As the weeks ticked by, and arrangements were made in preparation for my leaving, I knew inevitably I would need to talk to Jason about what was happening. Up until this point, my four year old son was happily attending preschool three mornings a week, and going about his normal daily routine, enjoying occasional playdates and accompanying me to the gym several times a week. Jason had no idea that anything unusual was happening, or that anything was wrong with me. My first priority was to change as little as possible, so that aside from my absence, there would be very little disruption in his schedule. With school ending and summer vacation approaching, he would still see the same faces at the pool or at playdates, and I felt that would give him a sense of normalcy and predictability.
Once I knew that his summer activities and transportation had been arranged, it was time to start thinking about how I would discuss my illness and treatment with him, and tell him that I would be leaving for a short time. I fluctuated back and forth about whether to tell Jason the truth about what was happening, which would potentially scare him, or fabricate some creative story that would be less frightening. The thought of Jason accidentally finding out somehow that I had 'lied' to him was inconceivable to me, so I knew I had to be honest with him. How to best do that? I didn't know how he would react...would he cry? Hang on to me to keep me from leaving? Have nightmares? Not knowing what to do, I came up with a great idea--I'd find a book! That's what parents did when there was a serious family issue! Why didn't I think of this before? I knew there were books about potty training, divorce, changes in one's body during adolescence, even death and grief. Of course there were books to help answer kids' questions about sex, reproduction, adoption, having two mommies or two daddies. There had to be one about how to cope when one's mommy or daddy was sick. So I set out to find the perfect book.
I started with the major retailers, like Barnes & Noble and Borders. There were books about a parent with a disability, cancer, alcoholism, even depression, but I didn't have those conditions. I went to several smaller bookstores closer to home, still no luck. I hit the libraries, and Amazon.com, narrowing my search to the 'life issues' category. I found plenty of books about cancer...this was a popular disease. It was more common and well known, and therefore received more recognition. But I just couldn't imagine telling Jason I had something that I didn't have. I contacted the social worker at the JCC preschool where Jason was a student to see if perhaps she knew of any books which could help support a child with a sick parent, without a specific diagnosis, and she did not.
As parents, *we* are the caregivers. Children see us as all-powerful beings who keep them safe and chase the monsters out from under the bed. In a child's eyes, parents don't get sick, at least not seriously enough to need the child to take care of them. I knew that this was the way Jason perceived me, as "Super Mommy", able to play with him, carry him, and protect him, able to take care of the house, cooking, shopping and errands, always on the go, never needing a break. How would I explain not only my leaving, but the change in my physical appearance and abilities when I came home? Until I got stronger, I wouldn't be able to do many of the activities he was used to seeing me do--would he be upset, even angry? How would he react seeing me without my long curly hair? I couldn't even bear the thought of Jason being afraid to see me like that, or thinking I looked 'yukky'....what if he didn't want to hug, kiss or snuggle me? How does a four year old react to seeing his mother so changed from what he is used to?
Then I realized that it's not *what* you tell kids, so much as *how* you tell them. When Jason was smaller and fell down, knowing he was unhurt I'd smile and say, "Kaboom!" and we'd both giggle. I knew that if I overreacted, frantically checking every inch for a bump or bruise, he would see the concern and start to worry himself that something scary had just happened. With no book to guide me, I decided to tell Jason the truth about my situation, but in an upbeat, positive way. If he saw that I wasn't scared, then hopefully he wouldn't be either.
One day Jason was with me while I was cleaning up my bedroom. "Mommy," he said, "You remember that boo-boo I had? It's all gone--look!" and he showed me the area where a scrape had scabbed over, fallen off and healed. "How do boo-boos go away?" he asked.
Well if this wasn't the perfect time to discuss my situation with him, then I didn't know what would be. In my room by the window I still have the rocking glider from when he was an infant. "Come on over here, sweetie," I said, and pulled him onto my lap. "I have something I want to talk to you about."
I started to answer Jason's question by explaining the different cells in the body on a piece of paper: red cells, which give him energy to play, platelets, which stopped his boo-boo from bleeding and formed the scab, and white cells, which kept germs away and protected his scrape from infection. I had engaged his full attention, and he was really interested since I was using words he could understand. "Then sometimes, there are 'bad guys' that make you sick," I said, and drew a few sad faces :( on the page. "Sometimes, there can be boo-boos on the inside that you can't see. Mommy's doctor found a lot of these 'bad guys' in my body, and will need to give me strong medicine to get rid of all of them." In a matter of fact way, I explained to Jason that the medicine was too strong for me to take by myself at home, and that the doctor would be in charge of giving it to me. To do that, I would need to have a long sleepover at the hospital for a few weeks. I told him that when Nana Sue came to visit, which she did every summer, they would do all the fun things they usually did: go to camp, the pool and the playground, play games, and read stories until I came home. Then I told him that the medicine would be so strong, it would not only get rid of the 'bad guys', but the good cells too. When this happened, I would feel like a superhero without my superpowers. I knew Jason was listening because right away he asked, "Like when Syndrome captured Mr. Incredible, and he couldn't get out?" We had just watched The Incredibles during the past week, and this couldn't have been a better example. "Exactly!" I said, offering a second comparison of Superman losing his superpowers in the presence of Kryptonite. Jason seemed like he was handling all of this information incredibly well, so we talked about some of the things I wouldn't be able to do until I got stronger. "How will you get your superpowers back?" Jason asked. I was so excited at how well this conversation was going! I explained to him how the doctor would give me healthy new baby cells, and as the baby cells grew, my superpowers would come back. Not wanting to overwhelm him with information, I decided to wrap it up and move on with our day, once I had shared one last detail. "But Jason," I said, "the strong medicine is so strong, it's also going to make my hair fall out." Afraid of how he'd react, I tried to use some humor. "See how your hair is so short and fuzzy, and Daddy's is too? Well, that's what Mommy's going to look like! I'm going to have a buzz cut just like you and Daddy! Won't that be funny? We'll all have matching haircuts!" We both laughed and he seemed tickled at the thought. I was glad to see he was amused, but my mind was racing...did I explain that okay? Did I tell him enough, but not too much? Or did I tell him too little? I wanted to tell him the truth so that he would know what to expect, but now I feared I may have just scarred him for life. Was he too young to process this information? "Mommy?" he said.
Oh no. Here it comes. Questions I can't answer. What if Jason asks me if I might die? How do I answer that? Maybe I should have waited until Steve was home to help me do this. Would he have bad dreams tonight? "Mommy?!" he said again.
"Yes honey?"
"Can I have more juice now?" Well I guess that went well! Right then and there, I knew that at some point when all this was over, I was going to write the book I didn't have.
Sunday, January 30, 2011
Friday, January 28, 2011
Back to the story
The day I was diagnosed with amyloidosis was one of the scariest days of my life. I had so many questions...how had this happened to me? When had my bone marrow gone haywire? How long had the deposits been building up in my kidneys? How damaged were they? And if my kidneys were affected, which other organs might also be involved? How advanced was the disease? Had I caught it early enough? Would the treatment be successful? All of these questions and more were swirling in my head as I tucked Jason into bed that night. He was only four years old at the time and had absolutely no idea what I had learned just a few hours prior. We followed our nightly routine of a bath and a story in bed, but while my lips read the words my mind was elsewhere. Being a full-time mom, Jason and I had an incredibly close relationship. Since he had no siblings, we had a particularly strong bond. There was just no way I could imagine not being here for him as he entered kindergarten, learned to read, and started sports. I could not picture him growing up without me by his side. As we snuggled in bed with him tucked perfectly under my arm, I knew I had so much to fight for. This disease had picked the wrong mom to mess with.
I was scheduled for an evaluation in Boston to confirm the diagnosis at the end of March, 2007. Steve was by my side as I underwent three days of incredibly rigorous testing which made a routine physical seem like a joke. Extensive bloodwork was taken along with an abdominal fat biopsy, EKG, echocardiogram, full pulmonary work-up, bone marrow biopsy, and every possible restroom test you can imagine. As expected, I was found to be a good candidate for the most aggressive treatment available: high-dose chemotherapy with a stem cell transplant. Unfortunately, not every amyloidosis patient is able to tolerate the toxicity of this mode of treatment. We both remember quite clearly our conversation with the Clinical Director of the Stem Cell Program. When asked what the risks entailed, she told us matter-of-factly, "You could die." But Steve and I agreed that we wanted to bring in the big guns to deal with this disease.
After I was approved for the program, the details of the treatment were laid out for us. First, a chest port would be inserted for the duration of the treatment, anywhere from 1-2 months. Then, a growth hormone injection would be administered in order to stimulate my bones to go into overdrive producing new stem cells. I would spend 2-3 days at the clinic hooked up to a stem cell separator machine, similiar to a dialysis machine, for much of the day while my own stem cells were extracted, preserved, and then frozen in preparation for the transplant. During this part of the process, I would still live at home and drive into the city each day.
Prior to receiving the chemotherapy, I would be required to find temporary housing within 5-10 minutes from the emergency room for the duration of the treatment, as the high dose of chemotherapy would completely wipe out my immune system. After the chemotherapy, my own stem cells would be thawed and given back to me via IV. With no defense whatsoever against even the slightest cold or virus, I would be at high risk of infection. As a result, I would need to adhere to a neutropenic, or low-bacteria diet. No fresh fruits or veggies, and only well-cooked food would be allowed. A compromised immune system would also mean I would be unable to see Jason at all during this time, until I was discharged from the program...which for me, would be the worst aspect of this ordeal. Since children pick up all sorts of bugs in school, I could become critically ill from a germ easily defeated by Jason's immune system. I felt I could handle any side effects the chemotherapy threw at me: nausea, vomiting, hair loss, potty issues...but to be separated from my son; his smell, his hugs, his kisses, his voice...for three, four, six weeks or longer was more than I could take.
A week or so later, I was given a start date of May 30. Over the next eight weeks, my friends, family and I went into high gear preparing for my departure, with much the same intensity as a pit crew on a race track. Like a well-oiled machine, we pulled together to arrange care for Jason, transportation to and from school and activities, playdates with friends, meals for the freezer and to be delivered to the house, as well as food for me and Steve to take to Boston with us. As all of these tasks were accomplished, I set out to take on the most important one of all: carefully planning how and when I would tell Jason what Mommy was going through and what was about to happen.
I was scheduled for an evaluation in Boston to confirm the diagnosis at the end of March, 2007. Steve was by my side as I underwent three days of incredibly rigorous testing which made a routine physical seem like a joke. Extensive bloodwork was taken along with an abdominal fat biopsy, EKG, echocardiogram, full pulmonary work-up, bone marrow biopsy, and every possible restroom test you can imagine. As expected, I was found to be a good candidate for the most aggressive treatment available: high-dose chemotherapy with a stem cell transplant. Unfortunately, not every amyloidosis patient is able to tolerate the toxicity of this mode of treatment. We both remember quite clearly our conversation with the Clinical Director of the Stem Cell Program. When asked what the risks entailed, she told us matter-of-factly, "You could die." But Steve and I agreed that we wanted to bring in the big guns to deal with this disease.
After I was approved for the program, the details of the treatment were laid out for us. First, a chest port would be inserted for the duration of the treatment, anywhere from 1-2 months. Then, a growth hormone injection would be administered in order to stimulate my bones to go into overdrive producing new stem cells. I would spend 2-3 days at the clinic hooked up to a stem cell separator machine, similiar to a dialysis machine, for much of the day while my own stem cells were extracted, preserved, and then frozen in preparation for the transplant. During this part of the process, I would still live at home and drive into the city each day.
Prior to receiving the chemotherapy, I would be required to find temporary housing within 5-10 minutes from the emergency room for the duration of the treatment, as the high dose of chemotherapy would completely wipe out my immune system. After the chemotherapy, my own stem cells would be thawed and given back to me via IV. With no defense whatsoever against even the slightest cold or virus, I would be at high risk of infection. As a result, I would need to adhere to a neutropenic, or low-bacteria diet. No fresh fruits or veggies, and only well-cooked food would be allowed. A compromised immune system would also mean I would be unable to see Jason at all during this time, until I was discharged from the program...which for me, would be the worst aspect of this ordeal. Since children pick up all sorts of bugs in school, I could become critically ill from a germ easily defeated by Jason's immune system. I felt I could handle any side effects the chemotherapy threw at me: nausea, vomiting, hair loss, potty issues...but to be separated from my son; his smell, his hugs, his kisses, his voice...for three, four, six weeks or longer was more than I could take.
A week or so later, I was given a start date of May 30. Over the next eight weeks, my friends, family and I went into high gear preparing for my departure, with much the same intensity as a pit crew on a race track. Like a well-oiled machine, we pulled together to arrange care for Jason, transportation to and from school and activities, playdates with friends, meals for the freezer and to be delivered to the house, as well as food for me and Steve to take to Boston with us. As all of these tasks were accomplished, I set out to take on the most important one of all: carefully planning how and when I would tell Jason what Mommy was going through and what was about to happen.
Thursday, January 27, 2011
A perfect birthday
Taking it all in
What started out as a pretty good day with fat ankles and a coffee date with my dad was becoming a complete nightmare. Chemotherapy? A stem cell transplant?! My mind was racing and I was having a hard time concentrating on the information that my doctor was so patiently, but truthfully, trying to relay to me. Thank goodness my dad was there to be an extra set of ears. My doctor explained that amyloidosis was a rare and life-threatening disease, striking only 8 in a million people. However, it manifests differently in every patient, so very often the disease goes undetected or misdiagnosed, which means these numbers may not factor into that figure. The cause of amyloidosis is unknown, but doctors do know that the disease begins in the bone marrow. In addition to producing red cells, white cells, and platelets, the bone marrow makes plasma cells, which are antibodies that protect against infection and disease. Normally, the body can break down and metabolize these plasma cells, like any other cell in the body. Amyloidosis occurs when plasma cells "fold" incorrectly and are unable to be broken down. These antibodies build up in the bloodstream and deposit themselves in the organ tissues as amyloid deposits, or fibrils, and interfere with normal organ function. The disease is progressive and can affect any organ in the body, and without proper treatment, the prognosis is only 12-15 months. The lethalness of the disease is attributed to the nature in which it attacks the major organs, and, perhaps more importantly, the high rate at which it is misdiagnosed by doctors who are not aware of the disease. Most doctors concentrate on the organ being damaged, without ever considering that the problem is with the bone marrow and build up of protein fibrils in the blood, not the organ itself. The only way amyloid can be detected in the lab is for the pathologist to use a stain called "Congo Red" on the tissue sample. Fortunately, my doctor knew to request this special stain for my kidney biopsy. Usually by the time a patient is transferred to a skilled specialist who can make an accurate diagnosis, the damage to the affected organs has often progressed to a level which is difficult to treat. The majority of people who get amyloidosis are older than 40 and male, making my case even more unusual.
I could not believe what I was hearing. I was in tears and my mind was racing...I had a four year old son who was the center of my world...how would I take care of him? Would I survive this? Had I caught this early or late? Would I see him start kindergarten? What the hell was happening?!
My doctor explained that the most effective treatment would be to undergo high-dose chemotherapy and an autologous stem cell transplant at Boston Medical Center. That means I would produce my own stem cells and not need an outside donor. The Amyloid Treatment and Research Program at Boston Medical Center is one of the leading facilities in the country, treating patients and educating medical professionals from all over the world.
I finally had the answers I was looking for (as well as a new prescription for Xanax) as to what was causing the swelling in my legs. But there were endless new questions: when would the treatment start? What would it entail? Was this a hereditary disease that could have been passed down to Jason? Would the treatment work? How would it change me? Would I ever be healthy again? My mind kept going back to my son. What do I tell him? *When* do I tell him? And *how* would I explain this in a way that would not frighten him? Steve and I decided to wait until we had all the information and understood all the details of what the treatment would entail before we involved Jason.
I could not believe what I was hearing. I was in tears and my mind was racing...I had a four year old son who was the center of my world...how would I take care of him? Would I survive this? Had I caught this early or late? Would I see him start kindergarten? What the hell was happening?!
My doctor explained that the most effective treatment would be to undergo high-dose chemotherapy and an autologous stem cell transplant at Boston Medical Center. That means I would produce my own stem cells and not need an outside donor. The Amyloid Treatment and Research Program at Boston Medical Center is one of the leading facilities in the country, treating patients and educating medical professionals from all over the world.
I finally had the answers I was looking for (as well as a new prescription for Xanax) as to what was causing the swelling in my legs. But there were endless new questions: when would the treatment start? What would it entail? Was this a hereditary disease that could have been passed down to Jason? Would the treatment work? How would it change me? Would I ever be healthy again? My mind kept going back to my son. What do I tell him? *When* do I tell him? And *how* would I explain this in a way that would not frighten him? Steve and I decided to wait until we had all the information and understood all the details of what the treatment would entail before we involved Jason.
Wednesday, January 26, 2011
A look back
On November 11, 2006, my family and I were having dinner with friends at their home. The kids were playing in the basement, and we were catching up in the kitchen. Since my girlfriend is a nurse at a Boston hospital, I decided to ask for her professional opinion. A month prior, I had noticed my legs and feet were unusually puffy and swollen, to the point where I couldn't see my ankles. I had been at a friend's wedding, and had assumed that the extra fluid was due to the salt in the catered food. This particular evening, my legs and ankles were so swollen, I was puffy right down to my toes. My friend took a look and said this was edema, or water retention in the tissues, and while not an emergency, suggested that I see my primary care doctor as soon as possible. Since we were already on the topic of my health, I also happened to mention to her that I had been shocked a few weeks prior when at a routine physical, my PCP had informed me that my cholesterol was 364! I couldn't understand how a former personal trainer like myself, who ate a healthy diet and exercised regularly, could have such high cholesterol. The doctor had no explanation for it and had prescribed a statin medication. At the time, neither my friend nor I connected the two issues.
I was able to make an appointment with my PCP a few days later. She took a look at my swollen legs, suggested that I might just be due to "bad veins" (whatever that meant), and took blood and urine tests. The results showed nothing unusual, and I was sent home. For the rest of the month, I Googled relentlessly for possible causes of edema in an otherwise healthy, young person. I had no idea how long my cholesterol had been at this high level...could I have congestive heart failure?? What about peripheral vascular disease?? Maybe my hormones are out of whack and I have Metabolic Syndrome?? In an effort to be proactive, I went off the birth control pill to eliminate any artificial hormones. I drank a ton of water in an effort to flush out the fluid, and strictly limited my salt intake. I even went so far as to request an order for an echocardiogram to rule out a heart problem--the test came back normal. My PCP referred me to a vascular specialist who found nothing to explain the edema. I was not only frustrated, but uncomfortable and totally self-conscious about my appearance.
The swelling and puffiness persisted over the next couple of months until in January, it became even worse. We were preparing to leave for Florida to visit my in-laws, and the edema was so bad that I couldn't even kneel to pack my suitcase. It was difficult to bend my knees, and I could feel the tension when trying to point and flex my feet. I was in tears with my legs elevated, not only desperate to know what could be causing this amount of fluid retention, but quite frightened to find out. I called my PCP, who recommended a 24-hour urine test...AFTER I returned home from Florida.
The trip was so difficult to enjoy...having to sit on the plane to and from FL was incredibly uncomfortable. The only shoes I could wear were flip flops. And it was impossible to hide my legs with skirts and capris. I couldn't get home fast enough. Once we did, I immediately took the 24 hour test and completed the corresponding bloodwork. I waited anxiously for my doctor to call with the results.
Finally my doctor called to inform me that I was losing a large amount of protein in my urine, which was causing the levels of protein in my blood to drop. This indicated a problem with my kidneys, which would need to be determined by a nephrologist. I asked her why this was happening, and while she could not pinpoint the cause of the problem, she likened my kidneys to pouring pasta into a colander. The holes in the colander are supposed to be big enough to let the water drain out (ie, the urine), but small enough to keep the pasta inside (ie, the protein). When the kidneys are injured in some way, the holes get bigger, and some of the "pasta" is lost with the "water".
I went home and instantly started Googling my symptoms: unexplained high cholesterol, edema, proteinuria, low blood protein. The condition that kept showing up was nephrotic syndrome. Steve was ready to padlock the computer and shut down our internet connection, and I was unable to concentrate on anything except how this could possibly be happening.
A couple of weeks later, I met with the nephrologist. I was instantly impressed with his calm, soothing manner, how thoroughly he obtained every detail of the past several months, and the length of time he spent with me. He confirmed that I did in fact have nephrotic syndrome, which is not a disease in itself, but a condition that indicates some sort of kidney tissue damage. In order to uncover the cause of this tissue damage, a kidney biopsy would need to be performed. We scheduled the procedure, and I left with a prescription for a diuretic to help reduce the edema, as well as potassium to keep my electrolytes in check.
I underwent the biopsy at the end of February, 2007 without complications, and stayed overnight in the hospital for observation.
As we waited for the results of the biopsy, my parents were very supportive, but as one would expect, incredibly concerned. My mother offered to accompany me to my next appointment, but I declined her offer, since I felt it wasn't worth disrupting her schedule. A couple days later, my father offered to come with me under the guise of taking me out to coffee. At this point I was so exhausted from months of tests and doctor appointments, I didn't have the energy to argue. I let him pick me up, thinking at the very least I was getting a latte out of the deal.
A week later I was excited about meeting with my nephrologist and finally having the answers I needed. I figured at best, I might need to take medication or undergo surgery to "cure" this condition, and the worst case scenario would be having some autoimmune condition for the rest of my life which would need to be managed with a few daily pills. Either way, I was prepared to receive the news, process it, and be on time to pick up Jason from preschool. As promised, my dad picked me up for our coffee date, and we headed over to the office.
I left my dad in the waiting area while I followed my doctor into the exam room to discuss the biopsy. I was in good spirits, having enjoyed my latte, and ready to add a few more prescriptions to my "collection". As the doctor began speaking, I remember hearing, "...serious disease....very rare.....amyloidosis....chemotherapy and stem cell transplant....go to Boston...". I felt my heart drop to my stomach and the chills come over me. I held up my hand for him to take a pause. "Can I go get my dad?!" I asked.
I was able to make an appointment with my PCP a few days later. She took a look at my swollen legs, suggested that I might just be due to "bad veins" (whatever that meant), and took blood and urine tests. The results showed nothing unusual, and I was sent home. For the rest of the month, I Googled relentlessly for possible causes of edema in an otherwise healthy, young person. I had no idea how long my cholesterol had been at this high level...could I have congestive heart failure?? What about peripheral vascular disease?? Maybe my hormones are out of whack and I have Metabolic Syndrome?? In an effort to be proactive, I went off the birth control pill to eliminate any artificial hormones. I drank a ton of water in an effort to flush out the fluid, and strictly limited my salt intake. I even went so far as to request an order for an echocardiogram to rule out a heart problem--the test came back normal. My PCP referred me to a vascular specialist who found nothing to explain the edema. I was not only frustrated, but uncomfortable and totally self-conscious about my appearance.
The swelling and puffiness persisted over the next couple of months until in January, it became even worse. We were preparing to leave for Florida to visit my in-laws, and the edema was so bad that I couldn't even kneel to pack my suitcase. It was difficult to bend my knees, and I could feel the tension when trying to point and flex my feet. I was in tears with my legs elevated, not only desperate to know what could be causing this amount of fluid retention, but quite frightened to find out. I called my PCP, who recommended a 24-hour urine test...AFTER I returned home from Florida.
The trip was so difficult to enjoy...having to sit on the plane to and from FL was incredibly uncomfortable. The only shoes I could wear were flip flops. And it was impossible to hide my legs with skirts and capris. I couldn't get home fast enough. Once we did, I immediately took the 24 hour test and completed the corresponding bloodwork. I waited anxiously for my doctor to call with the results.
Finally my doctor called to inform me that I was losing a large amount of protein in my urine, which was causing the levels of protein in my blood to drop. This indicated a problem with my kidneys, which would need to be determined by a nephrologist. I asked her why this was happening, and while she could not pinpoint the cause of the problem, she likened my kidneys to pouring pasta into a colander. The holes in the colander are supposed to be big enough to let the water drain out (ie, the urine), but small enough to keep the pasta inside (ie, the protein). When the kidneys are injured in some way, the holes get bigger, and some of the "pasta" is lost with the "water".
I went home and instantly started Googling my symptoms: unexplained high cholesterol, edema, proteinuria, low blood protein. The condition that kept showing up was nephrotic syndrome. Steve was ready to padlock the computer and shut down our internet connection, and I was unable to concentrate on anything except how this could possibly be happening.
A couple of weeks later, I met with the nephrologist. I was instantly impressed with his calm, soothing manner, how thoroughly he obtained every detail of the past several months, and the length of time he spent with me. He confirmed that I did in fact have nephrotic syndrome, which is not a disease in itself, but a condition that indicates some sort of kidney tissue damage. In order to uncover the cause of this tissue damage, a kidney biopsy would need to be performed. We scheduled the procedure, and I left with a prescription for a diuretic to help reduce the edema, as well as potassium to keep my electrolytes in check.
I underwent the biopsy at the end of February, 2007 without complications, and stayed overnight in the hospital for observation.
As we waited for the results of the biopsy, my parents were very supportive, but as one would expect, incredibly concerned. My mother offered to accompany me to my next appointment, but I declined her offer, since I felt it wasn't worth disrupting her schedule. A couple days later, my father offered to come with me under the guise of taking me out to coffee. At this point I was so exhausted from months of tests and doctor appointments, I didn't have the energy to argue. I let him pick me up, thinking at the very least I was getting a latte out of the deal.
A week later I was excited about meeting with my nephrologist and finally having the answers I needed. I figured at best, I might need to take medication or undergo surgery to "cure" this condition, and the worst case scenario would be having some autoimmune condition for the rest of my life which would need to be managed with a few daily pills. Either way, I was prepared to receive the news, process it, and be on time to pick up Jason from preschool. As promised, my dad picked me up for our coffee date, and we headed over to the office.
I left my dad in the waiting area while I followed my doctor into the exam room to discuss the biopsy. I was in good spirits, having enjoyed my latte, and ready to add a few more prescriptions to my "collection". As the doctor began speaking, I remember hearing, "...serious disease....very rare.....amyloidosis....chemotherapy and stem cell transplant....go to Boston...". I felt my heart drop to my stomach and the chills come over me. I held up my hand for him to take a pause. "Can I go get my dad?!" I asked.
Birthdays are a gift
How often do you notice people complaining about another birthday? It's usually growing older that is the most common complaint, although I've known a couple people to admit not enjoying being the center of attention for a day...they just don't enjoy receiving phone calls, or even gifts. For others, they just don't "get" what the big deal is about. But if you've ever been in a situation where you weren't sure how many more birthdays you'd see, having them would take on a whole new meaning.
When I finished my last blog entry, my intention was to start sharing my story from the beginning, and explain how my children's picture book, Where Did Mommy's Superpowers Go? was written. But with my 42nd birthday coming tomorrow, I just had to express how happy I am to be having it! People joke that "40 is the new 20", but I like to say I'm 42 with the insides of a 3 year-old! I never complain about getting older, in fact, I relish it! I've already enjoyed a special lunch date at a fabulous restaurant with a one of my closest friends, as well as a wonderful evening having dinner with a few more friends I consider more like family. All I'm doing is eating...yesterday I had lunch with a dear friend of almost 20 years!!! Tomorrow, weather permitting, I'm looking forward to having lunch with two more long-time friends who've seen me through thick and thin. How great is it that I get to celebrate with these amazing ladies?! Not to mention the lovefest I expect to have with Jason, who at only 7 has become a master of surprise. He is well on his way to an Academy Award the way he can pretend, with a totally straight face, that he doesn't have a card or gift for me, that "Daddy forgot" to take him, and then VOILA! He showers me with the most thoughtful handwritten note or homemade present (see attached photo of this year's artistic masterpiece!):
Of course I'm looking forward to a romantic dinner date with Steve this weekend, as well as spending some quality time with my sister, which is always so much fun and doesn't happen nearly enough. And since this birthday hasn't had enough eating, I can't wait to have a special ladies' brunch with my mom, whose birthday was only 10 days ago. Yes, I am full of gratitude for another birthday...and am going to *rock* 42. I don't think I'll even lie about my age...I want to announce it every year with pride!
When I finished my last blog entry, my intention was to start sharing my story from the beginning, and explain how my children's picture book, Where Did Mommy's Superpowers Go? was written. But with my 42nd birthday coming tomorrow, I just had to express how happy I am to be having it! People joke that "40 is the new 20", but I like to say I'm 42 with the insides of a 3 year-old! I never complain about getting older, in fact, I relish it! I've already enjoyed a special lunch date at a fabulous restaurant with a one of my closest friends, as well as a wonderful evening having dinner with a few more friends I consider more like family. All I'm doing is eating...yesterday I had lunch with a dear friend of almost 20 years!!! Tomorrow, weather permitting, I'm looking forward to having lunch with two more long-time friends who've seen me through thick and thin. How great is it that I get to celebrate with these amazing ladies?! Not to mention the lovefest I expect to have with Jason, who at only 7 has become a master of surprise. He is well on his way to an Academy Award the way he can pretend, with a totally straight face, that he doesn't have a card or gift for me, that "Daddy forgot" to take him, and then VOILA! He showers me with the most thoughtful handwritten note or homemade present (see attached photo of this year's artistic masterpiece!):
Of course I'm looking forward to a romantic dinner date with Steve this weekend, as well as spending some quality time with my sister, which is always so much fun and doesn't happen nearly enough. And since this birthday hasn't had enough eating, I can't wait to have a special ladies' brunch with my mom, whose birthday was only 10 days ago. Yes, I am full of gratitude for another birthday...and am going to *rock* 42. I don't think I'll even lie about my age...I want to announce it every year with pride!
Sunday, January 23, 2011
A perfect Sunday
What a great day today has been so far...and it's not even over yet! Steve, Jason and I are returning home from visiting some good friends in their new house, and my plan as soon as I walk in the door are to immediately change into my comfy lounge clothes, and curl up on the couch in front of a cozy fire! We've already had a terrific homecooked meal at our friends' home--sort of a 3:00 late lunch/early dinner type of thing--so I don't even have to worry about making supper. I'll wrap up the day with an episode of Desperate Housewives and go to bed happy!
Sundays are my favorite day of the week...it's the only day of the week I don't need to set the alarm clock! Since I need to wake up before 6:30 six days/week, I savor this one morning when I can sleep until Jason comes in to kiss me--which he has been highly trained to do AFTER 7 a.m.! Then he climbs in and wedges himself in between me and Steve, and I get to snuggle and doze a little longer until the unthinkable hour of 8:00, at which point Jason bolts upright and says, "Okay Mommy! It's 8:00! Time to go downstairs!"
Jason and I usually let Steve sleep until 9 while we relax downstairs, watching the Today Show (I love Lester and Jenna on Sundays!) or something of Jason's choosing. I make coffee as usual, but on Sundays I like to make it a bit more decadent by heating my cup first and warming the milk. Sounds silly, but it's a small, easy ritual to set Sunday apart from every other morning. I like the Sunday paper, particularly Miss Conduct in the Boston Globe magazine. By then it's time to wake up Steve and somehow enroll him in making breakfast for us! Today we managed to persuade him into whipping up chocolate chip pancakes and bacon. Did I mention that Sundays are also the only morning of the week that I don't have to make breakfast? That's a vacation in itself!
But most of all, Sundays are when I feel the most grateful. When Jason wakes me with a kiss, I look at my gorgeous 7 and 1/2 year old boy and think how lucky I am to still be here to receive this tender wake up call. There was a time when I was afraid I might not see this age. I'm thankful for his health and vitality. I know how fortunate I am to still be lying here next to my amazing husband, who looks adorable, deeply asleep, an endearing Breathe-Right strip glued to his nose, no match for his persistent snoring. As Jason climbs under the covers, I no longer feel the anxious urge to check the size of my legs, ankles and feet, which used to be so swollen and tight just bending my knees and pointing my toes was uncomfortable. No.....on Sundays I have the time to savor the feeling of gratitude, to fully appreciate being alive, healthy, comfortable in my body, and present with my family.
Sundays were not always like this. In fact, back in 2007, waking up in the morning was something I dreaded. As my feet hit the floor, I was greeted daily with the unsightly reminder that something was terribly wrong with me. I was dragging around an extra 10-15 lbs of fluid. I not only felt awful, but was incredibly depressed about how I looked. I was used to being fit, healthy and active; not swollen from my belly to my toes. My main concern was how to get through the day and get back in bed as fast as possible so I could go back to sleep and temporarily escape this harsh reality.
But today was a great day, and while Jason was at Hebrew school, I did something different and took a Zumba class with a girlfriend. It didn't matter that I was new to the moves, or that my Jewish hips just wouldn't cooperate with those Latin steps; I just enjoyed an hour of great music and quality time with my friend. Although I felt a bit out of shape, that didn't take away from how happy I was to have come full circle over the past four years. At that time, I was insecure and preoccupied with my weight, trying to find ways to hide my larger figure at the gym, and anxiously wondering how much worse it might become. But now, I'm back to a healthy weight and size, and feel good about how I look in my workout clothes. During the class, I was so grateful for my health and my ability, however limited, to mambo and cha-cha!
After Hebrew school we all headed over to see our friends and their new house. As usual, Jason disappeared to play with their three children while we got a chance to talk and finish cooking. We've shared many wonderful experiences over the past 14 years, and I'm grateful for our long friendship. I also couldn't help but remember that it was in this girlfriend's kitchen back in November 2006, at a Sunday family dinner much like tonight, that my long journey began.
Sundays are my favorite day of the week...it's the only day of the week I don't need to set the alarm clock! Since I need to wake up before 6:30 six days/week, I savor this one morning when I can sleep until Jason comes in to kiss me--which he has been highly trained to do AFTER 7 a.m.! Then he climbs in and wedges himself in between me and Steve, and I get to snuggle and doze a little longer until the unthinkable hour of 8:00, at which point Jason bolts upright and says, "Okay Mommy! It's 8:00! Time to go downstairs!"
Jason and I usually let Steve sleep until 9 while we relax downstairs, watching the Today Show (I love Lester and Jenna on Sundays!) or something of Jason's choosing. I make coffee as usual, but on Sundays I like to make it a bit more decadent by heating my cup first and warming the milk. Sounds silly, but it's a small, easy ritual to set Sunday apart from every other morning. I like the Sunday paper, particularly Miss Conduct in the Boston Globe magazine. By then it's time to wake up Steve and somehow enroll him in making breakfast for us! Today we managed to persuade him into whipping up chocolate chip pancakes and bacon. Did I mention that Sundays are also the only morning of the week that I don't have to make breakfast? That's a vacation in itself!
But most of all, Sundays are when I feel the most grateful. When Jason wakes me with a kiss, I look at my gorgeous 7 and 1/2 year old boy and think how lucky I am to still be here to receive this tender wake up call. There was a time when I was afraid I might not see this age. I'm thankful for his health and vitality. I know how fortunate I am to still be lying here next to my amazing husband, who looks adorable, deeply asleep, an endearing Breathe-Right strip glued to his nose, no match for his persistent snoring. As Jason climbs under the covers, I no longer feel the anxious urge to check the size of my legs, ankles and feet, which used to be so swollen and tight just bending my knees and pointing my toes was uncomfortable. No.....on Sundays I have the time to savor the feeling of gratitude, to fully appreciate being alive, healthy, comfortable in my body, and present with my family.
Sundays were not always like this. In fact, back in 2007, waking up in the morning was something I dreaded. As my feet hit the floor, I was greeted daily with the unsightly reminder that something was terribly wrong with me. I was dragging around an extra 10-15 lbs of fluid. I not only felt awful, but was incredibly depressed about how I looked. I was used to being fit, healthy and active; not swollen from my belly to my toes. My main concern was how to get through the day and get back in bed as fast as possible so I could go back to sleep and temporarily escape this harsh reality.
But today was a great day, and while Jason was at Hebrew school, I did something different and took a Zumba class with a girlfriend. It didn't matter that I was new to the moves, or that my Jewish hips just wouldn't cooperate with those Latin steps; I just enjoyed an hour of great music and quality time with my friend. Although I felt a bit out of shape, that didn't take away from how happy I was to have come full circle over the past four years. At that time, I was insecure and preoccupied with my weight, trying to find ways to hide my larger figure at the gym, and anxiously wondering how much worse it might become. But now, I'm back to a healthy weight and size, and feel good about how I look in my workout clothes. During the class, I was so grateful for my health and my ability, however limited, to mambo and cha-cha!
After Hebrew school we all headed over to see our friends and their new house. As usual, Jason disappeared to play with their three children while we got a chance to talk and finish cooking. We've shared many wonderful experiences over the past 14 years, and I'm grateful for our long friendship. I also couldn't help but remember that it was in this girlfriend's kitchen back in November 2006, at a Sunday family dinner much like tonight, that my long journey began.
Saturday, January 22, 2011
So *this* is blogging!
As I sit here in front of my newly-created blog, relaxing with a hot cup of dark roast coffee, my feet resting on the toasty baseboard heater, the soothing trickle of the fish tank filter gurgling in the background, I'm enjoying a short window of quiet, uninterupted solitude. My husband Steve and 7 year-old son Jason will be back from lacrosse in about an hour, and we have a typical, non-stop weekend ahead of us. But before the back-to-back activities of the weekend ramps up to full-gear, I can't help but think back to where I was at this same time, four years ago. In January of 2007, I was incapable of relaxing. I was spending any free moment Googling my strange symptoms, trying to find out what was wrong with me. I was so distracted by the scary changes in my body, and completely preoccupied with the fear of not knowing what was happening. I was desperate to find answers, because at that point, my doctor hadn't been able to find any.
What a difference to how I'm feeling today, healthy and whole, energized and ready to tackle whatever the weekend throws at me. Any moment now, Steve and Jason will return from lacrosse, and I'll shift to full-on mommy-mode, getting him changed for the next activity, dropping him off and squeezing in a few errands before I pick him back up again. After lunch, we'll head for a birthday party, where I can catch up with some friends while the kids play. When the party's over, we'll return home and I'll simultaneously get myself glammed up for a nice dinner date with friends, while also making dinner for Jason and the sitter. I look forward to dressing up and going out now, whereas four years ago I only wanted to stay in and hide behind my sweatpants. It was impossible to enjoy a carefree dinner date at that time since I was unable to concentrate on anything except how awful I looked and felt.
But here I am, back to my happy self, creating a blog named for the children's picture book I wrote in 2008 in the midst of the biggest health crisis of my life. Where Did Mommy's Superpowers Go? is the story that came to me as I tried to explain to Jason, who was only four years old, what was happening to me. In the eyes of a child at that age, parents are right up there with superheroes. We don't get sick! We don't take days (or weeks, or months) off! But how would I explain to him, without frightening him, what my doctors had discovered? How would I help him understand what I'd be going through, and how it would change my appearance, and my physical abilities? I wanted so desperately to reassure him that I would be okay, but to be honest, at the time, nothing was guaranteed. I knew it could be scary for a kid to learn a parent was sick, to see them in that weak, vulnerable state. I also knew it wasn't so much *what* I told Jason, but *how* I told him. I decided that the best way for me to handle the situation was to tell Jason the truth, in an upbeat and positive way, in language he could understand, and hope for the best.
So where IS this fabulous book, you may be wondering? I've been in the process of self-publishing it since last May, and I'm so excited to be in the final stages. A few more tweaks, and hopefully we'll be ready to go to print by early spring! In the meantime, this blog can help chronicle the events of the past four years, and tell the story of how Where Did Mommy's Superpowers Go? came to be.
What a difference to how I'm feeling today, healthy and whole, energized and ready to tackle whatever the weekend throws at me. Any moment now, Steve and Jason will return from lacrosse, and I'll shift to full-on mommy-mode, getting him changed for the next activity, dropping him off and squeezing in a few errands before I pick him back up again. After lunch, we'll head for a birthday party, where I can catch up with some friends while the kids play. When the party's over, we'll return home and I'll simultaneously get myself glammed up for a nice dinner date with friends, while also making dinner for Jason and the sitter. I look forward to dressing up and going out now, whereas four years ago I only wanted to stay in and hide behind my sweatpants. It was impossible to enjoy a carefree dinner date at that time since I was unable to concentrate on anything except how awful I looked and felt.
But here I am, back to my happy self, creating a blog named for the children's picture book I wrote in 2008 in the midst of the biggest health crisis of my life. Where Did Mommy's Superpowers Go? is the story that came to me as I tried to explain to Jason, who was only four years old, what was happening to me. In the eyes of a child at that age, parents are right up there with superheroes. We don't get sick! We don't take days (or weeks, or months) off! But how would I explain to him, without frightening him, what my doctors had discovered? How would I help him understand what I'd be going through, and how it would change my appearance, and my physical abilities? I wanted so desperately to reassure him that I would be okay, but to be honest, at the time, nothing was guaranteed. I knew it could be scary for a kid to learn a parent was sick, to see them in that weak, vulnerable state. I also knew it wasn't so much *what* I told Jason, but *how* I told him. I decided that the best way for me to handle the situation was to tell Jason the truth, in an upbeat and positive way, in language he could understand, and hope for the best.
So where IS this fabulous book, you may be wondering? I've been in the process of self-publishing it since last May, and I'm so excited to be in the final stages. A few more tweaks, and hopefully we'll be ready to go to print by early spring! In the meantime, this blog can help chronicle the events of the past four years, and tell the story of how Where Did Mommy's Superpowers Go? came to be.
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