40 Years and Counting

Where did the years go? Oh I know it has 'only' been about 5 or 6 weeks since I last posted and I don't know where those weeks went either. However, what I am talking about is these last 40 years of married life. Today is our 40th wedding anniversary and it just doesn't seem possible. Much has transpired over those 40 years. Don't worry, regular readers of this blog. I know I tend to ramble when I do post but I won't recap the entire 40 years. But I would like to talk a little about our wedding.

We were married two days before Christmas in a little Baptist church in Norwich, NY. We chose this time because I was in the Air Force, stationed at Syracuse University attending language school, learning Russian and this was the time when we had our Christmas break so it seemed like a good idea at the time. Cheryl has said several times over the years since we have gotten older that she can't believe how unthoughtful we were to put our families through all that added pressure at the holiday time. Cheryl was from Norwich and my parents moved there when I was a senior in High School. I had to drop out of college due to some health problems and then I got a job working as a cook in the local hospital. Cheryl was a senior in high school and worked there after school as a "tray girl" putting the food on the trays and taking them to patients' rooms. I had just broken up with my girlfriend from college and she had just broken up with the boy she had gone with since Jr. High. We were "crying on each other's shoulders." I guess you could say it was a rebound romance. We went together for over three years before we were engaged.

Since neither of our parents had much money at the time (Cheryl's mom had died that summer from cancer), we paid for most of our own wedding. We saved a ton of money on flowers because we decorated the church in pine boughs and red ribbons. Instead of bouquets, the attendants carried white hand muffs with holly and ribbons (it was 40 years ago and winter muffs were popular). We rented a local restaurant dining room and brought our own snacks (home made cookies), cake and punch. We had a pay for your own drinks available. Folks were more understanding of that kind of thing back then. My goodness, my pay was just barely over $100 a month then. The most expensive part of the wedding was her dress and veil and the veil cost more than the dress - $60 I think. Cheryl made the most beautiful bride ever! You can't tell by these pictures that she was sick that morning -- nerves I think.


It was a beautiful wedding. We had lots of attendants as you can see in this picture.
(I think you can click on the pictures for a larger view)

My oldest brother, Jim, was my best man and Cheryl's sister-in-law, Lois, was her matron of honor. My nephew, Dan, and Niece, Pam, were the ring bearer and flower girl.

Cheryl's attendants were one of her sister's, a very good friend, Charlene, my sister-in-law, Barb, and her cousins. Two of my former bosses, my roommate at language school and two of my other brothers, Bob and Bill were there. My youngest brother, Bill, the current Broadway actor, was a junior usher. One of my brothers was stationed in Thailand and couldn't make it.

That evening Cheryl and I just went a few towns away to a local motel because we both wanted to be home and spend Christmas with family. We went out that evening and had a steak dinner. The next morning the maid started knocking on the door early to clean the room. We kept putting her off. Finally, she hollered through the door, "you are the only ones still here and once I clean your room I can go home for Christmas!" We finally let her in while we finished packing our bags. Because my mother had filled our suitcases with rice and put it between everything, there was rice all over the floor of the room. The maid asked us if we had been to a wedding. No, duh!! Obviously this wasn't the Hilton.

After Christmas we headed for New York City. I love NYC!! I used to go there every chance I got and went to plays, TV shows and the museums. I knew the city pretty well and was anxious to show Cheryl the sites as she had never been there, even though she lived only 200 miles away. I had made reservations for 5 nights (Cheryl had written to almost every hotel in NY to get prices - ha! Some replies were funny, like the one's that were men's hotels only or basically flop houses.) We had a nice room way up high. Guess what? Cheryl hated New York City. Being the small town girl she was scared to death. Scared of crowds, heights, crime, you name it. We tried getting into shows but since it was the holidays, sold out. Stood in lines for TV shows but never got in. We did go up the Empire State building - and came right back down as it was there she discovered her fear of heights. Sooo, we left on the third day and came home -- in a very bad snow storm. We took a shortcut over the hills (I was young and dumb) and couldn't always tell where the road was as no cars had been there. The snow was up to our bumper. Somehow we made it. After I graduated from language school, we took a second honeymoon to the Adirondack mountains. She loved it -- few people and lots of trees and animals. Fortunately I like that setting too, so I decided to keep her.

40 years is the Ruby Anniversary. I hope she doesn't think I overdid it. I bought her a ruby ring and two ruby necklaces. Hey, I might be retired, but she is still working and has a good job - Ha! The girls are having a 'cake and coffee' reception for us at the church after the services tomorrow, so that will be nice. Cindy wanted to have a much bigger party but we kind of squashed that. She wasn't too happy, but it is a very busy time of year. When we hit 50 we will let her have a larger shindig. She said except for a few other couples at church and our former church, she doesn't know anyone who has been married 40 years. She said all her friend's parents are divorced. Pretty sad, huh?

God has blessed us over the years. We have had lots of different trials and tragedies to deal with, but each made us stronger. We never did argue very much and never over money which is what most married folks fight about. I guess you have to have some to argue about it. I just thank the Lord for bringing her into my life. My parents made it to 62 years even with dad having CLL and I pray that I can do as well.

HEALTH UPDATE

Since this is a CLL blog, I better bring you up to date on that. NO recent infections - yea! The IVIg must be working. I got the bill from the hospital for the first infusion. I couldn't believe it -- over $17,000! $16,400 just for the drug. My portion after insurance? $12! Man, it almost makes me feel guilty getting this treatment. I had my second treatment last Monday in the doctor's office. A terribly long day. We got there a little before 9 a.m. and left at 5 p.m. I got my bag of steroids, bag of Benadryl, and then 8 bottles of IVIg. Of course the Benadryl put me in la-la land, so while I snoozed, Cheryl went shopping. And then that night I was awake most of the night due to the steroids. For most of the week I have been fighting the headaches, just like last month. Last month they went away after about 2 1/2 weeks. My blood work is still basically holding and my platelets went all the way up to 117. Normal is over 150, but 117 is way out of any danger area. I did read on the drug insert they gave me that IVIg is sometimes used to raise platelets, so this is another added advantage. I can tell my neck nodes are still slowly increasing, too.

Mentally I have been avoiding thinking too much about cancer. I haven't been visiting my forums very much. On the CLLCfriends site, I am scheduled to post the daily prayer once a week, so I do sort of keep up with the news there. There are a couple of folks who are having some major difficulties, either for themselves or a loved one, and I try to keep up with that. Some also post news from the other site, so I sort of keep up there, too. I just heard tonight that Denise, from the forum, will be going home for Christmas after her transplant so that is wonderful news.

Well, I need to get to bed so I don't snooze through our reception.

You Surprised Me, Doc

Wow, another two weeks and much has happened. I had my first IVIg infusion a week ago Monday. I tolerated it pretty well. We arrived a little before 8 a.m. and the infusion was started just about 9 a.m. We had to wait for the pharmacy to mix it and deliver it to the infusion room. I took two Tylenol tablets and was infused with premeds of Benadryl and a steroid (I forget which one). They watch you very closely for any reaction, particularly watching for the blood pressure to go too high. Well, of course I never do anything the expected way and my blood pressure dropped way too low -- twice, maybe three times but the one time it was 40 over 20 and the nurse didn't believe that one. I was reclining in the infusion lounger chair so they made me sit up. But eventually my pressure came up closer to normal and stayed there so they were able to slowly increase the infusion rate. I slept most of the time. I had the bag of immunoglobulin antibodies and was done and out of there by 2:30 in the afternoon. That evening I did have a bad headache and had a headache most of the week. That is a common side effect. It really must have done some good because Jimmy, our grandson who lives with us, was sick all week and our other grandson, Jonathan, my daughter, Cheri, and son-in-law, Marc, were all sick with very bad colds and I did not catch it! My next infusion is in December.

Then this past Monday, I had an appointment at MD Anderson in Houston with a CLL specialist, Dr. William Wierda. We drove down on Sunday afternoon, Veteran's Day, which was also Cheryl's birthday. (We all went out to dinner together after church to celebrate.)

I thought the appointment with Dr. Wierda was very productive. (This was my fourth time seeing him.) My local doc thinks I might need to start chemo again, but Dr. Wierda agrees with Cheryl and me and doesn't think it is quite time yet. He does agree we are moving in that direction, though. When discussing the reasons my doc thinks it might be time, we talked about my widespread swollen nodes in every region -- neck, chest, stomach, and groin. I told him they mostly measured 3 cm by CT scan up from 1 to 1.5 cm last January. He said most of the time they don't treat just because of swollen nodes until they are over 7 cm. I had not heard that before. He asked how low my platelets had gotten (only in the 80s this time) and Monday they were 102.

He said before we did any treatment he would want to rerun most of the prognostic tests, with the exception of finding out if I am mutated or not as that doesn't change. He said he particularly wanted to check to see if I picked up any new chromosomal deletions. He then said, "Of course your body didn't listen to all those good prognostic indicators the first time around. I remember giving you all good news and saying you probably wouldn't need treatment for a very long time." I asked him if he thought there were prognostic indicators that we don't know about since I had all the best ones and needed treatment so quickly. He said of course there are and we just haven't found them yet. He said that is the only thing that explains the odd cases like me and those folks that have poor indicators and yet go without treatment.

I did tell him my suspicions that I may have had this for up to ten years but there had not been a CBC done. He said he really doubted I had it that long because of how quickly I progressed after diagnosis.

Then he shocked and surprised me. He said that when it is time for the next treatment, he wants me to start the process of preparing for a stem cell transplant. He could tell I was surprised, but he said that didn't mean we would do it then. He explained it takes a very long time to find a donor and get things prepared and set up. He wants to get the process started and have me meet with a transplant doctor/team and make sure I am a good candidate. I asked about my age and he said it used to be they wouldn't do it over 50 or so, but by today's standard I am relatively young (62) - bless his little heart.

Since Monday I have thought about this quite a bit and to be honest, it is very scary. It is a rough procedure with a fairly high (in my opinion), mortality rate. Basically they destroy your bone marrow with heavy chemo and infuse the stem cells and hope they engraft and take over. Recovery time can be quite long. Now I do know some folks that are doing very well and had a relatively "easy" time (remember, I said relatively). In fact, I met one of those guys, Paul, in person Monday. But just today I was catching up on some blogs and there are folks that are a couple of years past transplant still dealing with lots of problems and graft vs. host disease. I also know of several who did not survive the process, including one dear lady, Phyl, whose journal is listed over on the right side, here. We also visited with another fellow while there, a former member of our church, who had a stem cell transplant and his sister was the donor. He was supposed to come home three months ago, but he is still dealing with major problems. He hopes to be home by Christmas. His transplant was in May.

Dr. Wierda said he was very glad to see I had started IVIg. I asked him about my level not being below 300 (low 400's) and if it really fit the criteria. He said absolutely. Anything below 700 with multiple infections indicated the need. He said to do them monthly, but have my doc keep checking the levels and once they hit 700 to space the treatments out to just maintain a level over 700.

He said again he would strongly recommend Fludarabine, Cyclophosphamide (Cytoxan), Rituxan (FCR) for my next chemo regime if I didn't participate in a clinical trial. In fact, the two trials he mentioned that I would qualify for are adding stuff to FCR. (One of the trials is a double blind study and some folks would only get a placebo added to the combination of chemo drugs.) I reiterated that I was hesitant to do FCR because of how Fludarabine depletes the T cells and leaves you vulnerable to infections. Since this is a B cell cancer, I did not like the risk. He then said slowly, "and how many infections have you had this year?" Umm, nine. He said the leukemia was depleting my immune system and causing me to get these infections. The cancer is still growing, crowding out the healthy bone marrow. FCR would deplete the T cells but they would start to come back in six months to a year and the main danger of infections would be past. (Now Dr. Hamblin has said several times that NOTHING will completely restore the immune system for those of us with CLL.) Also the VAST majority of folks with FCR are getting a five year remission and many are getting even longer remissions. For the first time, it started to make sense. He didn't say it again this time, but I knew he wished I had done FCR the first time. However, I don't regret using my choice of Cytoxan, Rituxan and Prednisone the first time as I have now gotten 16 months of a partial response. Not a bad intermission. Basically it is the same thing, just without Fludarabine.

The final surprise, instead of saying "see you in a year," which he has said the last two times, he said he would like to see me again in two months and then changed it to three months. I didn't ask, but I had the impression that he thought I might be real close to needing treatment by then. We'll see. But at least I will be getting through another holiday season without being on chemo.

And finally, report cards came out this week for Jimmy. He had 5 A's, one B and one C!!! The best report card ever. He didn't even show it to us, Cheryl found it in his school bag. We are so very, very proud of him and we all went out to dinner to celebrate. He chose the restaurant. Here he is at his last football game.

Catching Up -- Again!

Well, you would think that since I am retired I would be able to keep this blog updated, but I really think I lose track of time much easier now. I figured I better update the latest before my good friends, the Dunns, send a big, burly, San Angelo cowboy down here to slap me around.

OK, lots of news and it is all good! I had my heart doctor appointment and he told me the enlarged heart thing was really nothing to worry about and that many people my age have enlarged hearts and don't know it. Hmm, "people my age"?????????? The young whippersnapper!

(A paste from the Word Detective: "Whippersnapper" is a somewhat archaic term, rarely heard today outside of movies, and then usually from the mouth of a character portrayed as chronologically-challenged and hopelessly old-fashioned to boot. A "whippersnapper" is an impertinent young person, usually a young man, whose lack of proper respect for the older generation is matched only by his laziness and lack of motivation to better himself.
One might imagine that the term derives from the understandable temptation among more productive citizens to "snap a whip" at such sullen layabouts, but the whips in question actually belonged to the whippersnappers themselves. Such ne'er-do-wells were originally known as "whip snappers" in the 17th century, after their habit of standing around on street corners all day, idly snapping whips to pass the time. The term was been based on the already-existing phrase, "snipper-snapper," also meaning a worthless young man, but in any case, "whip snapper" became "whippersnapper" fairly rapidly.
Though "whippersnapper" originally referred to a young man with no visible ambition, the term has changed somewhat over the years, and today is more likely to be applied to a youngster with an excess of both ambition and impertinence.)

But I digress (as usual). He said to be on the safe side he was going to send me for a chemically induced stress test and nuclear test (inject radioactive dye). Bottom line, I had the tests and everything looked very good and even plaque build-up that showed years ago seems to be gone.

I then had my monthly oncology appointment and my blood tests looked good. My platelets made it up over 100 again (they have really been bouncing) but my neutrophils are low. Lymphocytes still climbing slowly and the percentage is up over 80%. Now I know the percentage isn't that important and it is the absolute count that matters, but for some reason my doctor puts a lot of stock and emphasis on the percentage. He is really looking forward to my appointment at MD Anderson in Houston on the 12th. He made an appointment to see him again the very next week.

Another piece of good news is that my insurance finally approved the IVIg infusions. The nurse called me Thursday and it is set up for Monday, tomorrow, over at the hospital. Now initially when we were talking about this, my doctor talked about being in the hospital and the first time it would be given over a number of days, however that has changed. I will be at the hospital, but it will all be given at one time. He said to plan on five to seven hours this first time as it has to go very slowly as they watch for adverse reactions. I have initially been approved for once a month for five months, but he told me on the phone I may be getting this once a month for the rest of my life. This stuff is antibodies to help me fight infections and I wrote about it in a May blog entry which you can read HERE. I have had nine infections since last January, including pneumonia twice, bronchitis, ear infections, throat infection, and sinus infections. I really pray it helps as Dr. Hamblin posted in a reply to me last time, "The clinical trials have only shown a benefit in CLL for patients with IgG levels less than 300 who have had more than one bacterial infection in the past year." Mine are in the low 400s (723 to 1685 is normal at my lab) but I do have it beat on the number of infections!

And talk about time sneaking up on me, last Saturday was the annual Light the Night Walk fundraiser for the Leukemia and Lymphoma Society. Now I have participated in it for the last three years and through the wonderful support of family and friends, I have raised thousands of dollars. This year I didn't even set up my page until the Monday before and sent out the emails asking for support that Monday. But then the site messed up and the emails never went out. The email finally went late Tuesday and early Wednesday! However, folks came through again and by walk time on Saturday I raised $1,111. Not as much as previous years, but fantastic in such a short time. I still have a couple of other folks who have promised to donate and I have until the end of November to turn in the money. I really believe in the work they do as I personally know folks who benefited. My fundraising page can be found HERE. It was a good night with several thousand people walking. It was at a new location this year and was at the old hospital grounds where they recently opened the new Dell Children's Hospital. We walked past the hospital and they had the children on the oncology ward lined up at the window's waving to us and of course we waved back as we walked by. Here is a picture from the night with Snickers.


Our grandson who is living with us this school year, Jimmy (oops, "James") had a rough couple of weeks, but his medication has been adjusted and things are back on track. Most of his problems happened here at home (daily) and the two incidents at school were minor (compared to last year). His three week progress report came out and he has four A's, two B's, and two C's. That is such a huge improvement over last year when he had all C's and F's. We are so very proud of what he is accomplishing this year. Since he passed, he is back playing football. I hope I get done with my treatment tomorrow so I can go see him play in his last game.


Jonathan, my other grandson, got all A's and one B and I think my granddaughter also had all A's and one B. They get their smarts from their grandmother.


This morning a lady in my Sunday School class told us she just found out she has breast cancer. On the fifteenth she will have a lumpectomy and then radiation treatments. I don't want to put her name here as I didn't ask her for permission, but I would appreciate prayers for her. God will know who you mean.

Well, that is it for now -- all the news that's fit to print and some that ain't.

A Busy Two Weeks

Well, "retirement" continues to be a busy time! I had my oncology appointment on Monday, October 1. The blood work continues to look fairly good, although platelets are below 100 again. I believe it was Dr. Keating that said the blood is only the tip of the iceberg for many with CLL/SLL. My doc again reiterated that he felt we were about at chemo time and wanted me to "stop procrastinating" and get the appointment at MD Anderson with Dr. Wierda. I explained to him I was NOT procrastinating it was the fact that my new insurance still had not approved a referral and I was waiting on that. I guess he understood that because he hasn't gotten the approval from them yet for IVIg infusions, either. This past Friday, I got my appointment date for MD Anderson -- November 12th. I'm not sure of course, but I think Dr. Wierda will recommend holding off on chemo and continue to watch and wait as long as I can get the IVIg to try and stop all the infections. My doc confirmed the X-ray the week before showed the pneumonia was gone.


On Tuesday the 2nd, Cheryl and I drove 200 miles for lunch. Why would we want to do that? Well, it wasn't for the food (although it was good), but for some great company for lunch. David E, the fellow I have written about often here on my blog, was in San Antonio for a conference for his work. It was a great time and well worth the trip. He is just as great a guy in person, if not more so, as he seems on his prostate cancer blog. He even insisted on buying lunch! Unfortunately the time passed much too quickly and he had to get to his next workshop. Perhaps we can meet him and his wife again someday in his home area. Here we are on the river walk:
Then on Wednesday the 3rd, I had my Endocrinology appointment. They primarily monitor my diabetes, osteoporosis, cholesterol, triglycerides, carotid artery that had blockage, and other weird blood stuff. Listening to my heart she said she thought she heard a murmur. She asked if I had my heart appointment yet. They have been trying to get me to go for almost a year because they say it is important to monitor because of the diabetes. I keep putting it on the far back burner because I see enough doctors as it is, so I had to confess I hadn't. She couldn't find the results they did of an echo cardiogram in August. (I knew they had checked my legs then and my chest, but I thought they were looking at circulation problems.) Anyway, the results had never been sent back so I waited while they found the results and faxed them to her office. Well, seems that test showed an enlarged heart, so this Thursday I finally get to see the heart specialist they have been pushing me to see.


That Wednesday and Thursday I was just worn out. Our church was having a special program with Team Impact on Wednesday through Sunday. Perhaps you have seen then on TV. They are the guys who are former football players, body builders, weight lifters, etc., who do amazing feats of strength, but also present a strong gospel message. I just couldn't make it and help out. I did get to attend the last one on Sunday evening. They were very good and pretty amazing. They broke lots of wood, flaming barriers, cinder blocks, blew up hot water bottles by mouth until they exploded, etc. More importantly was the message. During the five days, over 240 folks came forward in making personal decisions. We had overflow crowds that were in the youth area and gymnasium. Amazing.



That Wednesday we received some good news. Cindy, Corbin and Jonathan came over to our house. On the front of Jonathan's shirt it said, "I know something you don't know." Cheryl asked him what he knew. He turned around and on the back it said, "I'm going to be a big brother." Yep, she is pregnant. She is due next June. Our fourth grandchild. Jonathan is excited too. I told him, "I know something YOU don't know." He asked what and I told him, "You're going to be a babysitter!" On the 8th, Jonathan turned 13!


On that Friday the 5th, I had my dental surgery that was moved up from Saturday. I was SO very nervous about that surgery. I said I would have rather been going into chemo again. The anticipation of the event was MUCH worse than the experience - just like chemo was much easier, for me, than the nervous buildup prior to my first infusion. Before I got several shots of Novocain, I was first hooked up to an IV that had Valium, Decadron, and two other drugs I can't remember. Basically I was in La-La Land, although awake. I was pretty much aware of things, especially that he kept telling me to open wider and turn my head this way and that way. I only had two tiny twinges of pain at one point that were nothing but he was so apologetic. No pain when he was removing the tooth and he said he had a hard time with that. He said pain management was a big concern for him. Apparently he took a skin graft from the roof of my mouth to cover over some of the gum area. He also did two lower teeth that I didn't realize he was going to do, although we had talked about that as a smaller problem area. Everything along the gum line on the left top, the roof of my mouth and bottom left was covered in a smooth substance that looked like putty to me. That stuff did it's job. No pain anywhere at all!! After getting home, I had to keep cold water in my mouth for four hours. Cheryl did a good job of keeping the glass filled and keeping me awake the couple of times I wanted to drift off. Since my mouth and lips were numb, I was making a mess. I always thought that someday I would end up in my recliner drooling all over myself, I just didn't think it would be so soon. Because of the steroids, I woke up at 3:30 Saturday morning and didn't go back to sleep until about 2 a.m. Sunday morning. Of course the blood sugar went sky high too from the steroids.


The surgeon told Cheryl the infection was worse than he expected (and I actually thought it was mostly gone from what it had been). He said there was a hole in the sinus cavity bigger around than a pencil eraser and it was just pumping out nasties. He said he cleaned the sinus all out and plugged the hole. He did three different bone grafts using decalcified freeze-dried bone. The processing of the bone includes demineralization in hydrochloric acid. The donor bone is obtained from a cadaver, that was previously screened for syphilis, hepatitis B and C, and HIV virus and antibody. After decalcification, it is made into a powder form which can be stored at room temperature for long periods of time. He then withdrew blood from my IV and used my own plasma to mix with the powdered bone. When they separate the plasma, they make sure it is platelet rich. How ironic for those of us with low platelets. Somehow this all engrafts in me to form new bone. I had a follow-up with him last Friday and he said everything looks good. I told him I was more sore on bottom. He thought that was odd too because most of the work was on top. He did say he found quite a bit of infection on bottom, too. Since that is still sore and the heavy duty antibiotics are now gone, I hope I will not have a continuing problem there.


Last week Cindy was out of town for work and Corbin was back in the oil fields up in New Mexico (he is a driller). So, when she is gone, we now watch Jonathan. With Jimmy living with us it can get a little crazy sometimes coordinating it all. Two different schools in two different towns with two different football practice schedules and two different weekday football game schedules with two different boys forgetting things that grandpa has to take to two different schools and two different boys needing help with math homework. Whew! But I sure do love 'em!


I think that pretty much catches things up. Coming up is the heart doctor this Thursday, another dental follow-up Friday, local oncologist blood tests October 22, oncology appointment October 29, and MD Anderson in Houston on November 12th.

CLLgle - A Leukemia Only Search Engine

Andy, a gentleman from the UK and a member of the CLLForum and CLLCfriends came up with a great idea several weeks ago and I am finally getting around to add this to my site. He designed a search engine using Google gadgets that searches only CLL related web sites and Blogs. It is a work in progress and he is adding sites for it to search all the time. I know I have searched on Google before and have come up with unrelated information and now this will help narrow your results. I have added this helpful search engine link to my blog and it can be found over to the right, under USEFUL LINKS. Once there use it just like you would use Google. If you don't find what your are looking for, because it does only search a limited number of sites, then you can always use regular Google search.

NOTE: I had to edit this post because the search box that use to be here no longer works. You must go to his site to use the search engine. Use the link over to the right under "Useful Links" or, just click HERE

Here is what Andy has to say about this search engine:

We've picked the best CLL Leukaemia and Cancer information sites to sort the CLL wheat from the chaff. No more results from the Centre for Lifelong Learning or the Central Lancashire League. Chronic Lymphocytic Leukaemia Search Engine searches 24 sites, including: library.med.utah.edu/WebPath/TUTORIAL/PHLEB/PHLEB.html, pim.medicine.dal.ca, www.treatingcll.com, www.cancerhelp.org.uk, mutated-unmuated.blogspot.com

So go ahead and give it a try. I know folks end up on my blog through regular Google searches so if you didn't find what you wanted here, this tool just might get you where you want to go. (Oh, and no Andy does not misspell Leukemia. He uses the British spelling of Leukaemia.)

For Everything There is a Season

When we moved to this area we looked at a lot of houses to find just the right home for us. Two things primarily impressed us about this house. For Cheryl it was the kitchen and the huge amount of counter space. For me, it was a tree. When we pulled up to the front of our home for the first time, I was impressed with the sight of the large, multi-trunk tree at the corner of the driveway. It had character.

The trunk that was closest to the driveway wrapped one complete turn around the trunk next to it and branched out over the driveway. (I couldn't find a picture that still had that trunk in the photo.) The builders of this home even accommodated the unusual growth by building the corner of the driveway out and around it. After moving in, I quickly discovered I had to be careful backing out so as not to hit it.

Our tree, which was already very large, quickly grew much larger. Every year I needed to hand trim branches as they drooped too close to the sidewalk and made it difficult for passersby. Technically it was probably multiple trees that grew close together, but we just called it “our tree.” Our tree covered the entire front yard and over the whole driveway. It provided shade during the hot summer and a place to hang lights at Christmas. We loved our tree.

About seven years ago we noticed some cracks in the large trunks and became concerned that a strong storm could knock it down. We called a ‘professional’ to have a look. He said it was still OK, but recommended we cut it down because it was a Hackberry which he called a “trash tree.” What??? Trash? Well one person’s trash is someone else’s treasure and that tree was our treasure. His price to cut it down was VERY high. We thanked him and sent him on his way. We did have another fellow out to give us an estimate to cut it down – his price was very, very low. But our heart was not in that and we just had him trim it some and he did a good job. The next year we noticed that our tree began to leak sap all over our cars. Each year it got worse. Then, through the power of the Internet, we discovered the “sap” was the “honeydew” from aphids feeding. Yep, sap that had passed through the aphids. I bought some ladybugs to try to control them – didn’t work.

Two years ago the portion that had the trunk that wrapped around the other trunk, died. Just like that. Earlier that spring I had noticed a fungus at the base that was white and black. I just scrapped it away. We cut the top off but left the trunk because I thought it might be supporting one of the branches of the trunk next to it. Last Spring we were standing in the drive and my youngest daughter leaned against the trunk and it broke off at ground level. The base was like sawdust. Yikes.

Over the years the cracks in the trunk had been getting larger and we kept debating about having it cut down. But we loved that tree and couldn’t bear to do it. But last year, after that trunk broke off we called the fellow out who had done the trimming. I was going to have our tree cut down. But when he arrived, I just couldn’t do it. We had him do a major trimming of all the lower branches and also trimmed it out away from the house. Basically, he lifted it up, thinned it out, and trimmed all the way around the crown. Again, he did a good job. Cheryl kept saying some day we would be sorry when the tree fell on our cars or on the house. But she loved it too and understood my reluctance.

A few weeks ago I noticed the portion closest to the driveway was looking a little puny on top. The leaves were sparse and looked sick. Then I noticed the dreaded gunk around the base of the trunk.

Upon examination, it was around the ones next to it too. When I showed it to Cheryl, she took her car keys to scrape at it and her keys sunk right into the trunk. YIKES! I knew it was now time. I couldn’t put it off any longer. It had to come down. I called, my tree guy who came out that evening, gave me a price (much higher than the price from several years ago) and he came back with his crew the next day. They arrived about 9 a.m. Three large trailers full of cuttings and seven hours later, the tree was gone.

The only evidence was a lot of sawdust everywhere and stumps cut off at ground level.

I couldn’t help but make an analogy to my disease and some other types of cancer. Outwardly everything looks good. For a long time the tree really did look healthy and even the day it was cut down it still looked pretty good. People walking or driving by and glancing at that tree had no idea. It looked very healthy. But it was what was going on at the base, in its “marrow” that told the true story. There was a fungus, a disease, a cancer eating away at the core of that tree. Perhaps if I had treated the disease sooner, or with a different type of medicine, I could have saved it. Maybe, maybe not. But it is too late now. Choices were made and there is no going back. That tree brought shade, beauty and pleasure for many years. Now it is gone, but the good memories remain. The yard looks very different, but it is time to move on. No more aphid poop dripping on my car.

HEALTH UPDATE

So, what is going on with me? A recent X-ray shows the pneumonia is gone. That was a strange episode. I see Dr. Netaji, my hem/onc doc next Monday.

The next big drama will be on Saturday, October 6th. I will have major dental surgery. The periodontal guy I saw had this fancy new type of X-ray machine that immediately transferred the pictures directly from the receiver inside my mouth to the laptop computer. Never had to take it out to develop film, just repositioned it around in my mouth. Amazing. The pictures were so sharp, bright and clear that for once I could actually see everything he pointed out to me. Before whenever a dentist showed me X-rays I would just wisely say, “hmm-hmm, oh yea,” and pretend I could see what they were talking about. But this time I really could. He put the laptop on my lap (how thoughtful) and zoomed in on the pictures and showed me exactly what he was talking about each time.

Anyway, the infection is still wide-spread, even though it feels much better. I have had trouble there ever since a botched set of root canals were done 8 years ago. I was on codeine for two weeks that first time and couldn't eat on that side for almost two years. It has been one infection after another. The root canals were redone (the first posts actually went up through the roots into my gums causing pain and infections), had surgery once before on the roots, but not this extensive. On the X-ray I could see where the root canal on the third tooth from the back got botched and the drill file went out through the side of the tooth (of course I remember when that happened). That repair job is deteriorating so he is going to seal it from the outside once he has everything opened up. Anyway, the bone has deteriorated, and my sinus cavity above has collapsed (or grown?) into the root area of the teeth and is all infected. He showed me where the sinus cavity should be, with a good buffer between the teeth, and how it has bowed right down into the roots and just above the bottom of the gum line. He thought I should be in much more pain than I have been. He is going to remove the last molar (upper left) where most of the problem is, but still do surgery on the roots of the next four teeth too. He will be doing a bone graft and somehow doing something to clean out the infection in the sinus cavity - I didn't quite understand that. My mind must have shut down at bone graft. It will take two and a half to three hours.

Today I got a letter telling me how much this will all cost. I guess I am helping him pay for that fancy X-ray machine. The bill will be almost $5,000! Oh, but I get a 5% discount if I pay by cash or check – not credit card. Isn't that nice? I have already spent several thousand dollars up there over the last 8 or 9 years. My wife always said I should have sued that first dentist and for the first time I think maybe I should have. I just hate it when folks sue every time you turn around.

I innocently asked if I should have a substitute teacher ready to teach my Sunday School class the next morning. He laughed and said that would be a good idea because I would still have packing in my mouth. Hmm. He said he won't be doing anything until he consults with my hem/onc on every aspect of what he will be doing, including all the meds. He said the standard antibiotics he normally would give might not be strong enough for me. Sure enough, he called yesterday and changed the antibiotics to a stronger one. I will also have blood tests next week to make sure my platelets are still up.I actually think I would rather go through chemo again than have this surgery. However, if it works and finally clears this up after all these years, I guess it will be worth it. For years I had wanted to pull this tooth and the one next to it, but every dentist I went to strongly discouraged it. Now that the bill came in, I am wondering if it wouldn't be best just to pull that whole row and put some artificial choppers in.

As always, your prayers and well wishes are greatly appreciated.

Lots to Think About, But Nothing to Worry About(?)

Strange several days. Last week Tuesday, I had my scheduled blood tests followed by a CT Scan my doctor uses to keep track of my internal nodes (yes, I am aware of the controversy of doing this because of the increased radiation and I have mixed feelings myself). My blood work actually looked really good, particularly in light of the slightly crappy way I have been feeling. Several times now, the worse I felt, the better the blood looked. My platelets climbed back up above 100! Of course the white count and lymphocytes are still climbing, but that is expected. As Karen is fond of saying, "stupid disease."

Because of a simple question I asked and the um, not too awfully bright clerk at the desk, I spent three hours waiting to get my CT Scan. When I asked the clerk if she was sure the paperwork I just signed was correct because it didn't indicate they were scanning my neck, she asked why I wanted the neck done. I told her my hematologist/oncologist doctor usually scans the neck because I have node involvement there, too. She looked at other papers and said, no, the doctor didn't order it, but she would check with him. I said, "OK, but don't worry about it." I overheard her say to someone else, "This guy's neck is hurting and he wants that scanned too." I never said anything close to that! Three hours later I was still sitting there. To try to make a long story shorter (not my strong suit), she finally said they couldn't get in touch with my doc because he wasn't in the office and I would have to come back the next day. I told her to just have them do what my doctor ordered. She said I would have to come back because I had now "missed my slot." I asked her why they just couldn't squeeze me in? She replied, I had to come back, otherwise they would have to charge my insurance differently because they only had a few slots for the cancer clinic and I missed mine. HUH???? I'll skip all the details, but I did remain calm... sort of... and a supervisor finally stepped in, said that was ridiculous and I was taken in to get my scan in less than five minutes.

Late the next afternoon my phone rang. It was Thomas, one of the nurses from my hem/onc's office. He apologized for the mix up the day before. I told him it wasn't their mix up, it was the girl on the desk at the testing facility. He then said Dr. Netaji was going to call in a prescription for the antibiotic Levaquin and wanted to know my pharmacy. I asked why and told him I was already on antibiotics since the previous Friday for a gum and tooth infection. He asked what I was on and the dosage and then said he would check with the doctor and call me back. When Thomas called back, he said I was to continue taking the Amoxicillin and check my temp every few hours and call if my temp went up. Also, I was to call the next day to tell them how I was feeling. I asked why, and he said the scan showed "infiltrates in my lower left lobe." I said, "Oh, OK" and hung up. THEN I wondered what he meant by that. I told you before, I am not too quick sometimes.

So, I did what I do when I don't know what the doc means. Uh, no, I didn't call back, I went to Google. There I found that most of the references indicated it meant pneumonia. But there were a couple of sites with references I liked less than that option. They indicated a different type of lymphoma than what I already have. Here are extracts from what one site said about a diagnosis for a fellow with lung infiltrate and no symptoms:

• "Extranodal marginal zone lymphoma (previously known as MALToma). Primary pulmonary lymphoma is defined as a clonal lymphoid proliferation affecting one or both lungs (parenchyma and/or bronchi) in a patient with no detectable extrapulmonary involvement at diagnosis or in the subsequent 3 months. Primary pulmonary lymphomas are rare tumors comprising about 3% of all extranodal lymphomas, and only 0.5% of all pulmonary malignancies.... MALT lymphoma cells originate from the marginal zone B cells.... A total of 30 to 40% of MALT lymphomas has been reported in patients with preexisting autoimmune diseases, including Sjögren syndrome, rheumatoid arthritis, systemic lupus erythematosus, .... and in settings of immunodeficiency. ...in settings of chronic antigen stimulation, including infections and autoimmune diseases." (bolded by me for added emphasis)

I didn't like the sounds of that. CLL/SLL is a B cell cancer. CLL and SLL also make you immunodeficient. I have had lots of lung infections, including bronchitis and pneumonia earlier this year. Yikes, the blessings and curse of searching the Internet.

The next day, I called Thomas to tell him I was still feeling fine and asked him exactly what this all meant. He said I have pneumonia. I asked him if he was sure and he said yes, I had fluid in my left lung. When I asked him why I didn't seem to have symptoms, he said it was just because the "bugs" hadn't started growing in the fluid. Maybe the Amoxicillin was holding them back. OK.

This Monday I had my appointment with Dr. Netaji. He reaffirmed I had pneumonia. When I asked him how I could have pneumonia without any, or few, symptoms, he said it was because my immune system is so low so it is not reacting properly. That answer doesn't make a lot of sense to me because I know folks with very low immune systems get very ill with pneumonia. Anyway, I am getting a chest X-ray tomorrow, so we will see what it looks like then.

He then went over my CT Scan. Seems like most of the lymph nodes in my chest, stomach and groin have doubled in size since last time. I know the ones in my neck are getting bigger, I can feel them and it makes it feel like the beginning of a stiff neck. Even though it wasn't ordered, the test did get a partial picture of my neck, and affirmed they are growing there too.

He said I was getting very close to needing more chemo and thought it would be a good idea if I got in touch with Dr. Wierda at MD Anderson in Houston, to see if there was anything new or any clinical studies I might be eligible for. He said it might be worth a trip to Houston.

Also, because I have had another ear infection, tooth/gum infection, and this pneumonia just since the last time I saw him, he is going to get in touch with my new insurance (TriCare Prime) to see what their requirements are to cover the $10,000 treatment. Also, he said I would need an infusion treatment once a month. My old insurance required two infections within a year and IgG levels below normal. They also didn't fully cover cost unless I was in the hospital to get it. Now I have had eight, maybe nine, infections since January, including pneumonia twice and when he checked my IgG level at the beginning of May, it was 438 (normal 723-1685). He hasn't tested it since then. Now, Dr. Terry Hamblin, a renowned CLL expert whom I greatly admire and respect, posted on this blog in May: "The clinical trials have only shown a benefit in CLL for patients with IgG levels less than 300 who have had more than one bacterial infection in the past year." I forgot to mention that to Dr. Netaji.

So, lots to think about and try to figure out.

Oh, and I am going to a Periodontist on Friday because the gum infection hasn't fully cleared up since I finished the ten days of antibiotics.

Oh, and I upset my youngest daughter and didn't mention to Dr. Netaji I was very sick over the weekend with severe stomach problems. Actually, I have had the 'runs' for a couple of weeks now, but not like this weekend when it was severe and constant and with nausea. I didn't want to sound like a whiney baby!

Oh, I think I will take another nap now.

NOT the "Good" Cancer

Chronic Lymphocytic Leukemia (CLL) is often described as "the old man's disease" or even "the good kind of cancer" by medical personnel. These descriptions anger those of us that have it. Although the first description may fit me, it doesn't fit many, many others I know who are female and/or in their 40's, 30's and, in a couple of cases on our support sites, 20's. Certainly NONE of us would ever call it the good kind of cancer.

We have lost many good folks to this disease over the years, but recently we have had a rash of losses that have saddened us all. Just in the last few weeks, we lost Dee Davis from the ACOR list. In my last post, I wrote about the passing of Kurt Grayson. David Arenson wrote a wonderful tribute to Kurt on his blog HERE. Kurt's death was followed by the death of a dear sweet lady, Phyllis Keeton on September 3rd.

Phyl was a vibrant, humorous, positive, wonderful lady. She was diagnosed in June 2004, and after several chemo treatments, underwent a Stem Cell Transplant on March 29th this year. Initially she did pretty well and then she developed complications. She fought a good fight. On March 1st, as she was preparing for the stem cell transplant, she wrote this:

And I don't worry. I won't get one day added to my life by worrying. I know there are risks, but life is full of all kinds of risks, no matter how "safe" we try to be. There's a song that says:
"I'm a winner either way
If I go or if I stay
Cause I'll still have Jesus with me
Each passing day
I'll have a healing here below
Or life forever if I go
Praise the Lord,
I'm a winner either way!"
I'd like to stay a while longer, 'cause I think there's things left for me to do, but when the time comes for me to go, I'm still gonna be a winner! Phyl

Phyllis has her final healing and she is a winner.

On September 5th, DeAnn, a caregiver member of the CLLForum, lost her father to CLL. He had been diagnosed only two years ago. It just seems as though sorrow is being heaped on top of sorrow. There are several on both of my support sites who are not doing well at all.

At the end of July, two national figures, newsman Tom Snyder and NFL football Hall of Fame coach Bill Walsh both died from CLL. And of course last year Ed Bradley of 60 Minutes fame also died of CLL. These famous folks dying of CLL is what made even more amazing a comment a doctor made to me last month.

Many folks on my support sites, the CLL Forum , CLL Christian Friends, and ACOR, report that when initially diagnosed their doctors told them not to worry because they had the good kind of cancer. Well, it finally happened to me. I had an endocrinology appointment last month and I saw a new young doctor who had just joined the practice. This young doctor really blew me away. She wasn't quite 30 years old. Besides some annoying comments like, "Wow, it sure is hard to tell what symptoms goes with what because you have so much wrong with you," I finally got the "good cancer" speech. She said, "I see you have CLL. Well, that's the good cancer to have." I replied, "yep, same one my Dad died from three years ago."

Genuinely shocked, she said, "He died from it? That's unusual. I didn't think anyone died from CLL. I remember distinctly in medical school they said you don't die from CLL." I told her I guess they forgot to tell my dad that and all the other folks I knew who died who were members of the Internet groups I belong to. She was embarrassed.

Of course, after I left there, I realized I should have said, "Well what about Tom Snyder, Ed Bradley, and coach Walsh?" I also should have taken the time to educate her a little on CLL and also let her know how it really annoys folks who have it when we hear that it is the good kind to have. Now, granted, this new young doctor's specialty is not even close to CLL, but what the heck are they teaching these folks in medical school today?

Obviously a lot of doctors are being fed this nonsense. True, we know what they usually mean, but still, there is no "good" cancer. If it is so "good" I will gladly let them have it instead of me. No, actually I would not wish this on anyone. I had a doctor not long ago who, in my opinion, did say it properly. He said that none if it was any good but if I had to have any of it, this would be the one. I knew what he meant. There are many types of cancer that are more aggressive and cause much more pain and suffering.

This is from Tom Snyder's blog, April 2005, when he was first diagnosed (same time as I was). He said this:

"Anyway, my doctors assure me this is nothing to worry about, and I have to accept that, I guess. They say this kind of leukemia is not fatal, that people can live with it for thirty years. I looked up chronic lymphocytic leukemia on the Internet and found a source that predicted people who are diagnosed early can live up to twelve years. Those who are not diagnosed early--and the website does not define "early"-- have a survival rate of about two years."

Isn't it sad that Tom had to get his information from the Internet and not from his doctor? How prophetic it was for him that he did die just slightly more than two years after diagnosis. I often wondered if he ever went to see a true CLL specialist.

One of the things I think that may contribute to the perception it is a good cancer is that the vast majority of us do not look sick at all. It is a cancer of the blood, bone marrow and/or lymph nodes. Except when the nodes get exceptionally large, the effects are not usually visible to the eye. In July, another member, Gary E., died and only a day or two before he passed his wife posted a picture of him in his hospital bed surrounded by friends and family. Even though I knew how critical he was at that time, I was struck by how well he looked!

When folks die because they couldn't fight off the pneumonia or other infection, the cause of death isn't usually listed as CLL, but rather as pneumonia or respiratory failure, or whatever the infection was. I think this may contribute to the myth that CLL isn't serious.

When I posted some of the above on my sites, it got a lot of reaction from folks, especially on the forum. I wish I could post all the replies, but I thought I would post this one from the CLLCfriends site. I didn't ask his permission, so I won't use his name, but I think he said it pretty well:
' Yea! I've love going thru chemo 4.5 times in the last 6 years. I really enjoyed the nausea and the diarrhea so bad I had to use diaper rash med. cause it burned so bad. I did get a nice vacation in St Louis Mo. at Barnes Jewish Hospital. Great room service! The tri- fusion catheter for the three bottles of poison I had to drag around on a pole was great. Then when they ripped the catheter out because it fused to the muscle and I was only given a local, also great. I am also grateful for the 18 different meds I have to buy every month, didn't have nothing else to do with riches.................. " So thanks doc." But after all being said I have grown closer to God.'

One last point. It is also true that there are many folks who have a very indolent form of the disease. For them it never seems to progress and if there is some progression it does not seem to cause problems. I have read of cases where folks have gone for many, many years with no treatments and no problems at all. Those are not the majority of folks I know. Even though Dad had chemo several times, he did survive for 20 years with this disease.

Fortunately, I am doing well. No matter how this post might sound, I am not depressed, just frustrated with the loss of so many wonderful folks to the "good" cancer that isn't so good after all. Please pray for the families of those who have passed and for those who are struggling right now. If you found this blog because you are newly diagnosed with CLL and you did an Internet search, it is not all doom and gloom, I promise. I'll be more upbeat next time.

(By the way, I didn't think too many folks actually read this blog. Three days ago I put a visitor counter on the blog. I started the count at 100 because I didn't want to look bad with only one or two views. HA. I just looked and the counter is over 200 right now - it is at the very bottom of this page. As of last night, I have had 89 unique visitors since Tuesday morning. That amazes me!)

Tired, Tired, and Retired

What happened to August? Did anyone see it go by? Wow, what a busy month and it flew by. August was my practice-for-retirement month. I had managed to save enough leave that I was able to take just about the entire month off before my official retirement date. So, what were some of the significant happenings? Well, first of all NO blood tests this month. That was a first for quite awhile. A little strange also since the last blood tests put me back to stage four. Oh well, I have some tests coming up this month and we will see what is happening.

August 3rd I turned 62. It is this milestone birthday that is allowing me to retire early as I can collect reduced Social Security. I think I have said here that I hadn't planned on retiring until I was at least 66. However, with this stinkin' disease, it was time. I wasn't real productive at work and I was so tired most of the time. I wanted to retire now so that I could still enjoy some of this time without working. I didn't realize how busy I was going to be, at least so far. But, even though I am getting up fairly early each morning, it still isn't 5:30 a.m. and most days I do get a nap in at some point during the day.

Most of August I had one of the grand kids staying over just about every weekday. I think the family thought I might get bored or depressed not working - HA! I really do like having the kids here though. Even went fishing a couple of times with the boys.

The second week in August I spent a day at two dog pounds picking out a new companion. I thought I had found one at the first pound and spent some time in the yard with it. But, even though it was OK, there didn't seem to be a strong connection and after we got into the yard, he pretty much ignored me. So I went over to the county pound and immediately fell in love with a long-hair Chihuahua mix three year old male dog. He weighs 8 pounds. I took Cheryl back when she got out of work to have a look at him and we came home with him. Got him on Tuesday and had him groomed on Friday. Here are before and after pictures, meet Snickers:
We have certainly bonded and he barely leaves my side. He is a super calm dog and sleeps most of the time, either on my lap or in his bed. He doesn't know how to play at all and I am trying to teach him. Today he actually ran around the yard in circles, the most activity I have seen from him. We do go for walks a couple of times a day so at least I get some exercise. Here is his favorite spot when he is not on my lap:


Next on the agenda was the going away luncheon my work held for me. It was a wonderful time. There were even several friends from my former work place who were able to make it. All of my local family was there except for our granddaughter, Holly. She was at camp that week. I really appreciated all the hard work my boss and others put into the affair, even though I had asked them not to make a fuss. It was held in our training room and the theme was Independence Day (my independence from work). Plus they know I like patriotic themes. Here is just one of many pictures I have of the affair and a coworker took a bunch of pictures and his wife set them to music on a DVD for us. Nice memories.


Then that next Thursday was my very last day at work. In the morning I attended a class as a student. A co-worker put together a new training and it was based on generational differences on views of human sexuality. I was the token old person represented, oh, I represented the "mature" generation - my desk sign said so. Then I spent the afternoon doing the final sorting of papers and cleaning things out and packing up stuff to keep.

That night was the next huge thing that happened in August. Our one 12-year-old grandson, Jimmy (um, "James") has some major problems and as a result had a very difficult year last year in school because we all felt the school officials did not deal with him properly. Cheri, his mom, tried to get him transferred to a different school within his district (one that was actually closer to their home). The new school accepted him, but the principal of his former school refused to release him. She appealed the decision. That Thursday the appeal was turned down because that principal still refused to release him. Cheri got upset and withdrew him from school. Earlier in the year we had discussed him coming to live with us and going to Round Rock schools, but when we were told she would have to give us legal custody, we didn't pursue it anymore. Well, now we had to pursue it. That next day was the last day to register before the start of school on Monday. And it had to be before 11 a.m. We spent Friday scrambling to get him registered, filling out papers and getting legal paperwork notarized. Somehow we got it done at 10:55 a.m. We are his guardians for school. Jimmy lives with us from Sunday afternoon until he gets out on Friday then he goes to his house for the weekend. He has also signed up for football. He made it through the first week of seventh grade without any trouble, including football practice. Three weeks ago, in addition to seeing his psychiatrist each month, he began seeing a Christian counselor once a week. He is very motivated right now to get his emotions under control. I think he is on too much medication (9 pills a day), but it is better than when he is not on them. He has seemed much happier so far and is doing very well. Here is a picture just before leaving for his first day of school. We had prayer just before he went out the door.

So, as you can see, I have not just been lying around. Oh, I am doing the cooking, cleaning and laundry too. I may have to find a job so I can relax, HA. Coming up next in two weeks are blood tests, another CT scan and then the week after an appointment with my oncologist. I don't think there will be too much change from last time. In fact, it may be my imagination, but I think the lymph nodes in my neck might actually be a little smaller than they have been. At least I don't think they are growing.

Our CLL community suffered a very sad loss this past week. Kurt Grayson passed away from complications of CLL. He was a character and I considered him a friend even though I never met him in person. We corresponded a lot and he gave me lots of advice, particularly when I was first diagnosed. He was an actor who was in many, many television shows and movies in the 60's, 70's and 80's. He lived the life in Beverly Hills, but he was a warm, caring, passionate and sometimes ornery human being. He was a generous person who reached out to fellow CLLers and helped them in so many ways. He was one of the founders of http://www.cllforum.com/. He had really been struggling this past year and although he was weak and wheelchair bound, traveled to NY with his nephew to seek a final treatment. He barely got started when he ran into major complications. Another tragic loss from the "good" kind of cancer. Stinking disease!

I'll try not to be so long before the next update. I know, I know you have heard that before.

My Last Hurrah

Last week I taught my final class before retirement. In the very early 70’s, when I completed my first overseas tour of duty, the military sent me to Goodfellow AFB in San Angelo, Texas, and, after I arrived, told me I was going to be an instructor. I panicked. No way! I was extremely shy in groups. I was fine one-on-one, but gather several people together whom I didn’t know, or know well, and I didn’t say a word. When the military says you will do something, that’s it, you will do it.

They sent me to a six-week instructor school where I eventually became fairly comfortable presenting in front of my nine fellow students. In addition to numerous short talks, we had to give a 50 minute presentation every Friday. I remember walking up and down the driveway of our rented home practicing my presentations. I graduated from the school on a Friday and taught my first real class the next Monday at 6 a.m. Because we didn’t get our final diploma until we were evaluated by the instructor from our instructor school, he came to my first class. My supervisor and his supervisor also showed up. Not only that, the Standardization and Evaluation Team, consisting of four people, happened to randomly pick my classroom that day to visit and evaluate. There I was, scared to death with 36 students whom I had never met, and an entire back row of people who were there to evaluate me. Back then we wore white smocks to protect our uniform from chalk dust. I was shaking so badly that I had to have someone else button the smock for me. The lesson was a 50 minute lecture on Soviet aircraft fighter tactics. My mouth was like paste. I felt like I was shaking as if I had epilepsy. I don’t remember seeing anything but a blur in front of me. Every evaluator said I had excellent eye contact with the students. Huh? I really didn’t want to continue doing that. It was going to be a long three or four years.

However, gradually over a fairly short period of time a strange thing began to happen. I started to enjoy it. I really liked it when I saw the light of understanding coming on in the eyes of my students. I was helping them learn and I was making a difference. Wow! Our school at Goodfellow AFB had classes going 24 hours a day and we rotated our shifts so everyone had to work days, evenings and the midnight shift at some point. Now, to keep student’s attention at two or three o’clock in the morning takes some work and you learn quickly how to be upbeat and creative.

When I first joined the Air Force, it was because the draft was breathing down my neck and I really didn’t want to be in the Army sloshing around the jungles of Viet Nam. My idea was to go in, do my four years and try to get out in one piece. But now, here I was enjoying my job -- not only overseas working as a Russian linguist, but now teaching others how to do the job. I also realized it was an important mission and I really was serving my country as I knew the Soviet Union at that time was a much larger threat to our security than was Viet Nam. Because of that and some other things going on within the family, I ended up reenlisting and spent a total of 24 years in the service. I was stationed at Goodfellow a total of four times and I retired as a Chief Master Sergeant (E9) and my last assignment was at Goodfellow AFB as the Superintendent of the East European Linguist Training Division. I had trainers from all four branches of the service under me with over 300 students in class at any given time.

From the early 70’s on I was involved in training in some capacity for all but a one year period and even then, I still taught Sunday School classes to adults (but that is quite a different style from any of the other training I have done). I trained in the military; as a probation officer I was the local department’s training officer (as an additional duty); I trained probation officers within the Texas Department of Criminal Justice; and now am finishing up as a trainer with the Texas Department of State Health Services training risk reduction specialists and other staff within community-based organizations and county health departments who work in the area of HIV/AIDS, Hepatitis, and STDs.

And so, 36 years of being a paid trainer came to an end this past week with my last class. I was really hoping it would be a good class to finish with. I have only had two “classes from Hell” – one when I taught probation officers and one when I was teaching with the Health Department. Both were supervisor courses. But each class has its own personality and some are better than others. My next to last class in June was pretty flat. It was a counseling course and they were just a very quiet group and the energy level was low. The folks were fine individually, but they just didn’t want to participate in discussion during class. It seemed like a long week. I figured it was God just telling me it was OK to leave and I wouldn’t miss it very much.

I literally prayed that this last class would be a good, positive experience to finish my career. It didn’t start well. The hotel was one of the poorer ones I have stayed in for business. Very small, old and not kept up well. The automated telephone wake-up call came over an hour early so I relied on the clock-radio alarm. Somehow the radio station from the night before disappeared and it wasn’t on a station so I overslept. I wasn’t late, but it was still a very rushed morning trying to prepare. I said, “OK Lord, I get the message that it is time to retire, but please help the class to be a good one.”

I put a lot of effort into that first day to keep the energy level high and they responded fantastically. The class was wonderful!!! I could not have asked for a better group of people. The participants were engaged, talkative, funny, and supportive. They put full effort into the learning experience. At the end of the course they each give a ten minute presentation and they did a wonderful job. Sadly, one fellow was not able to complete the class as his father was taken to the hospital the last morning and he left to be with him. My back was hurting quite a bit during class and I tried sitting down some (the back doctor has told me not to be on my feet for more than ten minutes at a time), but I just couldn’t stay seated. First, that always seems unnatural to me and second I could feel the energy level start to slip and I didn’t want that to happen. I figured I would pay for it this weekend. But I have been fine! I am usually running on adrenaline in the classroom and then when I get back to my room in the evening, I collapse. This time was no exception. However, that sure beats collapsing in the classroom. It is never good when the instructor starts snoring in class.

The course I was training was Presentation and Facilitation Skills. One of our other instructors, Mary McIntosh, went with me to learn the course. It is one I had written several years ago, but only I have ever trained it. How appropriate to finish my career helping others to better talk to groups and present material to classes. I know I will miss it but I also know I am OK with my decision and it is the right one. I am just so grateful to God and to each member of the class that this last time was a positive experience.

Now, I have to go into the office this next week and start sorting papers and cleaning off my desk and cubicle shelves. Anyone have a shovel I can borrow?

One Year Anniversary Since Chemo Therapy

I guess I could toast my anniversary, but I don't drink and besides, that is rather a strange anniversary, but certainly one worth celebrating.

I went to the oncologist Monday but I have been waiting to post because I thought I would have some other blood test results back. However, they aren’t back yet so I will post this as I had promised a couple of folks I would get a post here by today. My blood tests this time were decidedly mixed results. He didn’t test the IGg level this time, so I don’t know what that is. My white blood count and my red blood count were both in the normal range for the first time since my last round of chemo, one year ago today! I am not anemic.

However, my absolute lymphocyte count continues to slowly climb in the area above the normal range (lymphocytosis), my platelets continue to decline (thrombocytopenia) and dropped to 90 (90,000/mm3) and my lymph nodes continue to slowly increase everywhere (lymphadenopathy). So, this technically puts me into Rai Stage IV of the four stages of the disease or stage C of the Binet system that has stages A, B, C. But this only sounds worse than it is. As they say, “Been there done that.”

“Rai: Stage IV CLL is characterized by absolute lymphocytosis and thrombocytopenia (<100,000/mm3)>

Binet: Clinical stage C CLL is characterized by anemia and/or thrombocytopenia regardless of the number of areas of lymphoid enlargement (Rai stages III and IV).”

Again, they don’t treat numbers, only symptoms. My disease primarily presents as the lymphoma portion so my blood tests don’t usually look too bad. Even before treatment, my white count and lymphocyte count never did get too terribly high. To show you that my doctor isn’t all that concerned, he is skipping my August appointment and I don’t go back until September. If my platelet count gets to about 50 he will order another bone marrow biopsy to see what is going on in there.

I did start the testosterone replacement therapy. I am using the gel that I rub into my skin once a day. However, I am starting at a very low dose. At the end of the first week I thought I saw a very big difference because I actually had energy over the weekend even though it had been a week I was out of town. I was thrilled! But, it didn’t last long. Cheryl thinks my energy level is better than it had been and I guess it is, but I don’t feel as energetic as I did that first weekend. I still nap in the evening and during the day on weekends. Someone asked about sleep apnea, but I don’t see any signs of that. I sleep wonderfully during the night, rarely snore, and rarely wake up at all until morning. I don’t even turn over very much and the covers are rarely disturbed very much.

Normal free testosterone level is 50 – 250 pg/ml and mine was 21. I am on a very, very low dose of the gel, in fact only one quarter of the dosage listed on the package. My doctor didn't want to increase it yet until they checked my level now. That is the test that isn’t back. The therapy can raise blood sugar (I have noticed that a little) and there is some indication that it can have negative effects in the area of prostate cancer. There is controversy that it actually causes it, but there is little doubt that if you have prostate cancer the therapy will accelerate the disease. Of course having CLL/SLL puts you at risk for other cancers anyway, so it is walking a tight rope.

I now have another ear infection. All last month my right ear would start to ache and then just as I was about to decide to go to the doctor, it would stop. This happened three or four times. Monday afternoon, after my oncology appointment it really started to hurt and it hadn’t done so in over a week. So I made an appointment with my primary care doctor. I now have some antibiotic drops to use for ten days. Umm, yes, I know my oncology doctor said I would do the IGg infusions if I had another infection. I guess I will let him know in September. HA!

Only two more full weeks at work! Technically I don’t retire until August 31st, but I only have to work one day in August as I still have enough annual leave left to take off the whole month. When I was first diagnosed, I was so fortunate that I had so much leave in the bank. I had rarely missed a day ill in the years I worked for the state, so I had over 700 hours of sick time saved up. I also always kept the maximum number of carry over annual leave days saved. I did this just because of my age I thought if I ever had a heart attack or some other major illness, I would need the time. I am thankful I did this. Even with all of the doctor’s appointments, chemo treatments and going home early because of not feeling well, it wasn’t until this February that I exhausted all my sick leave (I still get 8 hours each month). However, I have 196 hours of vacation time still left. Hurray. I only have one more class to teach and that is next week. I will be in Fort Worth and it is a course I wrote. This will be very strange because I have been teaching since 1971 when they made me an instructor in the Air Force. I am looking forward to it.

On another note, please keep David E. and his wife Mary in your prayers. He is my “cyber friend” that I have often written about. His advanced prostate cancer, which had spread to his bones, is on the march again and it looks like he may be facing chemo treatments now. He has been trying to avoid that as long as possible by using other treatments that have helped but now have seemingly stopped working, or at least not working as well. He will have to make a decision at his next appointment in August. Starting chemo is a scary time for anyone!

As always, I appreciate your prayers, your concern, your comments here and the many I receive by email. Knowing people care is more important than I ever realized before. Thank you.

Dr. Appointment & Some Silliness

Well, I waited to post the results of this month’s doctor visit until I had all the reports back. Actually it is all pretty good news. There was hardly any change at all in the regular blood tests. Platelet level slipped a little to 103, but surprisingly, the red cell count came up right next to normal. I am not considered anemic. Both Cheryl and I thought for sure that had plunged, just because of how extraordinarily tired I have been. My IGG actually went up a little, although it is still low. My onc decided to hold off again on IVIG because I have not had an infection and he is having a little trouble getting it. (That is the $10,000 a month treatment.) What I really wanted to know was the cause of my fatigue. As most of you know, I have been struggling with that since almost the beginning, but it has been getting worse again. He asked us a bunch of questions. My wife told him I will sometimes fall asleep in the middle of a conversation. I didn’t know I did thzzzzzzzzzzzzzzzzzzzz

Oh, sorry, anyway, he said it could just be the underlying CLL, or it might even be a combination of all the different medications I take, but he also wanted to check my testosterone levels. He told us about one of his patients who had low levels and he was placed on the testosterone patch and he was like a new person. So, at my Monday appointment, I had more blood drawn. Of course, I then did some research on the Web. Although I did find fatigue associated with low levels, it was barely mentioned in most places I looked, but a LOT of other things going on with me did fit. Apparently low levels can be as a result of chemotherapy, and, it can result in loss of strength and muscle tone (yep and yep) and lead to osteoporosis – I already have that. Well, as I was beginning to suspect, my levels are low. I had a message on my phone from the doctor’s office. The message said I should contact my primary care doctor to get on the testosterone replacement patch. Wow, I pray this is an answer. Now, do you think I might start growing hair on the top of my head? Watch, instead I will have to braid long nose and ear hairs. It will start growing everywhere except my head. Ooo, yuck, sorry. Of course, we also aren’t planning to do chemo any time soon. Remember, when I finished up eight rounds last summer, my onc said we were stopping for three months, but we might get six months out of it. Hmm, I am now in my 11th month! I guess God’s timetable is a little different from my oncologist’s timetable.

I leave Sunday afternoon to go to Dallas to conduct a five day training. This will be the last time I conduct this course and I only have one more class to teach before I retire. Strange feeling after 37 years of working as a trainer. Now, if I can just keep from falling asleep when I am in front of the class. Snoring on the part of the instructor always detracts from the presentation.

Now for the “silly break.” I am in charge of the coffee fund for two work sections at the state health department. Yesterday one of the coffee machines died. Here is the announcement I wrote for our coffee fund members:

IN MEMORIUM

February 14, 2007 – June 13, 2007

Sadly, at 8:17 on June 13, 2007, Mr. Black A. Decker expired. Foul play, though initially suspected, was quickly ruled out. Doctors say the cause of death was overwork, an oddity at his place of employment. Although surrounded by health care workers, all efforts to revive him were for naught. Mr. Decker, placed into service on February 14, 2007 and recruited from Wal-Mart, was extremely young for his breed, having lived and served only three months, 29 days. Normal life expectancy for one in his circumstances averages over one year. Autopsy results revealed a lot of rough living in his short life. He was scarred, pitted and unkempt. His internal plumbing showed evidence of hard living and hard water. Although he was listed as an organ donor, only his pot was saved. Viewing was held in room 1004 on June 13, 2007, during normal work hours. He was placed in a custom made box from the Original Manufacturer and placed in a temporary holding can.

Mourning turned to anger when word got out that his demise resulted in July NOT being a free month for fund participants. All respect was lost and Mr. Decker was relegated to the trash heap at the end of the day. An anonymous source remarked, “So much for loyalty and compassion!”

Mr. Decker is survived by his older friend and work companion, Mr. Proctor Silex, who works in the decaf department. Black’s position was quickly filled by a distant cousin of Mr. Silex, also named Proctor Silex, who ironically is black. He was quickly recruited from the local grocery store. The new Mr. Silex is more beautiful than his older cousin and he is equipped with more, though rarely used, options. Mr. Silex’s current caretaker, Mr. J. Wagner who is himself soon retiring (but not expiring) from state service, said, “Long live Proctor. My wish is that he is treated with the dignity and respect he deserves. My dream is that if I should return for a visit even two years from now that I would find Proctor healthy and continuing to dispense liquid caffeine for future state workers. Lord knows they need something to keep them awake and working.” Mr. Wagner arranged a three gun salute as a final tribute to Mr. Decker. “These guys were happy to do it,” said Wagner. “Of course it didn’t hurt that I was able to convince them it was also duck hunting season.”