All about Mayo

Our trip to Mayo was rife with blessings and disappointments.

Good things about the Mayo trip:

1. The Mayo Clinic is amazing. There's been some serious thought put into the buildings and the treatment of the patients. It's literally a well-oiled machine.

2. They handed us an itinerary after we checked in, and they followed it to the letter. They give patients a lot of time to get from one appointment to another. I figured that most of the patients are pretty old, and there's some considerable walking between buildings. We were early for some of our appointments and they took us immediately and were able to, in some cases, finish Jim's tests even before we were scheduled to be there.

3. We finished all our tests on the first day by 2:00. We went back to our room to rest up. That's where things sort of took a turn.

At 4:00, one of the Oncology Nurses called and said that Jim's CT Scan showed a sizable blood clot in his leg, and that we needed to report to the ER immediately. Uh...okay. This is a different blood clot than the one he had about a month ago.

Before they called we decided to rest in the room rather than go on a shopping excursion, which is what we originally wanted to do. So we just packed everything up and got ready to go over to the hospital. We sat in the ER from around 4:30 through around 10:00, where they finally decided to admit Jim because they didn't want him moving around with the clot in his leg.

BUT

When they admitted him, they wanted him admitted on the Oncology floor of a different hospital. So they gave us a ride over to the other hospital in an ambulance. I've never been in an ambulance before. That was pretty neat, despite the smell of exhaust.

By the time we got over the other hospital and saw that doctor, it was 2:00 am. At this point, we were pretty tired. And the doctor we saw was a Resident - a general doctor that looked like she was around 17 year old. Not a Fellow (someone who is interested in specializing in the field), and not what Mayo calls a "Consultant", discreet for "Head Honcho, Knows A Lot About Cancer".

We got around 4 hours of sleep before the day Friday started - tons of deliberations over what to do with Jim. Originally they wanted to put in a filter to block the clot from moving into his lungs and becoming a pulmonary embolism. They kept asking him if they could access his port and hook up an IV. He didn't want them to because the thought of using the port makes him sick at this point. The port is that button is his chest that they used to hook is 5-FU pump into, and the mere thought of that makes him sick. So about the 15th time they asked about the port he finally threw up, literally, and they finally got the hint and stopped asking. They had us prepared to stay another night and have the filter put in. It's typically an outpatient procedure, but we weren't sure if they would make us stay to monitor him.

At around noon, one of the Consultants and the Fellow came in, and determined that Jim's coumadin (blood thinner) isn't working for him because he clotted right through it. They decided that they didn't want to put the filter in because a filter is foreign, and more clots could form around the filter, and that would defeat the whole purpose. So they ended up prescribing him some shots to replace his coumadin that will supposedly work better. They are subcutaneous shots that Jim will have to administer himself. Argh.

All this happened and finished by around 1:30. Of course, we didn't actually leave the hospital until after 6:00pm. Administration. We were tortured by seeing the Resident once again, during which she asked us all sorts of questions using the wrong words for medications and symptoms. They finally determined that we could see another consultant before leaving, since we missed our outpatient visit on Friday morning.

The consultant basically explained to us that Jim has cancer (duh), that he hasn't responded to the traditional treatments (double duh) and then he proceeded to explain to us about how clinical trials work. I started to wonder if we were on candid camera. Um, I hope you didn't just come here to explain things we already know. But, in fact, that is why he came over. Frustrating, to say the least. He explained trials to us, but didn't actually investigate whether or not Jim would qualify for any of the trials. Apparently a lot of people with cancer are complete ignoramuses, because I found the fact that he explained some very basic principles to us really insulting. Even when I pushed him and asked him about specific treatments, he still couldn't muster a solid answer. Indecision and apathy are my two biggest pet peeves. It's not like we're going to take him out and shoot him if the treatment he recommends doesn't work.

Basically we drove 4 hours for them to find a blood clot in Jim's leg. It was a blessing. After all, they took Jim off his coumadin. And they seemed very excited about taking him off it and moving him to another anticoagulant. They said that sometimes coumadin interferes with chemo. Huh. Well I wish it was as easy as that.

Then, one more humorous story. The cleaning lady came in to spruce up Jim's hospital room. We chatted politely, and then she took the liberty of closing the door, sitting down on the end of Jim's bed, and explaining her homemade cancer cure, given to her by the elders in Bosnia. If I had a nickel for every person that had some kind of cancer remedy, I'd make a fortune. And I certainly wouldn't have to worry about paying for medical bills.

We're off to NYC on Monday. Let's hope Nancy Kemeny is a bit more insightful. I'm going to give her a leg up by typing a list of exactly what we want and handing it to her office a couple of days early. That way she can have someone else look up clinical trials for Jim. One more thing: we can't sneak our way into the trial that we were interested in, but they did give us a great lead on another trial that we could try for. We'll start there.

So, the cure for cancer wasn't waiting at the door for us at Mayo. That doesn't mean it's not waiting for us somewhere else, though.