplants, and Dr. SF said there was a role for those and we can discuss them at the appropriate time. I asked about the risk of allogeneic transplants and whether they were getting better at managing them over time, and he said that was definitely the case. He said that they were also looking at using total marrow irradiation as another type of treatment and that this could also have a role.

I asked him about Dr. BB's protocol of tandem transplants, and he told me that he had done them, and that Dr. BB had some impressive data. He offered to read up on the protocol and discuss it at our next meeting. There was a lot more that we discussed, and I will eventually post the audio from that conversation in the event others want to hear it. We were interrupted a couple of times, it is worth noting, when he pager went off. Sometimes he was able to ignore the message, but one time he had to take it.

Jill and I both felt very good about Dr. SF. In fact it completely turned around our initially negative opinion of CoH. We agreed that we would come back in a month or so, because there was a big hematological conference coming up where a lot of information would be shared and Dr. SF would have the latest and greatest information. He would also discuss my case amongst his peers at CoH to see if there was a consensus on what to do. We made an appointment for December 30th to review all of this.

Dr. SF advised against seeking too many opinions -- and yet I knew already that I would be discussing it with several others. He told me that doctors simply don't spend as much time reviewing something if they know they are the 11th or 12th doctor. I decided I would be selective in telling doctors how many other doctors I have seen. I'll talk a bit about "doctor proliferation" in the next post.

Lastly, I asked Dr. SF if he's heard of PinnacleCare. He almost winced. :) He said that they were most useful for people that didn't have the depth of knowledge or interest in research as I did, but that he would work with them if asked. Since I view their role in part as staying on top of doctors to ensure that I would get the best care, and since the one page that he HAD to interrupt our meeting for was from PinnacleCare, of all people, I decided I was going to hire them!