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!!
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Saturday, June 06, 2009
Tuesday, March 24, 2009
Happy Canciversary To Me
I am celebrating my fourth anniversary since diagnosis with CLL/SLL. Now to some folks it may seem strange I would celebrate my Canciversary. However I think every year we survive and can note the date is reason for celebrating. Actually looking forward to celebrating my 20th Canciversary as my Dad did before he died as a result of CLL (and a very bad heart).
To celebrate this anniversary, I have updated the look of my blog. However, in doing so, I lost some links to blogs I was following. Sure hope I can find them again. However, I have added a few new ones I have been reading, but did not have on my list here. You can find them over on the left.
Looking back over the last four years, much has happened since that day in March when Cheryl and I, hand in hand, walked out of Dr. Netaji's office with the confirmed diagnosis. It was a bright sunny day, much like it was here all last week and our heads were spinning, even though we had suspected what the final word would be. It wasn't quite the same suspecting it as actually hearing it. I remember feeling slightly surprised that the world was just going on as normal when ours had been changed forever. I guess I was expecting to walk out to dark storm clouds, flashing lightning and all traffic and movement stopped. That's what it seemed like in my mind. However, that darkness lifted after that first night of prayer. Not to say that the head spinning didn't keep going for a few months as we continued to learn more about the disease.
So what has happened in the last four years?
--I have felt the presence of the Lord with me during this journey
--I experienced the wonderful support and encouragement of family and friends, including friends I hadn't heard from for many years
--I have experienced the power of prayer and intercessory prayer that I had only heard about previously
--I have made many new cyber friends who are surviving CLL and other cancers
--Some of these cyber friends I have since met in person and without exception they were all exceptional people; Dave E, Deb and her mom, Paul, Anita, Tom and JL
--Unfortunately I have lost way too many cyber friends to this disease over these four years; too many and too sad to post all their names, but each had a unique story of courage
--I have had three bone marrow biopsies *** YIKES***
--Numerous infections including lots of sinus infections, teeth, pneumonia several times, E. coli infection in lungs, strange rashes and itching, and other stuff I may have tried to forget
--I have seen my primary care doctor, endocrinologist, hematologist/oncologist, CLL specialist, cardiologist, neurologist, pulmonologist, surgeon, dentist, oral surgeon, endotontist, optometrist and perhaps others
--Chemo port implanted in my chest
--Extensive dental surgery
--Eight rounds of chemotherapy with mustard gas derivative alkylating agent, mouse parts and lots of high dose Prednisone
--Sixteen (I think) day-long IVIg infusions with steroids
--Discovered I have some of the best insurance coverage around for which I am very thankful
--Many steroid induced sleepless nights
--Way too many steroids. Just thinking about it may put me into roid rage :-)
--Bucket list trips to the Grand Canyon and an ocean cruise to Progresso and Cozumel, Mexico; thanks to my daughters!
--I retired from a job I really liked (I have liked all but one of my jobs in my whole working life)
--I was approved for Social Security Disability
--I got handicap plates on my car
--My back continues to deteriorate
--Have gained sixty pounds now since starting chemo a little over three years ago
--I experienced the wonderful support and encouragement of family and friends, including friends I hadn't heard from for many years
--I have experienced the power of prayer and intercessory prayer that I had only heard about previously
--I have made many new cyber friends who are surviving CLL and other cancers
--Some of these cyber friends I have since met in person and without exception they were all exceptional people; Dave E, Deb and her mom, Paul, Anita, Tom and JL
--Unfortunately I have lost way too many cyber friends to this disease over these four years; too many and too sad to post all their names, but each had a unique story of courage
--I have had three bone marrow biopsies *** YIKES***
--Numerous infections including lots of sinus infections, teeth, pneumonia several times, E. coli infection in lungs, strange rashes and itching, and other stuff I may have tried to forget
--I have seen my primary care doctor, endocrinologist, hematologist/oncologist, CLL specialist, cardiologist, neurologist, pulmonologist, surgeon, dentist, oral surgeon, endotontist, optometrist and perhaps others
--Chemo port implanted in my chest
--Extensive dental surgery
--Eight rounds of chemotherapy with mustard gas derivative alkylating agent, mouse parts and lots of high dose Prednisone
--Sixteen (I think) day-long IVIg infusions with steroids
--Discovered I have some of the best insurance coverage around for which I am very thankful
--Many steroid induced sleepless nights
--Way too many steroids. Just thinking about it may put me into roid rage :-)
--Bucket list trips to the Grand Canyon and an ocean cruise to Progresso and Cozumel, Mexico; thanks to my daughters!
--I retired from a job I really liked (I have liked all but one of my jobs in my whole working life)
--I was approved for Social Security Disability
--I got handicap plates on my car
--My back continues to deteriorate
--Have gained sixty pounds now since starting chemo a little over three years ago
--Five wonderful annual "John's Not Dead Yet" luncheons with former coworkers from probation training (Well they call it "The Friends of John" luncheon, but I know the truth! LOL!)
--Fishing with my grandsons
--Movie dates with my granddaughter
--Babysitting my youngest grandson
--Middle school grandson living with us during school year (and behaving VERY well now at home and at school)
--Fishing with my grandsons
--Movie dates with my granddaughter
--Babysitting my youngest grandson
--Middle school grandson living with us during school year (and behaving VERY well now at home and at school)
--Cheryl has survived multiple lay-offs at her work in the housing construction industry. She was told after the last round that they could never afford to lose her when she tried to volunteer to take the place of a young man with small children who was laid off
--Being a house husband but one who HATES to dust for some reason; cooking, laundry, vacuuming no problem but always run out of steam when it comes time to dust (blog post for that solution coming soon - written in my head weeks ago)
--Being a house husband but one who HATES to dust for some reason; cooking, laundry, vacuuming no problem but always run out of steam when it comes time to dust (blog post for that solution coming soon - written in my head weeks ago)
I'm sure as soon as I post this I will think of other things, but it is 2:00 a.m. and after day long IVIg infusion today, the old mind isn't too sharp. Of course it isn't all that sharp at 2 p.m., either. I will probably still be awake when Cheryl gets up for work because the steroid infusion that goes along with the IVIg always has me wired all night.
Speaking of the infusion, it was an unusual day in the chemo room. In the main area where I sit, always next to the window, there are six infusion chairs - three on each side of the room. It was a little unusual in the fact that there was a lady who was there when I came in and who was still there when I left. Usually I am the first one to arrive and the last to leave. Secondly, in the remaining four chairs, thirteen people came and went during the day. All but one were women. All were in relapse from their cancer. Two were undergoing chemo and radiation. One had radiation burns after 32 rounds of radiation. All but three of the ladies were bald and each had a wonderful hat, colorful turbin or beautiful scarf wrapped around her head. One lady was in terrible pain. One lady was very sick to her stomach. One lady's treatment isn't working and the tumor is inoperable. One lady's son surprised her last week when he showed up on her doorstep from Japan. He is in the Army and was coming back to the states for a short trip to another state for the military. He is a helicopter gunner and was in Afghanistan and will be going back after his tour in Japan. She cried. All seemed optimistic. I prayed for all of them.
I got home at five.
I just prayed for them again.
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!
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.
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)
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.
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.
Subscribe to:
Posts (Atom)