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 !) 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 ) 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.


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