Wednesday, June 22, 2011
Monday, June 20, 2011
And the results are in...
Last week was a busy week with almost four days of annual "check-up" appointments both in Boston and in Concord. No matter how satisfied you are with a good outcome, once you've been diagnosed and treated for a serious disease, you can't help but be just a little bit wary before these regular evaluations. For the first time in almost 5 years I feel fantastic; my energy is normal, I'm on no medication, and have no symptoms. My life is pretty much back to normal on many levels, but when you know you're going to be tested up, down and sideways, there's always that lurking feeling in the back of your mind, what if they find something? Whenever I catch myself slipping, I quickly "change the channel" and immediately start practicing my positive affirmations, telling myself over and over "I'm in perfect health/my body is working perfectly/my tests will come back completely normal" (although I do admit sometimes I have to repeat these mantras like reps of bicep curls for fear of a teeny little shred of doubt worming its way in to my head).
Yearly evaluations are always scheduled for Mon-Wed, with Monday being the longest and most intense day. Vials upon vials of bloodwork, every bathroom test you can think of, vitals and EKG, echocardiogram, chest x-ray, consultations, and the ever-so-popular bone marrow biopsy. I even have a special technique for that oh-so-special procedure; 2 extra strength Tylenol about 1 hour before, and an Ativan under the tongue about 20 minutes prior. Doesn't make it any more enjoyable, but certainly takes the edge off!
The next couple of days include consultations with nephrology, hematology, and a review of the initial test results, as well as an amyloidosis support group. The one benefit of all this sitting around in between appointments is we get to meet and chat with the nicest people; including those who've already been treated as well as people who are recently diagnosed being evaluated for treatment. Having been through the entire process twice and knowing all of the doctors and staff allows both Steve and I to offer some support and guidance to those just starting on this journey, and I consider that the benefit of having had to go through this experience. Being able to connect with other patients makes me feel like something good came out of something pretty crappy.
I received my test results at the end of the week, which was perfect timing, right before Father's Day. In order to really appreciate the improvement, I'll give you a brief description on how amyloidosis affected me. The disease is a malfunction of the bone marrow, in which plasma cells start "folding" incorrectly. When this happens, they cannot be broken down and metabolized properly, and they start building up in the blood. All these wacky plasma cells start sticking together and attaching to different organs like chewing gum. Amyloid fibrils can attack any organ, but for me, they were clogging up my kidneys and damaging them. Left unchecked, the disease eventually leads to organ failure.
As a result of the amyloid damage, I was losing protein in my urine. Protein is supposed to stay in your blood, and acts like a sponge, holding on to fluid, which keeps your blood thin and loose. Instead, as I lost protein, the levels of protein in my blood went down, causing a few problems. First, because there was a build up of extra fluid, I had terrible edema, or swelling in my belly, legs and feet (this was the first sign that something was wrong which sent me to the doctor). Second, as extra fluid leaked out of my blood into the tissues, my blood was less "watery" and I was at higher risk of blood clots. Third, as my blood protein levels went down, my body tried to make more by churning out protein from my liver. The only problem with that is with every protein molecule your liver makes, there are 2 cholesterol molecules attached to it. So my cholesterol was extremely high, starting around 350, getting as high as over 500! I had the cholesterol of a stick of butter, and was put on a statin.
So every year, we look for certain numbers. First, I always want to see the protein in my urine going down as much as possible (I have no more swelling or edema, so it's improving and shows that my kidneys are no longer being damaged and are actually healing). Second, I'm always interested in my cholesterol, both the total number (which should be under 200), as well as HDL and LDL. And the most important test is the levels of plasma cells in the bone marrow.
I'm happy to report that there's less than 240 mg of protein in the urine (normal is 150 or less; at diagnosis I had between 8000 and 16,000 mg of protein!), that is awesome! Because that number is coming down, my total cholesterol is about 205, which is pretty healthy. The bone marrow biopsy showed normal amounts of plasma cells, between 5-10%, so that is awesome. But here's the extra good news...there are also two immunofixation tests that look for abnormal proteins, blood (serum) and urine. After 2 stem cell transplants, both of these tests showed a "barely detectable trace" of paraprotein, literally described as a "smudge" (that's actually what it is, a shadow, a visible marker). They saw this "smudge" in tests done in December 2008, June 2009, and June 2010, no changes, it was just there. Since my test results have continued to improve steadily, they assume that it's leftover crap floating around, but they can't guarantee that it's not new amyloid being produced. However, tests done this week show the same smudge in the serum tests...BUT NOT IN THE URINE TESTS. It has *disappeared* from the urine immunofixation tests! This gives us hope that perhaps in the next year or so, it will disappear completely from the serum tests as well.
In the meantime, this is awesome news, and we are all so happy. Every year around this time the fleeting thought of a relapse does cross my mind, how could it not?! I'm sure this is what every patient experiences. But all I can do is choose not to dwell on that, using my affirmations as a tool to help me stay positive.
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Yearly evaluations are always scheduled for Mon-Wed, with Monday being the longest and most intense day. Vials upon vials of bloodwork, every bathroom test you can think of, vitals and EKG, echocardiogram, chest x-ray, consultations, and the ever-so-popular bone marrow biopsy. I even have a special technique for that oh-so-special procedure; 2 extra strength Tylenol about 1 hour before, and an Ativan under the tongue about 20 minutes prior. Doesn't make it any more enjoyable, but certainly takes the edge off!
The next couple of days include consultations with nephrology, hematology, and a review of the initial test results, as well as an amyloidosis support group. The one benefit of all this sitting around in between appointments is we get to meet and chat with the nicest people; including those who've already been treated as well as people who are recently diagnosed being evaluated for treatment. Having been through the entire process twice and knowing all of the doctors and staff allows both Steve and I to offer some support and guidance to those just starting on this journey, and I consider that the benefit of having had to go through this experience. Being able to connect with other patients makes me feel like something good came out of something pretty crappy.
I received my test results at the end of the week, which was perfect timing, right before Father's Day. In order to really appreciate the improvement, I'll give you a brief description on how amyloidosis affected me. The disease is a malfunction of the bone marrow, in which plasma cells start "folding" incorrectly. When this happens, they cannot be broken down and metabolized properly, and they start building up in the blood. All these wacky plasma cells start sticking together and attaching to different organs like chewing gum. Amyloid fibrils can attack any organ, but for me, they were clogging up my kidneys and damaging them. Left unchecked, the disease eventually leads to organ failure.
As a result of the amyloid damage, I was losing protein in my urine. Protein is supposed to stay in your blood, and acts like a sponge, holding on to fluid, which keeps your blood thin and loose. Instead, as I lost protein, the levels of protein in my blood went down, causing a few problems. First, because there was a build up of extra fluid, I had terrible edema, or swelling in my belly, legs and feet (this was the first sign that something was wrong which sent me to the doctor). Second, as extra fluid leaked out of my blood into the tissues, my blood was less "watery" and I was at higher risk of blood clots. Third, as my blood protein levels went down, my body tried to make more by churning out protein from my liver. The only problem with that is with every protein molecule your liver makes, there are 2 cholesterol molecules attached to it. So my cholesterol was extremely high, starting around 350, getting as high as over 500! I had the cholesterol of a stick of butter, and was put on a statin.
So every year, we look for certain numbers. First, I always want to see the protein in my urine going down as much as possible (I have no more swelling or edema, so it's improving and shows that my kidneys are no longer being damaged and are actually healing). Second, I'm always interested in my cholesterol, both the total number (which should be under 200), as well as HDL and LDL. And the most important test is the levels of plasma cells in the bone marrow.
I'm happy to report that there's less than 240 mg of protein in the urine (normal is 150 or less; at diagnosis I had between 8000 and 16,000 mg of protein!), that is awesome! Because that number is coming down, my total cholesterol is about 205, which is pretty healthy. The bone marrow biopsy showed normal amounts of plasma cells, between 5-10%, so that is awesome. But here's the extra good news...there are also two immunofixation tests that look for abnormal proteins, blood (serum) and urine. After 2 stem cell transplants, both of these tests showed a "barely detectable trace" of paraprotein, literally described as a "smudge" (that's actually what it is, a shadow, a visible marker). They saw this "smudge" in tests done in December 2008, June 2009, and June 2010, no changes, it was just there. Since my test results have continued to improve steadily, they assume that it's leftover crap floating around, but they can't guarantee that it's not new amyloid being produced. However, tests done this week show the same smudge in the serum tests...BUT NOT IN THE URINE TESTS. It has *disappeared* from the urine immunofixation tests! This gives us hope that perhaps in the next year or so, it will disappear completely from the serum tests as well.
In the meantime, this is awesome news, and we are all so happy. Every year around this time the fleeting thought of a relapse does cross my mind, how could it not?! I'm sure this is what every patient experiences. But all I can do is choose not to dwell on that, using my affirmations as a tool to help me stay positive.
Thursday, June 2, 2011
Why I Love Birthdays!
It’s been a busy birthday season in our house! My dad and sister both had birthdays in April, Steve’s was in May, and both Jason and my nephew have birthdays in June.
I can’t help but think back to when I received my diagnosis, and was told what my prognosis would have been had my doctor not been so astute in looking specifically for amyloidosis. Researchers are working tirelessly to increase awareness of amyloidosis in the medical community, so that doctors will request the special tests necessary to detect it sooner. While I felt fortunate that my disease was caught early enough for proper treatment, I couldn’t help but wonder at the time if I would see my 10th wedding anniversary, or Jason’s 5th birthday. Even though I was a good candidate for a stem cell transplant, the doctors didn’t mince words in describing how intense and aggressive that treatment would be, and the risks involved. I wanted to see Jason start kindergarten, learn to read, take off his training wheels. I left my doctor’s office unable to fathom my little boy, who hadn’t even turned four yet, growing up without me.
Four years, two bone marrow transplants and two hip replacements later, I couldn’t be more grateful to have seen Jason turn 4, then 5, 6, 7, and now, 8 years old. Rather than worry about a relapse, I keep my eyes on the prize by staying focused on Jason going to middle school, having his Bar Mitzvah, and learning to drive (you didn’t think I wanted to leave *that* to Steve, did you?!). It’s easy for anyone, let alone a parent, to get stuck in a “why me?!” type of mentality. I credit much of my healing to concentrating on what *is* working, rather than what *isn’t*, and focusing on a future of health and vitality. I visualize going somewhere fabulous with Steve for our 15th wedding anniversary (or instead of a trip, jewelry would work just fine, Dear), doing something big for Jason’s “double digit” 10th birthday, or finally achieving my dream of going to Canyon Ranch for my 50th birthday (or perhaps we can push it to 45, Honey??).
Every birthday that comes and goes, whether mine or someone else’s, fills me with a sense of happiness and gratitude. You won’t find ME complaining about getting older, in fact just the opposite! In 2007, as I drove away from my doctor’s office, if you had told me that there would be a “gift” in this whole experience, I would have thought you were crazy. But now, looking back, I can honestly say that things do happen for a reason, and many good things have come from what was originally a frightening situation.
Gift #1: I appreciate my body
And I don’t mean just how I look on the outside, but the health and proper function of the inside. From a very young age, I remember having poor body image and not feeling confident in how I looked. Years of ballet with very slender girls, taught by a former principal dancer of the Boston Ballet didn’t help, and I remember trying various diets and exercises in an effort to look like the models on the cover of Seventeen magazine. Even throughout college I was self-conscious about my figure, and endured years of negative self-criticism. When I entered graduate school and began walking all over Boston and teaching group exercise classes, I finally lost quite a bit of weight and achieved an envious size 4. But I didn’t feel any less insecure; in fact I continued to pressure myself into “looking” a certain way, especially once I began working as a personal trainer. I continued to obsess about how I looked, like most women, before my wedding, and during and after my pregnancy.
One thing this entire experience has taught me is to appreciate the *inside* of my body and how lucky I am that is healthy and working properly once again. While I admit I eat well and exercise in an effort to stay at my “happy” weight and size, it is no longer the end-all, be-all of my existence. I’m proud to be 42—with the insides of a three year-old!
Gift #2: I am more “present”
I used to get so hung up on the house looking perfect, things going according to plan, or finishing the dishes/laundry/errands before I could relax and enjoy my family. One thing I learned from this experience is when faced with your own mortality you don’t care about the dishes being clean. Prior to my illness, I had a hard time going to bed until everything was “done”. I’m ashamed to say I would find my mind wandering as I was playing with Jason or reading him a goodnight story (“As soon as this is over, I have so much to do...”). While I wasn’t proud of this distraction, I told myself it was just part of being a busy parent. After my diagnosis, I instantly became much more present and mindful of the moment, whether with Jason, Steve, or my friends. I didn’t want those special moments to end, and I certainly didn’t want to waste them by mentally running down my to-do list. In fact, I found that the more present I was, the more I enjoyed it. How wonderful to actually *relish* a bedtime story, a trip to the pool, a movie with popcorn under a blanket?
Gift #3: Little things don’t upset me
After buzzing my hair off…TWICE…I’m so happy to have it back, you’ll never hear me complain about having a bad hair day. When I need to cancel plans to stay home and take care of Jason when he’s sick, I’m glad I’m around to do it. When I turned 40…then 41…then 42…I didn’t complain about getting older. I celebrated! When there’s 3 feet of snow on the ground, I won’t lie—I don’t love it. But things could be so much worse. Rather than focus on what’s not working, I try and shift my attention to what *is* working. Jason and I call it “changing the channel”. Steve just did the laundry and accidentally washed and dried a brand new top that required a cold, gentle cycle and NO tumble drying. Needless to say, the floral appliques were curled up and falling off. Was I happy about this? Of course not, but as soon as I started feeling upset, I thought to myself, “Change the channel!” It’s only a tank top (thank goodness I bought it at TJMaxx). Rather than waste energy on the negative, I do my best to look at the positive.
Gift #4: I’m able to help others
In an effort to increase awareness about amyloidosis in both the general public and medical communities, I’ve shared my story with our local paper, and been featured on an episode of Mystery Diagnosis. One local woman, frustrated after numerous tests failed to explain months of bizarre health symptoms, actually took the article to her doctor and demanded to be tested for amyloidosis. She tested positively, and was treated successfully at Boston Medical Center. She underwent her first stem cell transplant at the same time I was going through my second, and she and her husband have since become good friends. I also receive phone calls and emails from people all over the world who have seen the Mystery Diagnosis program, and communicate regularly with other newly-diagnosed patients via email support groups. Most recently, I became friendly with another lovely woman who is currently being treated at BMC. I am grateful that my experience has made it possible for me to offer support and guidance to others going through the same scary time.
Gift #5: I don’t take things for granted
My diagnosis came completely out of the blue—I was a young, healthy person, an avid exerciser, a nutritious eater. I don’t smoke, do drugs, or drink too much. I don’t even bake in the sun, so to be told that without prompt and proper treatment my prognosis was 12-15 months was quite a shock. If anything, this experience has given me a greater appreciation for my life and how I live it. Instead of a New Year’s Resolution, I dubbed 2011 “The Year of Awesome”! I want my coffee to be awesome. If we go out to eat, I want the food to be awesome. If I’m hanging out with friends, I want that quality time to be awesome. We never go to bed angry, and I make family time a priority. Things can turn on a dime at any moment, so I’m mindful of how I spend my time and energy.
A few years ago you couldn’t have convinced me that anything positive would come out of this experience. I could never have imagined that it would lead me to write a book to help other families, but if I had to go through all of that to get to this point, I can honestly say I am more deeply fulfilled and happier now having faced that challenge and emerged a stronger person both mentally and spiritually.
I can’t help but think back to when I received my diagnosis, and was told what my prognosis would have been had my doctor not been so astute in looking specifically for amyloidosis. Researchers are working tirelessly to increase awareness of amyloidosis in the medical community, so that doctors will request the special tests necessary to detect it sooner. While I felt fortunate that my disease was caught early enough for proper treatment, I couldn’t help but wonder at the time if I would see my 10th wedding anniversary, or Jason’s 5th birthday. Even though I was a good candidate for a stem cell transplant, the doctors didn’t mince words in describing how intense and aggressive that treatment would be, and the risks involved. I wanted to see Jason start kindergarten, learn to read, take off his training wheels. I left my doctor’s office unable to fathom my little boy, who hadn’t even turned four yet, growing up without me.
Four years, two bone marrow transplants and two hip replacements later, I couldn’t be more grateful to have seen Jason turn 4, then 5, 6, 7, and now, 8 years old. Rather than worry about a relapse, I keep my eyes on the prize by staying focused on Jason going to middle school, having his Bar Mitzvah, and learning to drive (you didn’t think I wanted to leave *that* to Steve, did you?!). It’s easy for anyone, let alone a parent, to get stuck in a “why me?!” type of mentality. I credit much of my healing to concentrating on what *is* working, rather than what *isn’t*, and focusing on a future of health and vitality. I visualize going somewhere fabulous with Steve for our 15th wedding anniversary (or instead of a trip, jewelry would work just fine, Dear), doing something big for Jason’s “double digit” 10th birthday, or finally achieving my dream of going to Canyon Ranch for my 50th birthday (or perhaps we can push it to 45, Honey??).
Every birthday that comes and goes, whether mine or someone else’s, fills me with a sense of happiness and gratitude. You won’t find ME complaining about getting older, in fact just the opposite! In 2007, as I drove away from my doctor’s office, if you had told me that there would be a “gift” in this whole experience, I would have thought you were crazy. But now, looking back, I can honestly say that things do happen for a reason, and many good things have come from what was originally a frightening situation.
Gift #1: I appreciate my body
And I don’t mean just how I look on the outside, but the health and proper function of the inside. From a very young age, I remember having poor body image and not feeling confident in how I looked. Years of ballet with very slender girls, taught by a former principal dancer of the Boston Ballet didn’t help, and I remember trying various diets and exercises in an effort to look like the models on the cover of Seventeen magazine. Even throughout college I was self-conscious about my figure, and endured years of negative self-criticism. When I entered graduate school and began walking all over Boston and teaching group exercise classes, I finally lost quite a bit of weight and achieved an envious size 4. But I didn’t feel any less insecure; in fact I continued to pressure myself into “looking” a certain way, especially once I began working as a personal trainer. I continued to obsess about how I looked, like most women, before my wedding, and during and after my pregnancy.
One thing this entire experience has taught me is to appreciate the *inside* of my body and how lucky I am that is healthy and working properly once again. While I admit I eat well and exercise in an effort to stay at my “happy” weight and size, it is no longer the end-all, be-all of my existence. I’m proud to be 42—with the insides of a three year-old!
Gift #2: I am more “present”
I used to get so hung up on the house looking perfect, things going according to plan, or finishing the dishes/laundry/errands before I could relax and enjoy my family. One thing I learned from this experience is when faced with your own mortality you don’t care about the dishes being clean. Prior to my illness, I had a hard time going to bed until everything was “done”. I’m ashamed to say I would find my mind wandering as I was playing with Jason or reading him a goodnight story (“As soon as this is over, I have so much to do...”). While I wasn’t proud of this distraction, I told myself it was just part of being a busy parent. After my diagnosis, I instantly became much more present and mindful of the moment, whether with Jason, Steve, or my friends. I didn’t want those special moments to end, and I certainly didn’t want to waste them by mentally running down my to-do list. In fact, I found that the more present I was, the more I enjoyed it. How wonderful to actually *relish* a bedtime story, a trip to the pool, a movie with popcorn under a blanket?
Gift #3: Little things don’t upset me
After buzzing my hair off…TWICE…I’m so happy to have it back, you’ll never hear me complain about having a bad hair day. When I need to cancel plans to stay home and take care of Jason when he’s sick, I’m glad I’m around to do it. When I turned 40…then 41…then 42…I didn’t complain about getting older. I celebrated! When there’s 3 feet of snow on the ground, I won’t lie—I don’t love it. But things could be so much worse. Rather than focus on what’s not working, I try and shift my attention to what *is* working. Jason and I call it “changing the channel”. Steve just did the laundry and accidentally washed and dried a brand new top that required a cold, gentle cycle and NO tumble drying. Needless to say, the floral appliques were curled up and falling off. Was I happy about this? Of course not, but as soon as I started feeling upset, I thought to myself, “Change the channel!” It’s only a tank top (thank goodness I bought it at TJMaxx). Rather than waste energy on the negative, I do my best to look at the positive.
Gift #4: I’m able to help others
In an effort to increase awareness about amyloidosis in both the general public and medical communities, I’ve shared my story with our local paper, and been featured on an episode of Mystery Diagnosis. One local woman, frustrated after numerous tests failed to explain months of bizarre health symptoms, actually took the article to her doctor and demanded to be tested for amyloidosis. She tested positively, and was treated successfully at Boston Medical Center. She underwent her first stem cell transplant at the same time I was going through my second, and she and her husband have since become good friends. I also receive phone calls and emails from people all over the world who have seen the Mystery Diagnosis program, and communicate regularly with other newly-diagnosed patients via email support groups. Most recently, I became friendly with another lovely woman who is currently being treated at BMC. I am grateful that my experience has made it possible for me to offer support and guidance to others going through the same scary time.
Gift #5: I don’t take things for granted
My diagnosis came completely out of the blue—I was a young, healthy person, an avid exerciser, a nutritious eater. I don’t smoke, do drugs, or drink too much. I don’t even bake in the sun, so to be told that without prompt and proper treatment my prognosis was 12-15 months was quite a shock. If anything, this experience has given me a greater appreciation for my life and how I live it. Instead of a New Year’s Resolution, I dubbed 2011 “The Year of Awesome”! I want my coffee to be awesome. If we go out to eat, I want the food to be awesome. If I’m hanging out with friends, I want that quality time to be awesome. We never go to bed angry, and I make family time a priority. Things can turn on a dime at any moment, so I’m mindful of how I spend my time and energy.
A few years ago you couldn’t have convinced me that anything positive would come out of this experience. I could never have imagined that it would lead me to write a book to help other families, but if I had to go through all of that to get to this point, I can honestly say I am more deeply fulfilled and happier now having faced that challenge and emerged a stronger person both mentally and spiritually.
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