Monday, August 28, 2006

Back to Watch & Wait!!!!!!!

Today was the day I saw my oncologist/hematologist. I had tried to get a copy of my bone marrow biopsy before the appointment and it wasn't available. So, I was quit anxious going in. He asked me if I was still working or if I was going back to work. Remember, he had wanted me to take off six months for chemo treatment. I told him he knew I was working and I was the one with chemo brain, what was his excuse? He said it was from working all day long with people who had chemo brain. Seems it must be catching. A funny start.

Then he sat down and said the bone marrow biopsy showed the marrow was still 50% involved with those little nasties. My heart sank as I knew if it was not below 30% it meant more chemo. However he really surprised me and said he didn't want to do more chemo now and after eight rounds, my body needed a rest. He asked me if I was OK with that. Well, as the kids say, "no, duh!" Of course I was OK with that. He said we will wait and test the blood in three months and take it from there. He did ask if I would follow his advice next time. He said that yes, the FCR was much harder, but he would expect much better results from it. Since my marrow didn't clear like I wanted and I still have the lymph nodes everywhere but my neck, I guess I will probably go along this time. He said we might get six months out of the treatment we just finished. So when I go back in November does not mean that is when we will do more chemo. It will all depend on the blood tests. I asked him about the Campath mop-up right now, suggested by the doctor at MD Anderson. He said he really didn't want to do that and I needed recovery time. Fine by me. He did say that if I was in my 70's, we would just keep repeating the chemo I just finished with. Knock it down for six months and then repeat. However, because I am still relatively young, we need to go stronger and get a longer response. Perhaps several years before having to repeat. Of course I have written about the downside of doing that, as has Dr. Hamblin on his blog. Even Dr. Hamblin is not totally opposed to FCR and he knows it does have its place.

So, I get a break for awhile. This will be the longest period between blood tests since my diagnosis. I am sure I will get anxious as the date approaches. I will get the next blood drawn on November 22 and see him again on November 27th. In the meantime, my inner chinese hamster is getting a break. However, I am putting her on a weight training program so when we do chemo again she is ready to really kick cancer's butt!!!!

My platelets made a big jump to 138! I am still somewhat anemic and, ironically, my iron levels are a little high. Everything else that was out of whack was only slightly above or below normal. What I really want now is to get my energy back. I am tired of feeling tired all the time.

Here is what it says in summary on the bone marrow biopsy report (it is five pages long):
Residual CLL/SLL involving 50% of marrow cellularity, nodular and interstitial pattern.
Normocellular (30-35%) trilineage bone marrow with mild mmegakaryocyte
Mildly increased iron stores

If anyone wants any of the technical details, just email me. I also posted many of the details on the CLL Forum.

So, to all you prayer warriors out there. Thank you so very much. This treatment intermission is truly and answer to prayer.

Friday, August 25, 2006

My Two Daughters (and a quick update)

I am a very lucky dad. I have two grown daughters who are terrific. Cindy, my youngest, worries about me perhaps too much, but it is only because she does love me. I know my oldest daughter, Cheri, worries too, but she is much less vocal about her concerns, though not silent by any means. That has always been a difference in their personalities. Last year Cindy took us on a trip to the Grand Canyon, via Las Vegas. I wrote about this earlier in the blog, but it was a fantastic trip. Something I had wanted to do and see for a long time. I don't gamble, but even walking all around Vegas was very interesting, seeing the theme of the various hotels. However, the highlight was obviously the canyon itself. No pictures can compare to seeing it in real life.

This is me with my grandson, Jonathan and my daughter, Cindy.

Another thing I have always wanted to do was go on a cruise. My wife, Cheryl, has never been that keen on the idea. She is afraid of the things that may be lurking under the water. Not sharks, but anything that might resemble a snake. It is a phobia she has. However, since my diagnosis, she has been more open to the idea. (See what love does?)

Well, beginning Labor Day, we are going on a cruise! A gift from Cheri and her husband, Marc. Cheri, Marc, and grandkids Jimmy and Holly are all going with us. Our ship will leave out of Galveston a week from this Monday, and return on Saturday. Cheri was even able to get upgraded rooms so we all have balconies. Cheri and Marc were going to do this for us at Christmas, but the scheduled chemo messed up their plans. Cheri figured now was a good time to do it. I am really looking forward to this. Now, even Cheryl is looking forward to it too. She has bought some new clothes and even a swimsuit! It should be quite relaxing and very enjoyable. There are even activities all day long to keep the kids entertained. Of course I will post details when we return.

The suspense was killing me waiting for Monday's appointment, so I called over to see if the bone marrow biopsy results were in so I could be better prepared for Monday's visit with the doctor. They were not back, but the CT Scan results were in. The nurse faxed them to me and I was quite disappointed. Although overall some better since three months ago, the size of most lymph nodes had not changed, or only decreased a little. I still have them in my lungs, stomach and groin. A few had disappeared, so that is good. I was really hoping that after the additional two rounds of chemo that were added on, I would see better results. As you know, the ones in and around my neck that were bothering me, went away after only two rounds of chemo. So why didn't eight rounds get rid of the rest? I am just a little nervous that this does not bode well for the bone marrow biopsy results.

There is no sense worrying about it though, because WE ARE GOING ON A CRUISE! (As long as the hurricanes stay out of the Gulf of Mexico!)

Keep up those prayers folks, I do appreciate them very, very much.

Monday, August 21, 2006

A One Week Waiting Game

Last week I was supposed to have a PET Scan, but the insurance wouldn't pay, so I ended up with another CAT scan (hey a cat is a pet, right?). This morning I had my third bone marrow biopsy (BMB) since diagnosis. This is the important test for right now. If the marrow is less than 30% infiltrated with those little cancer nasties, I will enjoy some period of going back to watch and wait. If it is more than 30%, on the advice of Dr. Wierda at MD Anderson and my local doctor, I will have to do some type of further treatment to push this further into "intermission." (Some don't like the term remission. Cheryl loves it, I think it is great too, but many don't understand it. This cancer will come back at some point in the future, so I will use "intermission.")

The BMB went very, very well. It was CT assisted with conscious sedation. The CT scan apparently helps pinpoint where the best place to drill will be. (Soon I will be glowing in the dark from all the radiation!) I told them if they struck oil in the drilling, I wanted to collect on the residuals, but if all they got was natural gas, I would apologize in advance.

I was mostly awake, but felt no pain! I still feel no discomfort at all and I think all the anesthesia has worn off. Same as my first one done there over a year ago, and much better than the one at MD Anderson a year ago. That one really hurt and I wrote in detail about it earlier in this blog.

Before I started chemo, my bone marrow was 90% infiltrated, so, after seven months of chemo I better see a good reduction or I will have to have a stern talk with my inner mouse/hamster. Wouldn't it be great to get a report that says at the present time it is undetectable in the marrow? Well, I have to wait a week to find out. Next Monday afternoon is an important appointment with my oncologist/hematologist!

Thursday, August 10, 2006

Busy Times

Some very good friends of mine, Paula and Earl Dunn (he was my pastor for many years in San Angelo, TX), wrote to me and asked me if I was OK. They said I had been "strangely silent" since my last post on the spammers. Well, I am doing fine, but have been quite busy with all kinds of stuff happening. I will try to give you some highlights without going on too long, not my strongest point.

Last week I was in El Paso, TX from Monday through Friday conducting a training. In case you didn't see it on the news, El Paso had severe flooding all week. And this in a desert area that only receives about 6 to 8 inches of rain an entire year if they are lucky. I arrived Monday afternoon to rain and temperatures in the 70s (most of the country was baking with temps over 100!). It had already been raining most every day for 5 days. Tuesday morning while in class it really began to pour. We went down stairs on break and watched as water poured down the street. About 30 minutes after resuming class, someone came in and told us if anyone had cars on the street we better move them now as a car had already floated down the street and was a block and a half away. I had parked in the garage but my co-trainer, Amanda's car was on the street as were some of the cars of participants. Water was already up to the door of her car and a participant's car in front of her's had water part way up the door. Amanda started to cross the street to get to her car, but the water was up to her knees and she had a skirt on. So, one of the male participants rolled up his pants and ventured out into the water. Amanda's car only had water on the floorboards, the car in front of her had lots of water. They backed them up into a reserved parking lot and when the other fellow opened the doors water just poured out. Looking down the street we could see cars under water and people wading in water up to their waist and above. I have only seen that on TV before! We went back to class. Lunch time it was still raining, but not as hard. Folks were able to go out the other side of the building onto another street that was steeper. Although water was running in the street, it was not over the sidewalk, so they could walk up the hill to a restaurant a block away. By one o'clock the rain stopped for awhile. At two o'clock it was announced the agency we were at was shutting down because the flood waters were receding, but another large rain cell was on the way. The interstate was closed in both directions. My hotel was over by the airport on the east side of the city and the heaviest rain had been on the west side. The normal drive time was 10 minutes. Since the interstate was closed, all the cross streets that you could get down were jammed with cars. It took more than an hour and a half to get to the hotel. The street was full of debris and landscaping rocks that had washed from businesses and homes. And this was on the "good" side of town that hadn't received as much rain. Radio reports said one area on the west side had gotten 13 inches! It was supposed to rain the next day, but it was sunny and allowed things to begin to drain and dry out. However that night more large storms came in and more flooding. When I first woke they said the interstate was closed again. However by the time I had to leave all but one west bound lane had opened. Because of concern of an imminent dam break on the Mexican side of the border, the night before a large area of downtown was evacuated and I didn't know if our training site was included. It turned out that the evacuation area stopped a couple of blocks away from where we were training.

Thursday was my birthday. My co-trainer had the room decorated with a sign and horns and party stuff on the tables. Later that day they brought in a decorated cake with candles. That was so nice of her! Cheryl was upset I was gone because it was the first time in 42 years we had been apart for my birthday. Birthdays are not as important for guys, I don't think. We celebrated as a family on Sunday after I got home.

The rest of Thursday was uneventful, other than light rain. Friday afternoon, just before the training ended, very heavy rains moved in. However this time it was on the east side, the airport side. When I left the training site, the interstate was again shut down and reports on the radio said heavy flooding was occurring near the airport. Initial reports said a dam on the military base by the airport had broken. Later it was learned that it had just overflowed and was causing flooding. Cars were under water at a restaurant next to the hotel I had stayed at and less than half a mile from the airport. After two hours of trying to get over there and making little progress on an increasingly flooded street, I pulled off into a shopping mall to wait it out. Fortunately my flight wasn't until 9 p.m. The rain stopped and I was able to get to the airport about 7:30. I was glad to be leaving!

The hotel also lost Internet connection on and off, mostly off, during the week and I felt lost and "disconnected." I am very sorry for the residents of El Paso and the people on the Mexican side of the border. Thousands of people in El Paso were displaced and hundreds of homes were destroyed beyond repair. The TV at the airport showed cars and trucks buried under tons of mud and homes filled with mud. Most of the hardest hit homes were in poorer sections, although some affluent areas were also hit hard. Of course, who carries flood insurance in the desert? So most were uninsured. Here are a couple of private citizen's pictures I pulled from the net:


The water had rushed through the back wall of this new Blockbuster video store and broke it down, it then collapsed the side walls. The news said thousands of videos were scattered around the neighborhood for several blocks!

I saw much worse video of much higher water on the news reports, but those pictures can give you some idea. Really unheard of for El Paso.

I also want to mention that my birthday, August 3rd, is shared by Earl Dunn - of course he is MUCH older than I am. Many different years we celebrated in person together. We always exchange cards, but this year, for the second time, I didn't get one out to him. I could use the excuse I use for everything now, "chemo-brain," but I can't because I did think of it in advance, I just put it off too long. Sorry, Earl. So, here, for all the world to see, I want to send you happy belated birthday wishes and wish you a happy birthday for next year in advance in case the same thing happens :)

Also, David Emerson, whom I have written about here and who has his own blog documenting his battle with prostate cancer, celebrated his 15th wedding anniversary with his wonderful wife, Mary on August 3rd. I watched a video clip of him doing an interview on his local TV station. He was terrific. I would give the link here, but it expires tomorrow morning.

So, to continue my personal soap opera, I got back home from El Paso very tired about 12:30 a.m. Saturday morning. When I went to get the mail the next day, I noticed "dirt" on the floor by our coat closet. I asked Cheryl about it and she didn't know what I was talking about (not too unusual an occurrence, lately). I opened the closet door and was greeted with a large pile of attic insulation and a very soggy ceiling that was now on the floor and laying on the closet shelf on top of Christmas wrapping paper and ribbon. Oh, and the coats were dripping wet, too. Our air conditioner unit is in the attic (yes, they do that here in this part of Texas) and it had sprung a leak. There were water spots in the ceiling in the living room by the closet and around on the other side in the laundry room and water streaks down the walls too. We spent time cleaning up the mess and the carpet was all stained from stuff on the floor. After moving the piano in the living room, we saw stains there too on the carpet. The A/C repair man spent three hours in the hot attic fixing the leaks. The estimators for the insurance company came yesterday. All the carpet in the closet and living room/dining room will be replaced. Of course the closet will be totally redone. Because we have an open floor plan, the entire ceiling will be repainted -- living room, dining room, kitchen, family room and hallways up to the bedrooms and bathrooms. The entire laundry room will be repainted, too. So much fun!

I had my dermatology appointment on Monday and two probable skin cancers were removed. One on the top of my head and one on my chest. Another area on the top of my forehead was frozen off as she said that was a pre-cancerous area. I now look like Mr. Gorbachev with the spot on my head. The lab reports on the spots she cut off will be back in two weeks.

After that, I headed over to the oncology lab for my latest blood work. It looked some better in most areas. Red cell count dropped some, neutrophils (infection fighters) were down some, platelets came up to 96 -- I had hoped they would be higher, and white count was just barely below normal range. Overall pretty good. The nurse told me verbally that my protein level had dropped more and it had been low for some time. I asked her what I should do about it and she said eat more meat and dairy. Hmm, I have one to two meals a day with meat and have milk on my cereal every morning. I don't need to gain anymore weight. But I cooked T-bone steaks Monday night and ate a whole one. Hey, have to follow medical advice!

I was supposed to have the oncology appointment yesterday. Shortly before I had to leave (Cheryl already left her work), the nurse called me and said Dr. Netaji was canceling the appointment. He wants me to have the bone marrow biopsy and a PET scan before he sees me. So they are being set up for next week. I reminded her that I wanted to be under sedation for the biopsy and she said that is the only way they do them. YEA! If you remember, I have had it done both ways. The sedation was great. The one done at MD Anderson with a local was horrible because they couldn't get the local to work after several tries. Finally they just did it. I am teaching in class all next week, but I will be here in town in my own office building. Because it is a large class, there are two other instructors with me so I will be able to get away for these tests.

Yesterday, after the adjuster left, I went over to the Leukemia/Lymphoma Society's office. I am signed up again for this year's Light the Night fundraiser (many of you will be hearing from me later on this). Last year, thanks to generous friends and family, I raised over $2,000! The walk is late October. They also talked me into being an "honored patient" for the walk. At first I said no because the other term used is "honored hero." I certainly wouldn't begin to call myself a hero just because I have cancer and have undergone chemo. That term doesn't fit for me. Heroes are the firemen and policemen who rushed into the World Trade Center, they are the men and women serving in Afghanistan and Iraq, they are the men and women who risk their lives everyday serving and rescuing others. I will accept the term patient, but not hero. Fortunately the paperwork giving them permission does say "honored patient" so that made it easier to say yes. They wanted three patients of a wide age span (guess which end of the span I am on!) to put a face to the disease for the corporate teams that might be walking and raising funds without knowing someone personally who is fighting a blood cancer.

I think that about catches up on everything, whew! I have been really tired all week and have been falling asleep early in my chair. Sometimes I wake up and come out to the computer for a bit and sometimes I just head into bed. I am pretty much caught up reading emails and posts over on the CLL Forum and the ACOR list. Funny how you can get so far behind so fast.

I don't know how some of my fellow bloggers do it by posting most every day. I keep telling myself that this is the day to update and then something always happens and it gets too late. I admire the folks that are able to do it. If I did, my individual posts wouldn't be so long! Well, it is now 1:15 a.m., and even though I have already slept several hours tonight, I need to get to bed. I will pay for this tomorrow.

As always, but I never want to forget, thank you all for your concern and most importantly, your prayers!