Chapter Five; Hawaii Was Great, But The Long Nadir....

Dave’s Great Adventure
Chapter 5, Verse 1
November 13, 2002
The Story...Continues??

Well, we’ve gotten back from our trip, and it’s time for another chapter to start, since I’ve been starting a new chapter with each round of chemotherapy. But, I really haven’t finished telling you about the events at the end of Chapter 4. We were getting ready to leave town, I was going to have to give myself those shots, and my white count was very, very low. Well, here’s what happened.

The night of the last “verse” I gave myself the first shot of Neupogen, as I had been taught to do. I didn’t do too badly, though docs are not taught how to give shots in medical school. It was kinda tough to actually stick the needle into my belly, but it didn’t hurt much and I got the job done. We got up at about 3:30 the next morning to catch a flight to LA that left at 6:55. Those of you who know Kathy well know that she always wants to get to the airport early so we won’t miss our flight. Well, we were sitting at the gate for our flight, all by ourselves, by about 5:30. We had plenty of time to eat a McDonald’s breakfast and read the paper! The plane left on time and we had a smooth flight to Los Angeles. I was paranoid about being around too many folks with my white blood cell count being so low, but on the flight to LA the plane was almost empty. We changed planes in LA and headed out to Maui, but this plane was full. Fortunately no one around us was coughing or sneezing too much.

We got to Maui on time and collected our luggage, finding that one of our suitcases had lost a wheel on the flight, so we couldn’t roll it along, but instead I had to carry the thing! But, we got our rental car and found our way to the hotel at which the conference was going to be held, the Maui Prince. It was interesting that, when I asked the clerk at the rental agency how far the hotel was, she gave us the answer, not in miles, but in minutes. That was to be a pattern. Rarely did people express distances in actual distance, but rather in the time it took to get somewhere. That turns out to be, I think, because traffic is very slow and the roads are very circuitous. Though actual straight line distances are not great (the whole island of Maui can’t be more than about twenty miles by thirty miles or so) it can take over an hour to travel twenty or thirty miles.

We checked into the hotel and found that it was very nice indeed. It was right on a soft beach with a gentle surf and lots of palm trees, flowers and birds. We also found out later that there were a lot of large sea turtles in the surf just off the beach. We were able to watch a large turtle one day, just about thirty feet off the beach, with a shell probably about 24 inches across and a head as large as my fist.

The hotel was a beautiful place, and is apparently a popular place for weddings. We must have seen at least five weddings of various sizes, during our stay. Kathy got her fill of checking out wedding dresses! I don’t know why women are so curious about what other women are wearing for their weddings. Anyway, we saw very large weddings with large receptions and music, and very small, private weddings with no one present except the bride and groom and the minister. At one wedding we witnessed, the bride and groom were standing alone on the beach with the minister saying their vows. There was no wedding party at all. The groom was quite a bit shorter than the bride, and so was standing on a small mound of sand to make him appear about the same height as his bride, at least for the photographer!

The meeting, which was the main reason we were in Maui, turned out to be an excellent educational meeting with excellent topics and experts on a wide variety of subjects. I was, again, a bit nervous about being in a large group of people, and the meeting was actually larger than I had thought it would be (about 200 people) so I tended to go in and get a seat all the way to one side of the room, rather than being surrounded by people. There was a fair amount of coughing going on, and I tried to stay away from anyone that appeared to be sick.

I was also restricted in my activities, because of my therapy and low counts. The chemotherapy made me photosensitive, so I couldn’t get much sun. And with my white counts being so low, I couldn’t eat fresh fruits and vegetables nor could I engage in, well, I’m not sure I can say it in a family publication, so I’ll just whisper it (we couldn’t have S-E-X). You know, because of germs and stuff.

Our son-in-law suggested that going to Hawaii with those restrictions was like taking a blind man to a strip show!

But we had a good time, nevertheless. The meeting was set up to run just in the morning and the daily sessions were generally over by about 1:00. That gave us the afternoons to do things. So we set about supporting the economy of Maui. The island is just beautiful, and we spent one afternoon just driving around seeing things and places that my excellent nurse, Debbie (who had lived on Maui) recommended. Then one morning, a day the meetings were held in the afternoon, we went on a helicopter ride around the island. We’d never done that before, and though I rode on lots of helicopters in Vietnam, I generally don’t like small aircraft. They tend to crash too frequently. Plus they tend to be way too expensive. But I have a new outlook on life now, and a different perspective on things. When you’re likely to have only five years left to live, and only that length of time to try to use your retirement money, things look different. If you crash, well, it was probably meant to be, and what is money for, if not to be enjoyed. I’ve been trying to save all my life; now it’s time to try to enjoy some of it while I can.

And one day we went out on a submarine ride. A group of about 20 folks signed up for the sub ride, and we were taken down to about 150 feet to a few coral reefs to see the fish swimming around. We were able to look out the portholes and see the underwater wildlife and take pictures. There was nothing too spectacular, but it was fascinating just to be there.

We went shopping, ate out too often and just had a good time being together. It was rather like a honeymoon, but in reverse, if you will. Generally a honeymoon is when you start your married life. We were there in what, unfortunately, may be the end stage of our married life, but it was beautiful, none the less. We spent a lot of time holding hands and just looking at each other and the soft green scenery. It was good for us.

Next I want to take Kathy to Alaska! Maybe this summer.

Kathy was watching out for me the whole time, guarding me from the dangers all around. She watched what I ate, kept me away from folks who were coughing and did most of the things that required interacting with groups of people. One day I joked that I was going to eat a big bowl of fresh fruit at the meeting, and she got teary-eyed! So I couldn’t eat the fruit! Because of the dietary limits, I ate mostly cheeseburgers and fish and chips, and occasionally other fish meals. And I gained a little weight.

I attended every meeting during our time in Maui. It was good to hear experts telling us that estrogen really doesn’t become a toxic substance to women just because they turn fifty, as many of the lay media would have us believe. And we were taught more about osteoporosis, breast cancer, abnormal pap smears and more. It was the best educational meeting I’ve been to in a long time. And when it was over, we headed home.

The ride home was tough, worse, I think, than the ride to Germany. The plane left Maui at 10:00 at night. Care to guess when we were at the airport? That’s right, we were there at 6:00! There was only one other couple at our gate, and they were coughing, so Kathy took me to the far end of the terminal where there were no other people and we spent time there, reading and talking. The plane left on time, and got to LA about four hours later, at 4:15 AM, where we had to change planes and had about a two hour layover. Then we boarded the plane to Denver, getting here at about 9:30 or so. The reason the plane ride was so tough is the layover in LA. On the flight to Germany, though it is longer, you can sleep. We had no real good length of time on this trip in which to sleep.

Before we went home, I went by the clinic to get a blood count done because my doc needed to see what my blood counts were by the next day before deciding what we were going to do. Then we spent the rest of the day doing errands. And that’s the end of Chapter 4.

CHAPTER FIVE: Yesterday Kathy and I got ready for the next round of chemo. We packed up all the stuff we’ve found we need for those days. Since yesterday was to be a Rituxan day (a long day), Kathy had lunches made for us, I had my CD player and my reading material, and Kathy brought along the quilt we’re STILL working on for Brooke, our younger granddaughter. We got to my doc’s office on time and he got there just a bit late, after making his hospital rounds. Brian pulled up my blood count from the day before, which I hadn’t yet seen, and gave us the news. It was kinda like a good news/bad news, or maybe a good news/good news result. First, the Neupogen worked well. My neutrophils had gone up from close to zero (remember, they were at 200 with normal being 150 to 7500) to 3000; they were back in the normal range. However, my platelets had dropped to 110,000 from 200,000, and my total white count was still only 2,000. Other good news was that my lymphocytes (among which the leukemic cells hide out) had stayed down at 300. The bottom line was that after four weeks since my last infusions, I was still in a nadir! My stem cells, the cells in the bone marrow that create all the other cells, were pleading for mercy! They are pretty well depleted and not able to recover as they had during the first three cycles. As my doc said, “We’ve knocked off so many cells that now we’re just beating the crap out of the good cells!”

So, he is stopping the chemotherapy after just the four cycles I’ve had. I’m not sure what to think of this development. In theory, if we’ve gotten to the point that we’re killing off normal cells, then the leukemic cells, which should be more sensitive to the drugs, should be gone. In theory! On the other hand, if even two or three leukemic cells remain, they can come back. I’ve been happy that we’ve been on the offensive in the fight against this disease. Now we’re going to be passive again. If I can, I’m going to try to talk him into giving me a couple of more cycles later, but I guess we have to be careful...I do need to have some marrow cells left at the end of the treatment.

I asked what we’d do next. Well, we’re going to do another blood count in a couple of weeks, to see if my marrow is recovering, then one more two weeks later, with another bone marrow biopsy at that time. The bone marrow biopsy will tell us if we seem to have cleaned out the marrow. He’s going to have them run a flow cytometry (remember that test from the early DGA letters?) and see if they can detect any leukemic cells. And then? Brian said we’d watch and wait. In other words, we’ll just do blood counts and see what happens to my white cell counts. And if they go up, we’ll have to see what might be available because as of right now, there is no other real treatment.

And so, that’s the end of this verse. We’re going to follow my blood counts for a while and when they get back close to normal I can go back to work, probably some time in December or by early January, at the latest, though Brian said that this time of year is a bad time to go back, with all the coughs and colds and with the influenza season about to start. But, if we can screen out the sick patients, I should do pretty well.

That’s about all for now. I’ll be back if/when anything significant happens.

Later,

Dave