What Joy

BIRTH

A little word meaning the beginning of life, but packed with so much more meaning than that. A couple of days ago, I wrote about death, the end of life, so I wanted to talk about a more pleasant subject on the opposite end of the spectrum.

On June 2nd, my newest grandson was born. Gavin Elliott was a couple of weeks early, but weighed in at 10 pounds 3 ounces and was 22 inches long. What joy a baby brings. The innocence, the promise of great things, a new beginning, just that soft skin and "baby smell" (no, I'm not talking diapers here!). It is even more joy for grandparents because there are no 3 a.m. feedings! He pretty much is skipping those now, anyway.

I don't think I am prejudice, but he is the cutest thing I have seen since my other grand kids were born many years ago - they are now 13, 13, and 10. And his Mom, Grandma and big brother agree with me.

A new birth can help take the sting away from death that sometimes surrounds us. This was clearly illustrated to me 35 years ago. My grandmother died the night before my youngest daughter was born. I was close to "Nanny" (or "Nan" as I called her as I got older) because we lived right next door to her until I was in the third grade. Then we moved less than 20 miles away so I saw her at least every week. As a teen with a driver's license, I would go to see her - a great excuse to drive the car, too. But then I went into the Air Force and was either mostly in Germany or Texas so we were a long way away and I only saw her about once a year or so, but we kept in touch through mail and phone. It hurt that I would not be able to go to her services, but the next day when Cindy was born, the hurt eased.

With all the passing of folks on my patient support site, we have also had what I perceive as an increase in posting of pictures of children and grandchildren, including many new babies, on the cllcfriends site. It helps to balance the hurt and pain and suffering of members. Precious new lives.

Cindy had a very rough time with this pregnancy. She had "morning sickness" throughout the entire pregnancy and not just in the morning. She is the one who previously had two heart surgeries and her heart started messing with her again about half way through. She went into premature labor about two or three months early, but they were able to stop it. The last two weeks before delivery, she had constant contractions that kept going between two minutes and five minutes apart with very little down time. She was hospitalized several times during the pregnancy and had to go to labor and delivery several times in the last couple of weeks only to be sent back home after a couple of hours. The last night she spent the night with us and at 6:30 a.m. I drove her to the hospital after her water broke. They couldn't send her home then. Corbin, her husband, is a driller in the oil fields and he was well over six hours away. He had to drive back from West Texas pulling his huge mobile home trailer behind him. The nurses didn't think he would make it in time, but he arrived a little less than an hour before Gavin was born. Good thing or I might have slapped him around! :)

All those troubles were forgotten once the precious gift from God arrived.
Gavin is advancing at a remarkable rate. At two weeks old he began turning over front to back. He smiles regularly now and it is not just when he has gas, because it is in response to stimuli. He is cutting two bottom teeth. He is only six weeks old, but I think he is starting kindergarten next week.
Karen, a lady who's blog I follow and who is listed over to the right as The Adventures of Cancer Girl, calls her little girl WCK (world's cutest kid). Sorry, Karen, but Gavin has stolen that title.

(By the way, if you have never been to Karen's site, it is well worth the read. She has one of the greatest senses of humor and the most wonderful writing style. When I am feeling down, I always get a smile reading her blog. To give you an idea, a recent entry title is, "Moose drool, wolf pups, bear poop." But if you go there, don't read just that one. One other note before I wrap this up. David E., the fellow with advanced prostate cancer whom I have referenced several times, is now undergoing chemotherapy as his other treatments stopped working. Please keep David and his family in your prayers.)

Well, what kind of grandfather would I be without pictures? Most of these were taken and sent via phone so they aren't the sharpest quality, but you can see how cute he is. So, enjoy!

A couple of hours old:

One day old:

Let me think about it, yep, I'm cute!

I'm in charge and don't forget it:

Brotherly love! Jonathan and Gavin sleeping. (Jonathan is almost 14)

Mother and son bonding:

Taken today

In Our Hearts Forever

Death
A little word meaning the end of life, but packed with so much more meaning than that. Around that word is packed so much heartache and suffering and, paradoxically, many times celebration.

This year death came to many people I care about and has drastically effected the lives of many others I also care about. With the danger of leaving someone out, I would like to mention a few.

Wanda Daniel was a true friend to our family. For over 40 years she ran a day care center at our former church in San Angelo, Texas. The former pastor of the church, Earl Dunn (another great man of God) had a vision and saw the need for a day care center in that part of town and he went to Wanda to ask her to be the first director. Her daughter, LeeAnn, was one of the first enrolled and graduated from the very first kindergarten class. LeeAnn later became a teacher and then assistant director working beside her mom. Technically she was there forty years too, if you count coming in after school!

Forty years is a long time, but the number of people impacted by Wanda's golden heart is immeasurable. My two girls were enrolled there. The same week my youngest was born, my wife's father - who was dying from cancer - and her youngest brother came to live with us. Our little family went from three to six in one week. By the time Cindy was a month old, it became painfully apparent that Cheryl could no longer be a stay at home mom. I was a young man in the Air Force and that was back in the day before major pay raises brought us even close to the poverty level. San Angelo was a military town and Wanda knew our plight. She didn't charge us initially! Then, when we insisted, she put us on a reduced rate. Finally some time later, after much arguing we got her to agree to the full price. My grandchildren also attended her daycare and when the girls both became single moms and enrolled in college, Wanda put them on a reduced rate too! She did not see it as a job, but as a mission opportunity. The daycare was not a profit making machine! If there was an opening, and the waiting list was always very long, Wanda would not turn you away. The state brought many people into the facility to show prospective new owners the proper way to run a daycare. Although it was licensed by the state, Wanda always resisted accepting government funds of any kind along with all the strings attached.

Unfortunately, as often happens even among Christians who are not acting very Christian-like, a group within the church decided the daycare needed to become profit making to help support the church which was dwindling in member and funds. Wanda strongly resisted as she knew it was a long-running mission and she felt God still had a need for that type of mission work there. Unfortunately that group, with the support of the new pastor, prevailed and Wanda and LeeAnn were fired late last year! Wanda's golden heart was shattered, literally. Her heart was hurting, but she thought it was emotional pain and did not go to the doctor. In February she finally went to the doctor and major damage was discovered. Over the course of several months she had numerous surgeries from which she never fully recovered. Finally she was placed on hospice and then the Lord called her home on June 14, 2008. That golden heart has now been pieced back together and made whole, but she left her friends' and family's hearts hurting.

Ken England, 99, was a wonderful man who attended my Sunday School class with his son Joe and daughter-in-law, Claretta. He died May 22. He served as pastor, associate pastor or interim pastor to churches in Pond Springs, San Gabriel, Jonestown and Round Rock. He also was associational missionary for Atascosa Association and preached revivals throughout Texas, Louisiana and Mississippi. Our church recently named Ken pastor emeritus of First Baptist Church, Round Rock. Ken was a published author and had also written a book of poetry which he honored me by giving me a copy. He lived a full life and was very active until just very recently. His service was a true celebration.

Another man in my class, Cliff Hobbs, just lost his son, David, to a sudden and unexpected heart attack just a couple of weeks ago. He was only 48.

P.C. Vencat and his wife, Chaya, established a website for CLL/SLL patients which evolved into THE most valuable resource out there for those of us struggling with this leukemia and/or lymphoma. Chaya did most of the writing, but P.C. was the patient, webmaster, editor and publisher of the site. I have a link over to the right (http://www.clltopics.org/) and I have referred many, many newly diagnosed folks there. It was one of the first places I found when I was diagnosed and Chaya is able to take a very complicated subject and make it understandable. The section for the newly diagnosed is a life saver. These folks knew the disease. After much study and research P.C. took a chance on the only thing that offers a possible cure and that is a stem cell transplant. Everything was right. He was strong and relatively healthy, they chose the experts to perform the procedure and they had lots of emotional support behind them. Even with all of that, P.C. passed away on June 23rd from complications after an allogenic cord blood stem cell transplant. You can read the details of his transplant journey at Harvey's Journal. Harvey was the "fictionalized" character Chaya wrote about, but Harvey was really P.C. Hundreds and hundreds of lives have been enriched because of this couple.

One of the strongest caretakers I know, out of many strong caretakers, lost her husband to CLL a short time ago. Cindy Stanley's husband Tony, age 52, lost his long running battle on April 28, 2008. He endured so many different treatments, trials (and torture) trying to keep this dragon at bay. He fought a valiant battle and was a true CLL warrior. Cindy was with him every step of the way and kept us informed via http://www.cllcfriends.com/ and http://www.cllforum.com/. She posted less than an hour after he died to tell us. One of the last posts before that included this heartbreaking sentence: The nurse just informed me that they have called all the hospitals in the area and no platelets at any of them. Tony's platelet count at that time was 6 (the normal minimum is 150) and he was bleeding. I don't know if they ever found any at that time, but it does remind me to remind all of you, if you are able, please donate blood and/or platelets whenever you can. You can literally save a life.

Some others who have died from CLL in 2008 with whom I had a connection:

AndyLynn, age 30 and she left behind a husband and a toddler

Cathy's husband, Philip

Val Bollock's husband John who had not been diagnosed very long at all and he left a young son, Will.

Shirley Smythe, from Ireland lost her Mom

Elizabeth's Dad

Lise Rasmussen-Wright who was a long-time battler of this disease and a friend to many.

Bonnie, who has CLL, lost her son, Jordan McKay Washburn, May 10th to a rare blood disease, metastatic alveolar rhabdomyosarcoma, which mimics acute leukemia. It is considered a pediatric cancer but he became ill late last year. He had just turned 26.

Each of these folks was loved. Each made a difference. Each one will be missed. Each will be remembered.

HELLO! ANYBODY HOME????

Come out, come out, wherever you are!

What happened to spring?Let me get cleaned up and then we can visit.Sorry, I really didn't mean to abandon my blog.

Sometimes you just need a break from this cancer thing and sometimes that break just goes on and on. Actually, I have multiple reasons for not posting for so long. Probably the main reason was that for much of the first part of the time I was gone I was not in a very good mood and I didn't want to come here and just whine. I was a real bear! I couldn't figure out why I felt that way, but I was angry a lot and not real pleasant to be around and I did not like it. Finally, after prayer and thinking about it for awhile, it dawned on me that the testosterone replacement is really a steroid and steroids and I don't play well together. So, on my own, I stopped taking my daily dose. After a few weeks I was feeling pretty much back to normal. Then I told Cheryl what I had done. She said she wondered what happened because she noticed a definite difference in my mood and attitude. When I told my doctor what I did, he said, "yep, that will do it." So, I would rather be more tired than more angry. I think it is a good trade.

At some point I signed on to one of my patient support sites for the first time in weeks and the first thing I read was a post by a young lady from Ireland whose mother just died from CLL. I closed out without even sending condolences which is not like me.

About the time I was going to get back to joining my on line friends and reading blogs, etc., my computer died. In fact, within about a week, my cell phone died, my printer died, my laptop died and my desktop finally about totally gave up the bits and bites. I'm just glad I don't have a pacemaker. First I got a new phone, then a new multifunction printer, then finally got my laptop repaired for a couple of hundred dollars and a wait for a part to come in. My desktop computer is still taking up space. But it gives Cheryl something to get on me about. Ha! Sorry, dear!

It's funny, but I really was feeling quite guilty for not posting and yet I still kept putting it off. I would sign on to write, and end up playing Bejeweled 2 Deluxe! I am addicted to it. But all of this reminded me of my procrastination days in school. I always put off assignments until the last minute. I thought I would join procrastinators anonymous, but I just haven't gotten around to it yet.

Slowly I have been getting back and trying to catch up. Unfortunately, while I was away, some fine folks lost their battle to this stinking disease. I will write about them in a day or two. I also lost friends to non-cancer reasons. Actually I have lots of news I want to write about but not now.

In health news, my disease is remaining stable. It is only progressing slowly and this month the blood work actually looked better than last month! My platelets have been over 100 for several months now. All I am doing is IVIg infusions and I am now able to do them only every other month -- YEA! They really aren't bad, but they do take six to seven hours and a lovely little bottle of STEROIDS come with them. So that night I stay up and then sometimes have breakfast with Cheryl before she goes to work. They also give me headaches for about two weeks, but I think that part is even getting better. The important part is, it works! Last year I had nine infections in ten months, including pneumonia twice. Since starting this last November, I have had one slight cold and that is all.

Thanks for checking in with me.

Stable -- It's Not Just For Horses

I went to my monthly oncology appointment and got the results of a CT scan from last week. The bottom line, my nodes have remained stable! That is pretty amazing because the last time they had doubled. Yes, they are still wide spread everywhere, but mostly have not grown at all, and one was reported to have shrunk a little. It is so weird because I felt like my neck nodes had gotten bigger just since the scan, but my doc rightly pointed out that they will have a tendency to wax and wane. My blood work also remained stable since last month. The platelets dropped a little, but not much and are still just above 100.

The CT scan did say that the discs in my lower spine had deteriorated more since last time, but I knew that. I am getting up out of my chair and walking like an old man. And I ain’t old…unless you ask my grandchildren…and my kids…and my, oh, never mind.

I forgot to report other great news from last month. Although I lost another 1/4 inch in height (that's over two inches since I got out of the Air Force), my osteoporosis actually improved! It is still in the severe danger of fracture range, but barely. The doctor was very pleased and so am I. The weekly Fosamax pill is doing what it should.

Cindy's husband also had pretty good test results. The doctor saw no tumors and only found inflammation. He gave him antibiotics for a possible infection and if the bleeding has not stopped by next week, he will be doing other testing. Cindy was very disappointed that he didn't do all the tests at one time like she thought he would. Pray the antibiotics take care of this and the scare is over.

- My sister-in-law's sister's husband died of cancer Monday. He was only diagnosed in late November and it spread very rapidly.
- David E's prostate cancer is on the march and he will be trying a different treatment (see the link to his blog on the right). Pray for him, too.
- Karen, (The Adventure's of Cancer Girl link on the right) who has had multiple myeloma since 2005, has been undergoing treatment now for some time. She has gotten results, but not all that she deserves. She is the mother of a toddler (WCK - world's cutest kid) and her blog is fantastic. She has been able to keep a fantastic sense of humor. Obviously she could use some prayer also.

Yes, cancer still sucks!

(Wow, four entries in a week - even though three were all on the same day, I did done gooder, huh?)

Health Update

I have continued to get the IVIg infusions and they really have worked as I still have not had any new infections. I still struggle with headaches for a couple of weeks after, but I don't think it was as bad this time. The main thing I don't like is that it takes all day.

The great news is that my IgG levels have really climbed. In fact, I may not need this next treatment and we made the appointment for six weeks out instead of four. The last blood test showed the levels all the way into the normal range (more than double what the level had been). I really thought we would skip this last round. However, my doctor thought the test was done too close to my last infusion and that it was just a spike and not an accurate reading. This time I will have the test two days before the scheduled infusion and then the results will be back by the morning of my scheduled infusion. If the level is still up, we will skip it and just monitor my levels. My doctor at MD Anderson said once they reached 700 to spread the infusions out to just be able to maintain that level. My other blood tests looked pretty darn good. My platelets have stayed above 100 for two months now. I did read somewhere that IVIg can also raise platelet levels. However, most of my tumor load is not in the blood, but in my lymph system and bone marrow. My nodes are continuing to grow and he ordered a CT scan to check on them. I have such mixed feelings over getting this test because of the radiation and there is a lot of controversy, even among doctors, over the advisability of getting them for this disease. I will get the results at my monthly appointment on Monday. I would guess that either he or my doctor at MD Anderson may want another bone marrow biopsy soon. Almost a year and a half ago my marrow was 50% infiltrated with the cancer cells (not sure I stated that properly).

My MD Anderson follow-up appointment was changed to the end of this month. Dr. Weirda will be out of town the day it was scheduled, so they had to reschedule. That's OK.

I seem to be pretty much holding my own. The only real difference I notice is the increase in my lymph nodes and I am MUCH more stiff and sore in my joints but I don't think that is related to the leukemia/lymphoma. Hard to say for sure. When I get up out of my chair, it is a struggle and I can barely move until after I have taken 10 or 15 steps. I know sometimes when I have gone shopping, I feel like I can barely make it around the store. Oh well, at least I can go to the store.

Recently we lost several members of our on-line support groups to this stinking disease. One of those was a young mother of a toddler; another was a father of a nine year old boy. Several others who's death was no less tragic and too soon. Also, the gentleman that was a former member of my church and with whom Cheryl and I visited at MD Anderson in November died. He never recovered from his transplant he had last May. He never did get home. One of the founders of the CLL Christian Friends web site was just diagnosed with lung cancer in addition to his relapsed CLL. His wife also has a different cancer that has come back. Another member about to have a stem cell transplant is putting that on hold because tumors from another type of cancer were discovered and they have to deal with that first. A wonderful lady who is a member of my Sunday School class had a mastectomy and is now undergoing chemotherapy. (She is handling it beautifully so far.)

Cancer SUCKS.

What Happened to January?

Not sure how it can be February already. It sure seems like it was just Christmas. I really have been busy -- I think. We had a great Christmas with our girls and grandkids. Then we had our usual wild New Year's Eve celebration. Cheryl went to bed about 9 p.m. and I watched TV. At 11 p.m. I whispered "whoo-hoo" when the ball in Time Square lit up 2008, then said "whoo-hoo" again when it reached midnight here (I think I was still awake). That has been our tradition for about 30 years.

The only difference this year was that my killer dog, which I adopted last August, spent the night shivering in my arms -- terrified by all the fireworks being shot off in the neighborhood.

In fact, I had a difficult time getting him out in the yard even the next day. Unfortunately the carpet paid the price and Cheryl threatened him with returning to the pound. I can't wait for the 4th of July celebrations. Just yesterday we had a new back door installed that has a doggy door so he can come in and go out at will. The old door was almost all glass, but the bottom core was rotting from where it used to get wet before we had the patio covered. It needed to be replaced so we did the doggy door at the same time. It was funny trying to teach him to use it. I got stuck part way in it trying to show him how. (Not really)

Of course, now that he can come and go as he pleases, I will get even less exercise getting up to let him out and then getting up to let him back in. We will still have to go for our walks down the street which he gets really excited about!

On January 4th, Cheryl's sister, Diane, and my Mom flew down from upstate NY. Diane was divorced this past year and really needed the break. We were both very glad to have her here, but unfortunately she had to go back on the 14th to go back to work. She always helps out so much when she is here. Last visit she helped paint two rooms plus some other projects. This time she helped us get all the Christmas decorations put away (we have so much we have a separate storage shed full, just for Christmas decorations), washed some windows, trimmed some bushes and still had some time to do some sun tanning on the nice days. I need to have her come down at least once a month.

Mom will be staying with us for a few months. She is now 93 and much weaker than when she was here two years ago. It is a very good thing I am not working because I would not want to leave her very long in the house alone. She still gets around the house with a walker, but barely. One morning, Jimmy forgot his morning medication and I had to take it to him at school. Mom had not been getting up until after 10 a.m., so I decided to take the time to stop at the grocery store as long as I was out. I got back to the house at 9:20 and Mom was stuck in the bathroom on a stool we had put in there for her to sit on in front of the sink and mirror. She had gotten ill in the night and had gone in to get cleaned up. She had a pain in her left side and couldn't get up because it hurt too much when she tried. She had been calling for me and she didn't know I was not home. I felt horrible. I won't do that again! I ended up buying a lift chair from SAMS Club because she couldn't get up off any of our chairs. With my bad back, I was afraid I would really hurt it if I had to help her too much. Now we have pretty much settled into a routine. Her mind really is very sharp and it it wasn't for her horrible arthritis and bad knees, she would be in fantastic shape.

Cindy has been traveling quite a bit so I have also been watching Jonathan and taking care of their dogs. She is still struggling with morning sickness -- morning, afternoon and night. Her allergies have also been terrible. "Cedar Fever" is really bad here for folks with allergies from about Christmas until mid February. She is now up in Amarillo with her husband as he is going to have a medical procedure on Monday that requires anesthesia. He has been having difficulties for a couple of months now and, like a typical guy, had put off going to the doctor. Now it is really bad and they are going inside to look as the doctor suspects a tumor. Of course they are both very anxious over it. She flew up there last week to go with him to the specialist. The doctor wanted to do the procedure the next day, but he is a driller in the oil fields and he said he HAD to be to work that night. He needed time to get a driller to cover for him for 24 hours. They should know something Monday afternoon when the procedure is completed.

Wow, and I had pictured in my mind that when I retired I would be spending many days fishing.Well, since I don't get away from the house that often, perhaps I should try this type of fishing.

Well, I think that is all the news that's fit to print and some that ain't.

I Am Certified by the Federal Government

No, not certified crazy, although, over the years, many people have told me they thought I was certifiable. First, the government certified I was old as I started getting Social Security retirement benefits last September at the ripe old age of 62.

Now, today in the mail, I received a letter in the mail. I was approved for Social Security Disability on my FIRST TRY!!! I have been certified officially disabled.

(Click on these graphics to see the animation)

When I retired September 1st, I applied for disability at the same time I applied for my regular Social Security payments (I turned 62 last August). I did retire earlier than I had planned because continuing to work was just too difficult, particularly with all the travel I had to do and instructing all day in a classroom. Most of the time I felt like I was barely functioning. We figured that as long as Cheryl was working we wouldn't have any problem with me just getting the reduced rate SS retirement payments. I really wasn't going to apply for disability, but when I was talking to the guy at Social Security when I applied for the regular retirement, he said I really needed to go try for it. Everything I read, I figured it would take at least two to three appeals and then maybe even a hearing with a judge. I wasn't too worried about waiting for payments because the regular SS benefits began right away for September. I very carefully filled out all the paperwork and had a copy of every blood test, bone marrow biopsy, CT Scan, bone scan, I had gotten since the year before diagnosis when I was diagnosed with Type II diabetes. I had reports of the diabetes, osteoporosis, arthritis, deteriorating spinal discs, and of course the CLL/SLL which is the real reason I couldn't keep going. I believe they also contact all the doctors I had listed. Even with all that, I didn't hold much hope. What a pleasant surprise. I really don't know if their decision was based just on the CLL/SLL or a combination of everything.

They determined my disability date as August 23, 2007. I only worked one day in August, and that was the date. So, to get the payments, you have to be disabled five full months and then the payments start the next month and that works out to this February. The only drawback, and it is very minor, once I have been getting payments for 24 months, I will become "eligible" for Medicare. Now for many folks that is a good thing, but my military insurance is so very good right now, I don't want it, but I will have to take it and the military becomes secondary. It also means I will have to pay for Medicare part B as the military insurance requires that. So, I will have that monthly expense. However, as Cheryl pointed out, I would have had to do that starting that August when I am 65 anyway and it is only six months sooner. In the meantime I will be getting an extra $350 a month more than I am getting for regular retirement right now, which more than offsets the monthly part B cost (currently $96 a month).

Disability payments must be reviewed every so often as sometimes people improve and can go back to work. There are three categories they put people in. The lowest is people they will review every 6 to 18 months. However, I have been put in the "improvement not expected" category and I will be reviewed in five to seven years. Lord willing, I will still be here for that review!

This extra really helps because when Cheryl retires in a couple of years, we will need everything we can get. We already have told the grandkids only a couple of years left of nice Christmas gifts from us and then it is McDonald's gift certificates (if they are still $5.00 then).

Hmm, don't know why the pictures aren't animated until you click on them.

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.