Saturday, July 18, 2009

My MD Anderson Appointment - Medical Update

Several folks have emailed and asked about my appointment, so, here is the update. We got back from New York a week ago today, slept too late on Sunday for the early church service we attend, but did go to the adult Sunday School class I normally teach. I already had someone else to teach as I didn’t know if we would be back on time. I’m glad I did. After we got out at noon, we came home, changed, repacked and headed for Houston for my appointment with my CLL specialist. My grandson, Jonathan, rode with us because Cindy was also heading for Houston for her job. She had a class to teach on Monday and another on Tuesday.

After stopping in Brennan, TX, home of Blue Bell ice cream (they eat all they can and sell the rest), for our traditional ice cream cone, we arrived in Houston. I checked into the International Rotary House that is connected with MD Anderson and we got a free upgrade to a very nice suite. They were running short of the King room I always get (the cheapest), and since we were only there for one night, we got the suite. Sweet. Instead of waiting to get my blood drawn at the hotel where I would have been number 20 something in line, I walked across the skywalk and had my blood drawn at the regular clinic lab that was open on the second floor. There were only two people ahead of me so I was in and out in no time. I had two reasons for this. First, the actual appointment time for the blood draw was Monday morning with a 1 p.m. doctor appointment. By getting it done Sunday, I didn’t have to get up at any particular time and then go and wait a longer time up in the leukemia lab. Second, I didn’t want to wait at the hotel because we were going to be meeting with my nephew, Doug Redfield, and his family at their apartment in Katy, a suburb of Houston. We were to go out to dinner together. He and his family had moved to Houston only the week before. He works in computer programming (I think) and had started a new job with lots of responsibility. He has been working in this field for years.

Before we left our hotel, I called Cindy and she was all checked in at her hotel and had set up her training room for the next morning. She arrived at Doug’s only a minute or two behind us. We visited for a short time and then headed for dinner. After finding out the wait for a table was very long at our first choice, Saltgrass Steakhouse, we drove further on to Ruby Tuesday’s where there was no wait. I think there were eleven of us so we had a large table set up. We had a great time visiting and probably stayed too long at the table. However, there were no patrons waiting and the tip should have made up for it.

Cindy had her traveling babysitter, Tiffany, with her along with Gavin. Since she only had a room with two beds, Jonathan was going to be sleeping on the floor. Since we had a full suite, we had him stay with us and he slept out in the living room on the couch.

The next morning we took our time getting up and around and then went over to the cafeteria in the main building and had breakfast. Since it was close to eleven when we were done, we sat down in the Aquarium area on the first floor and Cheryl read her book. Jonathan and I played a sick game called, “Who Has the Cancer?” As people walked by we tried to figure out if they were a staff member, a family member, a friend, or the patient. Staff was easy because they wore ID badges. The others were sometimes easy, but not always. It really is sobering when you realize that everyone in that huge complex is somehow related to cancer. I pray someday there will be no need for that facility to exist and their motto, “Making Cancer History,” will become a reality.

About noon we went up to the 8th floor where the leukemia clinic resides. I had my vitals taken, paid my co-pay, and waited. Miraculously I was called in at my appointment time. First met with the nurse, as usual, but our regular nurse was on vacation so we saw someone new. Following the normal pattern, we were expecting to next meet with one or two young doctors, who I think are students. But much to our surprise, Dr. Wierda came in and without anyone else observing. He asked how I had been doing and about any symptoms. I told him about the concern I had a couple of months ago with the facial glands really getting large, my local doctor suspecting an infection and putting me on Levaquin, and then the nodes receding again, He confirmed that when the nodes under the ear get large quickly, it usually indicates an infection. He did seem a little surprised both sides had swollen. I then mentioned how weird this disease was because I had stabilized the last couple of months after some rapid progression. He again said that my disease wasn’t following the normal course anyway. He pulled up my blood work history on the computer and immediately noted that my cancer load had doubled in six months, one of the indications for treatment. My neutrophils were also low at 1.0. However, my platelets were all the way up to 135, the highest they have been at their lab in four years. Also, my IgG level was still over 900 and it was exactly three weeks since infusion.

Discussing with me how my lymphocyte count had slowed and then dropped a little the last two blood tests at home, and the fact my platelets were looking really good, he decided no chemo for now. He also said there are so many new treatment options right around the corner that he wouldn't even discuss treatment protocols with me right now because there will be a lot more choices when my time comes. Hmm, for the first time he didn’t mention FCR!! First he said to extend my IVIg infusions to every three months since my counts were up so good, but when I told him the last time I was down in the low 500's at the two month point, he said to go with every two months. He wants the level to be above 700, so he said when it is between 500 and 700 to have the infusion. At almost $14,000 billed to my insurance company for each infusion, I will gladly stretch it out as long as I can. He didn't say anything about a transplant this time which is also very good. He said he could feel "good size" nodes in my neck. No surprise there as I can feel them and see them.

Bottom line, still on watch and wait! Return appointment in six months with the understanding if things started changing with my monthly lab work to contact him.

I have now officially reached the three year anniversary since stopping chemo. If you remember, when we stopped at the end of July 2006, the doctor said it was to give my body a three to six month rest because I had not reached remission and bone marrow biopsy showed I still had 50% cancerous cells in my marrow (but down from 90%). As I have said before, I may not have reached remission, but this intermission has been just about as good. Also, the Great Physician’s time schedule has been much different than what my doctor predicted.

Thank you for your prayers. With your continued prayers, how much longer do you think I will be able to go without more chemotherapy? I wouldn’t even venture to guess because I have been wrong so much. Thank God!

Tuesday, July 14, 2009

Fishing from My Backyard! Or, How I Spent My Summer Vacation

(No leukemia information in this post)

After a total of 4,350 miles up and back to our new (old) cabin in upstate New York with some extra running around visiting, and another 405 miles down and back to MD Anderson for my appointment with a side trip to Katy, TX, to visit a nephew and his family who just moved there a week ago, we are finally back home. Whew, it’s HOT here in Texas, 105 yesterday, 104 today and tomorrow about the same! It is predicted to be at or over 100 for at least the next ten days and we have had 28 days over 100 so far. It is the hottest summer on record thus far, following the hottest on record last year.

I have lots to write about, but I plan to break it down into a couple of somewhat smaller posts instead of one long novel.

We had a range of emotions on our trip and the first couple of days we even felt a little depressed with some buyer’s remorse over our cabin. However, for this post I will write about only positive things.

The weather was mostly fantastic, from our perspective. Here in Texas we have been experiencing a severe two year drought and hotter summers than normal. While we were at our cabin, the highest temperature was 75, some days never reached the 70’s and the nights were in the 40’s and 50’s. The morning we left, it was 45. Our cabin is on a small lake located up in the hills, so it is even cooler up there. We had a fire in the fireplace several mornings and the space heater going each morning. I would dress in warm sweats in the morning, change to short sleeves in the afternoons and back to sweats in the evening. We heard they only had three days in June that hit 80, and those were before we arrived. It rained every day but one, but also saw periods of sunshine most every day. The rain, sogginess and dampness were beginning to bother Cheryl some by the time we left, but it really didn’t bother me that much. I just wore water shoes out on our soggy lawn. We do plan to buy a humidifier for the cabin when we return for the entire summer next year. Most folks were complaining about how cool it was as they wanted summer temperatures in the 80’s, but for us it was a relief from the Texas summer heat.

We spent lots of time with family. We spent one night on the way and one on the way back with my brother Bob and his wife, Priscilla, in West Chester, Ohio. I told him it was the best bed and breakfast around. He fixed dinner and breakfast both times we stopped and we had a really nice visit with them and their daughters. Our first night in New York State we spent with my brother Jim and his wife, Barb. The next morning we visited with my mother in the nursing home before heading for our cabin. At the cabin, Cheryl’s sister, Diane was waiting with two of her grandchildren to help us unload the U-Haul we had towed up.Even though everything was left from the previous owners, we brought an extra sleeper couch and extra mirrored dresser we had here along with some personal items to make it more our place. We brought our grandson, Jimmy with us and that strong young man was a huge help to us the entire trip. He was extremely well behaved the entire time, even when we were running out and visiting more family and he probably would have rather stayed and fished. We got the U-Haul emptied quickly and Cheryl and Diane set about getting things straightened around and beds made.

Other family that visited our cabin at the lake were my Mom; Jim and Barb and one of their grandsons; my youngest brother, Bill and his adopted daughter, Ruthie; Cheryl’s brothers Randy; Larry; Bill and his wife Diane; Rick and his wife, Cheri and their granddaughter; Cheryl’s sisters Diane and two of her grandchildren; Janet; and Mary Jane and her husband, Dave. On the fourth of July we had a cookout with six of Cheryl’s family members and we played cards from 11:30 in the morning until 11 p.m. (I managed to sneak in a two hour nap on the couch right beside the noisy card table.) We watched the fireworks around the lake from our front picture window while we played cards. We also went and visited with lots of other family at a graduation party for a grand niece and a surprise birthday party for Cheryl’s brother, Bill.

When my brother Bill came up from NYC, he and his daughter spent the night with us and the next day he went to the nursing home where my mom is a resident and entertained the residents. He is a singer, dancer, and actor and has been in at least 11 Broadway shows, many more off-Broadway shows, national and international tours, and has even done his own award-winning cabaret act in NYC. His most recent show, Guys and Dolls, closed the week after he was on the Tony Awards show. Hmm, that made it sound like it was his fault the show closed. It wasn’t. He sang ten songs at the nursing home and even danced with one of the residents who pushed her walker aside and did a little jig with him. He obviously sings very, very well, but his interaction with the residents was very special as he bantered with them, answered their questions, hugged, posed for pictures and just brightened their day. Being close to family was a reason for looking to purchase a summer place and we obviously accomplished that goal.

Another goal we had was to purchase a place on a lake so I could fish. All we could afford was an older cabin on a small lake and I was a little concerned the fishing would not be that good. I was very wrong! There are lots of lily pads around the lake which make great fish habitat (but are a detriment when right in front of the cabin). It is a private lake with no public fishing and the lake association stocks it every few years with small and large mouth black bass.

Our first day was very busy setting up the cabin and cleaning (well, Cheryl did most of the cleaning). The second day was busy shopping for supplies we needed and we drove to my brother’s house with the U-Haul we still had and picked up an entertainment center and TV that had belonged to my folks. They came back with us to help us unload and set it up and then had supper with us. Jimmy had been out a couple of times fishing in a paddle boat that came with the cabin and he had caught some fish and even a turtle. But I still hadn’t been out on the lake and I was getting anxious to go. So on the second evening after my brother and his wife left, Jimmy and I finally went out in the small aluminum row boat that came with the cabin. There is a small sign attached to the back of the boat that says, “U.S. COAST GUARD MAXIMUM CAPACITIES 2 PERSONS OR 300 LBS.” Now Jimmy and I are both, umm, large and we are over that maximum. However, in smaller print it says, “445 lbs. persons, motor, gear 7 H.P. motor.” Since we didn’t have a motor – not allowed on that lake – and only two fishing poles and one tackle box, I calculated that we were pretty much OK. Besides, we were not on the coast where the Coast Guard patrols, I was in the Air Force so maybe it didn’t apply to me, and I am pretty sure my scales lie to me about my weight anyway. My first fish was a yellow perch that was about 8 or 9 inches long, not bad for a perch, which is a pan fish. In West Texas they call other fish perch, but here is what a yellow perch looks like: We decided to row to the other side and try our luck there.

When we got to the middle of the lake, I thought it was a good time to teach Jimmy how to row. He came over to the middle seat where I was and sat down to my left. I started to move to the rear seat where he had been. Of course the boat rocked some. Jimmy did the right thing and leaned to the left to balance the boat. However, he immediately thought, “Oh, oh. Grandpa might fall in I better help him.” He half stood up and leaned/moved over to help me. Over 400 pounds on one side of a boat, a very small boat, a very small boat that doesn’t hold that much, a very small boat that says not to exceed two people or 300 pounds, and physics takes over. The boat leaned to the right. Well perhaps leaned is too weak a term. Actually the seats became vertical to the lake and the sky. Well, the entire boat tipped to the side and went vertical. Now when the vertical pitch occurs, everything that used to be comfortably seated in the boat – oars, fishing poles, life jackets, new tackle box…and occupants – are no longer comfortably seated, but are pitched into cold water. Jimmy went in head first and I gracefully slid off the seat into the water. The boat went back upright but now it was half filled with water and with none of the other items. Jimmy started to panic, but he did grab one of the life jackets. I grabbed all of the other important items – oars, fishing poles that were somehow still floating and tackle box – and got them back in the boat. I also got Jimmy calmed down and told him we would be OK. Jimmy wanted to turn the boat over because he had seen that in a movie. I convinced him that was not a good idea. We held onto the side of the boat and decided we could swim it in. We paddled and kicked for about 15 minutes with some rest periods, but I couldn’t see we were making any real progress. It was getting towards dark and there was nobody else on the lake. The evening was too cool for folks to be sitting outside so no one saw us. We had tried to get back in the boat, but of course it tipped up again. Then I realized if I had Jimmy go to the other side and I held my side down, he might be able to get in. He went over and pulled himself right up and in. Now it was my turn. Since I have had several years of a lot of steroids, I don’t have a lot of muscle strength – too bad they don’t use the type that are supposed to build muscles. Between my weak muscles and my bad back, I couldn’t get myself up and in and Jimmy couldn’t come to help because the boat would tip up again. So, I taught him how to row while I hung on to the side. At first there was lots of splashing of the oars but he soon got the hang of it. Obviously while hanging on to the side of a boat and now hoping no one is watching, one doesn’t think too clearly. I thought Jimmy was pulling too much with his stronger right arm and about every fifth pull of the oars I had to tell him to pull only with his left arm to correct our direction. AFTER we got to shore it dawned on me it was because I was hanging on to the side and creating drag. If I had gone to the rear of the boat it would have been easier for him to row and keep on a straight course. We were almost to the shore to the point were I could stand when I moved to the back of the boat as he came closer to the dock. At that point Cheryl came out and said, “John Wagner, you get out of that water right now!!” She said she saw us from the window with Jimmy rowing and me in the water and immediately had figured out what happened and was trying to lighten the moment. Umm, I didn’t find it that funny at that moment and didn’t realize she was kidding.

Because Jimmy had taken us right into a floating bog that occurs when lilies die and decompose, my shoes and pants were a little, well, a lot dirty and smelly. Even the pockets had filled with muck. Cheryl wanted us to strip in the yard and get the clothes off before coming into the cabin she had been cleaning for two days. I didn’t think that was such a great idea since we hadn’t even met all of the neighbors yet and that was not the initial impression I wanted to make. Actually it wouldn’t even be the last impression I would want to make. We compromised and I stood on the little porch by the door and she wrapped a blanket around me as the clothes came off. I then headed for the shower to warm up.

Of course we have laughed a lot about this since then. Before going out on the boat, I had the foresight to take everything out of my pockets before we went out, except for the very special pocket watch my grandson Jonathan had given me. It stopped working after it filled with water and the circuitry short-circuited and fried. Upon our return yesterday, we were able to find a replacement. Jimmy now has a story to tell his grandchildren some day. For some reason whenever we went fishing after that, Jimmy took the paddle boat while I went in the row boat. We would stay fairly close to each other as we fished and talked. He felt much safer that way.
Over the next week and a half we caught lots of fish. When I was using night-crawlers (large worms) I caught a bullhead that was about 13 inches long and many of some of the largest bluegills and sunfish I have ever seen. That day I was brave and took the camera out with me on the boat and got a picture of one of the bluegills. You can see that is almost as long as the boat seat is wide.

Here are a couple of other pictures I took while out on the lake:Looking towards our cabin. Small red spot, second from right.

Our cabin taken from the same spot as the first picture, but using the zoom feature. You can also see the red storage shed to the right of the cabin.

Sunset on the Lake Gerry.

Our last day there, I caught the largest black bass I have ever caught and landed. As soon as it hit the lure and I hooked it, it did the bass-leap into the air to try and shake the hook. It was fun landing him. I lost one larger when my line broke at Lake LBJ in Texas, but that doesn’t count. Unfortunately I didn’t have my camera with me and since I do catch and release, I didn’t have a stringer or any way to keep it alive so I could get a picture. I estimate that it weighed close to eight pounds and was 23 to 25 inches long.

During our stay, we saw other folks catching large bass and very large pickerel. For the 4th of July, the Lake Association held a fishing contest. I didn’t hear the winners for the adult division, but the two largest winners for youth went to a little girl and a little boy, both about 7 years old. One caught a 23 inch black bass and the other caught a 21 inch pickerel. One young man caught a 13 inch crappie. I didn’t enter the contest because of all the company we were having. One night it was a little late to go out in the boat, so I sat in a lawn chair and fished from shore over towards where my neighbor had cleared out his lily pads and right on the edge of ours. I caught a few fish. I came in and said to Cheryl, “How great is this? Fishing from my own back yard!” Obviously my “good fishing goal” was filled at this lake. I can’t wait to get back there next year and do lots more fishing. I will be using an electric trolling motor which is allowed on the lake. I plan to take a tape measure and fish scale, too. Oh, and maybe take a waterproof camera or at least a waterproof bag for my camera.

Later I’ll talk about some of the frustrating things of our money-pit…uh, summer cabin.