tag:blogger.com,1999:blog-72982946300913992024-03-06T15:02:47.750-05:00My Leukemia JourneyElizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-7298294630091399.post-17269209717554155582013-05-19T21:41:00.000-04:002013-05-19T21:41:28.060-04:00My 21-month resultsThe 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.<br />
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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. <br />
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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. Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com1tag:blogger.com,1999:blog-7298294630091399.post-55722182910484709302013-04-28T23:21:00.001-04:002013-04-29T00:09:30.512-04:00Grief, joy, and everything in betweenSoon 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.<br />
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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.<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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. <span style="font-family: inherit;"><span style="font-size: small;">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. </span></span><br />
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<span style="font-family: inherit;"><span style="font-size: small;">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.</span><span style="font-size: small;"> </span></span>Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com6tag:blogger.com,1999:blog-7298294630091399.post-45635252193165646382012-05-25T13:04:00.002-04:002012-05-25T13:04:30.043-04:00Nine month check upI 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.<br />
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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.<br />
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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. <br />
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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.<br />
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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. <br />
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We will be traveling to MD for my family reunion on June 16. We can't wait to see everyone!Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com6tag:blogger.com,1999:blog-7298294630091399.post-23307804316613042772012-03-26T18:23:00.005-04:002012-03-26T21:55:57.404-04:00Cancer Symptoms Women are Most Likely to IgnoreYou might remember from my early posts that I had symptoms that I should have been concerned about before my diagnosis. This <a href="http://www.caring.com/articles/cancer-symptoms-in-women" target="_blank">link</a> 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.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-37258817214829806552012-03-04T00:44:00.000-05:002012-03-04T00:44:19.203-05:00A break from tax seasonTax 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.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-8655819573552463382012-02-18T02:38:00.000-05:002012-02-18T02:38:39.913-05:00Almost halfway through tax season...Seven weeks down, nine to go!<br />
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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. Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-43996897615761978002011-12-27T12:57:00.000-05:002011-12-27T12:57:16.359-05:00Our Christmas Letter<style type="text/css">
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<div style="margin-bottom: 0in;">December 25, 2011</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">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!</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">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 2<sup>nd</sup> 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.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">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.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">Katie is in 5<sup>th</sup> 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.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">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. :-) </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">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. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">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 <a href="http://www.myleukemiajourney.blogspot.com/">www.myleukemiajourney.blogspot.com</a>.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">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.</div>Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com2tag:blogger.com,1999:blog-7298294630091399.post-53212205434520015832011-12-24T16:50:00.000-05:002011-12-24T16:50:12.710-05:00A long overdue update...November was my best month so far and hopefully more months like that will be in my future. I felt <i>normal </i>for most of the month. I traveled three times (to Washington DC for a tax conference, to Charleston, SC for Katie's dance competition, and to Baltimore for Thanksgiving with family) and didn't feel worn out from it. <br />
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On November 29, I felt myself beginning to spiral down. During December, I have felt tired and sluggish, and I have struggled to be productive at work. "Cancer fatigue" is different from normal fatigue in that coffee, vitamins, and rest do not offer a reprieve. I am thankful that I am not experiencing pain, nausea, and other symptoms that often come with cancer and its treatment. But I do get frustrated when I can't be productive or do all the things I'd like to do. <br />
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Sometimes I think that Roger will think I'm just being lazy and not wanting to help around the house, but he often tells me that I sound or look tired before I say anything about how I'm feeling. He encourages me to take it easy and get more rest. I am thankful that he is understanding and supportive. <br />
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We are blessed to see how God provides for us in spite of my struggles. As most of you reading this know, I am the breadwinner for our family. But in months that I've struggled and my hours were low, a carpentry job seems to drop in Roger's lap and he is able to make up the shortfall. <br />
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My monthly doctor appointments have become rather routine. My blood counts have been stable for several months now. In January, I will have my six-month appointment, so that one is a bigger deal. I will have my pcr checked again, and we really want to see a decrease this time.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com2tag:blogger.com,1999:blog-7298294630091399.post-13363522787745845242011-11-14T23:05:00.000-05:002011-11-14T23:05:13.984-05:00Good news, bad newsOn October 28, I had my blood draw for my 3-months-on-Tasigna bloodwork. I had to wait until November 10 for the results, but I was so busy during the wait that I didn't have time to worry about the results. I've been busy at work, and I went to Washington, DC November 6-9 for a tax conference. Yes, it was as exciting as it sounds!<br />
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First, the bad news:<br />
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My pcr went up from 1.8% on September 28 to 2.4% on October 28. Pcr measures the number of cancerous white blood cells, so you always want to see that number decreasing. A three log decrease (1/1000 of the percentage at diagnosis) or .01% on the International Scale is considered a major molecular response (MMR). Even better and what every CML patient hopes for is PCRU - pcr undetectable. Now, I didn't expect MMR or PCRU after only 3 months of treatment, but I didn't expect to see the number increasing, either. I was very disappointed even though my oncologist assures me that it is a minor fluctuation and not something to worry about.<br />
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The more minor bad news is that the internet was going in and out while I was at the doctor's office, so the doctor didn't have access to all of my lab reports. I think the reason he had my pcr results is because they are done by the Mayo Clinic, so the results get faxed and there is a paper copy. All of my other labs are done in-house.<br />
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On to the good news:<br />
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The three month treatment goal is a complete hemotological response, which I have achieved. This means:<br />
1) My white blood cells are below 10k.<br />
2) My platelets are below 450k.<br />
3) I have no blasts in my peripheral blood.<br />
4) My spleen has returned to normal size.<br />
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My hemoglobin was 12. Normal is 12-15. YAY! Having normal hemoglobin should help somewhat with my fatigue levels.<br />
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My white blood cells are low, but the doctor didn't have the exact number. Apparently, they are above 1k, because if they drop to 1k or below, I have to take a break from my medicine for a few weeks.<br />
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In non-cancer news, we spent the past weekend in Charleston, SC where Katie competed in the Lowcountry Feis. A feis is an Irish dancing competition. She came away with a 3rd place medal and 2 first place medals. She was finished by lunch time, so we spent the afternoon sight seeing in Charleston. We rode a ferry to visit Fort Sumter and ate some great seafood at the Charleston Crabhouse.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-62664730887076965182011-10-22T19:44:00.000-04:002011-10-22T19:44:02.644-04:00October update...On the way back from the beach on Sept 28, I was very nauseous. We stopped at Sonic for lunch, which is usually not the best place to go when you're nauseous, but our options were limited since we were traveling and needed to make it home in time for my doctor appointment. I ordered a chili cheese dog, of all things. For some reason, it was the only thing on the menu that appealed to me even though I'd never eaten a chili cheese dog in all my life before then. After I ate, the nausea subsided and I didn't give it another thought. <br />
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That evening after my doctor appointment, the nausea returned. The next morning, it was pretty bad, so I took 1/2 of a phenergan, thinking that maybe it would be enough to get rid of the nausea without making me need a nap. It didn't help the nausea and it did make me sleepy, so I had a pretty miserable day at the office. That evening as I was driving home, I was feeling sick again, but I noticed that I was having upper abdominal pain rather than nausea. When I got home, Katie said, "Mama, my stomach hurts really bad." I thought to myself, "Oh good. That means I just have that virus that's going around." By bedtime, Roger was also complaining of nausea.<br />
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Friday on the way to work, I was having severe pain, so I thought maybe I should call the doctor. My oncologist doesn't have office hours on Fridays and the nurse practitioner was leaving at noon and had a full schedule until then, but I really thought I just had a virus, so I wasn't concerned about not being seen. The pain continued sporadically through the weekend. The most annoying part was being awakened by pain in the middle of the night and not being able to get back to sleep. I took phenergan two nights just to get back to sleep, but I wasn't really comfortable taking it for pain rather than nausea. <br />
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The following week, I started getting concerned because Roger and Katie's symptoms subsided within 24 hours while mine lingered. Roger kept telling me to call the doctor, and I kept saying it was probably nothing and besides, I don't have time to go to the doctor because it's fall tax season (Individual tax extensions expired on October 17.) By Friday, I decided maybe I should call before the weekend. So I called and got an appointment with the nurse practitioner. She said that abdominal pain can be a side effect of Tasigna that occurs between one and six months and usually goes away within a few weeks. But she took bloodwork to check my liver and kidney function and arranged an ultrasound for Monday morning to make sure there was no organ involvement. I had a follow up appointment on October 18, and all the tests were normal. The pain went away within a couple of days after the initial appointment, just like the NP said it might. I hope that's one side effect that doesn't return!<br />
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I had a couple weeks of being tired and feeling run-down the last half of September, but the first two weeks of October were great. I worked 33 hours the first week and 47 the second week, both of which were more than I had worked in a week since tax season. Maybe the stress of fall tax season boosted my adrenaline, but whatever it was, I'll take it! By Friday evening (the 14th), I could feel the cancer fog rolling in. It was getting worse on Saturday, but I tried fighting it off by finishing purging my closet, which I had started about six weeks earlier. <br />
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That evening, Roger, Rebekah, Katie, and I went to Raleigh to participate in the annual Light the Night walk. Rachel had planned to go, but she was offered a babysitting job that evening. When we checked in, Roger, Rebekah, and Katie got supporter T-shirts and I got a survivor T-shirt. Food was provided by sponsors of the event, including Panera Bread, Starbucks, and a few others. After we ate, we visited the photo area to have a team picture taken. Then we picked up our balloons - red for supporters, white for patients and survivors, and gold for those who were walking in memory of a loved one. The walk started after dark and the balloons had battery powered lights in them. Deborah Morgan, a local news anchor, was the emcee for the event. We saw her standing along the side of the road during the walk, so I was able to get my picture taken with her. There were nearly 3,000 walkers this year. Our team raised $595. Thank you to all who donated or bought candy bars from us. The money raised by the Light the Night walks is used for research of new and better treatments for blood cancers. I am thankful that I was able to participate in the walk and that I felt good for it.<br />
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By Sunday, the fog was in full force and I stopped fighting it. This past week was pretty rough and I think I only worked about 15 hours. <br />
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On Friday, Katie and I were at Classical Conversations (a tutorial program for homeschoolers), and in spite of wearing a tank top, sweater, jeans, knee socks, and a jacket, I was shaking because I was so cold. Then my head started feeling funny - I wasn't quite dizzy, not quite light-headed, but not quite right either. I looked around and realized that everyone else had taken off their sweaters and no-one else appeared to be cold. I went outside and sat in the sun for awhile to try to get warm. After CC, I checked my personal and work email, made a smoothie for a quick infusion of vitamins, then went to bed for the rest of the afternoon.<br />
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I really hate days when I can't do what I plan and want to do. But there's a big difference between normal tired and cancer fatigue. When I'm normal-tired, I can drink a cup of coffee or get a good night's sleep and it goes away. But when I have cancer fatigue, I will sit in front of the computer trying to work, but accomplish nothing. I will look around my house and see things that need done, but I can't muster up enough energy to do anything about it. It takes longer to get moving in the mornings, and I have a short window of just a couple hours in which I can accomplish anything that requires mental exertion. I have always worked when I've had the flu, sinus infections, headaches, whatever... but this cancer thing kicks. my. butt. <br />
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Today was a good day. I dropped Katie off at her dance lesson this morning and then went to Walmart to pick up a couple things because Walmart is about a 2 minute drive from the dance studio. This afternoon we went to a beautiful outdoor wedding of a young couple from our church. Rachel and Rebekah left the reception a little early to go play Capture the Flag with the youth group at church. We thought we were going to a party this evening, and I admit I wasn't really looking forward to it because I'm getting tired. But Roger checked his calendar and realized that party is not until next week, so we will be able to have a quiet evening at home. I'm going to work a little while to finish up something that I started on Thursday, then read for awhile.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-70241901021443062222011-09-28T18:57:00.001-04:002011-09-28T19:02:53.697-04:00Update...I haven't posted lately, because there's not much to report. At my oncologist appointment today, my white blood cells (that's wbc if you read my previous post :-) were up to 3.8 from 2.8 three weeks ago. Normal is 5-10, but for cancer patients, they broaden the normal range to 3.5-10.5. My hemoglobin (hgb) was up from 10.8 to 11. Normal is 12-15. Unfortunately, my weight is creeping up, too; it didn't get the memo that I'd prefer it go in the opposite direction. I've been drinking soda and juice the past few days, so it's back to water for me, and I will also get back in the habit of having salad for a couple of meals each week. :-)<br />
<br />
I got used to having good days and bad days, but I have been extremely tired for the past two weeks. September 12 was a great day in which I felt clear-headed, productive, and efficient. September 13 was just the opposite; I was tired, cranky, and everything I did seemed ten times harder than it should be. I've gradually gotten better since then, but I still am worn out by the middle of the afternoon every day. After having such a good day and hoping this might become the "new normal," it hit me hard to crash so badly and for so long. My oncologist suggested that the fatigue is a side effect of the medicine I'm on. We could switch the medicine, but all TKI's have side effects, and I don't want to switch from one that's working to one that may not work as well or may have worse side effects. So we're not going to consider changing meds unless my first pcr result is less than the 3-month target. I'll have that test done at my next appointment in a month. <br />
<br />
In non-cancer news, Katie danced in her first feis (Irish dancing competition) on September 24 and she took 3rd place for her reel. Rachel applied to UNCG and is waiting to hear back from them. She also got her drivers license last week. Rebekah took drivers ed last week, and will be driving Thursday, Friday, and Saturday. So watch out if you see a "student driver" car in the Wake Forest/Youngsville/North Raleigh area. All of us went to Myrtle Beach for some "beach therapy" from Sunday until today. I will miss the sound of the ocean when I go to bed tonight!Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com2tag:blogger.com,1999:blog-7298294630091399.post-89027971717925057312011-09-17T11:01:00.001-04:002011-09-17T11:02:25.552-04:00A Short Lesson in Leukemia VocabularyAfter two months of having leukemia, I'm starting to learn the lingo. For your fun and edification, here is a list of leukemia acronyms. <br />
<br />
ALL - acute lymphocytic leukemia<br />
AML - acute myelogenous leukemia<br />
BCR-ABL - breakpoint cluster region - Abelson (used together, BCR-ABL refers to the fusion protein that is produced by the translocated genes 9 and 22, present in CML, ALL, and sometimes AML)<br />
BMA - bone marrow aspiration<br />
BMB - bone marrow biopsy<br />
BMT - bone marrow transplant<br />
CCyR - complete cytogenic response <br />
CLL - chronic lymphocytic leukemia <br />
CML - chronic myelogenous leukemia<br />
CMR - complete molecular response <br />
G - gleevec<br />
Hem/Onc - a doctor who is both a hemotologist and oncologist <br />
HGB - hemoglobin<br />
MCR - major cytogenetic response <br />
MHR - major hemotologic response<br />
MMR - major molecular response<br />
Onc - an oncologist <br />
Ph+ CML - Philadelphia chromosome positive chronic myelogenous leukemia<br />
PCR - polymerase chain reaction<br />
PCRU - pcr undetectable <br />
RBC - red blood cells<br />
SCT - stem cell transplant<br />
<span class="st">TKI - tyrosine kinase inhibitor</span> (the category of medications that is the front-line treatment for CML)<br />
WBC - white blood cellsElizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-24771347112941685682011-08-30T23:37:00.003-04:002011-09-04T22:43:26.541-04:00Guilt and ParanoiaLast week, I was reading the editorial in the latest issue of Touched By Cancer. Mike McDonald wrote about being cancer-free 14 years. He said that when his oncologist told him to go live a normal life, he didn't mention that paranoia would be part of the new normal. Most recently, he worried about a mole that became sore and irritated. As it turned out, the irritation was caused by seatbelt friction during a long drive on vacation. The mole is benign.<br />
<br />
I haven't had cancer very long, but I can relate! Some examples -<br />
<ul><li> Oh no, that lymph node that was swollen during tax season is swollen again. What does that mean?</li>
<li>Oh no, a new lymph node is swollen. What if it's an indication of another type of cancer? After all, there are people who get diagnosed with more than one kind of cancer at the same time. </li>
<li>Oh look, my ankles are swollen. Are my blood counts out of whack again?</li>
<li>These jeans are loose today; is it because I ate a salad yesterday or because I'm anemic again? </li>
<li>And then there's the ever present knowledge that some patients stop responding to the medication after a time. It's like a hammer hanging over my head, waiting to fall. </li>
</ul>I don't dwell on all the things that could go wrong. Today's trouble is enough for today. But those things sometimes run through my mind when I'm lying in bed at night or driving by myself. <br />
<br />
I think I also have a form of survivor's guilt. Most people with cancer have to have chemo that makes them sick and bald; I had 5 days of very mild chemo and I've had only minimal side effects from the medicine I'm on now. I have friends with chronic illnesses who have chronic pain; I didn't even realize I was sick until I was diagnosed. I had a lot of achiness before I was diagnosed, but very little actual pain. I don't want to have pain or nausea or baldness or other symptoms, but I feel these weird emotions about not having them.<br />
<br />
Edited three days later:<br />
<br />
I haven't posted a link to this post on facebook yet. I wrote it out, but verbalizing these emotions make me feel as if I'm calling doom down on myself. If I admit that I feel guilty about having such mild symptoms of a very serious illness, maybe my symptoms will get worse or I'll stop responding to my medication. Then on Thursday, I began feeling worse. I couldn't concentrate at work, I got a headache, and I became nauseous. Friday morning, I felt better, but by afternoon, I was feeling tired again. Not a normal kind of tired, but the way I felt before I was diagnosed. I called the doctor's office and got my next appointment moved from Friday to Tuesday. I worried that my worst fears were coming to pass and my blood counts are out of whack again.<br />
<br />
Today is Saturday, and I'm feeling normal again (and quite relieved!). I took Katie to her dance class and I've done some laundry, and I don't feel exhausted. Over time, I'm sure I'll figure out that I will have good days and bad days, and it doesn't mean the leukemia's getting worse. I'm sure I'll have some fluctuations in my blood counts and pcr, but every fluctuation won't mean that the cancer is going to spiral out of control. But for now, this is all new, and I don't know what is within the bounds of "normal" and what things I should be concerned about. Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-11885642148930318162011-08-26T18:39:00.001-04:002011-08-26T18:40:34.197-04:00Osteoporosis UpdateI finally rescheduled my mammogram and bone density test that I had to cancel on July 5. The mammogram results were normal. My bone density actually improved in my hips (YAY!), but is worse in my lower spine (DARN)! I had stopped taking calcium supplements for awhile because it was making my stomach feel yucky, but I started taking them a few weeks ago. I also need to get serious about exercise. I bought a groupon for a one-month membership to the Rex Wellness Center and I have a coupon for a free week at Curves. I will try them both, and then decide whether to join one of them or try some other gyms. There are peer-reviewed studies showing that acupuncture works to improve osteoporosis, and my oldest sister does that in addition to walking almost daily. My sister's insurance company covers acupuncture, so I was hopeful that it would be covered under my policy, but it is not. I hope it's not cost prohibitive, because I want to do acupuncture rather than medication. The latest research on osteo meds show that bone density increases, but there is not a correlating decrease in breaks. Even worse, one of the side effects of long term use is deterioration of the jaw bone. So even if my endocrinologist tells me it's time to start meds, I disagree. I am going to try to improve my numbers with exercise and acupuncture first. There is an integrative medical facility down the street from my office in Raleigh, so I couldn't ask for a more convenient location for acupuncture.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com2tag:blogger.com,1999:blog-7298294630091399.post-36486647421270312102011-08-18T12:54:00.000-04:002011-08-18T12:54:18.040-04:00Thank you to my former co-workers!Varanko & Black, the firm I worked for when I lived in Baltimore, held a Denim Day at work and raised $245 for leukemia research! Woo-hoo!Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-78087187200540570802011-08-14T22:42:00.000-04:002011-08-14T22:42:21.978-04:00The Man of the HourRachel wrote this poem as part of her personal hero project for English. :-)<br />
<br />
Verse 1<br />
Parents dying, children crying, no real explanation. <br />
Until a man came along with a true exclamation. <br />
Disease winning, worlds were spinning, many complications.<br />
A man was born passionate for these very situations. <br />
<br />
Verse 2<br />
He oversaw, watched it all: the Human Genome Project. <br />
The man learned much and guided to the desired object. <br />
Mapped DNA, led the new way, to fighting the beast cancer.<br />
Progressively lead his team to find the great answer. <br />
<br />
Chorus<br />
Francis Collins, the man of the hour,<br />
Showed to have scientific power. <br />
He led the long way to saving lives.<br />
Held as a hero in many eyes,<br />
For saving the husbands and the wives. <br />
<br />
Verse 3<br />
Raising cattle the daily battle deep down in the Shenandoah Valley. <br />
The genius actions as a child no one e'er could tally. <br />
Life was simple, smiles with dimples, he left for college at only sixteen. <br />
Left his dream of chemistry to discover genetics mean.<br />
<br />
Chorus<br />
<br />
Verse 4<br />
Many mothers will see bothers, appreciation to the Francis Collins <br />
Who took his time to devote to life of another's kin. <br />
A true hero, more than we know, for saving my mother.<br />
Francis Collins will be the man of my hour forever.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-64091028621653561292011-08-12T00:49:00.001-04:002011-08-12T00:49:59.298-04:00Doctor's Orders: Live Your LifeI had a doctor appointment on Tuesday, nearly six weeks post-diagnosis. My white blood cell count was 3.9 and the counts related to red blood cells are all holding steady. My doctor is very happy with how well I'm responding to Tasigna, so I don't have to go back for a month. Even better, he told me other than planning for my appointments with him and taking Tasigna twice a day on an empty stomach, I can just live my life. So, on Monday, I'm going to start working normal hours and in the office. <br />
<br />
My sister Juanita and her boyfriend were here last weekend. On Friday, we went by my office to drop off and pick up files, then to the mall where Katie got her ears pierced, then to the grocery store. By the time we got home, I was very tired, but it was a good tired. A normal kind of tired. <br />
<br />
This evening, Katie and I decided to enjoy the cooler weather and go for a walk. There is a slight hill on our street, and at least a year, when I went for a walk, my legs burned and I was short of breath by the time I got up the hill. All this time I've been telling myself I need to exercise more because I'm so out of shape, and yet, I couldn't build any stamina even when I did exercise. Tonight, my legs didn't burn and I didn't get short of breath. :-)<br />
<br />
Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-65772606714875799402011-08-03T15:22:00.000-04:002011-08-03T15:22:45.669-04:00The Living RoomI want to give a big shout-out to The Living Room, the Sunday School class that Roger teaches at Faith Baptist Church. They provided wonderful meals to us during the past month! They have made us feel very loved and appreciated, and we appreciate all that they have done for us! We are blessed to have a great church and wonderful friends.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com2tag:blogger.com,1999:blog-7298294630091399.post-11585323413863594082011-07-29T13:58:00.003-04:002011-07-29T20:28:37.424-04:00Ups and DownsI've had a good week, but woke up feeling crappy today. It seems like if I have a couple of good days, I have to pay for them with a couple of bad days. I put my hand on my neck this afternoon and found another swollen lymph node. After telling the NP yesterday that bone pain hasn't been a big issue, my legs and arms are achy today. I've been kind of down and feeling sorry for myself today. <br />
<br />
That said, I am still very much aware of all that we have to be thankful for:<br />
I've been able to work 10-15/hrs per week from home.<br />
My employer and coworkers have been supportive.<br />
My family and friends are supportive. <br />
Friends have been cooking wonderful meals for us.<br />
Roger got a call from a contractor friend today offering him some temp work. It's even inside work with AC.<br />
I don't have to have strong chemo. Instead, I can take meds at home.<br />
I have not had any horrible side effects from my meds.<br />
My oncologist is reputed to be a "super-genius" and his office is only 20 minutes from my house.<br />
<br />
These are the flowers I received last week from my employer. Aren't they beautiful?<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifQzhNxv1Fk9cW43dG2xy1jJwk3LQ2WSUrJtqt6rVatPc9EpW67ZxygGPihoTD9MHBbqJ9cVCT-_CFet6n9utupcoFbltJRp0eSAXiKn7bbqCM7VwKepnOT10WfW-KgkpQgirC5dnpHEs/s1600/IMG_3235.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifQzhNxv1Fk9cW43dG2xy1jJwk3LQ2WSUrJtqt6rVatPc9EpW67ZxygGPihoTD9MHBbqJ9cVCT-_CFet6n9utupcoFbltJRp0eSAXiKn7bbqCM7VwKepnOT10WfW-KgkpQgirC5dnpHEs/s320/IMG_3235.JPG" width="240" /></a></div>Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-84056912060823573462011-07-28T22:01:00.000-04:002011-07-28T22:01:27.343-04:00Today's Doctor AppointmentMy white blood cell count is 3.5 and the percentage of each type of wbc is within the normal range!!!! Four weeks ago, it was 317 and the percentage of neutrophils was way too high! Now, the concern is that my white blood cell count will drop too low. All the counts related to red blood cells are still low, but holding steady. The tender spot in my neck is a swollen lymph node and we are just going to keep an eye on it.<br />
<br />
After my doctor appointment, we (Roger, Katie, and I) went to the office to drop off and pick up some files. Afterward, we went to lunch at a Chinese place near the office. The nurse practitioner had asked me how I was doing with bone pain, and Roger and I were discussing that. He asked me about the stairs at work, and I realized that when I went up the stairs, my legs didn't hurt and I didn't get short of breath. Roger said he noticed that I didn't stop on the landing to catch my breath. Wow, that is a sign of progress!!<br />
<br />
On the way home, we stopped at the mall to pick up some calcium supplements at GNC and get my wedding rings cleaned and inspected. My CML medicine causes osteoporosis, but I already have it, so I think I should start being serious about taking better care of my bones. I used to take calcium every day, but I've gotten lazy about it. I am supposed to get my rings inspected every six months to avoid invalidating the extended warranty. The jeweler politely chided me for being late. When I said last month was a little busy, he replied that everyone says that. I didn't bother explaining that I was busy having leukemia. :-) All that walking in the mall didn't make my legs hurt or make me feel weak. It is nice to start feeling normal again. I did try to nap when we got home, but I didn't fall asleep, so I'm exhausted this evening.<br />
<br />
Backing up a bit...<br />
<br />
When I was in the hospital, I asked the doctor if the chemo drug was affecting me that badly. Why did I go from functioning somewhat normally on Wednesday to hospitalized by Saturday? He said I was on the fence, and getting the diagnosis was the feather that knocked me off the fence. Once I knew I was sick and gave myself permission to give into it, I became pretty much non-functional. He said that if I hadn't gone to the doctor for a physical, I still would have been diagnosed within a month because I was close to collapsing.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com1tag:blogger.com,1999:blog-7298294630091399.post-77682570708407312892011-07-26T19:02:00.001-04:002011-07-28T22:03:27.884-04:00Just an updateI have had more energy this week than last week. Maybe I am producing more red blood cells?<br />
<br />
During tax season, there was a place on my neck that bothered me, but I didn't get it checked because I didn't have time. It was tender when I touched it, and it sometimes felt like something was swollen as compared to the other side of my neck. I figured it was probably a swollen lymph node, which can be serious, but can be caused by something as simple as post-nasal drip. Last week, it started hurting again in the exact same spot. I finally called the doctor's office today, and my appointment on Thursday has been changed from a "lab only" appointment to an office visit. Please pray that it's related to the leukemia or allergies and not a symptom of anything else.<br />
<br />
Several times, I have asked the doctor for a longer view of what to expect. When I was in the hospital, he told me to take it easy for six weeks and then we will re-evaluate. Please pray that I will be able to return to working 25-30/hours per week by then.<br />
<br />
He told me at one of my office visits that eventually, I will be able to do everything I could before. I've been reading some other CML blogs, and I know there are people who don't respond to medication, or they respond for awhile and then stop responding. I can't dwell on all the "what ifs," but it is scary to consider all the possibilities. Please pray that my body does respond to the medication and continues to respond for a good long time! Specifically, we want to get my blood counts normalized, then the number of cells with the BCR-ABL gene to a very low level.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com2tag:blogger.com,1999:blog-7298294630091399.post-52809938618013328842011-07-23T22:45:00.000-04:002011-07-23T22:45:35.947-04:00CML Medications and Research<a href="http://www.nccn.com/component/content/article/54-cancer-basics/828-drug-development.html">This</a> is fascinating stuff! The ability to create targeted cancer drugs is due, at least in part, to knowledge about DNA and genes acquired from the Human Genome Project. The article doesn't mention him, but Francis Collins, MD, Director of the National Institutes of Health, was the head of the Human Genome Project and arguably the most intelligent person of our time. His TED talk giving his Christian testimony is no longer available online, but I found <a href="http://ngm.nationalgeographic.com/ngm/0702/voices.html">this interview</a> that reflects Dr. Collins faith, intelligence, and personality. <br />
<br />
I am taking Tasigna (Nilotinib), one of the second generation drugs discussed in <a href="http://www2.mdanderson.org/cancerwise/2010/06/cml-newer-drugs-provide-faster-better-remissions-than-gleevec.html">this article.</a> (Gleevec, the drug discussed in the above link, is the first generation drug.)<br />
<br />
Being personally affected by cancer (or another disease) makes one aware of the urgency of research to continue to develop better treatments. On October 15, 2011, my family and I, along with as many friends as would like to join us, plan to walk in the Raleigh Light the Night Walk to raise funds for the Leukemia and Lymphoma Society. All the funds raised in this event will support research on blood cancers. Many of the drugs developed for blood cancers have been approved to treat other cancers as well. You can support or join our team at <a href="http://pages.lightthenight.org/nc/Raleigh11/TeamBeatty">this link.</a> Scroll down to allocate your donation to a specific team member. Thank you for supporting us in whatever way you can, whether by donating, walking with us, praying for us, or offering encouragement.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-67527478395611379512011-07-23T11:02:00.001-04:002011-07-23T11:03:32.501-04:00More about the Hospital StayI was glad Juanita had spent the night at the hospital with me and could meet my oncologist. He said the fevers I had could be from an infection, medication, or the leukemia. They hadn't found any infection yet, but the cultures take 48 hours. He said that I might be in the accelerated phase of CML (the 2nd phase), or I might still be in the chronic phase (the 1st phase), but I wasn't in the blast phase (the 3rd phase, which is treated more like acute leukemia and is very bad). He wanted me to stay in the hospital another day since I was still having fevers. Juanita asked him about work, and he said I should take six weeks off. He said that if I did work at all, I should avoid anything with urgent deadlines. Um, yeah, my profession is driven by deadlines.<br />
<br />
After he left, Juanita and I looked at the menu and ordered breakfast. I wasn't very hungry, but I really needed some coffee. I was able to eat 1/2 slice of french toast and a little bit of fruit. I gave the rest to Juanita. After eating and having coffee, I felt pretty good in spite of getting very little sleep. I thought the blood transfusion must have worked to boost my energy. Juanita and I talked and watched TV. We ordered lunch, but I couldn't eat. I choked down a couple bites, but I was gagging just to get that much down. I got back in bed under some blankets because I was cold again. Well, you guessed it. My temp dropped below normal, then starting climbing. I had to have more blood cultures every time it went over 101.5, so I couldn't have tylenol until we waited to see if it would get that high. Letting it get that high meant that I got sick and starting throwing up again. <br />
<br />
After church, Roger, Rachel, and Katie came to the hospital along with Randy and Juanita's grandson, Kayden. My friend Angie came in shortly behind them. After Angie left, Juanita, Randy, and Kayden went to the cafeteria to give us some family time. Rebekah wasn't there because she had left at 6:00 am to go to Kentucky on a mission trip. By this time, I was tired again, and I wished the kids could have come in the morning when I had more energy. They had never seen me very sick, and I knew it scared them to see me like this. I found out later that they started crying when they left my room.<br />
<br />
Randy and Juanita took the kids home for supper, and Juanita made some apple pies. Roger stayed and spent the night at the hospital with me. Around bedtime, I got chills then a fever again. By this time, I was recognizing the cycle, and I was determined to get tylenol before I starting throwing up. I had a thermometer in my room, so I was checking my temp every 15 minutes. As soon as I developed a fever, I called the nurse, and then as soon as it got over 101.5, I called the nurse again to ask for tylenol. I was nauseous, but I managed to keep the tylenol down. As soon as the fever came down, the nausea subsided. <br />
<br />
Since I didn't have an IV in my arm the 2nd night, I was able to sleep on my stomach and get comfortable. Just as I started drifting off to sleep, the nursing assistant came in to check my vitals. Then when I got comfortable again, a lab tech came in to draw the blood for another set of cultures. Finally, I fell asleep until the nurse came in at 2 am to give me my antibiotic medicine, but fortunately, I was able to fall right back to sleep until about 6:30 am.<br />
<br />
Monday morning, I felt great after having a good night's sleep. The nurse covered the IV needle that was still in my arm so I could take a shower, and she brought me a clean gown. When my oncologist came in, he gave me the choice of having year-old leftover hot dogs for the 4th of July holiday in the hospital or going home, since they hadn't found any evidence of infection. Of course, I picked going home. I told him that now that I was paying attention to my body, I recognized the cycle of getting cold then hot when I spiked a fever, and I thought I'd been having the fevers for months, but I never took my temp because I didn't realize I was having fevers. He agreed that it was quite possible, in which case it was the leukemia causing the fevers. <br />
<br />
As soon as the discharge paperwork was completed, we left the hospital. The kids were with friends, so it was just Roger and me at home. I joked, "Oh, so this is what we have to do to get the house to ourselves for a few hours - get leukemia." By the time we got home, I was ready for a nap.<br />
<br />
Now that I was paying attention to my body instead of trying to push through, I realized the magnitude of what I'd been fighting for so long. I had a couple of good hours in the morning, but by lunch time or early afternoon, a "fog" rolled in over my brain, I was tired, and I couldn't think. In the middle of a sentence, I'd completely forget what I was talking about. It's like trying to walk through sludge. I had been using caffeine to get through, but that wasn't working so well anymore. We'd tried medication for our daughter who has ADHD, but the one that worked upset her stomach and the other two didn't work for her. The bottles were still sitting in the medicine cabinet and I considered trying them to see if they'd help. I even mentioned it to Roger shortly before I was diagnosed, and he told not to try them because who knows how they'd affect me.<br />
<br />
After my hospital stay, I began napping daily, sometimes twice. I am a person who normally can't fall asleep during the day unless I am utterly exhausted, so it surprised me that I could fall asleep every day. On Thursday, July 14, I had a fantastic day. I didn't nap at all and I didn't get brain fog. My hemoglobin that day was 11, which is low, but the highest reading I'd had since this journey began. The following day, I also didn't nap and had a great day.<br />
<br />
My new medication, a targeted CML drug that my oncologist describes as a biological agent rather than a chemo drug, arrived on Tuesday, July 7 via FedEx. Roger went to the door, and in addition to the medication, he had a box from ProFlowers in his hands. We opened the box to find a dozen roses in various colors. I looked for the card and was shocked. The flowers were from a group of women that I only know online. They'd gotten together the Saturday before, and I really wanted to go, but was not up to it. Hopefully, they will have another get together soon and I'll be able to go.<br />
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By Saturday, I began feeling tired and foggy again. My oncologist had told me that the new medication would kill the abnormal cells first, then begin creating an environment where normal cells can be produced in the correct proportions. He said I might get more anemic again in the meantime, but maybe not. At this week's appointment, my hemoglobin was down to 10.4, so that's apparently why I started feeling tired and sluggish again. I've started needing naps again, and concentration and mental exertion are difficult. The good news is that my white blood cells are down to 17k! My doctor is on vacation, but the nurse practitioner was very happy with that number. My neutrophils are still too high as a percentage of white blood cells, but that's to be expected for awhile longer.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com1tag:blogger.com,1999:blog-7298294630091399.post-88697603085710646152011-07-22T12:38:00.002-04:002011-07-22T22:34:55.316-04:00Hospital AdmissionFriday morning, I made a store list, and Juanita and I headed out to run errands. We headed to Walmart for one stop shopping. I dropped off my prescriptions while thinking that they're going to know I have cancer because I'm getting a chemo drug. While waiting for the prescriptions to be filled, we shopped for groceries. While walking through the clothing section, I saw a blouse I liked, but I put it back on the rack. I didn't want to spend any extra money since I wasn't sure of what would lie ahead financially. Over my objections, Juanita picked it up and put it in the cart to buy for me.<br />
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We headed back to the pharmacy. Juanita told me to go sit on the bench and she would stand in line. I thought it was silly, but I went and sat down. When she got to the front of the line, I joined her since I was using my debit card to pay. I was surprised and relieved that the bill was less than $50 for all 3 prescriptions. Then we went over to the regular check out lines to pay for our groceries. Again, Juanita told me to go sit down until she got to the front of the line. I told her I'm not an invalid, but she insisted, so I went to sit.<br />
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When we left Walmart, I told her to turn right if she wanted to see where the Cancer Center is. At that, she exclaimed that we forgot to buy snacks and fruit for the staff. She pulled into the Shell station to get gas, and when she went in to pay, I thought she was in there for a long time. She came out with a bag of snacks and fruit. She explained that nurses remember who brings food for them and they will make sure you are well taken care of. :-). When we arrived, the nurse manager was sitting at the reception desk, so Juanita was able to talk to her. My sister said she knows what she's talking about and she's no bimbo. Now Juanita would know I was in good hands when she left. :-) I think she knew that anyway; she was very impressed with how fast I got in to see an oncologist and that he took the bone marrow biopsy at my first appointment.<br />
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When we got home, I took my first dose of chemo, then we made a late lunch. By then, I was surprised at how tired I was, and I just laid around for the rest of the day.<br />
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Rebekah wanted to find the book <u>Twice Upon a Marigold</u> for her friend Alex's birthday. We hadn't found the book at Walmart and Target, so she wanted to go to Barnes & Noble. Juanita said she'd take her on Saturday. I wasn't sure that Rebekah could find the mall, so I wanted to ride along. I was really tired on Saturday, so Juanita suggested I take a nap then go along if I felt better. But it was getting later and I thought that if we were going to go, we should just go. So Juanita, Rebekah, Katie and I piled in Juanita's car and headed to the mall. She dropped me off at the B&N door, which I thought was a little silly because I was capable of walking across the parking lot! But inside B&N, I started getting tired pretty quickly. I found a place to sit while the kids and Juanita looked for books. We didn't stay long, but I was surprised at how exhausted I felt. We headed to the car and I said I'd walk instead of waiting for Juanita to bring the car to the door. In the parking lot, we ran into my friend Angie and her girls. We hugged and talked about how shocking it was that I have leukemia. Angie said, "So I guess you won't be in church tomorrow," to which I responded, "Yeah, I'll be there." Silly me.<br />
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We headed home and Juanita started supper. I laid on the couch and Katie sat beside me looking concerned and rubbing my shoulders. When supper was ready, I said I'd come to the table, but I couldn't muster the energy to get up. I said I'd be over in a little bit and they should go ahead and start without me. Then I decided I wasn't hungry anyway and I'd just stay on the couch. Juanita wanted me to eat something, so I said they could bring me half an ear of corn. I sat up on the couch to eat it, then laid down again. By this time, I was freezing and someone brought me a blanket. Roger thought I felt warm and went looking for a thermometer. He couldn't find one, so he and Randy drove to Walmart to buy one. They finally returned and I had a temp of 102.2. They called my oncologist and he said we should go to the ER in case I had an infection.<br />
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I packed a bag in case I got admitted. Totally weird for me, I didn't bring a book because I didn't feel up to reading. The scrambling around to pack a bag kind of jolted me into having more energy (the tylenol probably helped too), and I started thinking that it was probably silly for us to go to the ER. The triage nurse was a cancer survivor who obviously had a passion for encouraging and educating cancer/chemo patients, so we were in triage for a long time. Afterward, they told me I could stay in the triage waiting area so I wouldn't be exposed to so many other people.<br />
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In the ER, they took a lot of blood, chest x-rays, and started an IV. The funniest moment was when the ER doctor palpated my abdomen and said, "That's a big spleen you've got there." When my bloodwork came back, they spoke to my oncologist and he told them to admit me for 2 units of blood because my hemoglobin was down to 6.5. Kind of explains why I had no energy! The ER nurse thought my wbc was 240 (two hundred forty, no thousands) and she came rushing in with a mask for me to wear. We all told her that it was 240 thousand, not 240, but she didn't believe us. My sister is an ER nurse and asked to see the report. They pulled it up on the computer and my sister showed her where it said 240, normal 5-10, measured in thousands, but she still didn't believe it was 240,000 until she walked down to the lab and talked to a tech. While she was gone, I said she was probably confused because she'd never seen a wbc count that high. When she came back, she said the highest wbc count she'd seen was 90-something thousand, and that person was so sick, she didn't realize it could go as high as mine.<br />
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When I was being wheeled to my room, I was watching the signs and realized that I was being taken to the cancer center. Inside, I was thinking that I don't want to go there because that's where really sick people are. I didn't want to think of myself as a cancer patient.<br />
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In my room, I moved from the gurney to my bed. I was very cold, so a nurse brought me a warm blanket. There was a flurry of activity as my nurse checked my history, meds, and vitals. My temp was below normal, but Juanita suspected that I was going to spike another fever. Sure enough, my temp went up to 101. My nurse brought me benadryl (for the blood transfusion) and tylenol. A few minutes later, I got nauseous and Juanita found a basin in case I got sick. Then I started throwing up. My nurse gave me a shot of compazine in my IV, then gave me more tylenol and I managed to keep it down. They had to wait for my temp to drop below 100 before starting the transfusion, so they checked my temp often until it got below 100. Every time I started to drift off, someone came in to take more blood, check my vitals, or ask me how many times I used the bathroom, so I never did fall asleep. I wondered if this was going to be my life with leukemia - sick all the time, in and out of the hospital. I finally fell asleep about 7 am, only to be awoken at 8:20 by my oncologist.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com0tag:blogger.com,1999:blog-7298294630091399.post-7712489627513057432011-07-21T17:34:00.000-04:002011-07-21T17:34:14.619-04:00Telling the KidsAfter my oncologist appointment, Roger, Rachel, Rebekah, and I were home. We can't even remember where Katie was or who brought her home. Maybe she was swimming with her friend Sophie. We decided to go ahead and tell Rachel and Rebekah, so I got the papers the doctor used to explain it to me and tried to give them the same explanation. Like me, they didn't like hearing words like leukemia and cancer, but they were relieved to know that I am not dying. <br />
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As we were finishing up, our friend Sabrina stopped by to borrow our portable DVD player for her family's house-hunting trip to Tennessee. I wasn't sure how to fit, "Today I found out that I have leukemia" into small talk, so I didn't say anything.<br />
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When Katie came home, I gave her a more simplified explanation. She was concerned to hear that I have a type of cancer, but I reassured her that I wasn't going to die from it. I hoped this was true, since it would take awhile to get the biopsy results to confirm the diagnosis.<br />
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My sister Juanita had told me she and her boyfriend would be down after work, but I wasn't sure if they were coming on Thursday or Friday. When I talked to her after the oncologist appointment, they were loading the car and pulling out. I told Roger they were on their way, and we tried to straighten up the house a little bit. Everything was happening so fast and Roger thought it would be better if they waited and came down a different weekend. But when I had talked to Juanita that afternoon and told her she didn't have to come down this weekend and we might need her more later on, I sensed her need to be with me. And truthfully, I wanted her here, too. They wouldn't arrive until the middle of the night, so we left the light on and the door unlocked and went on to bed. It had been a long, exhausting day.Elizabethhttp://www.blogger.com/profile/04400803958515688807noreply@blogger.com3