The "New Normal"

I said it to myself again today. “I wish I could feel normal again.” In reality, I have said that, or a variation of that phrase, many times throughout my life. When I was 12 years old, I had a severe case of infectious mononucleosis. In fact my doctor said he had never heard of anyone with a white cell count that high. My spleen was swollen and the lymph nodes around my neck and chin were huge. Anyone with CLL or some of the other blood cancers knows those are some of the same symptoms of those diseases. In fact, shortly before my CLL / SLL diagnosis I had been noticing the swollen neck nodes and the thought had briefly occurred to me that perhaps I had Mono again.

When I was 12, I was ill for nearly nine months, including throughout the entire summer months. Through my open windows the sounds of summer flooded my room and the summer breezes played with my bedroom window curtains. I could hear other kids laughing, playing and having a good time, but I couldn’t go outside and participate in the joys of summer. Sometimes I didn’t know if I had the strength to make the round trip from my bed to the bathroom right next to my bedroom. Later in the summer I spent a few days over at my older brother, Jim’s house. My sister-in-law, Barb, is a registered nurse and mom felt comfortable putting me in her hands. Barb placed a chair outside and I would sit in the sun and enjoy the warm, healing rays of the sun on my face. I would dream of going fishing in the creek not far from there and I just wanted to feel normal again. That next school year I missed over 90 days of school. I had work brought home to me and did school work in bed. When I started going back to school I remember some days feeling like I could barely make it through the day and I wanted to feel normal, like the other kids. Slowly I started getting stronger, but my doctor still didn’t want me taking part in gym class (PE). I think it was because of the spleen, but I am not sure. Then, when I was 14, I got Mono again! In fact, I got it again at 16, 18, 20, and around 22 when I was in the Air Force. Each time was not as severe as the time before and I didn’t feel as ill. I remember telling the AF doctor that I had Mono. He asked why I thought that and I told him how often I had been ill with it. He told me it was impossible as you could only get it one time. At my insistence he tested me and, yep, I had a mild case again. That was not the last time I had a doctor who was wrong. Through those teen and early 20 years, I had several other health problems and I remember the times when I was feeling down and wondering what it would be like to feel normal again.

But then, starting in my mid 20’s, I was really well for about twenty years! I WAS normal – well, health-wise, anyway. But, I don’t remember feeling grateful for feeling normal again. I took it for granted. Is that normal? So many times I had lamented not feeling well and there I was doing great and not rejoicing and savoring it. Perhaps I was just too busy living life, I don’t know. Oh, there was a lot I was savoring and rejoicing over. I marveled at the birth of our girls, basked in the love of our little family unit, and gloried in the beauty of God’s world as we lived in Germany and traveled throughout Europe from the Netherlands to Belgium to Austria to Switzerland to Italy. For part of the years we lived in Europe I worked on top of a mountain and never tired of the wonderful scenery that greeted me every day. I liked my job and felt I was truly making a difference. But, I don’t remember marveling at how well I felt during those years.

On the day of my 40th birthday, we discovered a heart problem. I remember joking that day with either the nurse or the doctor that I should have taken out the extended warranty on my body when I was a kid. If you do that on a car, it rarely breaks down, but if you don’t, it breaks down right after the regular warranty runs out. I spent months of being told not to climb steps unnecessarily and not to run for physical exercise. That also meant I had to walk for the military physical fitness tests. But instead of running a mile, I had to walk three miles in a certain amount of time, and it was a very brisk pace. I actually found it harder than running. Again, I was wondering what it would be like to feel normal again and wondering if I would. Well after about a year of trying different medications and different combinations of medicines the problem was pretty much under control. If I ever forgot to take the meds, I knew it within a few hours. Of course, like many meds they had their own side effects. But for the most part, I was feeling well again and I went back to taking life for granted.

About the time I retired from the Air Force, I started having trouble with my feet and legs hurting. Special inserts in the shoes and steroid shots in my heel helped but I still had some trouble walking without pain. Of course I started grumbling again, but even so I did feel well for the most part.

And then five years ago the big bombs started falling. First came the diagnosis of diabetes in April of 2004, then a bad traffic accident in August of 2004 with a resulting injured back, and then the CLL/SLL in March/April of 2005. Those were the head-spinning, emotional rollercoaster ride days. You can read all about that time in my life in the first several posts I made to this blog in November of 2005.

One word of counsel and encouragement that is often given on our support sites to folks newly diagnosed with this CLL is that even though it is difficult emotionally to come to terms with the diagnosis that eventually things will settle down. Yes, your life has changed forever, but you will eventually settle down into your “new normal.” The only problem I see is that we still occasionally mourn the loss of our old normal. At least I do.

So, what is this “new normal?” What does it mean? Actually it varies from person to person. Because just as this leukemia and/or lymphoma affects people very differently, the “new normal” depends on the impact the disease has on one’s life. For some it is many years of “watch and wait.” Watching the disease and waiting for it to progress. Many call it watch and worry. For some very fortunate folks it never does progress. For some folks I have known, the disease was so progressed at time of diagnosis that they had to start treatment immediately. Some who have done that were fortunate to go into a remission and go into a period of watch and wait for many years, but knowing always the day would come when the remission would be over.

I had eight rounds of treatment beginning a little less than a year after I was diagnosed. Although I didn’t reach remission, I have been in the Watch and Wait mode for almost three years now. Here are some of the things I see as now being normal for me:
* Doctor visits are a routine and regular part of my life
* Blood test results are extremely important and tell me how I “really” am doing, even though they only tell a small part of the story
* X-rays, other types of scans, and bone marrow biopsies to see what is going on inside because how I look on the outside has no bearing on what is really happening. People tell me all the time how well I look or say, “but you don’t look sick.”
* Feeling that slight rise in tension before monthly blood tests and doctor appointments when I know things are progressing but not knowing how much
* Fatigue! Needing naps during the day, often within an hour or two of waking up in the morning
* No stamina for doing any physical labor
* Constantly looking for any sign of infection
* Wondering if every new twinge, lump, pain, or hangnail has something to do with the cancer growing
* Obsessing over newly swollen nodes and wondering about their true meaning
* Watching for signs of illness in other people so I can avoid them
* Changing checkout lanes in the store if someone is coughing in line
* After church services remembering to wash my hands after shaking hands with lots of people who may have germs that wouldn’t harm someone with a normal immune system
* Knowing more chemotherapy is definitely in my future, but not knowing when
* Deciding what will be the best treatment when it is time to treat
* Thinking and praying about bone marrow/stem cell transplant and wondering if that is the way to go
* Being hesitant to commit to anything long term, not knowing if my health would allow it
* Sitting all day in the infusion chair every few weeks getting a boost to my immune system through the generous blood donations of thousands of other people (IVIg treatments)
* Wondering if all the huge weight gain is due to steroids and swelling internal lymph nodes or if it is just from overeating and sitting on my butt most of the day. Hmm, guess I probably know the main reason.
* "Chemo-brain" - having terrible short term memory (I came back and added this one several hours after I published this post!)
* Wondering why I keep getting this stupid itching on my legs that tries to make a comeback every few months. Sometimes explainable, most times not.
* Having great plans for everything I think I will accomplish tomorrow and then the reality of rarely even coming close to accomplishing it all
* Watching other people, whom I have felt close to through my Internet support sites, lose their battle with this disease and feeling the tremendous sense of sadness and loss
* Meeting so many wonderful, brave folks on those same support sites
* Learning to trust God more and learning over and over how to just put it all in His hands. Like a verse I studied last week when a father of a young boy came to Jesus for help, "I do believe; help me overcome my unbelief!" In other words, I do believe, but I know I don’t have total perfect faith and I have some doubts I must overcome with His help.

So, when I said today, “I wish I could feel normal again,” I am already feeling normal. Normal for me. Normal for right now. This is my new normal. Someday I may wish I had THIS normal back.

So, for all those folks who shake their heads and say about me, “He’s just not normal.” Yes I am!!

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.