Tuesday, December 27, 2005

Some Good News

I meant to add this to my last post, but forgot -- hmm, no surprise there. My neurologist's nurse called today and said they had the reports from my MRIs. The brain scan showed I do have a brain and it was normal - whew! The back scan showed bulging discs but no pinched nerves. I guess I will have to wait until my January 4th appointment to see if he has any ideas of why I am having such memory problems and why my legs are hurting and going numb at times. At least it doesn't seem like it is too serious. Frustrating, yes, but perhaps not serious.

By the way, if you are new to reading blog postings, the oldest/first ones are clear at the bottom. You can scroll down or go by clicking links over on the right hand side under "Previous Posts." The very first ones are under the "Archives" heading. Comments are welcome at any time.

I doubt I will post again until I see my blood test results on the 4th and also see the neurologist that day.

Cancer Affects All Those Around the Patient, Too!

What a terrific Christmas. How can it get any better than celebrating the greatest Gift ever given to mankind, than celebrating with your family? I guess the only thing that could have made it better would to have been able to be with Cheryl's and my extended families, most who had gathered in upstate New York.

We attended a 6 p.m. candlelight service on Christmas Eve, then we all came back to our home for pizza. Then the grandkids each opened one present. Cindy and our grandson, Jonathan, spent the night here because her husband, Corbin, was working in the oil fields and couldn't leave. Cheri and her family went to their new home. Christmas morning, after seeing what Santa left at their home, Cheri, Marc and the two kids came back here about 7 or 7:30 a.m. We opened presents for awhile and then left for church services. At the end of the service, Jimmy, the 10 year old, went forward to request membership in our church and baptism. He had made the decision to accept Christ last summer, went and talked to the pastor in his office a week or so ago, and got up the courage to go down front Sunday.

We then returned home, had a big (delayed) breakfast and then finished opening presents. Later that afternoon we had a great dinner of ham and all the trimmings.

I was given an extra special present that had great meaning for me. Cheryl and Cindy had conspired way back last January, before my diagnosis, to put together a memory book of my Air Force career. It is a beautiful scrapbook with a large Air Force Seal on the front. They asked family members to also put together memory letters to include in the book. Most letters weren't written until recently and the memories had extra special meaning. I had a beautiful letter from my wonderful wife, Cheryl, which made me teary eyed (I think they all noticed, but didn't let on -- Remember what I said on an earlier post about tears? Ha!). Also included were fantastic, wonderful, funny, sweet, sad, memory-filled letters from my brother-in-law Bill and his wife, Diane, my sister-in-law Diane, my mother, each of my brothers, both daughters and finally, the three grandkids. I wish I could duplicate each one here, because each one was so special to me and each had a special style. However, I do want to show you what the kids wrote. The boys dictated their's and they were typed exactly as they said them.

Jonathan, barely age 11, wrote:

Dear Papa,
I love you so much - like to the earth and to the sun. I remember when you first knew about your leukemia - but you probably don't remember. Ha, Ha!

I remember when we went to Las Vegas and going to NY, NY - we walked all the way down to NY, NY! (Just Jonathan and I walked along the 'strip' to go there to the kids amusement play area.) We also went to see the Grand Canyon, which was really, really fun on my birthday!

I love it that you have a good sense of humor, you make me laugh. You are a special guy because you have hair around the sides but none on top.

I remember when every Sunday when I come to your house after church you always fall asleep in your chair. I love you so much and wish you were "cancer-free!"
Jonathan (He then signed it "Jonathan Elliott" with a heart shape for the dot over the i)

Jimmy, age 10, wrote:

Dear Papa,
I like you being my papa because you are very funny. When you tease me with jokes it shows me that you love me. I like it when you take me shopping because you always buy me stuff! Ha! Ha! Ha!

Thank you for taking me to see the pastor to talk about being a Christian and getting baptized. You set me a good example of being a Christian.

Jimmy (He then signed it James Porter)

Holly, barely age 8, went into her "office" -- one of our converted walk-in closets -- only came out to ask how to spell two words, and completely printed the following all on her own. All is just as she wrote it:

To: Papa
From: Holly your grandaughter

Dear Papa,

Your a great "Sunday school teacher" and your very bright for an elderly man like you but anyway your still my same good old Papa. Back to the point I'll love you no matter what happens to you your still the nice friendly man who's my papa. You love church very much the lord jeasus Christ loves you to and so do I. You'll always exist to me. I'll cry when you get to heaven and someday I'll see you up there and I'll also see god.

Your a great grandfather and dad to my MoM and my (large heart drawn here), Aunt Cindy.
Holly Diane
Holly Berry
Holly Diane Gray
You crack me up Papa (Large "glowing" heart with an arrow through it drawn here)

WOW! Along with all the other letters, how can it get any better than that?

These just point out that diseases and troubles and problems really do affect everyone who surrounds the person going through the difficulties. Even children understand much more than we give them credit. I don't know how some people are able to go through difficulties first without a strong faith in God, and second, a loving, supporting family.

Thanks to God and thanks to God for my family!

Saturday, December 24, 2005

Merry Christmas!

Our home. (Much better in person - come visit!) I just want to wish each and every one of you a very blessed and Merry Christmas. This is my favorite time of year as we celebrate the birth of our Savior. It is a time for thankfulness, sharing, remembering and celebrating. I have been so blessed with the family I was born into and the additions we have added to that family. We have always celebrated Christmas in a big way, both in my family and in Cheryl's. The worst thing about living in Texas is that the rest of our extended families live in New York, one unit in Ohio, and Ronnie in Washington. We are not able to get together in our traditional ways of old. When I was young, we all gathered at my grandmother's home for Christmas. Then as years passed, we would gather at my oldest brother's large country home. One year, about 20 of us were snowed in at his house for several days. What fun! Really! We would also make the rounds to many of Cheryl's very large family (she had 12 brothers and sisters!).

Now we occasionally get to go home at Christmas, but it has been many years. It is too difficult for both girls, their husbands and kids to all go to NY. We could not bear to be away from them at Christmas. Now, our children and grandchildren gather at our house and new traditions are born. We still call back to NY, but it doesn't take the place of being there.

This year feels slightly different. I have become so sensitive to those that are suffering badly with various diseases and cancers and the families that suffer with them. Several members of my ACOR list service have passed away this past year. The holidays for the loved ones left behind must be so difficult. Our neighbor, two houses away, lost their 19 year old son in an automobile accident this year on July 4th. They always used to decorate their home with lights, but not this year. How many others are suffering like that? So, this year as I give my thanks to God for what he had given to me, I will also pray for those that are hurting and feeling that hurt especially strongly at this time of the year. I pray for His comfort for them.

And so, as I close to finish up the last minute Santa details, I pray that you will have a wonderful time tomorrow with those you love. If anyone may be reading this who thinks nobody cares, I do, but more importantly, God cares for and loves you more than you could ever imagine possible. As our pastor said tonight at our Christmas Eve service, "Why else would God give up his most precious Son to send him as a gift to us to live, suffer and die for us, knowing that many would reject that gift and not care? He did it out of love for you and for me!"

Merry CHRISTmas and God Bless you!

Thursday, December 22, 2005

December 23, 1967, and December 2005. (Yes they are both Cheryl and me!)

38 Years and Counting

Friday, December 23, is Cheryl's and my 38th Wedding Anniversary. We had a beautiful wedding in a little Baptist church in Norwich, New York, in 1967. Being Christmas time, we saved lots of money and had the church decorated in pine branches and red bows. The bridesmaids all wore red velvet dresses and carried white muffs decorated with red ribbon and mistletoe instead of flower bouquets. Of course the bride was beautiful, dressed in white, with a bouquet of flowers. The groom looked OK too in his tux. Many brothers and sisters were in the wedding party. We had over 100 guests and had a very nice reception but only served punch, cookies, homemade finger sandwiches and, of course, cake. We were paying most of this ourselves and I was in the Air Force for less than a year and only making $100 a month.

We only went to a nearby town that night and had a wonderful steak dinner and spent the night. The next day we returned to my parents' home and stayed there to celebrate Christmas. The day after Christmas, we took off for New York City. We both grew up in small towns about 200 miles from the city and I went down there quite often, loved it, and knew the city pretty well. Cheryl had never been, so we decided to go there for our honeymoon and I would show her the town. Hmmm, she hated NYC! Being a small town girl, she didn't like the crowds and the noise and felt quite nervous. At the top of the Empire State Building, she discovered her fear of heights. Back then, many TV shows were filmed there and I used to go to quite a few -- all free. I didn't count on every kid in the USA and most of the free world being off for the holidays and also trying to get into the shows with their parents. We did a lot of standing in line and never got in to any of them. We did take the tour of the NBC studios, though. We had made reservations for five days, but decided to head back on the third day. As soon as we left the city, it started to snow. Hard. It snowed and snowed and snowed. Being the brilliant young man I was, I decided to take a shortcut up over the hills to get home sooner. Good news, no traffic. Bad news, no other tire tracks to follow. Where was the road? I just kept aiming for the empty spots in the snow. Soon the snow was bumper deep. We kept going. Somehow we made it home. If my kids today did something that foolish, I would be very upset with them. Later in the spring, we took a trip to the Adirondack lake country in upstate NY. (I was stationed at Syracuse University attending intensive Russian language training for the Air Force.) Cheryl loved it there -- beautiful forests and fantastic lakes and, most importantly, not many people and no blaring taxi horns. Oh, I liked it there too.

Cheryl spent 23 years supporting me in my Air Force career. Moving many, many times. She became an expert packer. Our first daughter, Cheri, was born in Nuremberg, Germany, and our second daughter, Cindy, was born in San Angelo, Texas. We adopted Cheryl's youngest brother, Ronnie, when he was 14, while I was stationed in San Angelo, Texas (one of the several times I was stationed there). Cheryl also became an expert in convincing our kids that it would be an adventure to go to a new place, even if it meant leaving all their friends behind once again.

God could not have given me a better help mate. She is a fantastic mother and grandmother who adores her family and will do anything for them. She often goes far above and beyond the call of duty. That's what love does. Family is very, very important to both of us. She has stood by me in good times and rough times. Always encouraging and uplifting. I almost believe this past 10 months have been one of her biggest tests. And yet, she continues to support and encourage and I have not seen any wavering on her part. She also has a very strong faith in God and He is our strength. I do think that these past months have been harder on her than me. I do a lot of research and am in the middle of fighting this disease. Not that she doesn't give input, but she has to play the role of the spectator, and I think that has to be difficult.

Cheryl and I did most of our arguing and getting quite mad at each other while we were going together for three and a half years. We broke up several times. Usually only for a few days and once or twice for a couple of weeks. We got it out of our system before getting married. Our first argument as a married couple didn't come until eight months into the marriage. And then, like most arguments, was over something quite silly. Not to say that we haven't had our share of a few real doozies over the years, but compared to many others, they are very few and very, very far between. I dare say, after 38 years, that this marriage just might last. I pray that the Lord gives us many more good years together.

I thank the Lord for Cheryl. A match made in heaven? You betcha. Happy Anniversary Honey!

Tuesday, December 20, 2005

What If They Find Nothing Up There?

I saw the neurologist this morning. I was impressed with him, a great doctor. I really have been fortunate to see some great folks. He thinks the pain in my, hmm, how to say this delicately, butt, and the backs of my legs is from lower back problems from my spinal deterioration. He thinks the numbness that happens on the top of my upper legs is from pinched nerves. Perhaps from swollen lymph nodes or perhaps from the back again. He has ordered an MRI, since earlier this year only X-rays were done on the lower back and the MRI was only done on the middle, upper, and neck region. I will then go back to his office on January 4th for some type of nerve tests. I don't know what that test is other than he said to bring a pair of shorts to change into. You would think I would learn to ask those questions while there and not wonder about it afterwards. He did say that it will be good to have a baseline on this nerve test because chemo can sometimes damage nerves and if that should happen, he will know where we started.

He doesn't know what to make of the memory loss. He said perhaps it is the stress of everything else that is going on with me. Perhaps that is true. I have really been making a lot of strange errors lately. I posted something twice to ACOR. Once last night and then again today. I noticed in a posting here on Dec 13, that I said to look for a link to David Arenson's blog on the left. It is on the right. I was giving away some stuff we had in our garage and I emailed the directions to our house to the person I was giving it to, but they were totally opposite. Every right turn should have been left and every left should have been right. I even had our house on the wrong side of the street. Then this Saturday we had a church Christmas party at our house and I sent directions to one person that had right and left mixed up again! My youngest daughter and my wife are dyslexic, not me! I have never mixed up left and right before. But then again, with my current memory, maybe I have and just don't remember. Ha! Anyway, the neurologist also ordered an MRI of my brain. They have an MRI from about six years ago when I had a mini-stroke and they can compare the results to that one. I am just wondering what he will do when the MRI shows just an empty cavity and there is nothing up there? I don't think brain transplants have been perfected yet.

Back to my treatment options. It sounds like I am on the right track with thinking about Chlorambucil as first line treatment from all the advice I am getting over on ACOR. I am also getting advice to slow down. Then, the great, fantastic, wonderful, Dr. Terry Hamblin, from the UK and one of the foremost CLL experts in the world, wrote to me. (It amazes me that a man of his stature and involvement in so much - just do a Google search on his name - takes so much of his time to help us out and answer questions and concerns over on ACOR.) I didn't even ask him specifically, but he took the time to answer me anyway. He is a wonderful, Christian man. Look at this post on his Blog for a Christmas Carol he wrote: http://mutated-unmuated.blogspot.com/2005/12/christmas-carol.html

Here is what he wrote to me:

"Dear John,
Good prognostic factors do not mean that the CLL will not progress, nor that it will never need treatment. On the other hand they do mean that the CLL is likely to respond well to treatment and that you are unlikely to die of the disease. I have certainly seen patients with good prognostic features eventually succumb to CLL or its treatment, but it has always been late in the disease at around 20 years follow up. Your lymphocyte count has gone from 15.94 to 29.4 in 6 months. This is just short of doubling in 6 months, you don't quite reach the threshold for treatment. However, this decision should not be calculated on just two tests. The trend should be measured with several tests so that an accurate assessment is made. Your platelet count has fallen from 118 to 100. Again, not quite reaching the threshold. The same strictures apply. You are not interested in a single observation. The next one may have gone up again. I do think that Chlorambucil is a good first treatment option for patients with CLL with good risk prognostic factors. Patients are likely to live for a very long time and if the suppression of CD4+ T cells that fludarabine induces can be delayed until later in the course of the disease, so much the better. Rituxin is moderately successful as a first line treatment, though CLL cells have less CD20 on their surface than other B cells and it seldom produces anything better than a PR.
Terry Hamblin"

(PR = partial remission)

What a terrific note, and so filled with optimism for my situation that it gives me great hope. I am taking his note with me to the Dr. on January 9th. He knows who Dr. Hamblin is and gave me some papers that had results from some of Dr. Hamblin's research. The only thing I wondered about was that if you look at the June lymphocyte count from the local lab that did the December work, that was 14.8. The lab in Houston had it at 15.94 in June. However, it is a small difference and still takes me to .2 away from the six month doubling time. His main point is well taken. You shouldn't base it on just one test, but should look at several. I do look forward to getting the swelling of the lymph nodes to go down, though.

David Arenson, among others, also wrote to me with lots of great advice. He also reminded me of his "three-day rule" that he wrote about on his Blog. A great analogy about being able to cancel sales of time shares that you might be pressured into. He further stated, "Sometimes that needs to be three weeks or three months! Don't let your doctor's scheduling drive the bus. It is important to take all the time you need to come up to speed on what might be best for you." Good advice. Slow down and smell the poinsettias, er roses.

As I reread the last couple of posts, someone might get the idea that I am panicking or scared of the treatment. Not at all. There is no fear at all! I am only concerned that I do the right thing and not mess up options for later on.

Well, I am off work until after Christmas. I took a couple of vacation days (nice change from sick time off). Tomorrow I am Christmas shopping for Cheryl and also trying to figure out a nice gift for our anniversary on Friday. Cheryl is off starting Thursday, until January 2nd! And it is free time, not charged to vacation days! If I can follow the directions for posting pictures, I will post a picture of our decorated home. I am the "Clark Griswold" of our neighborhood. (Reference to “National Lampoon’s Christmas Vacation starring Chevy Chase).

Monday, December 19, 2005

Hmm, That's Interesting

Tonight I was going through my medical records looking for all the tests done on my back last January and February so I can take them to the neurologist tomorrow. (Wow, since the auto accident in August 2004, that file has gotten very large!) In that file cabinet were my retired military medical records. Before moving here to the Austin area, I had all my medical care at Goodfellow AFB, San Angelo, TX.

If you remember, my local doctor had not done a complete blood count (CBC) since I moved here in January, 1996. Well, in those military records were a CBC from 1992 and another from 1995. In 1992, the white blood cells and the lymphocytes were well within the normal limits. In 1995, both the white blood cells and the lymphocyte cells were right on the very edge of high normal. Perhaps this was the beginning of the activation of the leukemia and I have had it for about ten years. I guess that would explain why it may be time for treatment, even with the "good prognostic indicators." If I have had it for ten years without treatment, that is a good long time. I will mention this to my hematologist/oncologist in January.

Well, I THINK I have decided against going with the Rituxan treatment. I have done a lot of research this weekend and have read many of the postings on ACOR from Dr. Terry Hamblin, for whom I have great respect. However, I still don't want to start with FCR first. Instead I am going to suggest going with Chlorambucil, also known as Leukeran®, as a first line treatment. Chlorambucil is an alkylating agent of the nitrogen mustard type.

The warning states: Chlorambucil can cause a decrease in the number of blood cells in your bone marrow. (Well, I would hope it does, I want to kill all those little cancer cells.) Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this drug. (Good! Otherwise it would be a waste, wouldn't it?) Chlorambucil has been associated with the development of other types of cancers. (Umm, let's not even think about that! This is supposed to kill my cancer, not give birth to more.) Talk with your doctor about the potential risk of developing a new cancer. (OK, I will.) Chlorambucil may interfere with the normal menstrual cycle (period) in women and may stop sperm production in men. (I'm 60! Who cares? I don't.) However, you should not assume that you cannot get pregnant, or that you cannot get someone else pregnant. (I don't think so! Cheryl would have something to say about that!) Women who are pregnant or breast-feeding should tell their doctors before they begin taking this drug. You should not plan to have children while receiving chemotherapy or for a while after treatments. (Believe me, I have no plans!) (Talk to your doctor for further details.) Use a reliable method of birth control to prevent pregnancy. (Again, no problem!) Chlorambucil may harm the fetus.

Side effects from Chlorambucil are common and include:
darkened and dry skin
loss of appetite or weight

Serious side effects have been reported with the use of Chlorambucil including: allergic reactions (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives); decreased bone marrow function and blood problems (extreme fatigue; easy bruising or bleeding; black, bloody or tarry stools; fever or chills; or signs of infection such as fever; chills, or sore throat); seizures; skin rash; yellowing of the skin or eyes; persistent cough; nausea or vomiting; missed menstrual periods, or unusual lumps or masses.

Actually, these warnings are much less severe than the warnings on other treatments! And, if I am not mistaken, this is taken in pill form -- a real bonus. Well, for now, that is my decision for my treatment 'soup de jure.'

Tomorrow I am off to the Neurologist, but I can't remember why! Oh, yes, it is because of my worsening loss of memory and the pain and numbness in my legs. None of my doctors think the leg pain is due to the leukemia or lymphoma, but rather due to the back injury from my auto accident. I don't remember what they said about my memory. We shall see tomorrow. Another medical specialist notch for my belt.

By the way, thank you to all who left comments on my last post or emailed me that they were reading this blog. I truly appreciate each and every one of you! Thank you for your prayers. God Bless!

Wednesday, December 14, 2005

Not The Christmas Present I Was Looking For

I saw my hematologist/oncologist today. I got the news I didn’t want to hear but what I was expecting after reviewing my blood work from last week. I will begin chemo treatments sometime after the first of the year. I have to get a referral from my primary care doctor and approval from my insurance company to see a surgeon to have a portacath put in. This is put into my chest underneath my skin so they can use that for the chemo without having to use the veins all the time. This device can stay in there for a year or more and in the months I am not doing chemo, it just has to be flushed out once a month with saline solution.

Dr. Netaji based his recommendation not only on the blood work that showed a doubling of the lymphocytes in six months, but also on my fatigue, night sweats (but doc! I only had one bad soaking one, one night!), and the fact that the CT scan I had last week showed major growth in all the lymph nodes in my neck, stomach and groin. Concerning my neck, which bothers me the most, the CT scan report says, “There is prominent general adenopathy in every major nodual chain of the neck.” The conclusion of the two page report says, “This patient has mild splenomegaly and widespread pathological lymphadenopathy…” Basically, spleen not too badly involved, but naughty swollen lymph nodes everywhere. Using a term I have heard, I guess this makes me a lymphomaniac.

I will get more blood work on January 4th, to make sure last week's hadn’t worsened for other reasons and then I will see Dr. Nataji on January 9th to set up my chemo schedule. I did ask him about using only Rituxan as I posted yesterday. He said we could do that if I really wanted, but he prefers to “hit it with the big guns” right from the beginning. He said he has one patient in a four year remission right now. As we talked I told him that I had read a lot. Basically he said I could read anything but you can’t believe everything you read. He said he was going to email me some articles on treatment. He agreed that if I really wanted, I could try the single agent Rituxan for a month. Obviously what he left unsaid was that when that didn’t work, we would go with his recommendation.

When I got home from work tonight, his email was waiting. There were two articles from the recent Hematology magazine. I had just read the one article on line this weekend! What that author said at the end of that article was one of the reasons I want to try the less toxic Rituxan by itself. Funny, same article and he is using it to convince me to go with the big guns and I am using it to convince him to go with something less toxic first. Obviously I have given it a lot of thought lately and especially this afternoon. Why not try it “for a month?” Rituxan is one ingredient of the triple combination he wants to do anyway. If it doesn’t work, fine, at least I gave it a shot, right?

I also told him I was a little concerned with my memory. He said that once you are over 50 you need to carry a little notebook around as he does. I said, "But doctor, I forgot that Cheryl had major surgery this year! I can't recall any of it and she made me work real hard and I finally remembered the attacks that led up to the surgery, but never could remember the surgery." He just stopped his notebook speech, thought for a minute, and then said, "I think you should see a Neurologist." (Probably was thinking psychiatrist, too.) I told him I already had an appointment for the 22nd of this month because of the pain in my legs (which, by the way, he didn't think is being caused by the swollen lymph nodes).

Well, that is about it for now. I started this blog to primarily keep my extended family and friends up-to-date and I really don’t know who is reading it. I have set it up so that anonymous comments can be added without having to actually sign in and join Blogger. I have had a couple of people at church, several from my ACOR list, and one person from work tell me they are reading it. But that is it. Do me a favor? Click on the "comments" at the end of today’s post; if you are not a member of Blogger, under “choose an identity” just click the “other” button then put in your name; or choose the “anonymous” button; type inside the text block, maybe type in your first name at the end of your comments so I can guess who left the comment; then hit “publish your comment.” That is all there is to it. If you really don’t want it here for the world to see, send me an email either to my work or at home to let me know you are reading this. (For home email first type jtw890 then type @aol.com – I broke that up so automatic scanners didn’t get my email and then send lots of junk) Thanks.

Trials keep You Strong,
Sorrows keep You Human,
Failures keeps You Humble,
Success keeps You Glowing,
But Only God keeps You Going!

Tuesday, December 13, 2005

Possible Treatment Option

Well, tomorrow I see the hematologist/oncologist. Of course I don't know, but I think I am getting closer and closer to treatment time. I hope not, but I have to be prepared. The more I read about FCR, the less I like it as a first time option. David Arenson's post (see link to the left) from December 07 titled "The Three-Day Rule," came at just the right time for me as I was exploring options.

If necessary tomorrow, I will be discussing with the doctor a much less toxic, one-agent treatment, Rituxan, a monoclonal antibody. If I could get the lymph node swelling down, I think I would feel better, at least maybe not constantly thinking about it. Because it causes my neck to feel like the beginning of a stiff neck, every time I turn my head, it reminds me I have Leukemia/Lymphoma all the time.

IF successful, it can reduce the nodes but doesn't cure the lymphoma (there is no cure). Some of the patients on my on-line support group have had success with the treatment. It works in 52% of cases and can last for almost a year. It can have some serious side-effects, including death (now that would be serious), but that is rarer than with the other treatments. When you go to the manufacturer’s website, the warnings are right there up front.

From that site, other sites I went to, and the personal testimony of those on the ACOR list, I have learned that the majority of patients experience infusion-related symptoms with their first Rituxan infusion. These symptoms include but are not limited to, flu-like fever, chills/rigors, nausea, uticaria, headache, bronchospasm, angioedema and hypotension. These symptoms vary in severity and generally are reversible with medical intervention. The first infusion is usually done very slowly over about a 10-12 hour period to try and avoid these as much as possible. Most times they give you an infusion of Benedryl first and sometimes Tylenol before the Rituxan. Sometimes long-lasting rashes develop, and renal failure can occur, but again, not as common.

On one of the websites, the following side effects are listed and quoted below:

More common: Black, tarry stools; bleeding gums; bloating or swelling of face, arms, hands, lower legs or feet; blood in urine or stools; blurred vision; cough or hoarseness; dizziness; dry mouth; fatigue; feeling of swelling of tongue or throat; fever and chills; flushed, dry skin; flushing of face; fruit-like breath odor; headache; increased hunger; increased thirst; increased urination; itching; lower back or side pain; nausea; nervousness; pain or tenderness around eyes and cheekbones; painful or difficult urination; pale skin; pinpoint red spots on skin; pounding in the ears; rapid weight gain; runny nose; shortness of breath; skin rash; slow or fast heartbeat; sore throat; sores, ulcers or white spots in mouth or on lips; stuffy or runny nose; sweating; swollen glands; tightness of chest; tingling of hands or feet; troubled breathing; troubled breathing with exertion; unexplained weight gain or loss; unusual bleeding or bruising; unusual tiredness or weakness; vomiting; wheezing

Less common: blistering, peeling, loosening of the skin; blisters in the mouth; blisters on the trunk, scalp or other areas; burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feeling; burning, tingling, numbness or pain in the hands, arms, feet, or legs,; confusion; decreased frequency and amount of urination; diarrhea; difficulty in moving; discouragement; feeling sad or empty; increased thirst; irregular heartbeat; irritability; joint or muscle pain; loss of appetite; loss of interest or pleasure; muscle pain or stiffness; muscle cramps; nervousness; numbness or tingling in hands, feet, or lips; pain at place of injection; pain, swelling, or redness in joints; red, itchy lining of eye; red skin lesions, often with a purple center; stabbing pain; trouble concentrating; trouble sleeping; swelling of face or fingers; swelling of feet or lower legs

Rare: Chest pain; renal failure; death

This medicine may also cause the following side effects that your doctor will watch for:
Less common High blood pressure; low white blood cell count

Other side effects may occur that usually do not need medical attention. After Rituxan is administered, large numbers of tumor cells are immediately destroyed (lysed) and eliminated from the body. In 4-5 out of every 10,000 patients the products from the dead cells cannot be eliminated quickly enough and a syndrome called tumor lysis syndrome occurs. This is characterized by a rapid decline in kidney function and a sudden accumulation or decrease in minerals such as potassium, calcium and phosphate to dangerous levels. Tumor lysis syndrome occurs when the size of the tumor or the number of tumor cells circulating in the blood is large, usually within 12-24 hours after the first dose of Rituximab.

Hmm, now that I read all that, doesn't sound so pleasant after all! However, usually what my fellow patients have reported is only the fever and chills. A few have reported they had no side effects at all. A couple reported more serious effects.

Rituxan uses Rituximab, a monoclonal antibody. It is used to treat several types of non-Hodgkin’s lymphoma. It is made from mouse proteins or, one site stated, Chinese Hamster Ovary (I may develop a strong desires for cheese, having litters of babies, or running in circles inside and around wire wheels). It is funny that the manufacturers web site said to tell your doctor if you are allergic to mice or rats. Hmmm, how does someone know that? I have a strong aversion to them, does that count?

Anyway, Rituxan attacks and kills both the cancerous and normal B cells, but the normal cells quickly rebound. I think it may be worth a try. Hopefully it would have an effect on the fatigue, also. It is quite expensive and I believe it is still considered experimental for CLL. I haven't checked to make sure my insurance covers that, but I assume it will because so many have used it for CLL.

Susan LeClair, one of the professors who answers our questions on the ACOR list, once stated, “Traditional chemo can not be used as aggressively as these monoclonal antibodies can because the damage that is done to the bone marrow is too great. Traditional chemo has to be stopped when the counts for plts, rbc and grans get too low. The monoclonals do not have this problem so they are the perfect choice to use against malignant cells in a person whose marrow needs some protection or relief.

Dr. Terry Hamblin, a world-renown CLL expert, has posted the following to our list. I am putting it here to help those who are not members of that list understand our options.

“Remarkable advances have been made in the understanding of CLL in the past 6 years. What has not been found, however, is a single underlying lesion to account for the disease. Other chronic hematological malignancies like polycythemia vera and chronic myelocytic leukemia do have a single genetic lesion.

Therefore, at the moment we don't have a single target to aim at, and our treatment has to be relatively non-specific.

Chlorambucil bashes all bone marrow cells and all immune cells. Fludarabine bashes T cell especially. Campath kills all lymphocytes as well as monocytes and dendritic cells. Rituximab kills all B cells. Newer antibodies like anti-CD23 do not seem so effective.

Even if we had a guided missile that targeted CLL cells specifically, tumors like CLL are devious in their way of avoiding attack and resistant forms might arise.

I suspect we will have a cure in out lifetime, but it will be a war of attrition.
Terry Hamblin”

Well, I shall close for tonight and see what the doctor has to say tomorrow. Pray for good news.

Sunday, December 11, 2005

So Many Suffer

I just wanted to share an experience I had at the cancer clinic on Friday. After my CT scan, I went upstairs to the cancer clinic to have my blood drawn. I signed in and sat down to wait my turn. The clinic is a really comfortable place with comfortable, upholstered easy chairs and sofas and love seats. I sat over by the TV area and was watching the news. I was the only one in that area. Soon a little wisp of a lady and her husband came and sat on the couch very near me. She immediately caught my attention because she had obviously been very ill and had a very drawn, sunken look about her. However, she had taken great care in applying her makeup and lipstick to look as good as she could. Her husband was a large man and judging by his age, I would guess she was in her 50's, although it was hard to tell.

Soon a lady came out and sat beside her to get some information, a history, I guess, and was busy filling out forms for her. I truly did not listen as I felt it was none of my business. However, the tone of the conversation changed and I began to tune in. I only caught bits and pieces, but it touched me to my core. Through tears she vented her frustrations in dealing with her disease. I don't know what type of cancer she has, but I did hear her say that she could not find a support group because her cancer was so rare that only a couple of people in the U.S. had it. She lamented the fact that she could not find anyone who could truly understand what she was going through. She mentioned that one of the characters on "Desperate Housewives," which I don't watch, had said she wore a double zero size dress. This lady said that character looked plump compared to her. I would have to guess she was probably right in her assessment. She said she had to now shop for clothes in the children's department and nothing seemed appropriate for a mature adult woman. Apparently eating causes major problems for this lady and she said that on more than one occasion when she told others about that they would invariably mention that they too had bouts of indigestion. She said that was an example of people unable to understand her situation because bouts of indigestion did not even begin to compare with how she was suffering. Apparently she was a professional baker or cook, and I got the impression she did this from her home. She said she can't even tell what her food tastes like anymore and she has to have her husband taste it for her to tell her if it is good or not. She just wanted to be able to talk to someone who understood. She said she vents sometimes at home, but she can't keep burdening her husband all the time with her tales of woes. Her husband just looked lost and terribly sad. He kept patting her leg to try to comfort her. As she talked, tears kept welling up in my eyes and I began praying for her.

Right after I began praying, she mentioned she felt ashamed that she even felt anger towards God that He was allowing this to happen to her and she didn't know the reason. Even her Christian friends couldn't understand and she was afraid that she was beginning to doubt her own faith. She said she was prepared to die, but even that wasn't allowed for her. What she missed most was feeling "normal." She said she knew that this was her “new normal,” but even then she couldn't accept and adjust to that. She continued to pour her heart out to this stranger who sat beside her, who listened with great compassion, massaged her shoulder and handed her tissues. I couldn't catch everything she was saying, but words continued to spill out and I continued to pray really hard for her.

Soon, but I am not really sure how soon it was, my name was called to go for the blood draw. I stood up, took a few steps over to her, interrupted her and, with tears in my eyes, just told her I had been sitting there praying for her and even though I didn't know her, I cared about her and wanted to understand. I then went for the blood draw.

I was told I could wait for the results and I said I would. I was hoping the lady was still out there and I could have a real conversation with her. However, when I walked out of the lab, there she was walking down the hallway toward me. She stopped me, put her hand on my arm and just simply and very sincerely said, "thank you for that."

I have been thinking about her ever since. I also thought about the hundreds and even thousands of others who are suffering world wide with so many terrible tragedies and just want someone who understands. Isn't that what we all want?

Was she wrong to be mad at God? I can't really judge that, but the scriptures, both Old and New Testament, are filled with examples of many people, strong in their faith, who had times of doubt and even anger toward God. Perhaps it must be normal. I do think He welcomes our honest dialogue with Him, even if it includes all those emotions. He understands, even when we can't.

I thought about the ACOR list for CLL patients that I am a member of. There are well over 2,000 members of that list, although many don't post but read regularly. I think that is why we are there -- for support, understanding, and even education. We want to know there are others going through what we are going through. There is an abundant supply of education, understanding, and especially support on that list. There are other ACOR.org lists for other cancers, too. I just wish I had an opportunity to mention that site to that lady in the waiting room.

We all adjust in different, very personal ways, but often in similar ways too. On the CLL list, when someone is brave enough to post their emotional crisis, many members rally around for support. Sometimes members publish their supporting comments on the list for all to read, but also send personal emails. So many have testified to that and how it helps.

A while ago, I posted the ‘cycle of grief’ on the site for a lady that didn't know why she was feeling what she was feeling. This is something I teach in one of my classes and it is applicable to those coping with the news of a terminal illness or even coping with the death of a loved one.

There are five stages of grief:
1. The first stage is denial and isolation -- "not me, it can't be true, maybe the test is wrong. I want a second, third, fourth opinion"

2. Second stage is anger - "why me?" The anger is often displaced and taken out on others. As for me, I shout real loud a lot at the crazy drivers on the interstate every morning on my way to work -- but I don't make eye contact :) As a reminder, I even put a sign on my board at work that said "you can only get angry at the disease, not anyone or anything else."

3. Third stage is bargaining - may take the form of something like "please God, if I promise to be good and do right and eat right and exercise and stop doing (whatever personal sin you are feeling really guilty about), will You please cure me?"

4. Fourth stage is depression - numbness, a sense of great loss. We have probably all experienced this in various degrees.

5. Fifth stage is acceptance - however, there is some danger here of giving up too soon.

That is a rather simplistic explanation and there are more details that I left out, but I didn't think you wanted to sit through a class right now.

Now, do we neatly go through the stages? No. In fact I think we can be in a couple at the same time and I know we can be cycling through various stages multiple times.

Tears? Heck, throw them into all the stages if you like and don't feel guilty. (But for goodness sakes, don't show me any Hallmark card commercials or "Extreme Home Makeover" when someone else is in the room. I am a MAN, you know!) I think it helps to know what can happen and is happening emotionally and realize it is perfectly NORMAL!

When we pass the stranger on the street or even that other patient sitting in the waiting room, we can't know what personal struggle they are going through. But somehow, it helps us in our own struggles when we reach out to those that are battling through their own difficulty.

Saturday, December 10, 2005

Still Watching and Waiting I hope!

Sorry I didn't post the "catch up," yesterday. Two reasons actually. First, we went to my wife's office Christmas party last night so there wasn't much time.

Second, I truthfully didn't feel much like posting. I went and had my CT scan in the morning and the three-month blood work. Unexpectedly, I received the results of the blood work before my hematology/oncology appointment next week. Maybe that wasn't such a good idea because the results bummed me out. To my untrained eye, the results don't look all that great. White blood cells jumped 10k since September -- up to about 38k, platelets down to 100 and lymphocytes have doubled in 6 months -- up to 29.4k (normal 1.0 to 0.6) and are now up to 89.6%. Other indicators all got worse except the red blood cells and HGB. Although still low, they did get somewhat better. Neutrophils and other stuff that fight infections have gotten pretty low. Not sure why I'm not getting infections yet. Must be all the prayers! Overall, the report bummed me out some, but I need to wait and have it explained to me on Wednesday. I am pretty sure the doubling of the lymphocytes is a pretty strong indicator to start treatment. The white blood cell count isn't that big a concern as I have read many times they do not treat based on those counts, even though 4.0 to 11.0 is where it is supposed to be. I know from reading on the ACOR list that many fellow CLLers have had those counts way up over 100 and even much higher. We shall see what it all means for me on Wednesday.

OK, back to try to catch everything up-to-date. If you remember, my Endocrinologist, Dr. Scumpia, had done a carotid artery test (sonogram) test that showed quite a bit of blockage on one side of my neck. She put me on Niacin tablets to take at night and scheduled me to come back in August for another sonogram. The August test showed tremendous improvement – most of the blockage was gone! She was elated that the Niacin worked so well. So elated she doubled the dosage to 1,000 mg. The next night, before I had gotten the new refills to double the dosage, I woke up at 2 a.m. My skin felt like it was on fire. I went in and looked in the mirror and I was red, like sunburn from my face all the way down to the tops of my feet. My skin felt warm to the touch to me but I took my temp and it was actually low - 95.4. I got in the shower to try to relieve the feeling on my skin and the water hitting it felt just like it does if you have sunburn. After I got out of the shower, it started hurting/stinging like I had gotten into a bunch of nettles (poisonous plant). After about 10 minutes it just started itching like crazy. I was itching all over and really felt like I was going nuts. Cheryl helped calm me down. I found some over-the-counter antihistamine and took that and tried to get some sleep and forced myself not to scratch any more. I finally fell asleep and in the morning I was absolutely fine again -- no redness, no itching, nothing. The next morning Cheryl confessed that she couldn't get her eyes focused enough at 2 a.m. to really see if I was red or not - LOL. But she did come up with the antihistamine solution, bless her heart! I went and asked my friends on ACOR if anyone hade ever had this happen (told you they were great support) and found out from several people that it was a side effect to my Niacin. I had been taking it all that time and it had never happened before. I was nervous taking the double dosage. But, I learned that by taking an aspirin with it, you can avoid, or reduce the effects. Since doubling the dosage, I have had some minor reactions like that night, but not even close to what it was that night.

On September 21st, I had another appointment with Dr. Netaji. Things were still looking good! Most of the important indicators only got slightly worse and one got better. Both the white blood count and lymphocyte count went up by 4,000 each and the red blood cell count went down very slightly. My platelet count went up to 127. All in all good news.

In October, we went on a trip. I figured if I wasn’t going to be getting chemo anytime soon, I could afford to take a couple of vacation days. We had free frequent-flyer airline tickets. My wife, youngest daughter Cindy, grandson Jonathan and I took a four-day weekend and flew out to Las Vegas and then went on to the Grand Canyon. Cindy's husband, Corbin, was supposed to go with us, but he could not break away from the oil fields. Going to the Grand Canyon is something I always wanted to do. It was an absolutely FANTASTIC trip! Pictures can not do the Grand Canyon justice. It just takes your breath away with its magnificence and beauty. I don’t gamble, but I did enjoy walking, and walking and walking up and down the strip in Las Vegas and looking at all the hotels. We went to a comedy magic show that was great and then went to an “oldies” musical called “Forever Plaid.” We really enjoyed that too. My grandson liked Circus Circus and liked playing the games and watching the circus acts. Cindy pushed us into going on this trip now "before it is too late" (she made all the reservations and paid for a lot of the trip) so I designated it the "Daddy's Dying" trip. I told her we were going back in ten years for a "Daddy's Not Dead Yet" trip. I had avoided using the “Daddy’s dying trip” designation around Cheryl but did slip up once. She didn’t think it nearly as funny as my daughter and I did. I told Cindy that since I had now crossed something off my "want to/must do" list, other things needed to be added because we couldn't let the list run out. I also reminded her that I have always wanted to go on a cruise and reminded her of the Hawaii trip -- made sure my other daughter was told that too! -- HA!

Well, this finally brings me up to date. Thanks for being patient if you have read through all of this. I have found it to be strangely therapeutic.

Thursday, December 08, 2005

The Rest of the Diagnosis

Well, I am getting started on this earlier today. Austin, Texas had an ice storm last night and most everything is closed down, including the Department of State Health Services where I work. I was scheduled for blood work at 2:00 this afternoon and they just called me and canceled that. I am scheduled for a CT scan tomorrow morning. I don’t know if that will happen or not. I may be drinking that stuff tonight for naught. We may get above freezing this afternoon, but tonight will be in the teens and that is the coldest it has been in several years. To my family in upstate NY and Denise in New Jersey, if you are reading this you may wonder what the big deal is. But this is Texas and we don’t know how to deal with this type of weather. It is hard to believe we were in the mid 80’s this weekend. But, we will be back into the 60’s this Saturday.

Well, back to my story. We had left Houston feeling very good. That next weekend, my daughter, Cheri, and her husband and two kids moved down from San Angelo, TX. For several years, we had wanted them to come here to join us and my youngest daughter, Cindy, and her family. Family is very important to us and that drive (over 200 miles) for visits was not as often as we would have liked. She had been considering it for some time. She called me near the beginning of May and said there had been so many things to make her think that now was the time to move, especially my diagnosis. She said God made it very plain to her as she had just, very unexpectedly, lost her job. Neither she nor her husband and been that happy in their current positions. I told her to put their house on the market and come stay with us until they got established. By mid May, before moving here, both of them had new jobs lined up to begin after Memorial Day. She is a CPA and her husband is a great, long-time automobile mechanic. Both jobs were at a great pay increase from what they had been earning. I don’t know why I keep being amazed at how God always works things out. By the way, my other son-in-law is a licensed funeral director, even though he currently does something with computers, guiding drillers out in the oil fields. Between him and my auto-mechanic son-in-law, I figure whatever breaks down with me, body or car, one of them can take care of it.

My ENT appointment was supposed to have been the Monday that I had the MD Anderson appointment, so I changed it for the following week. I was still losing my voice occasionally, sometimes for a couple of days at a time. I was more very hoarse than complete voice loss, almost to a whisper. So, I went to the ENT doctor (my 5th specialist) and he did the scope with a camera down my throat. He thought the hoarseness was the result of the masses in my neck crowding in on the vocal chords (what my primary care physician thought). When he was squeezing (CHOKING!) my neck he said he could feel a bunch of them. He ordered the results of the CT scan I had in April so he could see which lymph nodes were swelled and "glowed." Now the plan was for me to go back to him in four months as he wanted to keep an eye on it. I must confess that I haven’t been back. Once in a great while, the hoarseness comes back, but not often and not for long.

By June, I still didn’t have my follow-up appointment at MD Anderson, so I called down. The nurse was surprised nobody had called me. Eventually I got an appointment for June 20th.

By the way, the bill came in the mail the Saturday before and that ONE day's worth of tests cost $18,000! My insurance has paid all but $130! Thank You Lord!

Again, like my initial results, the results were very good. In fact, except for two areas, they could not have been much better as far as prognosis for my leukemia!

The two areas that could have been better:
1. I have a pattern of both nodular and interstitial pattern of infiltration of the bone marrow, in other words, mixed. So what does that mean? Well here is a quote from an article in the National Library of Medicine: "The statistical analysis of survival curves reveals significant differences in the probability for survival to be met with in types with morphologically limited bone-marrow infiltration in the sense of a proceeding deterioration of prognosis in the following order: interstitial, nodular, mixed, and diffuse type." So you can see, if you can interpret that, it is not the very worse prognosis as it is not diffuse.

2. The amount of infiltration of the bone marrow two months previous was 70%. The result of this biopsy was: "Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma involving 80-90% of cellularity." So, it has progressed some in the last two months. However, that does not seem to be a very big worry to Doctor Weirda. (Certainly not as big a worry as Cheryl has about that.) So what is the significance of the percent of infiltration? Well, the more compromised the bone marrow becomes, the more the bone marrow may not be able to make the necessary cell lines it is designed to make, such as platelets and red blood cells.

They also took more blood at that appointment, but only five tubes, that time. My white blood cell count only climbed a little, neutrophils and hemoglobin dropped some more, lymphocytes climbed more but so did my platelets, all the way up to 118, which is good. (Between 140 and 400 is normal). The rest of the news was all good in the prognostic indicators:

Negative for CD38; ZAP-70 negative; IgVH Mutated; 13q deletion, B2M 1.8 So, what does all that gobbledy gook mean? It means that my leukemia is not real aggressive, fairly slow growing, and when I do start treatment, I have an excellent chance of being able to go into remission with the standard "cocktail" of chemo treatment (remember, there is no “cure,” but a two or three year remission is what is hoped for!) .

Now, you may have noticed that there was an addition to the diagnosis that wasn’t there with Dr. Netaji. That is the SLL (Small Lymphocytic Lymphoma). Of course I went back to the computer to research. It is a Non-Hodgkin’s Lymphoma, but so closely related to CLL that many doctors basically consider it as one disease. Certainly the treatment is the same. One is more cancer of the blood and the other is more cancer of the bone marrow. That is the reason my lymph nodes are all swollen.

So, bottom line is that I am on "watch and wait" for now – or perhaps better stated, “watch and worry.” That means watch all the blood indicators and watch for serious symptoms to develop and wait for treatment. At first I thought it would be frustrating to have to wait for treatment (and to some extent it is), but the more I read, the more I realize that it is a true blessing to put off the treatment for as long as possible. The treatment can do some pretty nasty stuff to the rest of the body and has some very long lasting to permanent side effects. That is why it is always advisable to wait as long as one can if your prognostic indicators are on the good side. There are members of ACOR that have had this for many, many years without any treatment and others who have had to begin treatment right after diagnosis. As the doctor said, the longer one can wait, the probability that better treatments will have been developed when it is time to treat. None of the chemo treatments have actually proven to prolong survivability at this point. They just take care of symptoms and put it into remission for variable periods of time. The only known “cure” that I am aware of happened to Tom McCune after an autologous bone marrow transplant in 1990. (I just added his link off to the side here.) His latest tests in June of this year still have everything in the normal range. Way to go Tom!

Dr. Wierda said I would be an excellent candidate for a clinical trial he was currently running, but there was no pressing need to start it then. He is doing FCMR, which is FCR + mitoxantrone. Requirements are to be less than 70 yrs old + B2M less than 4.0. The second study he is doing is CFAR which is cyclophosphamide/ fludarabine/ alemtuzumab/ rituximab. Requirements less than 70 yrs old and B2M of more than 4.0. However, for now, I will just have blood drawn periodically and keep track of those numbers and watch for serious symptoms. The only symptoms I am having right now are swollen lymph nodes, tiredness/fatigue and sporadic hoarseness. I can live with those - literally!

You know, I said it was all good news, but it is kind of like saying, "Wow, I lost my house in the tornado, broke my leg, and got a concussion, but at least I wasn't killed." It's all relative.

I had a regular scheduled appointment with Dr. Netaji in June the next week and he agreed with everything from MD Anderson and we are going to do the "watch and wait" with periodic blood tests. Of course, the blood tests he did then weren't significantly different from the previous week down in Houston. He said that a jump up and down of 20% in the various numbers is "normal." He did agree with Cheryl -- guys hate it when their spouse is right! -- that the 80% to 90% of bone marrow involvement could become / is a concern because as more and more of the marrow gets filled up with the cancerous cells, it won't be able to do it's job and that is when I will start getting infections, get more anemic and have bruising problems, etc. Of course when that type of stuff starts, that is another indicator that it is time to treat. He did say he had seen a case of someone that had 90% involvement of the marrow and it stayed that way for years. So you never know. There are enough people praying for me that I could live to be an old man -- oh, wait, I am old. I just read an article about the elderly and they were talking about someone who was 60 -- sigh. I don't consider that elderly anymore. My grandkids are now calling me “elderly.”

Well, it is now mid-afternoon, the temperature has climbed to 33, the sun is shining and the ice is melting! It is turning out to be a nice day. I will catch up everything else tomorrow on the next post! Halleluiah!

Wednesday, December 07, 2005

OOPS, What Was That Diagnosis? MD Anderson Visit

I forgot to mention yesterday, that after my preliminary diagnosis, I was scheduled to go to Arlington, Texas to conduct a four-day training. My boss was willing to substitute another trainer in my place, but I felt like I needed to do something “normal.” Besides, I was just waiting for my insurance company to approve the CT scan and BMB appointments and then waiting to make those appointments. I am glad I went because, at least for a few hours a day I could think about something other than the Leukemia. While up at the regional state health department in Arlington where I was conducting the training, Ron Stinson, a local employee, gave me the book “Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson” by Mitch Albom. Wow, did I need that! What an inspirational read and one of the many things over these last months that have inspired me and helped me not to feel sorry for myself. I read it in one night back in my hotel room. An interesting side note – I was conducting a technical assistance visit in a different location in Arlington just two weeks ago and I met a lady who had given that book to Ron. When Ron found out I was going to be there, he told her about me. She told me she wasn’t even sure why she had given it to him. I know! God works in wondrous ways and He knew when I needed to read that book.

Well, to continue my story. After my “official” diagnosis, I just needed to wait for my second-opinion appointment at MD Anderson in Houston. Every little pain, twinge, tickle, and imagined movement inside my body was analyzed by me wondering if it had something to do with the “Big C.” I found myself losing my voice off and on and also trembling quite often. I called over to the oncology clinic about the voice loss and they told me to contact my primary care physician. He thought it was from swollen lymph nodes in my neck, but made a referral to an ear-nose-throat specialist to make sure nothing was going on with the vocal chords. Now I was waiting for that approval and appointment, too. I also had an upcoming appointment with the endocrinologist who had originally found something wrong in the blood. Wow, from seeing only my primary care doctor every six months to all these specialists! Overwhelming.

My boss kindly decided not to send me out on the road to do any more trainings for the time being. I had too many appointments coming up and we didn’t know when the MD Anderson appointment would come through. He substituted other trainers into my scheduled slots. I can’t say enough about all the support and understanding all my co-workers and supervisors give to me.

I went to the endocrinologist, Dr. Simona Scumpia, on May 12th. She did a carotid artery test (sonogram) because of the transient ischemic attack (TIA) or mini-stroke I had 5 years ago. The test showed I had quite a bit of blockage on the right side of my neck and very little on the left side. It is not bad enough for surgery yet but bad enough where she was concerned. She is going to be looking at it every three months for awhile. If it gets too blocked it can cause me to pass out or even have a stroke. Sigh. She did some kind of special type of blood test since my triglycerides have been great for almost a year (from over 500 down to 85 currently) and my cholesterol had been under great control for a couple of years (other than the ‘good’ cholesterol was still a little low), so she thought the artery should not be blocked that much now. Remember that train heading down the track? It seemed to be picking up speed.

Then I went over to the hematologist/oncologist to find out why I had heard nothing from MD Anderson. While I was there, the Dr's nurse called down to Houston (instead of faxing like she did the last time I inquired) to find out why we had heard nothing and the lady there claimed they didn't have any of my paperwork even though there had been a confirmation three weeks ago that they got it. Anyway, she got the name of the person there and sent the stuff directly to her. They promised to get a quick response that time and said I should hear the middle of the next week.
It was time to see the hematologist/oncologist again the next Wednesday, on May 18th. When we made that appointment, it was with the assumption I would have been down and back from Houston. On the morning of May 17th, I got the call from Houston. I had the choice of an appointment in mid June or take one for the next Monday, May 23rd. Of course I took the one for the next week. I called Dr. Netaji’s office to see if I should cancel with him the next day. He wanted to see me anyway.

I’m glad I went. I got some good news there. When I started asking him about the mylodyspastic syndrome (MDS) diagnosis and how he planned to handle that, he said I didn’t have MDS. I told him about the paper it was on. OOPS! Well, it seems that the diagnosis of MDS added to the CLL (Leukemia) was a "clerical error," at least the MDS part. I was very concerned because that is not a nice combination to have. Apparently in the "diagnosis" area of the paperwork that I had, some clerk had added the MDS when it wasn't supposed to be there. The doctor was very apologetic and I was very relieved. Also some further test results were back that showed that I do not have the 13q deletion (chromosomal abnormality) which would indicate a poorer prognosis if I had it. About time a doctor gave me good news! I could feel prayers being answered.

Sunday afternoon Cheryl and I headed for Houston. It was to be a three-day appointment and I needed to be there early Monday morning. What a sobering experience it is being at that hospital and in the clinics when you realize that all they do is treat various forms of cancer. So everyone you see is either a cancer patient or a caregiver or loved one of a cancer patient. The adult leukemia clinic waiting room was full to almost overflowing with about 100 people in all stages of all kinds of leukemia. That being said, they are very efficient and at the same time very kind and caring. Because I was a new patient, every time we had to go somewhere different, some one took us. There were about five of us that signed in as new patients that day. First we turned in the eight page medical history questionnaire that we filled out, were given an ID card and some other information. Then we met with a nurse who went over the medical history and asked even more questions. Then we were taken to the blood lab right there in the Leukemia clinic, where 18 tubes of blood were collected. I counted them several times to be sure! It was a massive operation and they were taking many people's blood at a time and it looked like everyone gave many, many tubes of blood. Initially they test for lots of things including HIV-1, HIV-2 (mostly concentrated in Africa), Hepatitis C and they even did the PSA test for me (prostate indicator) because I didn’t know when I might have had one. Then we were taken to the floor where they do the dreaded bone marrow biopsy. Yes, I had to do it again. A couple of people on my ACOR list told me to ask for a certain technician because he was the very best and very gentle and kind. He even teaches others how to do it. I was also told that with him doing it, it wouldn't hurt at all. If you remember when I had it here in Austin, I was very sedated, remember next to nothing and had NO pain either during or after. Well, I could have requested to be sedated there too, but I was told it would have added two more days to our visit. I decided it was not worth it and I put my trust in the special technician. Besides, most everyone said if you had to have a BMB, MD Anderson is the place to have it done. No pain.

Hmm, of course because I am weird, the local anesthetic wouldn't take. I should have known because I have trouble numbing up at the dentist with certain anesthetics. I was given several shots as he tried and tried to get it as numb as he could. He said he gave me more than he ever had given but just couldn't get it totally numb. Because he kept trying to avoid the nerves and pain, he moved the needle to several places and tried multiple times. Finally I told him to just go for it and he did. OUCH!!! It hurt a lot going in and I felt all of the marrow aspiration right down my leg too. Actually, going through the bone itself doesn't hurt, just getting to the surface layer of the bone and then pulling out the marrow and the bone core. Then after it was all over, my blood pressure was very high and kept bouncing all over the place. No duh! At one point I saw it was 193 over 92. Finally it came down to 152 over something and he let me go. I think he was very glad to see me go! (I have since read that you can’t make a special request for a technician any more. I wonder if I messed that up for everyone.) When I came back to the waiting room, Cheryl had a look of great concern. Before it was my turn we had been watching people go in and come out for over an hour and everyone was in there for 15-20 minutes. I was in there for over an hour. She said that people kept going in and coming back out and I was still there. She said if I hadn’t come out when I did, she was going to go in. I think the day was worse on her than me. At least I got to do things; she spent lots of time waiting for me. She did come in with me whenever I had to speak to someone. Anyway, I was still hurting from it a couple of days later. Next time I ask to be sedated and they can even bring in the sledge hammer and metal spike, I won’t care!

After preliminary tests were run on the blood and bone marrow, we were called back two hours early to the clinic to see Doctor William Wierda, one of the premier CLL specialists. First we saw his nurse and PA who went over previous paperwork that had been sent from my doctor. She also got more details from me about symptoms, history, etc. Then we waited for the doctor to come in. He then went over with us the test results that had come back so far and answered questions for us. He was excellent! The only result that had gotten quite a bit worse was the platelet levels. They had dropped. His recommendation, based on the tests that were back, was NO treatment at that time! The treatment can cause long-term bodily damage and possible mutation to more aggressive forms of leukemia, so they try to wait until it is absolutely necessary. I have a couple of indicators that were close, but not there yet. He recommended doing blood work every five weeks to keep a close eye on it. He outlined all the indicators to watch for that will determine when to possibly do treatment. (NOTE: PLEASE DON’T RELY ON THIS FOR MEDICAL ADVICE FOR YOURSELF) They are: Hemoglobin less than 11 and (or, I think) platelets less than 100,000 (that is where I am very close); Significant fatigue, night sweats, and/or fever without indication of infections; Massively enlarged lymph nodes and/or enlarged spleen (my nodes are all enlarged, but not massive and no enlargement of spleen); Lymphocyte doubling time of less than six months; and one that I don't remember and can't read his writing on. He also recommended a choice of four different treatments (actually all variations of the same basic treatment) and two of the four are research trial treatments. All involved Fludarabine which works well but scares me a little because it can cause major problems. Since I live less than 200 miles from Houston, he suggested we go home and come back later for the results of the rest of the bone marrow tests. At that time he said he could give me his definite position of the course we should take. He told me just to go and the scheduling office would call me at home with the appointment. So, my three day appointment turned into a one day appointment. By now it was rush hour in Houston, we already had the room at the hotel, so we decided to spend the night and relax. We left Houston the next morning feeling VERY good.

Before I close for this evening, let me try to explain how I was feeling emotionally. Looking back on that time, over six months ago, I was doing fairly well. I was feeling the support of all the people I knew and I heard from folks I hadn’t heard from for several years. I had many, many people telling me they were praying for me and I could tell that they were. Outwardly I was pretty calm. I really was not feeling any sense of panic. Now, I think that some of the trembling I was having was a nervous reaction without me even realizing it at the time. I was accomplishing nothing at work as I was thinking about it all the time and reading and trying to learn everything I could. I would try to work on a new training course I was developing and my mind would wander off and the next thing I knew I was out on the Internet reading more about Leukemia and trying to figure out my odds. I learned that “average” survival time didn’t mean much as most of the figures were based on old treatments and who is “average?” What I really craved was to be able to look into the future and know what was going to happen and when. Or, at the very least I wanted the ability to just forget about it for awhile. For some reason it was easier to forget about it for periods of time at home during the evenings and on weekends more than when I was at work. Cheryl and my daughters and grandkids were my “normal” base. My concentration level at work was pitiful. From that day in March at the endocrinology appointment when Dr. Scumpia said something was going on with my blood, my life really had changed forever. In April, when I walked out of the preliminary diagnosis appointment with Dr. Netaji, I remember being surprised that everything around me seemed to be going on as normal. Didn’t those folks know I had just been told I had Leukemia? Wasn’t the world supposed to stop, or something? I guess if I had to label that period of time, it would be ‘confusing.’ I wanted to do something with treatment, and yet the more I read, the more I realized it was better to wait as long as possible. That didn’t want to compute in my mind. After all, I had taken a lot of action against diabetes and had it under control, why couldn’t I do that with this dragon? There was the conflict!

Tomorrow, the rest of the test results.

Tuesday, December 06, 2005

The Saga Continues

Sounds like a soap opera, huh? I can just hear the organ music playing in the background. Do they still do that on soaps today?

Anyway, I will work on being less verbose. Maybe. Well, I had the CT scan and then he set me up for my bone marrow biopsy and aspiration (BMB). Obviously, the CT scan is a piece of cake as long as you are not claustrophobic and I’m not. Now that other test made me extremely nervous! I read everything from it was a horribly painful experience to no problem at all. Several folks on the Cll.Acor listserve said their biopsy was painful when done locally, but no problem at MD Anderson in Houston. Well, mine was going to be done locally. I don’t mind needles for shots and have gotten used to them for blood draws, but the thought of a long needle going all the way into my hip bone via my butt, pulling out some marrow and then taking a small core of bone out did not sound like how I wanted to spend a morning. Advice on the listserve said to make sure the technician gave plenty of time for the local anesthetic to take effect and engage them in small talk so they didn’t start too quickly. OK, I could do that. I went in for the test at a local hospital. I was VERY nervous. As soon as the nurse came in I started asking about the kids, grandkids, favorite movies, latest books read… Oh wait; I didn’t have the local yet. Anyway, I was in a room with a CT machine. I hadn’t read anything about that. (By the way, so far I have only read about one other person that had the test in conjunction with a CT scan and to this day, I don’t know why.) I went in and out of the machine, lying on my stomach, several times. Each time they would draw an “X”, I think, on my back side and put some type of markers there. Guess I should have asked why. At least they protected my modesty by placing a blanket over most of my exposure. I told them I was very nervous and they said don’t worry, you won’t feel a thing. Right, that’s what they all say. I even mentioned that I was told to engage them in conversation while the local took effect. The tech said it would not be necessary as I was going to have “conscious sedation” and it worked really fast. I would get it through my IV. OH, so that’s why I had an IV, I had wondered about that. OK, so I do sometimes act like a sheep being led to the slaughter.

Well, they positioned me semi-bent over the end of the table I had been lying on for the CT scan and removed the blanket. There was the end of my modesty. So, there I am with my butt facing the door when it opens and someone else enters. I hope nobody else was passing by in the hallway because if they were, I probably traumatized them. I was introduced to Dr. somebody who would do the procedure and then they put the shot in the IV and I was off to La-La Land. I felt nothing and don’t remember much. At one point I hallucinated and thought I heard the Dr. say I had really tough bones and to hand him the hammer. I then, clearly had the mental image of a large spike on my backside and the doctor was holding it and a tech was striking it with a sledge hammer. I even “heard” the clanging as the hammer struck the spike. HA! So I guess that is what I missed out on by never taking illegal drugs in the 60s, 70s, 80s, or anytime. Soon they were wheeling me to recovery where my wife was waiting. I took another nap. After a bit, I woke up, they released me and we went home. All that worry for absolutely nothing. I wasn’t even sore back there. Only a small Band-Aid was over the wound and nothing hurt…neither then nor the next day. Wow, that was easy.

On April 18th I went back to Dr. Netaji for the “official” diagnosis. Just as he thought, CLL (Chronic Lymphocytic Leukemia). The bone marrow was 70 percent involved and I had numerous lymph nodes infected and swollen in my groin, stomach, under the arms and around my neck. I had been feeling the ones on my neck while shaving for many months, but I thought it was because of all the weight I had been losing. Back in December I also wondered if I might have infectious mononucleosis, something I had every two years from age 12 up to mid 20s. I was going to ask my regular doctor the next time I went for my diabetes checkup, but then I forgot to ask.

Dr. Netaji said I could start chemo that week if I wanted. However, I had researched and discovered that if a certain condition is present, then the traditional chemo therapy (Fludarabine, Cytoxan and Rituxan) might not work as well and could be a waste of time and cause my body harm with no benefit. Then a different chemo would be done on top of that. These are fairly new research type tests and were not available in the general community at that time. (Now available through Quest Diagnostic labs in California – see clltopics.org Prognostic and Monitoring Tests for details.) Back then, they were only done at MD Anderson in our area. In talking with the doctor, he encouraged me to go to MD Anderson (in Houston), take the test and get a second opinion. Then I would return to him for the treatment. He said it would be OK to wait a month or two to begin treatment. If there had been 80 percent involvement or more, he said he would not want me to wait.

So, he sent all my test paperwork to MD Anderson and they were to get in touch with me in about two weeks to set up an appointment. I lost another 4-5 pounds that week, even though I didn’t want to. Hmm, I was wondering how much of that 75 lbs I had now lost was attributed to the hard work on my diet and how much to this disease? Guess I will never know that answer for sure. My guess is it was a little of both.

He said he would give me a copy of the tests, but by the time we got done talking and him explaining things, I forgot and so did he. When I got home, I noticed on the one piece of paper that I did have that under diagnosis was listed CLL with MDS. Great! MDS? I saw that somewhere in all my research, so back to the computer I went. I wasn’t real pleased with what I read, but thought, “Oh well, just one more item to the mix.” MDS is mylodyspastic syndrome = a group of blood and bone marrow disorders in which too few red blood cells (RBCs), white blood cells (WBCs), and/or platelets are made or when made have an abnormal appearance (dysplastic changes). These dysplastic cells do not function normally. Made sense to me since my platelets were low at that time.

In order to see how long I might have had this, Dr. Netaji wanted to get any past complete blood counts (CBC) from my primary care doctor so I went over to get them. Unfortunately, we really don't know how long I have had this because there have been no CBCs done in the last 8 or 9 years, since I have been going to him. That is the one thing I am upset about because blood was drawn on a minimum of every six month basis, but a simple CBC was never a part of the tests.

I thought I had totally accepted this disease the first week I knew about it, but after that appointment, I wasn’t sure. It seemed so much more real and more than a little scary. But I kept telling myself that it was OK to be nervous and a little scared. That's normal when ever we face tough things that are somewhat unknown and it didn’t mean my faith was any less real. I keep holding on to the example of my Dad and how he dealt with this and got through MANY more years than the average -- so I have good genes, right?

I think it was that night that I woke up shaking violently. I had dreamed that since the cancer was throughout my blood stream I should be able to vibrate it out through my skin as it circulated around my body. So I started shaking, er, vibrating, real hard to get those little cancer buggers out of my blood! Cheryl, once again, thought I had lost it!

Cheryl and the girls were doing pretty well--at least keeping a brave face around me. Cindy, my youngest, came over that night and told me that she and her husband had decided to send us to Hawaii before I started treatment and that they could get reservations for next week! Bless her heart! I have always wanted to go there, but now was not the time because I needed every bit of vacation time I had (and then some). I promised her that I would take them up on the offer when I went into remission after chemo. She wasn't happy, but accepted it. My youngest grandson, Jimmy, who was living in San Angelo at the time, asked me if I had lost my hair yet! Funny, since I am already bald on top. (Hmm, now I have an excuse to try a hairpiece?) My Mom, who had been visiting with us since January, told me she had a little over $2,000 in the bank that I could have if I needed it. Sigh, that is everything she has! My daughters and my one brother who is healthy and young enough, had already looked into being a bone marrow donor, if needed. (Siblings have the best chance of being a match and offspring rarely match.) I truly thank God for my family and the closeness we all enjoy because I sure can't see how anyone could go through this all alone! God and family, they are my strength.

Well, I said I would work on being less verbose. I should have known that wouldn’t work in one try. I teach the fact that change happens in small steps – LOL. Tomorrow I WILL get to the MD Anderson trip and tell you about a mistake in diagnosis that was made.

Thank you for caring.

P.S. There is another fellow I have been in touch with through this blog service. He has very advanced Prostate Cancer that was diagnosed 10 months ago. His name is David and I have promised to be praying for him. If you are so inclined, I would ask that you pray for him also. His blog is a terrific read as he so clearly pours out his heart and soul as he fights his battle. He has been an inspiration to me. You can read his blog at: http://prostatecancerat42.blogspot.com/ (One of these times I will figure out how to put a simple link in here - still learning)

Monday, December 05, 2005

Getting Closer to Diagnosis

Well, to pick up where I left off yesterday, I worked up to riding the stationary bike 30 minutes a day, most everyday. I was watching my diet very closely. I did attend a day-long diabetic nutrition class, which was very helpful and really taught me I could eat most anything, but in small amounts. But I knew what I had to avoid as much as possible. My blood sugar was dropping and approaching normal range when I tested it each morning. Most of the time when I tested it two hours after a meal, it was still too high, but getting better. Things were going well!

On the morning of August 12, 2004, I was on my way to work as usual about 6:45 a.m. I was on a four-lane highway with a turning lane in the middle that separated the four lanes. All of a sudden, I saw a car swerve out of the far on-coming lane of traffic and head right at me. I was traveling around 55 miles per hour. I steered the car to the left, closed my eyes and said, “I hope I miss him, I hope I miss him.” CRASH! Nope, didn’t miss him. He hit me head-on, but more toward the front passenger side. He bounced off of me and went into the lane to the right of me where a pickup truck hit him head-on, traveled up his hood and launched from the windshield and flew over the top of him. The car that hit us then spun off into a driveway opening that was the only opening between concrete barriers that were put up for construction work. An SUV then ran into the back end of the pickup that had just practiced flying. Fortunately, the car behind me stopped before hitting me. I jumped out, well, crawled out of my car and called 9-1-1. There were angels watching over us that morning because even though all four vehicles were totaled, especially the car that caused it all, we all walked away! The driver was getting off a night shift and had fallen asleep at the wheel!

Initially the only thing that hurt for me was my chest from the seat belt and air bag. Of course I went to the doctor to be checked out. When the doctor pushed on my back, I jumped. I didn’t realize I had hurt that too. Over the next few days, my back got worse and worse. And that was the end of the stationary bike riding.

I eventually started going to a chiropractor and then to physical therapy three to four times a week. The guy that caused the accident by taking a nap while driving, didn’t have auto insurance so everything was being taken care of under my uninsured motorist coverage. Whew, glad I had it! My back started to improve slightly around October. In mid October, I was coming out of physical therapy, was only a block away and sitting at a light, with my blinker on, waiting to turn left. I heard screeching of brakes and looked in my mirror just in time to see a car slam into me in my brand new Park Avenue (always wanted one)! I got out, said to the lady who hit me, “Sure hope you have insurance!” She assured me she did and even showed the police and me her insurance card. Yea, right! She didn’t! Her insurance had been canceled two months prior for non-payment. I have lived in Austin for ten years. I have been hit seven times, all but once I was standing still, and four times the driver didn’t have insurance, including the 18-wheeler that ran into the side of my car while I was stopped! Yes, Texas law does state you must have insurance, but what many people do is they sign up, get the card that says they have it, register their car, get it inspected but never make another monthly payment and then it gets canceled. They still carry the card so it looks like they have the insurance and thus avoid tickets! The law has to be revamped so insurance companies contact authorities when insurance lapses. OK, I will get off my soapbox now.

Well, now my wife drives the new Park Avenue since I seem to have a bull’s-eye target on my car. The car I am driving is ten years old, looks thirty and I want someone to hit it – but not with me in it. About a week ago, my wife and I were out driving in the Buick and she remarked that I had been accident free for over a year and maybe I should start taking the Buick to work (she doesn’t like it that well). Not thirty seconds later, a guy swerved into our lane and I had to veer onto the shoulder to avoid getting hit. Guess the good Lord just wants me to continue driving the old car.

Well, after the second accident, any progress that was being made with my back, now took ten steps backwards and now my sore neck was added to the mix. Again, my uninsured motorist coverage took over. Two different claims, but same basic injury, so it took some figuring out on their part on how to divide the bills between the two claims. It was still my insurance company, so I really didn't see why it mattered. My neck eventually started feeling better, but my back wasn’t. This January the physical therapy approval ran out but I was still having difficulty. In frustration, I went back to my doctor in February and said I had to do something else about my back. He ordered full neck and back x-rays (the first since the head-on collision), which showed deterioration along my spine and also arthritis at several sections of the spine. He then sent me to a back specialist. He sent me for more x-rays and an MRI or CT scan (can’t remember now which). That confirmed that I had arthritis and major deterioration in my spine. Most of my pain, at that time, was in my upper back and between my shoulder blades. He thought the majority of the pain should have been in my lower back. Oh well, yes it did hurt there but not as much as the upper part of my back. Anyway, from those tests he thought it looked a little suspicious and so he sent me for a bone density test. That test came back that I had fairly advanced osteoporosis. So, he gave an order for more physical therapy and sent me to an endocrinologist to try to figure out why I had severe osteoporosis at my relatively young age. I asked him why, if I had that going on with my back, I didn’t have any pain until the first accident. He said it was fairly common that serious trauma would finally get everything going and really aggravate a condition that was there all along.

I finally got in to see the endocrinologist in March and she ordered a ton of blood tests. When I went in for the results, she asked me if I had any infections going on when I had the blood drawn. I told her the last infection was a tooth infection back in January. She told me the tests indicated something was going on in my blood and my bone marrow. I told her my dad had passed away from leukemia and asked if this could be related? She never answered that question directly but instead she said she was going to send me to the best hematologist she knew to get a better diagnosis. She also drew more blood to run some confirmatory tests. She gave me a copy of the original tests along with the name of the hematologist so I could get my primary care doctor to get the referral (don’t you just love HMOs?). I took the test results, went back to my office and did a bunch of research on the Internet. I didn’t like what I was seeing. Everything seemed to boil down to either Leukemia or Multiple Myeloma (back pain one symptom of this), neither of which thrilled me. Cheryl, my wife, called me at work to see how my appointment with the endocrinologist went. She had a rare afternoon off and was home at the time. I simply said, “OK.” She immediately knew something was wrong and wanted to know what it was. I just kept telling her I would talk to her when I got home and ended the conversation as quickly as I could without being real rude. After about ten minutes, I realized I wasn’t going to get any work done and it wasn’t fair to leave her hanging like that, so I took the rest of the day off and headed home. I told her what happened at the doctor’s office and what I suspected. She said, “That’s what I was afraid of.” Amazing. She is so in tune with me and knows what I am thinking before I do!

When I got the referral to the hematologist, Dr. Bali Netaji, I didn’t even know what a hematologist was and failed to look it up on the Internet. I called to make the appointment and the receptionist asked me to bring the test results I had, over to the office before my appointment. So, a couple of days later, I headed over to his office. There on the door was stenciled “Southwest Regional Cancer Center.” I just stood there staring. This was real. This was real serious. Time for more real serious research on the Internet!

Cheryl went with me to see Dr. Netaji, something she never does. I didn’t object, something I would always have done. As we were walking into the building she asked me why I didn’t object and I told her if the roles were reversed, I sure would be going with her! I understood. (In fact, she has gone to each of my appointments since.) When we first got there, they drew five more tubes of blood, before I saw the doctor. When he came in, he examined me, asked a bunch of questions and then asked me what I thought was going on. I told him that from research I had done, I thought it was either leukemia or multiple myeloma. He said it wasn’t multiple myeloma, but he was pretty certain it was leukemia, and he suspected it was CLL, but more tests would need to be done to pin that down. He said the tests needed to be done in specific order so the insurance would pay. First would be more blood work, a complete body CT scan, and then a bone marrow biopsy and aspiration (taking out both bone marrow and a small core of bone for examination). I had already done a ton of research before the appointment and had lots of questions. (Thank you Chaya Venkat at clltopics.org !) Dr. Netaji patiently answered my questions. Many times I didn’t really understand my own question or his answer, but at least all the words were familiar because of what I had read at clltopics. I realized that I was going to have to get a quick medical education to keep up. Again, thank you Chaya and a wonderful listserve made up of over 2000 fellow CLL’ers and two wonderful professors/physicians who answer all our questions (see http://cll.acor.org/help.htm ) I think I am half way to a medical degree -- OK, maybe not, but I can hardly believe all I have learned in a few short months. The doctor told me that when it was time to treat he would use FCR, which is a triple combination consisting of Fludarabine, Cytoxan and Rituxan. Potent stuff. Although CLL is, arguably, incurable, the goal is to push it into remission for a couple of years and pray that it doesn't come out more aggressive.

I believe that God allows (not causes) some bad things to happen and He can use these for a specific purpose that we may never be aware of. Actually, if it hadn't been for the two car accidents, I don't know how long this would have gone undetected. I also believe strongly in the power of prayer and I have experience that power through the many prayers of many friends.

I do have to admit that this was a very confusing time for us. It wasn't until the night of this doctor's appointment that I began to feel a sense of panic or depression, although I think Cheryl went through this days earlier. I didn't sleep much that night and kept thinking about all the things I might miss out on by not growing to a ripe old age. Basically, it was a night of grieving. That next morning, I remembered what I had gone through with the diabetes diagnosis and realized what a waste of time that was. I had gotten a handle on the diabetes and had it very much under control and I was going to take charge of this dragon too, as much as possible. Just putting it into God's hands took away the fear. I can honestly say that since that night I have not felt fear. I remember describing those early days as being on a train speeding down the tracks, but I didn't know where the train was going. Do I still think about it a LOT? You bet I do! But, thinking about it without fear is much better. Do I have ups and downs? Sure do, but I consider myself very lucky. Well, this post has turned into a novel, so I will quit for this evening. I promise to get caught up to the current time frame real soon. Tomorrow I will tell you about the results of the first tests and my trip to MD Anderson. Stay tuned and thank you if you have read this far.