The current treatment goal for CML is to reach a Major Molecular Response (MMR) within 18 months. MMR is achieved when pcr reaches 0.1% (1/1000 of 100%, also called a 3-log reduction). PCR measures how many of the tested white blood cells are leukemic.
At 21 months, my pcr was 0.3%, so I haven't reached MMR yet. I was thrilled with that result, though, because it's the lowest pcr I've had since since my diagnosis. My oncologist wasn't as excited as me about that result, so I have to have the test repeated in June and July.
I have been increasingly tired in the past two weeks or so, to the point that I can fall asleep in the middle of the afternoon while sitting up. I have a follow up appointment in June with Dr. Faust, the thyroid surgeon who did my biopsy last year, so my thyroid labs will be repeated then. Excellent timing, I think.
Sunday, May 19, 2013
Sunday, April 28, 2013
Grief, joy, and everything in between
Soon after I was diagnosed with leukemia, I started this blog. Everything was happening so fast, my emotions were all over the place. I wanted to get it all down in writing so I could remember events, details, feelings, and so on. After a few months, my treatment became pretty routine, so my updates became less frequent. In the middle of 2012, things became not-so-routine, but I couldn't bring myself to post an update. I no longer wanted to remember. I just wanted to pull the blankets over my head and stay in bed.
Psychologists and counselors generally agree that there are five stages of grief that people will experience after a major life change. Even good changes can cause grief because something has been lost or left behind. The stages are denial, anger, bargaining, depression, and acceptance.
On the same day I was diagnosed with CML, I was also told that CML is the most manageable type of leukemia, With treatment and a period of recuperation, I would be able to live a normal life. I could expect a normal or nearly normal life span. I will probably die of something other than CML. What was there to grieve about? I was giddy with relief.
Two days later, I was in the hospital wondering if this is the normal life my oncologist spoke of. No, it was simply part of the recuperation process. After a blood transfusion, my fevers stopped and I felt like a new person.
After a few weeks of taking it easy and napping frequently, I began regaining my physical strength. I had hours and then days and finally weeks without mental fog and I began to remember what normal felt like. November 2011 was a particularly good month and I thought my recuperation was nearly complete. In the last few days of November, I felt the fog coming over my brain again, but I thought it would lift in a few days, a few weeks at most. It didn't. It didn't lift for an entire year.
Thankfully, the firm I work for didn't hold me to the minimum tax season hours for the 2012 tax season. I worked as much as I could, but I didn't meet the minimum. After tax season, I didn't bounce back and regain my energy. Instead, I continued becoming more and more exhausted. By June, I was so tired I didn't want to get out of bed. Then I got mad. This life is not normal, and I may not be dying, but I still lost something to leukemia.
As my physical exhaustion increased, my mental reserves were shot. I couldn't cope with the simple ordinary stresses of life. I finally started seeing a therapist and our sessions helped me regain perspective, but my physical condition was continuing to deteriorate. I was so exhausted that I would hit the snooze button on my alarm clock repeatedly without ever hearing the alarm. Roger would try to wake me up but some mornings he couldn't. When I did wake up, I felt like I was underwater and had to fight my way to the surface. I had dreams of being submerged in water.
I realized I was back in the black hole I'd been in before my diagnosis. I was spending 10 hours at the office to work five. At the worst point, I worked at home because I knew that if I used any of my limited energy to shower and drive to the office, I wouldn't have any left to work; so I would work for two hours at home and then fall back into bed, physically, mentally, and emotionally spent. I kept thinking that I needed to read my disability policy, but I didn't have the energy to look for it. I started on a merry go round of doctor visits trying to find out what was causing my symptoms. I had thousands of dollars worth of bloodwork that found nothing specific. I discovered that I have a goiter and nodules on my thyroid, but my biopsy was negative and my labs, which were repeated several times, were all normal. My reflexes and sense of touch weren't working normally, but there was no explanation of WHY. One day, I met Roger and Katie for lunch after a doctor appt, and as we were finishing, I said that I felt a little more clear headed, and maybe I'd have a better day at work; as soon as the words were out of my mouth, I felt the fog come back over me and it was thick. It was literally a physical sensation even though no-one could find a physical cause for it. I was desperate to find something wrong so that it could be treated and I could feel better. I wanted to go on anti-depressants because I was so desperate to feel better, but I couldn't because we had to go through the process of ruling out every possible physical cause first.
Finally, in desperation, I said to my oncologist that I guess I just have to get used to being tired all the time with CML. He told me that's not true, he has other CML patients who feel great and are living normal lives. He didn't just tell me, "This isn't your CML," and send me on my way. Instead, he sat with me and talked about other possible causes, my personal and family health history, and the risks and benefits of hormone therapy. He is an incredibly intelligent man who has not only an MD but also a PhD and people who work with him call him a genius; but he's also incredibly compassionate and caring. That day, my hope was renewed.
As the weeks progressed, I gradually regained my strength again. One day in the middle of December, I realized that I felt completely normal. I no longer had brain fog, I could hear my alarm clock and wake up in the morning, and I found myself running up and down the stairs at work again. Those sound like such little things, but they are markers of normalcy. When I was first diagnosed and treated, one of the first things Roger noticed was that I was bouncing up the stairs instead of stopping on the landing halfway up to catch my breath. Nearly two years later, it still feels like a miracle when I catch myself running on the stairs.
When I realized how normal I felt in December, I started to wonder if I could work full time again. One part of me said that perhaps I should give myself another year to see if this was going to last. Another part of me said that so many people have been praying for my recovery, and I've been telling them that I want to feel good enough to work full time again. (Even though I'd been working part time for several years before my diagnosis, I had always expected to return to work full time when Rachel started college.) God answered all those prayers, and it felt wrong to ignore that. So, I took a huge leap of faith and started working full time on January 1.
I had one day in early January when I felt the old sluggishness and it scared me. I was nervous about pushing myself too hard and ending up in a black hole again. But as tax season continued, I was forced to push myself harder and harder, and fortunately, I did not relapse. I worked four straight months of more than 200 hours each (some months, well over 200 hours), and I worked an 80+ hour week for the first time in several years. I not only met the minimum hours requirement, I exceeded it. If that wasn't enough proof of my recovery, I drove to Maryland on April 16 to be with my mother for surgery on April 18. Psalm 30:5 says that weeping may remain for a night, but rejoicing comes in the morning. Every day that I feel normal, that I have energy, that I don't have brain fog, feels like a miracle.
I had blood drawn last week for my 21 month check up, and I will get the results on May 8. So I'll post another update soon.
Psychologists and counselors generally agree that there are five stages of grief that people will experience after a major life change. Even good changes can cause grief because something has been lost or left behind. The stages are denial, anger, bargaining, depression, and acceptance.
On the same day I was diagnosed with CML, I was also told that CML is the most manageable type of leukemia, With treatment and a period of recuperation, I would be able to live a normal life. I could expect a normal or nearly normal life span. I will probably die of something other than CML. What was there to grieve about? I was giddy with relief.
Two days later, I was in the hospital wondering if this is the normal life my oncologist spoke of. No, it was simply part of the recuperation process. After a blood transfusion, my fevers stopped and I felt like a new person.
After a few weeks of taking it easy and napping frequently, I began regaining my physical strength. I had hours and then days and finally weeks without mental fog and I began to remember what normal felt like. November 2011 was a particularly good month and I thought my recuperation was nearly complete. In the last few days of November, I felt the fog coming over my brain again, but I thought it would lift in a few days, a few weeks at most. It didn't. It didn't lift for an entire year.
Thankfully, the firm I work for didn't hold me to the minimum tax season hours for the 2012 tax season. I worked as much as I could, but I didn't meet the minimum. After tax season, I didn't bounce back and regain my energy. Instead, I continued becoming more and more exhausted. By June, I was so tired I didn't want to get out of bed. Then I got mad. This life is not normal, and I may not be dying, but I still lost something to leukemia.
As my physical exhaustion increased, my mental reserves were shot. I couldn't cope with the simple ordinary stresses of life. I finally started seeing a therapist and our sessions helped me regain perspective, but my physical condition was continuing to deteriorate. I was so exhausted that I would hit the snooze button on my alarm clock repeatedly without ever hearing the alarm. Roger would try to wake me up but some mornings he couldn't. When I did wake up, I felt like I was underwater and had to fight my way to the surface. I had dreams of being submerged in water.
I realized I was back in the black hole I'd been in before my diagnosis. I was spending 10 hours at the office to work five. At the worst point, I worked at home because I knew that if I used any of my limited energy to shower and drive to the office, I wouldn't have any left to work; so I would work for two hours at home and then fall back into bed, physically, mentally, and emotionally spent. I kept thinking that I needed to read my disability policy, but I didn't have the energy to look for it. I started on a merry go round of doctor visits trying to find out what was causing my symptoms. I had thousands of dollars worth of bloodwork that found nothing specific. I discovered that I have a goiter and nodules on my thyroid, but my biopsy was negative and my labs, which were repeated several times, were all normal. My reflexes and sense of touch weren't working normally, but there was no explanation of WHY. One day, I met Roger and Katie for lunch after a doctor appt, and as we were finishing, I said that I felt a little more clear headed, and maybe I'd have a better day at work; as soon as the words were out of my mouth, I felt the fog come back over me and it was thick. It was literally a physical sensation even though no-one could find a physical cause for it. I was desperate to find something wrong so that it could be treated and I could feel better. I wanted to go on anti-depressants because I was so desperate to feel better, but I couldn't because we had to go through the process of ruling out every possible physical cause first.
Finally, in desperation, I said to my oncologist that I guess I just have to get used to being tired all the time with CML. He told me that's not true, he has other CML patients who feel great and are living normal lives. He didn't just tell me, "This isn't your CML," and send me on my way. Instead, he sat with me and talked about other possible causes, my personal and family health history, and the risks and benefits of hormone therapy. He is an incredibly intelligent man who has not only an MD but also a PhD and people who work with him call him a genius; but he's also incredibly compassionate and caring. That day, my hope was renewed.
As the weeks progressed, I gradually regained my strength again. One day in the middle of December, I realized that I felt completely normal. I no longer had brain fog, I could hear my alarm clock and wake up in the morning, and I found myself running up and down the stairs at work again. Those sound like such little things, but they are markers of normalcy. When I was first diagnosed and treated, one of the first things Roger noticed was that I was bouncing up the stairs instead of stopping on the landing halfway up to catch my breath. Nearly two years later, it still feels like a miracle when I catch myself running on the stairs.
When I realized how normal I felt in December, I started to wonder if I could work full time again. One part of me said that perhaps I should give myself another year to see if this was going to last. Another part of me said that so many people have been praying for my recovery, and I've been telling them that I want to feel good enough to work full time again. (Even though I'd been working part time for several years before my diagnosis, I had always expected to return to work full time when Rachel started college.) God answered all those prayers, and it felt wrong to ignore that. So, I took a huge leap of faith and started working full time on January 1.
I had one day in early January when I felt the old sluggishness and it scared me. I was nervous about pushing myself too hard and ending up in a black hole again. But as tax season continued, I was forced to push myself harder and harder, and fortunately, I did not relapse. I worked four straight months of more than 200 hours each (some months, well over 200 hours), and I worked an 80+ hour week for the first time in several years. I not only met the minimum hours requirement, I exceeded it. If that wasn't enough proof of my recovery, I drove to Maryland on April 16 to be with my mother for surgery on April 18. Psalm 30:5 says that weeping may remain for a night, but rejoicing comes in the morning. Every day that I feel normal, that I have energy, that I don't have brain fog, feels like a miracle.
I had blood drawn last week for my 21 month check up, and I will get the results on May 8. So I'll post another update soon.
Friday, May 25, 2012
Nine month check up
I had my nine month check up a few weeks ago. Yes, I am delinquent in posting the results. My pcr, which measures the number of leukemic white blood cells, is down to 0.5% on the International Scale. It is 0.2% on the Mayo Clinic lab's scale, but I like the International Scale because it is simple. Everyone's starting point is 100%, a one-log reduction is 10%, a two-log reduction is 1%, and a three-log reduction is 0.1%. I don't need a book, computer, excel spreadsheet, or even an adding machine to understand that. So, 0.5% is a 2 1/2 log reduction, which means I have probably achieved a Complete Cytogenetic Response (CCyR). CCyR means that if we were using FISH instead of pcr, I would not have any leukemic cells. FISH is a less sensitive test than pcr. Many doctors still use FISH until the number of leukemic cells is too small to be measurable by FISH, then switch to pcr. However, many oncologists, including mine, are no longer using FISH after diagnosis. CCyR can only be confirmed by bone marrow biopsy, but fortunately, my oncologist doesn't believe in doing more of them than necessary. Achieving CCyR is the most important marker for long term survival, so this was good news! The next goal is MMR, major molecular response, or a 3-log reduction. Achieving MMR within 12-18 months of diagnosis is not necessarily associated with better survival rates than achieving CCyR without MMR, but it is associated with higher rates of progression free survival (PFS) and event free survival (EFS). In other words, my long term quality of life may be improved if I achieve MMR within the next nine months.
Meanwhile, my hemoglobin and red blood cells are continuing to decline. I believe this affects my fatigue levels, because when my hgb and rbc were normal in November, I felt fabulous. They've been declining ever since. We've ruled out low iron, low B12, and low thyroid. The remaining possibilities are a blood disorder unrelated to CML, or a toxicity effect of my CML medicine. Too much medicine built up in my system is the most likely culprit, but if the numbers are still declining at my next appointment, I will probably have a bone marrow biopsy to rule out a blood disorder. I admit, I'm curious about whether multiple blood disorders and cancers are likely to occur in the same person, but I certainly hope I don't have yet another disorder. I had HELLP syndrome with two of my pregnancies, and one of the elements of that is destruction of red blood cells. I have met another person who also had HELLP syndrome with two pregnancies, and now has CML. Maybe there's no connection, but I should ask my oncologist whether the question has ever been raised or studied. Assuming my medicine is the cause of my anemia, my oncologist has suggested that we change medicines. I am hesitant to change because I don't want to have to deal with the adjustment and possibly a new set of side effects. If my pcr continues to drop with Tasigna, I might ask if we can lower my dose rather than changing medicines. Dosage adjustment is more common with the other TKIs than Tasigna, but it's not unheard of with Tasigna, so I think we should at least consider that option since my other side effects have subsided and the anemia is my only ongoing issue with Tasigna.
In non-cancer news, Rebekah turned 16 this week! I still remember when she turned 10, she said she didn't want to be double digits. She enjoyed being a child and wasn't in a rush to grow up like most kids, but nevertheless she has grown into an amazing young woman. She is the most honest, trustworthy, loyal person I know. She doesn't like to draw attention to herself; she just quietly goes about life doing the right thing. Her name means captivating, and it is fitting because she is beautiful inside and out. She participated in Spring Fling this month, her theater class's spring performance, and did a great job.
Rachel's high school graduation is just two weeks away! It's hard to believe she will be moving to college soon. She is so excited to go to college, and we are excited to see her entering this next stage of life. She is a hard worker and we know she will meet the challenges of college head-on.
Katie had two piano recitals this month and her dance recital is coming up at the end of June. Her dance school has a new teacher from England. He was in Riverdance for three years and holds numerous championship titles, so we are excited to have him on board.
We will be traveling to MD for my family reunion on June 16. We can't wait to see everyone!
Meanwhile, my hemoglobin and red blood cells are continuing to decline. I believe this affects my fatigue levels, because when my hgb and rbc were normal in November, I felt fabulous. They've been declining ever since. We've ruled out low iron, low B12, and low thyroid. The remaining possibilities are a blood disorder unrelated to CML, or a toxicity effect of my CML medicine. Too much medicine built up in my system is the most likely culprit, but if the numbers are still declining at my next appointment, I will probably have a bone marrow biopsy to rule out a blood disorder. I admit, I'm curious about whether multiple blood disorders and cancers are likely to occur in the same person, but I certainly hope I don't have yet another disorder. I had HELLP syndrome with two of my pregnancies, and one of the elements of that is destruction of red blood cells. I have met another person who also had HELLP syndrome with two pregnancies, and now has CML. Maybe there's no connection, but I should ask my oncologist whether the question has ever been raised or studied. Assuming my medicine is the cause of my anemia, my oncologist has suggested that we change medicines. I am hesitant to change because I don't want to have to deal with the adjustment and possibly a new set of side effects. If my pcr continues to drop with Tasigna, I might ask if we can lower my dose rather than changing medicines. Dosage adjustment is more common with the other TKIs than Tasigna, but it's not unheard of with Tasigna, so I think we should at least consider that option since my other side effects have subsided and the anemia is my only ongoing issue with Tasigna.
In non-cancer news, Rebekah turned 16 this week! I still remember when she turned 10, she said she didn't want to be double digits. She enjoyed being a child and wasn't in a rush to grow up like most kids, but nevertheless she has grown into an amazing young woman. She is the most honest, trustworthy, loyal person I know. She doesn't like to draw attention to herself; she just quietly goes about life doing the right thing. Her name means captivating, and it is fitting because she is beautiful inside and out. She participated in Spring Fling this month, her theater class's spring performance, and did a great job.
Rachel's high school graduation is just two weeks away! It's hard to believe she will be moving to college soon. She is so excited to go to college, and we are excited to see her entering this next stage of life. She is a hard worker and we know she will meet the challenges of college head-on.
Katie had two piano recitals this month and her dance recital is coming up at the end of June. Her dance school has a new teacher from England. He was in Riverdance for three years and holds numerous championship titles, so we are excited to have him on board.
We will be traveling to MD for my family reunion on June 16. We can't wait to see everyone!
Monday, March 26, 2012
Cancer Symptoms Women are Most Likely to Ignore
You might remember from my early posts that I had symptoms that I should have been concerned about before my diagnosis. This link spells out many symptoms that can signal cancer, but may be ignored. Please see your doctor if you are experiencing symptoms from this list. Even if you have no unusual symptoms, everyone should have an annual physical that includes a CBC.
Sunday, March 4, 2012
A break from tax season
Tax season is more than halfway over! I took a break from the insanity today and had a Date Night with my wonderful husband. Before we moved to NC, a client told me that Shuckers has good seafood. Baltimoreans are very particular about our seafood, so we kept Shuckers in mind for those times when we are craving some good seafood. After living here nearly 13 years, we finally went to Shuckers this evening and had lobster tails and raw oysters. It's not that we haven't had seafood cravings since we moved here. But we usually just wait until we visit Baltimore to fill them. A couple years ago, a Maryland family opened Backfins in Wake Forest, and we've enjoyed their steamed crabs and crabcakes several times. So did we like Shuckers? Yes, we did. I think we'll be going there again in the future, and maybe we won't wait 13 years this time.
Saturday, February 18, 2012
Almost halfway through tax season...
Seven weeks down, nine to go!
On January 25, I got my 6-month results. I was half expecting bad news because of the way I've been feeling, but my pcr was 0.6%, down from 2.4% at 3 months! What a relief to see that number going down! The doctor was concerned with my fatigue levels, so I had extra blood drawn to check my thyroid and iron levels. Both are normal. My hemoglobin is a little low, so that is probably the culprit.
On January 25, I got my 6-month results. I was half expecting bad news because of the way I've been feeling, but my pcr was 0.6%, down from 2.4% at 3 months! What a relief to see that number going down! The doctor was concerned with my fatigue levels, so I had extra blood drawn to check my thyroid and iron levels. Both are normal. My hemoglobin is a little low, so that is probably the culprit.
Tuesday, December 27, 2011
Our Christmas Letter
December 25, 2011
Now that Christmas is here, I suppose I should get our letter written and cards in the mail! The past year has been a wild ride with many ups and downs!
Rachel has been accepted to UNCG – University of North Carolina at Greensboro. She called me in tears when she received her first scholarship letter. She is very excited about attending college and beginning her adult life. She teaches 2nd grade Sunday School at church and serves on the Student Leadership Team for the youth group. She works very hard in school and is a member of the National Latin Honor Society and National Art Honor Society.
Rebekah is a sophomore and beginning to think about college. She wants to be a writer and editor. She is a creative, imaginative writer. She enjoys spending time with her friends and being a part of the church youth group.
Katie is in 5th grade and is still homeschooled. She enjoys playing the piano and Irish dancing. There is an Irish pub in Raleigh where her dance academy performs about once a month. She competed in feises (pronounced feshes) in Raleigh and Charleston this year where she won several medals. She was very excited to start hard shoe dances a few months ago.
Roger continues to hold down the fort at home and run the girls to school and their activities. He has also done quite a bit of carpentry work this year which has allowed him to add a few things to his power tool collection. :-)
We were blessed to go home (Accident, MD) in June for the family reunion. Thank you to my sisters Dorothy and Juanita for making this an annual event! In September, we spent a few days in Myrtle Beach while Rachel and Rebekah were tracked out of school. It was still warm enough to get in the water and lie on the beach, but there were few people there. It was a very relaxing vacation! We spent Thanksgiving in Baltimore where many family members gathered at Dorothy's house. We enjoyed visiting the Baltimore Aquarium and eating dinner in Little Italy the Saturday after Thanksgiving. Roger also enjoyed fishing in the Gunpowder River.
Most of you receiving this letter know that I was diagnosed with chronic myelogenous leukemia on June 30 following a routine physical. I went from shock and fear at being told, “we think it's a leukemia type thing,” to giddy relief when told that the type of leukemia I have is the most treatable type, to despair when admitted to the hospital two days later, to joy at being told I could return to work and “live your life,” to disappointment when realizing how much leukemia affects my daily life in spite of being treatable and manageable. The roller coaster is beginning to level off as I adjust to living with CML. I was told that a time would come when every waking moment would not be filled with, “Oh my gosh, I have cancer!” Now that I'm reaching that point, I'm finding it difficult to remember to take my medicine. :-) It's always something, eh? If you want to read the details of the past six months and follow my future progress, I have a blog at www.myleukemiajourney.blogspot.com.
We are thankful for the many blessings we have experienced in 2011. We have felt God's presence during the valleys as well as the mountaintops. So many friends and family have supported us with meals, prayers, cards, and encouraging words. We wish all of you a happy, joy-filled 2012.
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