Monday, October 17, 2011
Waiting
I'm writing from Swedish Hospital as my dad is undergoing his prostate cancer surgery. I've spent a lot of time in hospitals this year, but this is my first time this year as the family member instead of the patient or nurse. It's been a long day but there are many more hours of waiting before it will be over.
I've been having a great time in the kitchen, veganizing French recipes and putting my slow cookers to work, but although my food is healthful, I could tell my body was in need of a little detox. So this week I've decided to do a raw food cleanse. I did a raw diet in the weeks that I had to be off of my thyroid hormone in prep for my radiation, and my body felt great despite the effects of hypothyroidism. After my treatment, though, I suffered from nausea and couldn't stomach raw foods for quite some time. After I recovered from that I never tried going raw again. I started on Saturday, and already on day 3 I feel much less bloated, happier, and more energetic! My friend, Cherl, requested that I document my raw week to give everyone an idea of what delicious things I'm eating! I can't upload the pictures now because I'm on my iPad and my blogger app isn't working, but they are on my Facebook page and I'll upload them here when I get a chance.
I can't see myself going 100% raw all the time, but I think aiming for a high raw diet is something that will make my body and soul the happiest. And, I don't have to worry about burning my food :)
xoxo,
Lisa
Thursday, October 13, 2011
50/50
Greetings!
Fall is creeping in slowly here in Seattle, the leaves teasing me with kisses of crimson and tangerine, sudden wind storms that leave the lake in a froth, and pumpkins adorning every store window. But today is sweet and sunny and barely even cool, as if she is tempting me with a mild season ahead. With boots, a scarf, and a sweater today, I'm prepared for anything.
I haven't felt like writing much lately, so I haven't. But today I couldn't wait to sit down and let the words come. I can't explain why. I feel like my thyroid hormone levels have balanced, and I find myself giggling uncontrollably at least once a day (my old self is back!). I can concentrate, I can make it through a day without wanting to eat every ten minutes. My heart is full and my body feels healthy.
Have you seen the movie 50/50? I can't recommend it enough. Bring your tissues and don't plan on trying to throw a party later in the day. But even if the film is somber, it will leave you with new gratitude and new interpretation of a cancer patient's journey. Based on a true story, the film is about a twenty-seven year old man (Seattleite!) who is diagnosed with cancer and a 50% chance of survival (hence the name). So many scenes in the movie hit close to home for both Jesse and I.... when the doctor is talking but it doesn't sound like anything is coming out of his mouth...trying to tell your friends and family...the struggle that the friends and family go through. Even the tantrums.
I can't say enough to all of you how thankful I am for your support & love that never ends. I always appreciate it and this film made me appreciate it ever more.
Sunday, September 25, 2011
Results
First, let me begin by apologizing for my long absence from blogging. Life has been full of fun & wonderful activities with family & friends, like a trip to Southern California in my dad's plane, kayaking in our new boats, concert-going and salsa dancing.
And now for the much-anticipated results: my scan looked good! My thyroglobulin level was 1.1 (0 = no evidence of cancer), but since it's headed in the right direction and the radiation takes a full six months to work we are hoping that in three months from now it will be 0! It is such a relief to at last have some good news. My doctor was shocked by how good the results were this soon, and I honestly believe that my focus on diet and healing has a lot to do with the impressive amount of cancer fighting that has occurred in my body.
My TSH level was 0.01, and although I need to be hyperthyroid for suppression, the goal is 0.1. We lowered my hormone dose and I was feeling better already within a week. It's much easier to think and function. And only a few months ago my TSH was over 60... Now I know both how it feels to be extremely hypo- and hyperthyroid. There is not much point in longing to be normal again since I know it can't happen, but I'll appreciate feeling less hyper than I have been once my thyroid levels go down.
So for now the plan is to recheck my blood levels in three months, and if they are good then I can wait until the spring for my next scan. I'll have an ultrasound as well as a radioactive iodine scan (yuck!). I'll have to have those frequently because of the high rate of recurrence with this type of cancer. But in the meantime, I've got three more months of playtime before worrying about the next test!
Happy Autumn!
xoxo,
Lisa
And now for the much-anticipated results: my scan looked good! My thyroglobulin level was 1.1 (0 = no evidence of cancer), but since it's headed in the right direction and the radiation takes a full six months to work we are hoping that in three months from now it will be 0! It is such a relief to at last have some good news. My doctor was shocked by how good the results were this soon, and I honestly believe that my focus on diet and healing has a lot to do with the impressive amount of cancer fighting that has occurred in my body.
My TSH level was 0.01, and although I need to be hyperthyroid for suppression, the goal is 0.1. We lowered my hormone dose and I was feeling better already within a week. It's much easier to think and function. And only a few months ago my TSH was over 60... Now I know both how it feels to be extremely hypo- and hyperthyroid. There is not much point in longing to be normal again since I know it can't happen, but I'll appreciate feeling less hyper than I have been once my thyroid levels go down.
So for now the plan is to recheck my blood levels in three months, and if they are good then I can wait until the spring for my next scan. I'll have an ultrasound as well as a radioactive iodine scan (yuck!). I'll have to have those frequently because of the high rate of recurrence with this type of cancer. But in the meantime, I've got three more months of playtime before worrying about the next test!
Happy Autumn!
xoxo,
Lisa
Sunday, September 4, 2011
Water
I have been craving water the last few days...not to drink, but to be in. Waking up yesterday the first thing I wanted was a long bubble bath, and today all I desired was a long swim in the lake (which ended up being floating and treading), followed by a very long shower that I couldn't make myself get out of.
My dreams the last two nights have been all about water: first, on Friday night, dreaming that the lake was flooding and we had to get inland. We were scrambling to put all of our belongings in waterproof bags, and collecting the dog as we zoomed away from the flood. Then last night my dreams were of everyday occurrings yet it all took place in the water. Not in the sense of drowning, just that we were in calm, still water.
I did a quick online search to find some dream interpretation sites, and found that dreaming of flooding can indicate repressed emotions that are overwhelming me, or that certain worries will soon be swept away. According to dreammoods.com,
Tomorrow we are off to Leavenworth to float the river. Zeus even gets to come because they have special tubes just for dogs!
xoxo,
Lisa
My dreams the last two nights have been all about water: first, on Friday night, dreaming that the lake was flooding and we had to get inland. We were scrambling to put all of our belongings in waterproof bags, and collecting the dog as we zoomed away from the flood. Then last night my dreams were of everyday occurrings yet it all took place in the water. Not in the sense of drowning, just that we were in calm, still water.
I did a quick online search to find some dream interpretation sites, and found that dreaming of flooding can indicate repressed emotions that are overwhelming me, or that certain worries will soon be swept away. According to dreammoods.com,
"To see water in your dream symbolizes your unconscious and your emotional state of mind. Water is the living essence of the psyche and the flow of life energy. It is also symbolic of spirituality, knowledge, healing and refreshment. To see calm, clear water in your dream means that you are in tune with your spirituality. It denotes serenity, peace of mind, and rejuvenation."I'm not sure how to translate all that to my life, but it does seem interesting that water is such a focus for me at the moment. Any thoughts?
Tomorrow we are off to Leavenworth to float the river. Zeus even gets to come because they have special tubes just for dogs!
xoxo,
Lisa
Saturday, September 3, 2011
Scan date
Wishing you all the most lovely long weekend. We were planning to go camping and sailing on Orcas Island, but instead elected to stay home since we've been gone the last few weekends. We live at the beach, and what better place to spend the long weekend than the beach! My plans are simply to lounge about reading good books and daydream and perhaps swim in the refreshing water of Lake Washington. But of course I should do those boring things like chores and laundry as well.
Yesterday brought some news of which I have mixed feelings: my scan has been moved up to this Wednesday (!) and my follow-up appointment with my endocrinologist to Friday. I've been blissfully enjoying these months between scans, with the September 19th scan date looming over me like a ferocious deadline. And now that scan will be much sooner than anticipated. While I stew in my worry and apprehension, part of me is relieved to know the results sooner. Also, my insurance will be changing as of October 1st and knowing what to expect in the next year as far as healthcare costs will help me to select the right plan for me. I assure you that cancer patients know every little nook and cranny of their insurance plans. It's dizzying to sort through it all. I spent some good time with a calculator this week figuring out what plan would be most beneficial.
Last year when I had to choose which plan to be on I selected the high-deductible HSA because I only went to the doctor but once a year for my annual check-up. Why on Earth would I have considered spending a small fortune each month for a lower deductible plan? Little did I know that there were poisonous cells multiplying out of control in my neck. But it turns out that with all of my treatment this plan has actually worked in my favor - after reaching my out of pocket limit (which is still sky-high), my insurance covered everything at 100%. My $60,000 radioactive iodine treatment at an out-of-network hospital? Covered completely, no questions asked. Thank Buddha. If I had selected the lower deductible PPO plan, I would have had to pay high copays for every doctor visit, scan, and day in the hospital, even after reaching my out-of-pocket limit. It's sad when you care more about the out-of-pocket limit than the deductible when selecting your insurance plan.
That said, I am so very grateful to have health insurance, and a job that pays for it. Healthcare is staggeringly expensive, and even if you think you're the healthiest person on the planet, you never know what could happen to you tomorrow. As someone who works in healthcare, I see how little we are reimbursed for the services we provide, yet insurance keeps getting more and more expensive. What is the answer to affordable healthcare? I wish I knew the whole answer to that question, but I have an inkling that it begins with some huge lifestyle changes for a large percentage of the population.
I think prevention will get our society a long, long way. I have a lot of faith in people, and I truly believe that with proper education people would be willing to make some changes. But I know how rare it is for a doctor to be honest and frank with their patients. It's rare for a doctor to say, "look, you need to lose weight, and this is how you're going to do it."
I highly recommend the film Forks Over Knives. It is an eye-opening documentary about health and diet. You think a plant-based diet is extreme? Well, what do you think about doctors sawing open your chest to perform a bypass graft because your arteries are clogged from all the cholesterol in your diet? Is that not more extreme?
Okay, I'll stop ranting now and get back to daydreaming in the sunshine! May you all have a perfect weekend full of adventures, relaxation, and learning. I'll keep you updated as soon as I know my scan results, which probably won't be until after my appointment with Dr. Failor on Friday afternoon.
xoxo,
Lisa
Yesterday brought some news of which I have mixed feelings: my scan has been moved up to this Wednesday (!) and my follow-up appointment with my endocrinologist to Friday. I've been blissfully enjoying these months between scans, with the September 19th scan date looming over me like a ferocious deadline. And now that scan will be much sooner than anticipated. While I stew in my worry and apprehension, part of me is relieved to know the results sooner. Also, my insurance will be changing as of October 1st and knowing what to expect in the next year as far as healthcare costs will help me to select the right plan for me. I assure you that cancer patients know every little nook and cranny of their insurance plans. It's dizzying to sort through it all. I spent some good time with a calculator this week figuring out what plan would be most beneficial.
Last year when I had to choose which plan to be on I selected the high-deductible HSA because I only went to the doctor but once a year for my annual check-up. Why on Earth would I have considered spending a small fortune each month for a lower deductible plan? Little did I know that there were poisonous cells multiplying out of control in my neck. But it turns out that with all of my treatment this plan has actually worked in my favor - after reaching my out of pocket limit (which is still sky-high), my insurance covered everything at 100%. My $60,000 radioactive iodine treatment at an out-of-network hospital? Covered completely, no questions asked. Thank Buddha. If I had selected the lower deductible PPO plan, I would have had to pay high copays for every doctor visit, scan, and day in the hospital, even after reaching my out-of-pocket limit. It's sad when you care more about the out-of-pocket limit than the deductible when selecting your insurance plan.
That said, I am so very grateful to have health insurance, and a job that pays for it. Healthcare is staggeringly expensive, and even if you think you're the healthiest person on the planet, you never know what could happen to you tomorrow. As someone who works in healthcare, I see how little we are reimbursed for the services we provide, yet insurance keeps getting more and more expensive. What is the answer to affordable healthcare? I wish I knew the whole answer to that question, but I have an inkling that it begins with some huge lifestyle changes for a large percentage of the population.
I think prevention will get our society a long, long way. I have a lot of faith in people, and I truly believe that with proper education people would be willing to make some changes. But I know how rare it is for a doctor to be honest and frank with their patients. It's rare for a doctor to say, "look, you need to lose weight, and this is how you're going to do it."
I highly recommend the film Forks Over Knives. It is an eye-opening documentary about health and diet. You think a plant-based diet is extreme? Well, what do you think about doctors sawing open your chest to perform a bypass graft because your arteries are clogged from all the cholesterol in your diet? Is that not more extreme?
Okay, I'll stop ranting now and get back to daydreaming in the sunshine! May you all have a perfect weekend full of adventures, relaxation, and learning. I'll keep you updated as soon as I know my scan results, which probably won't be until after my appointment with Dr. Failor on Friday afternoon.
xoxo,
Lisa
Tuesday, August 30, 2011
Breathe through it
I can't believe it's just past eight o'clock and already nearly dark outside. Summer is slipping by so quickly and in just a few weeks we will welcome autumn. After a torrid weekend, today Seattle has reminded us of it's weather preference: clouds and rain. But curiously I'm ready for fall this year. Apple cider, pumpkin spice lattes, caramel everything, tall boots, and sweaters have me piqued and anticipating the equinox.
A recent visit with my chiropractor left a profound impact on my spirit. I've mentioned my ups and downs and instability. I'm generally not one who has turned to alternative medicine, but throughout my journey with cancer I've adapted the attitude that it certainly can't hurt, and come to discover that it can certainly provide a type of healing that modern medicine cannot. I've been seeing my chiropractor once or twice a week to help with the debilitating neck pain I've had as a result of muscle spasms from scar tissue. We tried a lot of different modalities of treatment, and now my pain is almost completely resolved. This doctor uses a holistic approach, including applied kinesiology. During one appointment he did a test that revealed a deep psychological link to my neck pain. And he offered me the following advice: to breathe. To allow my emotions and fears to come, and breathe through them, whether they are blissful or unnerving.
He asked me to visualize myself in the happiest place possible, full and radiant and healthy. And then breathe. I closed my eyes and immediately saw myself dancing. I was leaping and pirouetting and jete-ing across a stage, more virile than ever before. But just as easily as that image came, I was suddenly the dying swan - staggering, falling, collapsing. I shook the image from my head. This time came the vision of myself on my wedding day, enrobed in white tulle, full of joy and anticipation on what will be the happiest day of my life. And then seconds later, as I saw myself dancing in my new husband's arms, I was gently fading, shrinking, collapsing into those arms. Breathe in, breathe out.
I never imagined how hard it would be to hold an image of health and vibrance in my head. The practice of breathing through the difficult stuff is of course not new to me: it is what we practice in yoga. Every movement is about controlled breathing, controlled thought, and focus. When we are in an uncomfortable pose we breathe through it. We use that pose to learn how to get through the discomfort, to find the good in every moment. And we use our breath to help us through.
So though it may seem like rather simple advice, I've found it a great help to me. When I feel a dark thought or fear creep into my mind, I let it be there, and I breathe through it, and get comfortable in it, and find serenity in that moment. And in no time at all it's gone, and the next joyful hope is upon me. And I breathe through it, too.
Don't forget to breathe.
A recent visit with my chiropractor left a profound impact on my spirit. I've mentioned my ups and downs and instability. I'm generally not one who has turned to alternative medicine, but throughout my journey with cancer I've adapted the attitude that it certainly can't hurt, and come to discover that it can certainly provide a type of healing that modern medicine cannot. I've been seeing my chiropractor once or twice a week to help with the debilitating neck pain I've had as a result of muscle spasms from scar tissue. We tried a lot of different modalities of treatment, and now my pain is almost completely resolved. This doctor uses a holistic approach, including applied kinesiology. During one appointment he did a test that revealed a deep psychological link to my neck pain. And he offered me the following advice: to breathe. To allow my emotions and fears to come, and breathe through them, whether they are blissful or unnerving.
He asked me to visualize myself in the happiest place possible, full and radiant and healthy. And then breathe. I closed my eyes and immediately saw myself dancing. I was leaping and pirouetting and jete-ing across a stage, more virile than ever before. But just as easily as that image came, I was suddenly the dying swan - staggering, falling, collapsing. I shook the image from my head. This time came the vision of myself on my wedding day, enrobed in white tulle, full of joy and anticipation on what will be the happiest day of my life. And then seconds later, as I saw myself dancing in my new husband's arms, I was gently fading, shrinking, collapsing into those arms. Breathe in, breathe out.
I never imagined how hard it would be to hold an image of health and vibrance in my head. The practice of breathing through the difficult stuff is of course not new to me: it is what we practice in yoga. Every movement is about controlled breathing, controlled thought, and focus. When we are in an uncomfortable pose we breathe through it. We use that pose to learn how to get through the discomfort, to find the good in every moment. And we use our breath to help us through.
So though it may seem like rather simple advice, I've found it a great help to me. When I feel a dark thought or fear creep into my mind, I let it be there, and I breathe through it, and get comfortable in it, and find serenity in that moment. And in no time at all it's gone, and the next joyful hope is upon me. And I breathe through it, too.
Don't forget to breathe.
Sunday, August 28, 2011
Portland
Greetings loves,
The past few weeks have been astonishingly busy. We just got home from an inspiring weekend in Portland where I had the privilege of attending the Vida Vegan Conference. I'm utterly exhausted from a jam-packed weekend of learning, networking, and best of all, eating. The conference was for vegan bloggers, and I had a marvelous time attending lectures, panels, and workshops on everything vegan and writing. You know you're with a bunch of bloggers when you sit down for lunch and everybody whips out their camera to take 20 photos of their food before eating. Even though the focus of many of the classes was food blogging, I also came away with improved writing skills and tips on vegan living. Perhaps someday I'll venture into food blogging.
The most enlivening part of my weekend was meeting a woman who has inspired me very much over the past few years, Colleen Patrick-Goudreau. She was engaging to talk with and gave a speech that certainly moved every person in the room. She signed her new book, The 30 Day Vegan Challenge, for me, and I can't recommend it highly enough if you're looking for a challenge in your life, or maybe to improve your health, or are just curious what it's all about. I'm so thankful for the opportunity to spend a weekend surrounded by a couple hundred of the most compassionate people...people who get it - who feel the same as I do - to whom I don't need to explain myself.
I hadn't been in Portland in nearly a year, I think. It shocks me to realize that I've now lived in Seattle for just as long as I had lived in Portland for. Of course not much has changed in the two years since I've moved away, but it still felt a bit foreign to be there. The city seemed so much smaller than I remembered, and yet just as vibrant as ever. Perhaps a small part of me misses it, but I was also so pleased to see the Seattle skyline as we returned home. Seattle really is home now.
I'll leave you with a prayer for humans, on behalf of animals.
xoxo,
Lisa
Tuesday, August 23, 2011
Cancer
What a ride my life has been these past couple of weeks. My hormone levels have been all over the place. One day I'm feeling great and energized, the next I worry I might burst into tears for no reason or struggle to make it out of bed. I was wondering if it was just me, but after connecting with a lot of other thyroid cancer survivors on the thyca survivors' message boards, as well as talking with one of my own patients who has had a total thyroidectomy, I learned that this is what happens. It has to do with the way your body metabolizes your meds, and it seems that everyone I've communicated with has the same problem. The solution is only to make the very best of every moment that we can. As I try to do every day.
Our family was stunned by some shocking news last week. My father was diagnosed with prostate cancer. After a year full of bad enough news, you begin to think that nothing else could possibly go wrong. Indeed, this was the very last thing I expected to hear. But cancer doesn't care how old you are, or who you are, or if your family has had more than it's share of devastation for one year.
While it hurts and burns to know that someone I love dearly has to go through what I've experienced, it is also in some way like I've got someone who understands my journey more clearly than any non cancer survivor could. The fear & shock with the initial diagnosis. The feeling of knowledge of a poison living inside your body. The want to get it out, to make it go away. The impression of complete loss of control over your life.
And I know what he'll be feeling as his journey continues. The longing for your pre-cancer life back. The fear at every sniffle or bump...is it cancer? Soon everything will look like poison. Did that toothpaste cause my cancer? My coffee? Lotion? The utter yet indescribable appreciation for every moment spent surrounded by the ones you love, or for life's small but overwhelmingly beautiful moments. Not that people without cancer can't experience those emotions. But cancer gives you a new perspective no matter who you were before.
If you take anything from this post, please let it be to live your life according to your beliefs. Live passionately and with joy. Give yourself the best chance at a full life as you can: eat organic, exercise, and be healthy. And make the choice to truly live.
Our family was stunned by some shocking news last week. My father was diagnosed with prostate cancer. After a year full of bad enough news, you begin to think that nothing else could possibly go wrong. Indeed, this was the very last thing I expected to hear. But cancer doesn't care how old you are, or who you are, or if your family has had more than it's share of devastation for one year.
While it hurts and burns to know that someone I love dearly has to go through what I've experienced, it is also in some way like I've got someone who understands my journey more clearly than any non cancer survivor could. The fear & shock with the initial diagnosis. The feeling of knowledge of a poison living inside your body. The want to get it out, to make it go away. The impression of complete loss of control over your life.
And I know what he'll be feeling as his journey continues. The longing for your pre-cancer life back. The fear at every sniffle or bump...is it cancer? Soon everything will look like poison. Did that toothpaste cause my cancer? My coffee? Lotion? The utter yet indescribable appreciation for every moment spent surrounded by the ones you love, or for life's small but overwhelmingly beautiful moments. Not that people without cancer can't experience those emotions. But cancer gives you a new perspective no matter who you were before.
If you take anything from this post, please let it be to live your life according to your beliefs. Live passionately and with joy. Give yourself the best chance at a full life as you can: eat organic, exercise, and be healthy. And make the choice to truly live.
Tuesday, August 2, 2011
Summer
bonjour...
the Pacific Northwest has been romancing me with it's delicious sunshine...and it's hard not to be madly in love with life and everything surrounding it. Our weekend included the cruise in the San Juans aboard the lovely sailing vessel Anam Cara, and a round trip flight to Friday Harbor in a private plane, courtesy of my papa. Both from the air and on the water it was an easy reminder just what a beautiful place I am fortunate enough to reside in.
Fueled by raw nourishment, I've been spending lots of time in yoga and zumba, while trying to make as much time for friends as possible and still working extra shifts to make up for all of the time I've missed at work.
A picture from our stop in Roche Harbor...
xoxo,
Lisa Rose
the Pacific Northwest has been romancing me with it's delicious sunshine...and it's hard not to be madly in love with life and everything surrounding it. Our weekend included the cruise in the San Juans aboard the lovely sailing vessel Anam Cara, and a round trip flight to Friday Harbor in a private plane, courtesy of my papa. Both from the air and on the water it was an easy reminder just what a beautiful place I am fortunate enough to reside in.
Fueled by raw nourishment, I've been spending lots of time in yoga and zumba, while trying to make as much time for friends as possible and still working extra shifts to make up for all of the time I've missed at work.
A picture from our stop in Roche Harbor...
xoxo,
Lisa Rose
Friday, July 29, 2011
Sunshine!
Hi loves! It's a gorgeous, sunny week here in Seattle. What an amazing effect the sunshine has on everyone's moods. In fact, I'm blogging from my balcony right now. My body is feeling almost "normal" at last. I had my TSH tested and it was 0.07. Right on target! This means they got my dose of Levoxyl correct the first time. I've heard that some people don't tolerate being this "hyper," but I haven't had any of the symptoms such as tremors, insomnia, or heart palpitations. But now that I think about it, I really should check my blood pressure just to be sure.
I've been maximizing my time off from treatment. I went to visit my mom, aunt, and grandma for a few days when I could escape from work, and it was a fabulous time. We all have the same sense of humor, so we can just sit around and laugh and laugh. This weekend Jesse and I are going cruising with my dad and Scott in the San Juans on a J/122, Anam Cara.
While it's easy to pretend everything is normal again and try to forget about having cancer, I can't. It's always there, in the back of my mind. And I guess that's a space of my mind that I'm going to have to learn to share, because cancer isn't vacating it any time soon. Even when the docs will tell me I'm in remission, even when they tell me I'm cured, the small worry will always be there, and those memories will never go away. And although I'm living up my summer, waiting and seeing just isn't as easy as it sounds. September seems lightyears away, and yet also like it's looming over me like a deadline tomorrow.
I just came across the blog Everything Changes in my daily research and reading. The author seems to see right into my life! I can't wait to read her book.
For now, I'll keep reminding myself of my favorite quote from the Crazy Sexy Cancer Survivor, Kris Carr,
I've been maximizing my time off from treatment. I went to visit my mom, aunt, and grandma for a few days when I could escape from work, and it was a fabulous time. We all have the same sense of humor, so we can just sit around and laugh and laugh. This weekend Jesse and I are going cruising with my dad and Scott in the San Juans on a J/122, Anam Cara.
While it's easy to pretend everything is normal again and try to forget about having cancer, I can't. It's always there, in the back of my mind. And I guess that's a space of my mind that I'm going to have to learn to share, because cancer isn't vacating it any time soon. Even when the docs will tell me I'm in remission, even when they tell me I'm cured, the small worry will always be there, and those memories will never go away. And although I'm living up my summer, waiting and seeing just isn't as easy as it sounds. September seems lightyears away, and yet also like it's looming over me like a deadline tomorrow.
I just came across the blog Everything Changes in my daily research and reading. The author seems to see right into my life! I can't wait to read her book.
For now, I'll keep reminding myself of my favorite quote from the Crazy Sexy Cancer Survivor, Kris Carr,
"I got news for ya, life is a terminal condition; cancer patients are just more aware of it. The real question is how many of us will choose to truly live."
me driving Anam Cara in the San Juans, July 2009
Sunday, July 10, 2011
Balance
Hello! It's been a fabulous weekend here, including yachting, celebrating my friend Jamie's bachelorette party, and my friend Amanda's birthday. I was telling my girlfriends that it finally feels like life is starting to get back to normal. Now that I have a couple of months without treatment, and my body is starting to normalize and my energy is coming back, I will sometimes realize that I haven't even thought about cancer in the past two hours.
In the past week I've been trying to focus on balance. I went from obsessing about trying to eat as healthy & raw as possible, to splurging on the 4th of July weekend and eating mostly just veggie dogs & veggie burgers. While still vegan and certainly much healthier than their dead-animal counterparts, they are not exactly the whole-food, raw diet I strive for. That weekend left me craving for a big bowl full of leafy green salad! And now I know that I need a balance of healthy foods, but not to the point of obsession. Although, this week will probably lean more towards the fun, splurging side instead of the healthy side, because Thursday is Jamie's wedding! I'd better do a lot of yoga tomorrow to balance it out :)
xoxo,
Lisa
In the past week I've been trying to focus on balance. I went from obsessing about trying to eat as healthy & raw as possible, to splurging on the 4th of July weekend and eating mostly just veggie dogs & veggie burgers. While still vegan and certainly much healthier than their dead-animal counterparts, they are not exactly the whole-food, raw diet I strive for. That weekend left me craving for a big bowl full of leafy green salad! And now I know that I need a balance of healthy foods, but not to the point of obsession. Although, this week will probably lean more towards the fun, splurging side instead of the healthy side, because Thursday is Jamie's wedding! I'd better do a lot of yoga tomorrow to balance it out :)
xoxo,
Lisa
Saturday, July 2, 2011
Joy
Good morning,
It's a gorgeous long weekend here in Seattle! We've already been taking advantage of it with great friends and a BBQ and wine on our balcony last night. There is an air of festivity here in Seattle; I think everyone is so excited to finally have a summer on the horizon.
Yesterday afternoon I had an appointment with Dr. Failor, my endocrinologist at the Cancer Care Alliance. I was so nervous going into the appointment, dreading more bad news, but really there was not any news. It was more of an appointment to establish care, as I'd never met him before, and review our plan, since he will be managing my care from here on out. He reviewed my bloodwork and our goals. My thyroid stimulating hormone (TSH) levels should be at 0.01 and my thyroglobulin (Tg) should be 0 (or <0.02, which is the lowest the test can read).
Thyroid stimulating hormone is produced by the pituitary and does exactly what it sounds like. In a normal person it should be around 0.5-2.5, although those numbers vary a lot depending on whom you talk to. Some say a level of 5 is normal, while a nurse practitioner I worked with before aimed to have every patient at 1.0. Because this value is the hormone that stimulates the thyroid, and not the actual thyroid levels, it is inversely proportional to the thyroid levels. For example, if your TSH is 7, you are considered hypothyroid (and experiencing the beginning of all the fun symptoms I just had. My TSH was 58 when last checked). If it is 0.2, you are considered hyperthyroid. The goal for my treatment is to keep my TSH at 0.1. Although it is considered hyperthyroid, it is done to suppress the thyroid stimulating hormone - we don't want it stimulating any thyroid cancer cells!
So this summer will involve a lot of lab work to determine if my TSH is at the appropriate level and adjusting of my levothyroxine dose. We'll also be monitoring my Tg level, hoping that post-RAI it comes down, showing that the ablation was effective at destroying those evil cancer cells. And as planned, I'll have my ultrasound in September. This means my next doctors appointment isn't until September 19! Blood draws are easy because I can have them done right in the office I work at, and my medication dose can be adjusted over the phone. I'm excited that when I look at my calendar for the upcoming months, the only appointments I see are for pedicures and massages :) Just kidding, I'll still be seeing my naturopath, but she only gives me good news and has a much more flexible schedule so I don't have to take more time off work.
Happy 4th everyone! Please consider not blasting off firecrackers - they terrify animals, including my Z dog. Wishing you all lots of sunshine.
xoxo,
Lisa
It's a gorgeous long weekend here in Seattle! We've already been taking advantage of it with great friends and a BBQ and wine on our balcony last night. There is an air of festivity here in Seattle; I think everyone is so excited to finally have a summer on the horizon.
Yesterday afternoon I had an appointment with Dr. Failor, my endocrinologist at the Cancer Care Alliance. I was so nervous going into the appointment, dreading more bad news, but really there was not any news. It was more of an appointment to establish care, as I'd never met him before, and review our plan, since he will be managing my care from here on out. He reviewed my bloodwork and our goals. My thyroid stimulating hormone (TSH) levels should be at 0.01 and my thyroglobulin (Tg) should be 0 (or <0.02, which is the lowest the test can read).
Thyroid stimulating hormone is produced by the pituitary and does exactly what it sounds like. In a normal person it should be around 0.5-2.5, although those numbers vary a lot depending on whom you talk to. Some say a level of 5 is normal, while a nurse practitioner I worked with before aimed to have every patient at 1.0. Because this value is the hormone that stimulates the thyroid, and not the actual thyroid levels, it is inversely proportional to the thyroid levels. For example, if your TSH is 7, you are considered hypothyroid (and experiencing the beginning of all the fun symptoms I just had. My TSH was 58 when last checked). If it is 0.2, you are considered hyperthyroid. The goal for my treatment is to keep my TSH at 0.1. Although it is considered hyperthyroid, it is done to suppress the thyroid stimulating hormone - we don't want it stimulating any thyroid cancer cells!
So this summer will involve a lot of lab work to determine if my TSH is at the appropriate level and adjusting of my levothyroxine dose. We'll also be monitoring my Tg level, hoping that post-RAI it comes down, showing that the ablation was effective at destroying those evil cancer cells. And as planned, I'll have my ultrasound in September. This means my next doctors appointment isn't until September 19! Blood draws are easy because I can have them done right in the office I work at, and my medication dose can be adjusted over the phone. I'm excited that when I look at my calendar for the upcoming months, the only appointments I see are for pedicures and massages :) Just kidding, I'll still be seeing my naturopath, but she only gives me good news and has a much more flexible schedule so I don't have to take more time off work.
Happy 4th everyone! Please consider not blasting off firecrackers - they terrify animals, including my Z dog. Wishing you all lots of sunshine.
xoxo,
Lisa
Saturday, June 25, 2011
Healing
Hello,
I'm just trying to take things one day at a time here. Every day I feel a tiny bit more energy and a tiny bit more balanced. I've managed to get through a full week of work, go for some long walks {like around Green Lake on the solstice}, and get my diet back to normal {and mostly raw!}. Being able to eat iodine-containing foods again is wonderful! Last night I got to enjoy a seaweed salad. I still have almost no sense of taste, and I'm frustrated that it doesn't seem to be returning, as it should be by now. Some patients never get their sense of taste back, but that can't possibly be me. I suppose I just have to be patient. My neck pain is really improving, and now that my nausea has resolved as well I feel much less miserable. I got a massage on Thursday and I have to say it is truly the time when I can relax the most. My neck muscles are so very tight but I hope that they'll eventually begin to release as my stress and pain levels go down.
I have been filling my spare time the last few weeks with watching documentaries and reading books about natural cancer cures. As one of my dear friends said, "wouldnt it be nice if cancer patients could just stop worrying about money and just focus on healing?" But the bills don't stop because you have cancer, the rent doesn't pay itself, and your paycheck doesn't come if you don't go to work. In fact, you get tons of extra bills from the doctors and hospitals. Life carries on as normal and you have to try to be as normal as you can while trying to heal. How amazing it would be to be able to stop life, and attend a healing clinic, such as the Hippocrates Health Institute or The Gerson Therapy's Clinica Nutricion y Vida. But we all know that's not what life is like. So I am going to do all of the research I can about how to heal myself within the context of my everyday life. If you want to see all of the resources I'm using for my information, please check out the link I created at the top of my blog. I would really appreciate anyone's opinion who has seen any of these documentaries or read the books.
Coming up this week: an appointment with Dr. Failor at the SCCA, another massage, and getting back into yoga and zumba!
Wishing you all a sunny, summery week!
Love,
Lisa
I'm just trying to take things one day at a time here. Every day I feel a tiny bit more energy and a tiny bit more balanced. I've managed to get through a full week of work, go for some long walks {like around Green Lake on the solstice}, and get my diet back to normal {and mostly raw!}. Being able to eat iodine-containing foods again is wonderful! Last night I got to enjoy a seaweed salad. I still have almost no sense of taste, and I'm frustrated that it doesn't seem to be returning, as it should be by now. Some patients never get their sense of taste back, but that can't possibly be me. I suppose I just have to be patient. My neck pain is really improving, and now that my nausea has resolved as well I feel much less miserable. I got a massage on Thursday and I have to say it is truly the time when I can relax the most. My neck muscles are so very tight but I hope that they'll eventually begin to release as my stress and pain levels go down.
I have been filling my spare time the last few weeks with watching documentaries and reading books about natural cancer cures. As one of my dear friends said, "wouldnt it be nice if cancer patients could just stop worrying about money and just focus on healing?" But the bills don't stop because you have cancer, the rent doesn't pay itself, and your paycheck doesn't come if you don't go to work. In fact, you get tons of extra bills from the doctors and hospitals. Life carries on as normal and you have to try to be as normal as you can while trying to heal. How amazing it would be to be able to stop life, and attend a healing clinic, such as the Hippocrates Health Institute or The Gerson Therapy's Clinica Nutricion y Vida. But we all know that's not what life is like. So I am going to do all of the research I can about how to heal myself within the context of my everyday life. If you want to see all of the resources I'm using for my information, please check out the link I created at the top of my blog. I would really appreciate anyone's opinion who has seen any of these documentaries or read the books.
Coming up this week: an appointment with Dr. Failor at the SCCA, another massage, and getting back into yoga and zumba!
Wishing you all a sunny, summery week!
Love,
Lisa
Sunday, June 19, 2011
Latest results
Hello and happy Father's Day! Jesse and I just got home from a fun trip to Roche Harbor where we took my dad to lunch with my brothers and Madi.
Sorry I've been MIA, it's taken me a few days to process everything enough to be able to write about it. I had my appointment with Dr. Mankoff on Friday, and like the first scan, the second one showed a lot more activity in my neck than anticipated. The thing about this type of scan is it is vague, it shows the activity but since it doesn't really show other tissues, it's hard to see exactly where the activity is more specifically than 'the neck.'
The most concerning finding was actually in my bloodwork. My thyroglobulin (Tg) level (this is the tumor marker for thyroid cancer, similar to PSA for men for prostate cancer) was 262, which is very high. My TSH was 58. These results mean there is a lot more cancer remaining in my body than we want, probably in the lymph nodes and hopefully no where else.
So here's our plan. We are going to give the RAI a few months to work, and then in September I'll have an ultrasound to determine if I need a biopsy and more surgery. In the meantime my bloodwork will be monitored and I'll stay on my thyroid hormones for suppressive therapy.
So, the good news is, I have the whole summer free of treatment besides swallowing a tiny pill every day. I'm looking forward to lots of long Seattle summer days. Seattle summers really are the best, although much too short. I'm happy to be able to finally make plans for the summer, though, because until now I've been cautious to plan much because of not knowing my treatment schedule.
I won't have much news of my treatment to share until September, but I will still write about life and other goings on :)
Love,
Lisa
Sorry I've been MIA, it's taken me a few days to process everything enough to be able to write about it. I had my appointment with Dr. Mankoff on Friday, and like the first scan, the second one showed a lot more activity in my neck than anticipated. The thing about this type of scan is it is vague, it shows the activity but since it doesn't really show other tissues, it's hard to see exactly where the activity is more specifically than 'the neck.'
The most concerning finding was actually in my bloodwork. My thyroglobulin (Tg) level (this is the tumor marker for thyroid cancer, similar to PSA for men for prostate cancer) was 262, which is very high. My TSH was 58. These results mean there is a lot more cancer remaining in my body than we want, probably in the lymph nodes and hopefully no where else.
So here's our plan. We are going to give the RAI a few months to work, and then in September I'll have an ultrasound to determine if I need a biopsy and more surgery. In the meantime my bloodwork will be monitored and I'll stay on my thyroid hormones for suppressive therapy.
So, the good news is, I have the whole summer free of treatment besides swallowing a tiny pill every day. I'm looking forward to lots of long Seattle summer days. Seattle summers really are the best, although much too short. I'm happy to be able to finally make plans for the summer, though, because until now I've been cautious to plan much because of not knowing my treatment schedule.
I won't have much news of my treatment to share until September, but I will still write about life and other goings on :)
Love,
Lisa
Thursday, June 16, 2011
Another scan day
I woke up this morning to another bout of nausea. I think it is related to anxiety, because today I have another full body scan at 11am. Although I could probably get the results today if I wanted, I am going to wait and get them from Dr. Mankoff tomorrow at my appointment at 2 pm. This way we can discuss our plan at the same time, instead of me having the results and wondering over the next 24 hours what they mean.
It feels like I'm always waiting...waiting for the next test, the latest results, the next treatment. But I know this will be my life for the next five or more years, until my doctors can tell me that my cancer is cured. The key will be finding balance and peace in all those moments of waiting.
I went back to work yesterday and managed to work through a full, busy day. I work 10+ hour shifts, and there usually isn't much sitting involved, so I've obviously come a long way in my recovery to be able to be back to work now. I love feeling my energy (and happiness) returning bit by bit every day. I'm off work today for my scan, and leaving early tomorrow for my appointment with Dr. Mankoff at the Seattle Cancer Care Alliance (SCCA), so it is nice to have a short week to get back into the swing of things.
I'll update you all tomorrow after my appointment!
xoxo,
Lisa
It feels like I'm always waiting...waiting for the next test, the latest results, the next treatment. But I know this will be my life for the next five or more years, until my doctors can tell me that my cancer is cured. The key will be finding balance and peace in all those moments of waiting.
I went back to work yesterday and managed to work through a full, busy day. I work 10+ hour shifts, and there usually isn't much sitting involved, so I've obviously come a long way in my recovery to be able to be back to work now. I love feeling my energy (and happiness) returning bit by bit every day. I'm off work today for my scan, and leaving early tomorrow for my appointment with Dr. Mankoff at the Seattle Cancer Care Alliance (SCCA), so it is nice to have a short week to get back into the swing of things.
I'll update you all tomorrow after my appointment!
xoxo,
Lisa
Monday, June 13, 2011
Recovery
Good morning,
I'm blogging here from my awesome new hangout, aka our balcony, made cozy thanks to a new wicker loveseat that compliments the wicker chair & coffee table I already had. It is quite breezy and cool today, but the balcony is sheltered enough that being wrapped up in a blanket means I'm perfectly warm and protected while I watch the leaves swirling around below and Zeus keeps a watchful eye on the goings on of the property. Jesse also hung my herb garden planters from the railing, and if I feel a spurt of energy today I may venture down the street to City People's to find some lavender and basil to plant in the extra pots I have. I have wanted to create this space for a long time, and I'm so glad it is finally becoming what I'd dreamed it to be.
The nausea is subsiding and I managed to eat two normal meals yesterday. Brunch at Cafe Flora, thank you to a very generous gift certificate from the doctors I work for, helped me get past the psychological part of the nausea and focus on the delicious taste of the food I was consuming. An impromptu visit from my dearest friends and a sunny nap in the park made for a perfect day of recovery and nourishment.
The soreness in my neck seems to be getting worse, or maybe it's only that I notice it more now that the nausea is subsiding. But that's fine with me, I'd far rather deal with this pain than nausea. Unfortunately the extreme bloating that my doctor warned me about did manifest itself, and like he said, it looks like someone tied a very tight noose around my neck - my face looks like a giant bubble! He promised it is only water weight and will resolve quickly. Every morning when I swallow my thyroid hormone pill it gives me hope knowing that every day I'm getting closer to feeling normal. I've started all of the supplements that my naturopath recommended which will help repair the damage on my body from the radiation and support my adrenal function to help with my hypotension. Maybe it's only psychological but I think it's helping already.
I've been so inspired by the people who have reached out and said that they were inspired by my blog that I decided to create a section to this blog to share the whole beginning of my story, the part before I started this blog. At first I only intended that close family & friends would read this as a way to stay updated with my treatment, and I had no idea that so many people would want to read this. I'm so excited that people want to listen and that they feel they get something out of it, so I want to invite you to share my blog with anyone you think would want to read it. I am creating a page called My Story that will be able to be accessed from the menu at the top of the website so that anyone can get an introduction to how this diagnosis and journey began for me.
Lots of love,
Lisa
I'm blogging here from my awesome new hangout, aka our balcony, made cozy thanks to a new wicker loveseat that compliments the wicker chair & coffee table I already had. It is quite breezy and cool today, but the balcony is sheltered enough that being wrapped up in a blanket means I'm perfectly warm and protected while I watch the leaves swirling around below and Zeus keeps a watchful eye on the goings on of the property. Jesse also hung my herb garden planters from the railing, and if I feel a spurt of energy today I may venture down the street to City People's to find some lavender and basil to plant in the extra pots I have. I have wanted to create this space for a long time, and I'm so glad it is finally becoming what I'd dreamed it to be.
The nausea is subsiding and I managed to eat two normal meals yesterday. Brunch at Cafe Flora, thank you to a very generous gift certificate from the doctors I work for, helped me get past the psychological part of the nausea and focus on the delicious taste of the food I was consuming. An impromptu visit from my dearest friends and a sunny nap in the park made for a perfect day of recovery and nourishment.
The soreness in my neck seems to be getting worse, or maybe it's only that I notice it more now that the nausea is subsiding. But that's fine with me, I'd far rather deal with this pain than nausea. Unfortunately the extreme bloating that my doctor warned me about did manifest itself, and like he said, it looks like someone tied a very tight noose around my neck - my face looks like a giant bubble! He promised it is only water weight and will resolve quickly. Every morning when I swallow my thyroid hormone pill it gives me hope knowing that every day I'm getting closer to feeling normal. I've started all of the supplements that my naturopath recommended which will help repair the damage on my body from the radiation and support my adrenal function to help with my hypotension. Maybe it's only psychological but I think it's helping already.
I've been so inspired by the people who have reached out and said that they were inspired by my blog that I decided to create a section to this blog to share the whole beginning of my story, the part before I started this blog. At first I only intended that close family & friends would read this as a way to stay updated with my treatment, and I had no idea that so many people would want to read this. I'm so excited that people want to listen and that they feel they get something out of it, so I want to invite you to share my blog with anyone you think would want to read it. I am creating a page called My Story that will be able to be accessed from the menu at the top of the website so that anyone can get an introduction to how this diagnosis and journey began for me.
Lots of love,
Lisa
Friday, June 10, 2011
Home
Good news - I got discharged home this morning! My radiation levels were low enough that it was safe for me to come out of isolation. My nausea has been coming and going, and thankfully I was sent home with an Rx for Zofran to help. Being in the cancer wing, my nurses were self-proclaimed "nausea-queens" and knew exactly what to tell my doctor to order me each time I was experiencing nausea. They knew which ones to take for what time of day and when I needed something for nausea/vomiting prevention or for acid reduction. I was actually able to eat a little lunch and keep it down. Surprisingly, the thought of vegetables (especially raw) isn't very appealing to me at all. My body just wants soup, or the BRAT diet (bananas, rice, applesauce, toast) (the name is fitting huh?). When the nausea subsides I crave more substantial foods, but I'm only trying them in small doses. It is thrilling to be off the restrictions of the low-iodine diet. The thought of being able to eat food that someone else has prepared is so nice! I have really missed tofu and soy sauce! Hopefully by tomorrow the nausea will be mostly resolved; it has already improved so much since Wednesday night.
My incredible coworkers have arranged to feed me every night until I return to work on Wednesday next week! What a huge relief it is to not have to prepare any meals. I know and appreciate so much how lucky I am to be part of a team that cares and supports me so much. I haven't had to worry about missing any of the days of work that I've had to because they always find someone to cover me, even though I've long since used up all of the PTO I had accrued.
Having been a patient in the cancer wing, I saw many patients far worse off than myself. I saw patients walk by with no hair, toting their IV carts with four bags dripping into the ports hanging from their chests. This really put my symptoms in perspective, and a few days in isolation seemed like a fairly easy treatment. At the same time it was scary - this could become me. But don't worry, it just gave me the extra fuel I needed to fight this in every way I can, and most importantly, in the most natural ways possible. To me the radioactive iodine wasn't really a choice I had, if I didn't do it my doctor guaranteed that my cancer would "come back" - and from the scans, we know it never really was "gone," although my surgeon removed my thyroid and the nodes from my right neck, the scans showed more positive nodes still in there. The radioactive iodine is usually a very effective treatment for thyroid cancer after surgery, so even in my moments leading up to the treatment that I wanted to just quit the low iodine diet and have my thyroid hormones back, I knew in my heart that I needed to do this.
Next week I have another full body scan on Thursday 11am, and an appointment with my oncologist at the Cancer Care Alliance on Friday at 2pm to discuss the results.
Of course I will keep you all updated. Thank you for the amazing emails and phone calls, I can barely keep up with them all! Now that I don't have to type through a plastic bag and can actually charge my iPad and phone, I'll be able to catch up more.
All my love,
Lisa
A photo from before going to the ballet last Saturday
My incredible coworkers have arranged to feed me every night until I return to work on Wednesday next week! What a huge relief it is to not have to prepare any meals. I know and appreciate so much how lucky I am to be part of a team that cares and supports me so much. I haven't had to worry about missing any of the days of work that I've had to because they always find someone to cover me, even though I've long since used up all of the PTO I had accrued.
Having been a patient in the cancer wing, I saw many patients far worse off than myself. I saw patients walk by with no hair, toting their IV carts with four bags dripping into the ports hanging from their chests. This really put my symptoms in perspective, and a few days in isolation seemed like a fairly easy treatment. At the same time it was scary - this could become me. But don't worry, it just gave me the extra fuel I needed to fight this in every way I can, and most importantly, in the most natural ways possible. To me the radioactive iodine wasn't really a choice I had, if I didn't do it my doctor guaranteed that my cancer would "come back" - and from the scans, we know it never really was "gone," although my surgeon removed my thyroid and the nodes from my right neck, the scans showed more positive nodes still in there. The radioactive iodine is usually a very effective treatment for thyroid cancer after surgery, so even in my moments leading up to the treatment that I wanted to just quit the low iodine diet and have my thyroid hormones back, I knew in my heart that I needed to do this.
Next week I have another full body scan on Thursday 11am, and an appointment with my oncologist at the Cancer Care Alliance on Friday at 2pm to discuss the results.
Of course I will keep you all updated. Thank you for the amazing emails and phone calls, I can barely keep up with them all! Now that I don't have to type through a plastic bag and can actually charge my iPad and phone, I'll be able to catch up more.
All my love,
Lisa
A photo from before going to the ballet last Saturday
Thursday, June 9, 2011
Nausea
Good morning,
I've been up all night with pretty bad nausea. They are trying different meds to help me with it. I've stopped dry heaving, thank goddess, but still feeling quite queasy. Sorry for the phone calls I've missed, I'm just going to try to get some rest this morning and hope to get over this yucky feeling soon.
L
I've been up all night with pretty bad nausea. They are trying different meds to help me with it. I've stopped dry heaving, thank goddess, but still feeling quite queasy. Sorry for the phone calls I've missed, I'm just going to try to get some rest this morning and hope to get over this yucky feeling soon.
L
Wednesday, June 8, 2011
Metamorphosis
Cancer is my cocoon. I began this journey as a caterpillar. A strong, nourished caterpillar, hungry for more but with no idea of the transformation to come. I will emerge from this a butterfly. Weak and fragile at first, but as my wings dry I will discover that I can flutter as high as I can dream; that I will have become more beautiful than I ever had the potential to imagine.
*****************************************************
I chose to create this metaphor because the butterfly represents the butterfly-shaped thyroid gland that was taken from me, and because of all that butterflies represent across cultures: rebirth, long life, the soul, marital bliss, and transformation, to name a few.
*****************************************************
I chose to create this metaphor because the butterfly represents the butterfly-shaped thyroid gland that was taken from me, and because of all that butterflies represent across cultures: rebirth, long life, the soul, marital bliss, and transformation, to name a few.
Location:NE Pacific St,Seattle,United States
Hello from the hospital
Okay, I'm all situated in my hospital room here, waiting for the nuke team to come give me my dose. I set my phone to forward calls to my hospital room so you can actually just reach me at my regular phone number. No texting though.
I've got a lovely view of Union Bay here, and the room looks just like a normal hospital room except for everything is covered in protective wrap. Every day someone will come and measure how "hot" I am with a wand to determine when it's safe for me to go home. My nurse said since I'm young and healthy I'll probably clear it out quickly and get to go home sooner rather than later.
Enjoying my last minutes getting to be next to Jesse because after my dose people will have to stand outside the doorway behind a lead screen. After I get home I'll have to keep at least three feet from people for a couple days, and for an entire week after I'm discharged I have to take care to not share any bodily fluids, ie, no sharing silverware, no kissing, and flushing the toilet twice.
Really looking forward to being off this low-iodine diet once I'm discharged!
I'll keep you updated via iPad which is inside a plastic bag. Thank you all for bringing me so many books to read - it was hard to choose which one to start with!
Love,
Lisa
I've got a lovely view of Union Bay here, and the room looks just like a normal hospital room except for everything is covered in protective wrap. Every day someone will come and measure how "hot" I am with a wand to determine when it's safe for me to go home. My nurse said since I'm young and healthy I'll probably clear it out quickly and get to go home sooner rather than later.
Enjoying my last minutes getting to be next to Jesse because after my dose people will have to stand outside the doorway behind a lead screen. After I get home I'll have to keep at least three feet from people for a couple days, and for an entire week after I'm discharged I have to take care to not share any bodily fluids, ie, no sharing silverware, no kissing, and flushing the toilet twice.
Really looking forward to being off this low-iodine diet once I'm discharged!
I'll keep you updated via iPad which is inside a plastic bag. Thank you all for bringing me so many books to read - it was hard to choose which one to start with!
Love,
Lisa
Location:NE Pacific St,Seattle,United States
Really quick, getting ready for my hospital stay here.
If you want to reach me, call my google voice number: (206) 588-6372
You should always be able to reach me on that number. I'll set it up to ring to my hospital room, and in the mean time and after I am discharged it will ring to my cell. I should also be able to use this number to call out and make free long-distance calls from my hospital room - so if you see a call from this number, it's a poor lonely girl in the hospital looking for someone to chat with.
xoxo,
Lisa
If you want to reach me, call my google voice number: (206) 588-6372
You should always be able to reach me on that number. I'll set it up to ring to my hospital room, and in the mean time and after I am discharged it will ring to my cell. I should also be able to use this number to call out and make free long-distance calls from my hospital room - so if you see a call from this number, it's a poor lonely girl in the hospital looking for someone to chat with.
xoxo,
Lisa
Monday, June 6, 2011
Results
***drumroll***
Okay! So the good news is, there don't appear to be any metastasis beyond my neck! The poorly differentiated cells do not take up iodine as well, so it's possible that some didn't show up, and no scan is able to detect microscopic disease, but that spot on my lung didn't glow so this is great.
The bad news is my neck looked a lot worse than expected. This means there are some positive lymph nodes that were missed during the surgery. We expected some uptake because some margins were left in order to spare the parathyroids and vocal chords. This is normal and it is expected that the RAI will destroy that remaining tissue. We hope that the RAI will also do it's thing and destroy those positive nodes as well!
I was very frustrated at UW Medicine today because I had to wait for what seemed like forever for my scan, and then it took over 2 hours! The scanner is a special scanner just for thyroid cancer. It detects the gamma rays emitted from the radioactive spots. The lens is only centimeters from your face, so if you are claustrophobic, good luck. Peering over the doctor's shoulder at the computer screen, I have to say it was quite alarming seeing my liver and bladder glowing on the scans. This is normal and expected as the iodine is metabolized and excreted. What we were concerned about, besides the neck, were the lungs and bones, as that is the most common first destination for thyroid cancer cells. I just don't like knowing that there is all that radiation inside of my body - I want it out of there!
I had a great consult today with a new naturopath, Kathleen Pratt. She is at the same clinic as the last ND that I saw. She listened to my needs, let me talk as much as I needed, and worked with me on my concerns, the biggest of which was getting rid of the radiation in my body (after the treatment, of course). We talked about big doses of antioxidants because those will prevent damage from the radiation. She was so thrilled to hear about my diet and said that I am doing very great things for my body. She prescribed me some antioxidant supplements. One of my current concerns is severe orthostatic hypotension. This occurs when one repositions from lying to sitting to standing and blood pressure drops suddenly, equalling dizziness, and for me, loss of vision for a few moments. I've had it in the past but since my surgery it has been almost scary at times. This can be caused be decreased mineral absorption, and I'll be taking a mineral supplement after I get out of the hospital (I can't take any vitamins or supplements right now due to iodine content). Interestingly, orthostatic hypotension can also be caused by stress, as the adrenals are pumping out all of this cortisol. She prescribed me an adrenal support supplement to take as well. This really makes sense, as the times I've suffered from this condition can definitely be correlated with times of stress in my life.
Another cancer treatment we discussed is IV vitamin C. When taken orally, there is a limit to how much the body will absorb. (Vitamin C is absorbed in the small intestine, in case you were wondering.) But much higher doses can be absorbed through IV. This will help to minimize damage from radiation in my body. This can be followed by an even higher dose of vitamin C, in which case it actually becomes a pro-oxidant and kills cancer cells! This is certainly a treatment I am going to consider, especially if I decide to forgo the external beam radiation treatment.
Tomorrow is back to a normal work day. I'm getting my energy levels back up from my test dose on Friday, and feeling to about how I was on Thursday. I can't believe how much starting a raw diet has helped me, even though my metabolism has continued to plummet more and more each day. My TSH is above 30 now* (if you know anything about thyroid hormones, you won't even be able to imagine how that probably feels). Yet since starting this diet I have gained more energy than right before I started the diet, my hair loss has almost stopped, my bloating improved by about 3 pounds (I'm now only 2 pounds over my weight right before I stopped the hormones), and digestion is completely normal now. My naturopath wasn't surprised at all.
My RAI treatment is still scheduled for Wednesday. I'll be admitted at noon and staying in the hospital for 2 to 4 days in isolation, but there is an open door so visitors are able to talk to me from the doorway (they just can't come in my room). I'll have my cellphone with me in a plastic baggie and hopefully I can access the touch screen sufficiently through that, but once the battery is dead I won't be able to recharge it. I'll have a phone in my room (you remember, the old-fashioned kind, connected to a plug in the wall!), though, if you want to talk to me. If I can fit it into my busy schedule of reading, napping, watching TV, and...um I can't think of anything else ;-)
Apparently Jesse and I are in denial about my impending hospital stay because we just bought tons more produce today. You should see our fridge, it's completely packed with veggies! We also brought home the newest member to our family: a fancy grill! (I don't plan on being 100% raw! and it's Lisa-approved as it has a built in basket for veggies) So please expect lots of BBQ's at the Marsaudon-Follet residence this summer.
The amount of relief, balance, and peace I feel right now is immense. Having put that scan behind me, which I've been anticipating since the day of my diagnosis on March 18, feels so good. The results weren't perfect and I felt some disappointment at first, but the sense of relief that there are no apparent distant metastasis far overwhelms that. Now we just need this RAI to kick butt and destroy all of that cancer in my neck! Go radioactive iodine, Go!
Thank you all for sharing so much love & support. I really felt it today.
xoxo,
Lisa Rose
*Coming soon: a short lesson on thyroid hormones for those of you who aren't healthcare providers nor experts because of personal thyroid issues.
Okay! So the good news is, there don't appear to be any metastasis beyond my neck! The poorly differentiated cells do not take up iodine as well, so it's possible that some didn't show up, and no scan is able to detect microscopic disease, but that spot on my lung didn't glow so this is great.
The bad news is my neck looked a lot worse than expected. This means there are some positive lymph nodes that were missed during the surgery. We expected some uptake because some margins were left in order to spare the parathyroids and vocal chords. This is normal and it is expected that the RAI will destroy that remaining tissue. We hope that the RAI will also do it's thing and destroy those positive nodes as well!
I was very frustrated at UW Medicine today because I had to wait for what seemed like forever for my scan, and then it took over 2 hours! The scanner is a special scanner just for thyroid cancer. It detects the gamma rays emitted from the radioactive spots. The lens is only centimeters from your face, so if you are claustrophobic, good luck. Peering over the doctor's shoulder at the computer screen, I have to say it was quite alarming seeing my liver and bladder glowing on the scans. This is normal and expected as the iodine is metabolized and excreted. What we were concerned about, besides the neck, were the lungs and bones, as that is the most common first destination for thyroid cancer cells. I just don't like knowing that there is all that radiation inside of my body - I want it out of there!
I had a great consult today with a new naturopath, Kathleen Pratt. She is at the same clinic as the last ND that I saw. She listened to my needs, let me talk as much as I needed, and worked with me on my concerns, the biggest of which was getting rid of the radiation in my body (after the treatment, of course). We talked about big doses of antioxidants because those will prevent damage from the radiation. She was so thrilled to hear about my diet and said that I am doing very great things for my body. She prescribed me some antioxidant supplements. One of my current concerns is severe orthostatic hypotension. This occurs when one repositions from lying to sitting to standing and blood pressure drops suddenly, equalling dizziness, and for me, loss of vision for a few moments. I've had it in the past but since my surgery it has been almost scary at times. This can be caused be decreased mineral absorption, and I'll be taking a mineral supplement after I get out of the hospital (I can't take any vitamins or supplements right now due to iodine content). Interestingly, orthostatic hypotension can also be caused by stress, as the adrenals are pumping out all of this cortisol. She prescribed me an adrenal support supplement to take as well. This really makes sense, as the times I've suffered from this condition can definitely be correlated with times of stress in my life.
Another cancer treatment we discussed is IV vitamin C. When taken orally, there is a limit to how much the body will absorb. (Vitamin C is absorbed in the small intestine, in case you were wondering.) But much higher doses can be absorbed through IV. This will help to minimize damage from radiation in my body. This can be followed by an even higher dose of vitamin C, in which case it actually becomes a pro-oxidant and kills cancer cells! This is certainly a treatment I am going to consider, especially if I decide to forgo the external beam radiation treatment.
Tomorrow is back to a normal work day. I'm getting my energy levels back up from my test dose on Friday, and feeling to about how I was on Thursday. I can't believe how much starting a raw diet has helped me, even though my metabolism has continued to plummet more and more each day. My TSH is above 30 now* (if you know anything about thyroid hormones, you won't even be able to imagine how that probably feels). Yet since starting this diet I have gained more energy than right before I started the diet, my hair loss has almost stopped, my bloating improved by about 3 pounds (I'm now only 2 pounds over my weight right before I stopped the hormones), and digestion is completely normal now. My naturopath wasn't surprised at all.
My RAI treatment is still scheduled for Wednesday. I'll be admitted at noon and staying in the hospital for 2 to 4 days in isolation, but there is an open door so visitors are able to talk to me from the doorway (they just can't come in my room). I'll have my cellphone with me in a plastic baggie and hopefully I can access the touch screen sufficiently through that, but once the battery is dead I won't be able to recharge it. I'll have a phone in my room (you remember, the old-fashioned kind, connected to a plug in the wall!), though, if you want to talk to me. If I can fit it into my busy schedule of reading, napping, watching TV, and...um I can't think of anything else ;-)
Apparently Jesse and I are in denial about my impending hospital stay because we just bought tons more produce today. You should see our fridge, it's completely packed with veggies! We also brought home the newest member to our family: a fancy grill! (I don't plan on being 100% raw! and it's Lisa-approved as it has a built in basket for veggies) So please expect lots of BBQ's at the Marsaudon-Follet residence this summer.
The amount of relief, balance, and peace I feel right now is immense. Having put that scan behind me, which I've been anticipating since the day of my diagnosis on March 18, feels so good. The results weren't perfect and I felt some disappointment at first, but the sense of relief that there are no apparent distant metastasis far overwhelms that. Now we just need this RAI to kick butt and destroy all of that cancer in my neck! Go radioactive iodine, Go!
Thank you all for sharing so much love & support. I really felt it today.
xoxo,
Lisa Rose
*Coming soon: a short lesson on thyroid hormones for those of you who aren't healthcare providers nor experts because of personal thyroid issues.
Sunday, June 5, 2011
Scan day tomorrow
Happy Sunday from sunshiny Seattle. We've had a gorgeous weekend, and although I haven't had much energy and getting out of bed is the biggest challenge of my day, we've taken in our share of rays at the park, the Japanese gardens, and at the beach down the street. Last night Jamie and I went to Pacific NW Ballet's Giselle which was quite a treat. We have season tickets, but this ballet was unique in that the score was written just for the ballet, and the choreography was very close to the original choreography from the 1800's. There was a lot of miming and signing and the dancing was much more of a romantic era style than classical. This evening we are going for a sail and even if I can't help much on the boat, just being outside is always healing. This afternoon was spent at Frenchy's Day Spa, a very girlie spa in Madison Park. It sounds shallow, but I can't even express how much pampering treatments help my mood and my body. Being able to actually relax and slow my brain down for a bit, and having an appointment that is actually fun instead of something I dread, is really important to me right now.
Besides the extreme fatigue, I have been experiencing another side effect I was warned about: neck soreness from the thyroid cells & salivary glands taking up the iodine. It feels like right after surgery, but not quite as bad as I'm still able to eat without too much difficulty. I am so eager to get back to being my old self, even though I know it will take a while for my thyroid hormone levels to build back up after I get to start taking them again after treatment.
Preparing mentally & physically for my scan tomorrow...wish me luck, or send good thoughts, good karma, or whatever it is I need.
xoxo,
Lisa
Besides the extreme fatigue, I have been experiencing another side effect I was warned about: neck soreness from the thyroid cells & salivary glands taking up the iodine. It feels like right after surgery, but not quite as bad as I'm still able to eat without too much difficulty. I am so eager to get back to being my old self, even though I know it will take a while for my thyroid hormone levels to build back up after I get to start taking them again after treatment.
Preparing mentally & physically for my scan tomorrow...wish me luck, or send good thoughts, good karma, or whatever it is I need.
xoxo,
Lisa
Friday, June 3, 2011
Radioactive
I'm officially radioactive now; I had my test dose of I-131 today. It is a small dose, 3 mci compared to the 200 mci I'll be receiving in the hospital on Wednesday, but I still have to take precautions. For 24 hours after my dose I can't have any close contact with anyone so Jesse and Zeus have to stay at least 3 feet away (and sleep in the guest room!). I have to flush the toilet twice, wash my hands extra carefully, and wash my dishes separately as most of the radioactivity is excreted through bodily fluids. As my nurse said, "no kissy face!" That rule is in effect until 7 days after my full dose. I'm sure Zeus appreciates that I won't try to kiss him :)
I haven't experienced any side effects yet, which are usually nausea and dry mouth, but I'm utterly exhausted. We tried a trip to the farmers market but after only ten or fifteen minutes I felt like I'd climbed a mountain. So I've spent the remainder of the day sitting at the park, lying in bed, or on the couch. What a shame, as it's such a gorgeous day and this weekend is forecasted to be in the high 70's. I have fun plans, like Pacific Northwest Ballet's Giselle tomorrow night, and mani-pedis with the doc I work for and sailing on Sunday. I hope I can gather the energy for all this fun.
For now, anxiously awaiting my full body scan on Monday. It takes 60-90 minutes...I hope I can hold still for that long. I might have to ask for a little something to help me relax.
My doctor said I really will glow...haven't noticed anything yet but we'll find out tonight!
Peace,
Lisa
I haven't experienced any side effects yet, which are usually nausea and dry mouth, but I'm utterly exhausted. We tried a trip to the farmers market but after only ten or fifteen minutes I felt like I'd climbed a mountain. So I've spent the remainder of the day sitting at the park, lying in bed, or on the couch. What a shame, as it's such a gorgeous day and this weekend is forecasted to be in the high 70's. I have fun plans, like Pacific Northwest Ballet's Giselle tomorrow night, and mani-pedis with the doc I work for and sailing on Sunday. I hope I can gather the energy for all this fun.
For now, anxiously awaiting my full body scan on Monday. It takes 60-90 minutes...I hope I can hold still for that long. I might have to ask for a little something to help me relax.
My doctor said I really will glow...haven't noticed anything yet but we'll find out tonight!
Peace,
Lisa
Wednesday, June 1, 2011
Quick update
Hello there,
Just wanted to let you know I'm getting through each day. I have good days and bad days - yesterday was really tough; I just felt like a slug. It doesn't help that Jesse is in Ohio for work until tomorrow so home is a bit lonely. Zeus is great but...a little smellier. Today my energy levels are back up and I feel much more balanced. Someone must be sending Reiki. Today was my first time experiencing the intense intolerance to cold that I've been hearing about. I was freezing cold at work while my coworkers all agreed it was quite warm (or maybe it's because most of them are perimenopausal? ;) Anyway, the thermometer at my desk said 72 but I was quite sure it was only 42 at the most. Hopefully a bubble bath can cure that, especially with my favorite Lush bubble bar.
The strict low-iodine diet is perhaps the most difficult part of this phase (so far), but my raw food diet has really helped my body and the bloating has improved a whole lot as well as my digestion. I can't imagine how hard this diet would be for someone who normally eats a Standard American Diet. I'm used to preparing meals at home and this has inspired me to get a bit more creative.
A great piece of advice from a documentary I just watched...
Don't do something 'so you won't die.' Don't juice 'so you won't die.' Don't exercise 'so you won't die.' Do something so that you can live this day and this life to its fullest. Juice so that you can live this day and this life to its fullest. Exercise so you can live this day and this life to its fullest.
Just wanted to let you know I'm getting through each day. I have good days and bad days - yesterday was really tough; I just felt like a slug. It doesn't help that Jesse is in Ohio for work until tomorrow so home is a bit lonely. Zeus is great but...a little smellier. Today my energy levels are back up and I feel much more balanced. Someone must be sending Reiki. Today was my first time experiencing the intense intolerance to cold that I've been hearing about. I was freezing cold at work while my coworkers all agreed it was quite warm (or maybe it's because most of them are perimenopausal? ;) Anyway, the thermometer at my desk said 72 but I was quite sure it was only 42 at the most. Hopefully a bubble bath can cure that, especially with my favorite Lush bubble bar.
The strict low-iodine diet is perhaps the most difficult part of this phase (so far), but my raw food diet has really helped my body and the bloating has improved a whole lot as well as my digestion. I can't imagine how hard this diet would be for someone who normally eats a Standard American Diet. I'm used to preparing meals at home and this has inspired me to get a bit more creative.
A great piece of advice from a documentary I just watched...
Don't do something 'so you won't die.' Don't juice 'so you won't die.' Don't exercise 'so you won't die.' Do something so that you can live this day and this life to its fullest. Juice so that you can live this day and this life to its fullest. Exercise so you can live this day and this life to its fullest.
Saturday, May 28, 2011
Hypo
Hello! It has been such a long time since I last updated you all. Let's see...
I have returned from vacation and back to reality, as in, a full work week! It's hard enough coming back to work after vacation, but I have also been off of all of my thyroid meds for a week and a half now, and as the effects of hypothyroidism start to creep in, every day gets a little harder. In case you don't know all of the fun symptoms, here are some:
I have returned from vacation and back to reality, as in, a full work week! It's hard enough coming back to work after vacation, but I have also been off of all of my thyroid meds for a week and a half now, and as the effects of hypothyroidism start to creep in, every day gets a little harder. In case you don't know all of the fun symptoms, here are some:
- Fatigue
- Weight gain
- Weakness
- Depression
- Memory problems
- Constipation
- Hair loss
- Dry skin
- Cold intolerance
Yesterday marked Day 1 of my low-iodine diet. It is much more strict than you'd imagine! No dairy or egg yolks allowed (egg whites okay), and only 6 ounces of meat per day. Fortunately for me, I'm already vegan so I don't have to worry about that. No processed foods, as it's not clear whether or not they contain iodine (it isn't listed on nutrition labels). No restaurant food for that same reason. So that leaves me with an abundance of fruits, vegetables, grains, nuts, legumes, and seeds to eat! Even with my normal diet I try to stick to whole foods and nothing processed, but this is a wake up to have to make every simple ingredient from scratch and not open any cans of beans or tomatoes. I'm using this as an opportunity to take on a mostly raw diet. It will be like a cleanse. I downloaded a cookbook from a thyroid cancer website expecting to find great tips. Instead, I was shocked at how unhealthy most of the recipes were. Flour, sugar, and potatoes obviously are acceptable elements to this diet!
I might have mentioned this before, but I have been very inspired by the work of Kris Carr, a cancer survivor who has written multiple books and filmed a documentary called Crazy Sexy Cancer. She wrote a great book on cancer prevention called Crazy Sexy Diet. Check it out! I have been very inspired in the recent weeks by people around be beginning a vegetarian lifestyle. I'm excited to see where it will take them.
I hope you all enjoy your beautiful Memorial Day weekend! I have my RAI diagnostic dose on Friday, followed by my first full body scan on Monday, June 6. I am very anxious for those results but confident that they will be great :)
xoxo,
Lisa
Tuesday, May 17, 2011
Hello from Virginia Beach
I'm writing you all from vacation here in Virginia Beach. It's so nice to get some sunshine and if you know me you know I love the beach! We spent all day Sunday riding insane roller coasters at Busch Gardens. One of my friends asked if roller coasters cure cancer, and they might not, but fun and happiness sure might!
I have been off of my Levoxyl for a while now and every day I feel more and more different. I'm in a bit of a fog and the strangest part is I no longer have an appetite. I never feel hungry or full. I just have to eat when everyone else does to keep my blood sugars up. I will have to keep decreasing my portion size since I have no metabolism and I don't want to gain more weight than I have to. Today is my last day getting to take Cytomel, which provides some temporary energy. I'm already getting more forgetful, so I'm sorry if I do anything dumb in the upcoming weeks ;-)
Here's my calendar of appointments so you'll know what I'm up to:
May 18 - Stop Cytomel
May 27- Start low iodine diet
June 3 - Bloodwork & RAI test dose at UW
June 6 - Full body scan
June 8 - Inpatient RAI treatment at UW
June 16 - Full body scan
Ok, back to the beach for some sunbathing!
xoxo,
Lisa
I have been off of my Levoxyl for a while now and every day I feel more and more different. I'm in a bit of a fog and the strangest part is I no longer have an appetite. I never feel hungry or full. I just have to eat when everyone else does to keep my blood sugars up. I will have to keep decreasing my portion size since I have no metabolism and I don't want to gain more weight than I have to. Today is my last day getting to take Cytomel, which provides some temporary energy. I'm already getting more forgetful, so I'm sorry if I do anything dumb in the upcoming weeks ;-)
Here's my calendar of appointments so you'll know what I'm up to:
May 18 - Stop Cytomel
May 27- Start low iodine diet
June 3 - Bloodwork & RAI test dose at UW
June 6 - Full body scan
June 8 - Inpatient RAI treatment at UW
June 16 - Full body scan
Ok, back to the beach for some sunbathing!
xoxo,
Lisa
Location:Virginia Beach,United States
Saturday, May 7, 2011
Seattle Cancer Care Alliance
Hello my lovelies,
Yesterday I had a consult with an oncologist at the Seattle Cancer Care Alliance. I loved the hospital, the staff, and the doctor! Everyone was so caring and compassionate, they have a great facility (with quite a view of Lake Union) and my doctor was very thorough and spent probably about an hour going over everything with me. Most doctors these days seem so rushed (and I know the Virginia Mason system strives to be efficient, which equals rushed), but Dr. Mankoff was in no hurry and kept asking if I had any questions.
Here's the plan: I am going to transfer care there. Even though my insurance covers at a lower rate, I think that quality care is most definitely worth the extra cost. They want to give me the highest dose of RAI, and this will be an inpatient procedure. I have to be in isolation in a room with lead walls and visitors must talk to me through a glass window (sounds like prison!). Anything I touch has to be disposed of when I'm discharged, so I can't wear my own clothes or bring my laptop or cell phone. I will be there for 2 to 4 days. I'll be at the UW hospital if you want to come visit me in prison! This has to be at least two months after my last CT with contrast, as the contrast iodine has to be out of my system so that my cancer cells will take up the radioactive iodine. It looks like it will probably be around June 8.
Before I do the RAI I have to be off of Levoxyl (my thyroid hormone medication) for at least 4 weeks so that my TSH level gets above 30!! Dr. Mankoff warned me that besides feeling like a slug, I will also quickly gain a lot of water weight and my face will look like someone tied a very tight noose around my neck. Oh boy, can't wait :) No one is allowed to come near me with a camera! The RAI side effects include nausea, but fortunately they have good meds to offer me for that. The salivary glands also take up iodine, so they usually swell and cause pain and difficulty swallowing and dry mouth. Good thing I like lemon drops. Some patients continue to suffer from dry mouth for the rest of their lives. Other risks include leukemia, but the risk is only 0.2 - 0.3% per ten years, so unless I live to 500 it isn't a very significant risk. (Someone forgot to tell him that I do plan to live past 500!)
After my RAI, he does recommend external radiation. I will have a consult with a radiation oncologist and I'm not making any decisions yet on whether or not I will do that. I'm going to focus on one thing at a time, and right now it's vacation that I'm leaving for on Friday! Dreaming of Atlantic beaches, dozing in the sunshine, and devouring book after book.
Happy Mothers Day to the most fabulous mom in the world (mine!), and to all of you other mommies. You have my utmost adoration!
xoxo,
Rosey (that's for you, mommybrat)
Saturday, April 30, 2011
Updates
Hello my lovely friends & family...
I have been a bit disappointed the past couple of days because my doctors have advised that I do external radiation after I complete my RAI treatment. They say that it will probably decrease my chances of recurrence by about half. But, the risks of radiation scare me: Hodgkin's lymphoma, burns, problems with swallowing, damage to my vocal chords... If it were to a different body part I likely would not be so against it, but my neck is such a vulnerable location. I want to wait until my post-ablation scan (which will be one week after my RAI treatment) to see how hard my doctors push for me to do radiation and make a decision then.
But, on a happier note, through family connections I was able to get an appointment with an oncologist at the Seattle Cancer Care Alliance, who is supposed to be very good and came highly recommended from the chair of medicine at UW. Thank you, Uncle Roger and Aunt Noel! That appointment will be this Friday, May 6th. I am considering transferring care there. Even though my insurance will cover at a lower rate, I think for the less common cancers it is important to be treated by the very best and at a cancer hospital. I am anxious to hear this doctor's opinion and see how I feel about this hospital. Already, just talking with the coordinators who helped me get scheduled, I feel that this hospital is far more compassionate and caring than Virginia Mason. These people are used to dealing with cancer patients and I felt like they really understood me.
Now, off to enjoy this beautifully sunny weekend which will include a healing massage and hopefully lots of time at the park with my dog!
xoxo,
Lisa
I have been a bit disappointed the past couple of days because my doctors have advised that I do external radiation after I complete my RAI treatment. They say that it will probably decrease my chances of recurrence by about half. But, the risks of radiation scare me: Hodgkin's lymphoma, burns, problems with swallowing, damage to my vocal chords... If it were to a different body part I likely would not be so against it, but my neck is such a vulnerable location. I want to wait until my post-ablation scan (which will be one week after my RAI treatment) to see how hard my doctors push for me to do radiation and make a decision then.
But, on a happier note, through family connections I was able to get an appointment with an oncologist at the Seattle Cancer Care Alliance, who is supposed to be very good and came highly recommended from the chair of medicine at UW. Thank you, Uncle Roger and Aunt Noel! That appointment will be this Friday, May 6th. I am considering transferring care there. Even though my insurance will cover at a lower rate, I think for the less common cancers it is important to be treated by the very best and at a cancer hospital. I am anxious to hear this doctor's opinion and see how I feel about this hospital. Already, just talking with the coordinators who helped me get scheduled, I feel that this hospital is far more compassionate and caring than Virginia Mason. These people are used to dealing with cancer patients and I felt like they really understood me.
Now, off to enjoy this beautifully sunny weekend which will include a healing massage and hopefully lots of time at the park with my dog!
xoxo,
Lisa
Wednesday, April 27, 2011
Transformations
I just got back from a great and very challenging yoga class and feel so balanced. I genuinely think that yoga helps people to heal.
After scathing about the naturopath the other day, I should add that he did leave me with one inspirational comment. He guessed {correctly} that part of me was wondering why I try so hard to take care of myself just to get cancer anyway. He said that we can control a lot through diet and lifestyle, but some things and environmental factors are beyond our control. He told me that one thing he knows is that if I didn't do all I do to take care of myself, my cancer would be a lot worse and I would heal much slower. I have reflected on this a lot over the past two days and have really come to peace with the fact that I have cancer. The "why me? why me? what the f***?" that kept running through my head before has transformed into a gratefulness that I was raised with a conscience for health and a drive to learn and an openness change and knowledge. Thank you to every person in my life who has fueled those traits.
Peace, love, and vegetables,
Lisa Rose
After scathing about the naturopath the other day, I should add that he did leave me with one inspirational comment. He guessed {correctly} that part of me was wondering why I try so hard to take care of myself just to get cancer anyway. He said that we can control a lot through diet and lifestyle, but some things and environmental factors are beyond our control. He told me that one thing he knows is that if I didn't do all I do to take care of myself, my cancer would be a lot worse and I would heal much slower. I have reflected on this a lot over the past two days and have really come to peace with the fact that I have cancer. The "why me? why me? what the f***?" that kept running through my head before has transformed into a gratefulness that I was raised with a conscience for health and a drive to learn and an openness change and knowledge. Thank you to every person in my life who has fueled those traits.
Peace, love, and vegetables,
Lisa Rose
Tuesday, April 26, 2011
Good news
Today Jesse took me to my first post-op visit with my surgeon, Dr. Glenn. The doctor was thrilled with my healing and cleared me to go back to the gym, even though he had originally thought I'd have to take a month off from exercising. He also said I don't even have to come back for my second post-op visit! Jesse and I were so happy to finally get some good news.
Dr. Glenn did push for me to do external radiation - he says that my risk of recurrence is high and of course we want to avoid further surgeries. The official recommendation will be decided upon tomorrow, but he did advise that I at least have a consult with a radiation oncologist.
I have been alerted that the "donate" button on the sidebar does not work. I'm looking into it and if any of you computer nerds can help me out I would appreciate it :)
Wishing you all a wonderful rest of your week.
xoxo,
Lisa
Dr. Glenn did push for me to do external radiation - he says that my risk of recurrence is high and of course we want to avoid further surgeries. The official recommendation will be decided upon tomorrow, but he did advise that I at least have a consult with a radiation oncologist.
I have been alerted that the "donate" button on the sidebar does not work. I'm looking into it and if any of you computer nerds can help me out I would appreciate it :)
Wishing you all a wonderful rest of your week.
xoxo,
Lisa
Monday, April 25, 2011
Naturopath
Hello friends,
I hope your weather isn't as miserable as it is here! The sun is such a tease, giving us that beautiful Saturday and now it's back to rain, rain, rain, as far as the weatherman can see.
Today my darling friend Cherl took me to my appointment with a naturopath. The appointment really didn't feel productive to me. After a long review of symptoms, he told me that I'm really healthy (duh, I knew that), and that I'm doing everything right. However, he wasn't a huge fan of the vegan thing and told me that I am not getting and absorbing enough minerals. Isn't it amazing that he knows that without even checking my blood levels?! {Which are all within normal range, by the way!} After citing claims from the USDA about the decreasing amounts of nutrients in vegetables and plants {who funds the USDA? why, the dairy industry, of course!}, he wrote me a prescription for a multivitamin and a calcium with magnesium supplement. Perhaps it couldn't hurt to take these supplements {or could it?}, but I don't think I needed to see a doctor to tell me this. If anyone knows a vegan naturopath in Seattle, or at least one who is knowledgable about vegan diets, please send me info! He did share good information about the dangers of high levels of antioxidants in the diet during radiation & chemo. So I will have to take a vacay from my delicious daily green juice during that part of my treatment.
You are all so amazing and supportive. My inbox has been flooded with e-mails and referrals, and I apologize if I am slow to respond. Between all of these appointments and working full time I haven't been as good about writing back as I should be. I really, really appreciate all of your support and information you share.
Lots of love!
Lisa
Sunday, April 24, 2011
Sunshine!
We just got home from a busy weekend in Bellingham. It started off with a Reiki treatment yesterday, and I really feel like a different person after that. I don't know how to describe the effects, but as my dad said, "there is something to it." After Jesse & Alex headed up to Baker for some snowboarding/skiing, I took Zen & Zeus for a romp through Whatcom Falls park all the way to Bloedel Donovan, where they got to run around off-leash like maniacs. It was gloriously sunshiny and warm enough to be in just a t-shirt and jeans and boots. I'm certain that those three hours in nature provided much healing as well. That gorgeous day in Bellingham certainly made me miss living in that city! The weekend also included some girl time of pedicures with Madi and lots of opportunities for the guys to sample beers from different breweries.
If you haven't yet seen Water For Elephants, I highly recommend it. It was a beautifully done film and the story evoked so many emotions. Although, I am not sure that I could watch it again; it is too painful to see animals treated the way they are for circuses.
This week will yet again include lots of appointments: tomorrow I am going to see Dan Labriola, a naturopathic doctor at Seattle Naturopathic Physicians, who specializes in cancer. He was recommended by one of the providers that I work with. I am looking for a coordinated treatment plan of both alternative and conventional medicine and I hope that he can help me organize and devise a plan.
Also up this week: a post-op appointment on Tuesday with my surgeon, Dr. Glenn (I am hoping to get the okay to get back to my normal exercise routine!), and another acupuncture treatment on Thursday. The conference where my doctors will decide on my treatment plan is on Wednesday so I hope to know more about what they recommend by the end of the week. I think I will have to start carrying around my iPad just to keep track of my schedule!
If you use gmail you can follow my blog by signing up on the right hand nav bar, otherwise you can enter your email address to have updates emailed to you. I'll update as soon as I know more about the plan of attack! Thanks for being part of the team :)
Love,
Lisa
If you haven't yet seen Water For Elephants, I highly recommend it. It was a beautifully done film and the story evoked so many emotions. Although, I am not sure that I could watch it again; it is too painful to see animals treated the way they are for circuses.
This week will yet again include lots of appointments: tomorrow I am going to see Dan Labriola, a naturopathic doctor at Seattle Naturopathic Physicians, who specializes in cancer. He was recommended by one of the providers that I work with. I am looking for a coordinated treatment plan of both alternative and conventional medicine and I hope that he can help me organize and devise a plan.
Also up this week: a post-op appointment on Tuesday with my surgeon, Dr. Glenn (I am hoping to get the okay to get back to my normal exercise routine!), and another acupuncture treatment on Thursday. The conference where my doctors will decide on my treatment plan is on Wednesday so I hope to know more about what they recommend by the end of the week. I think I will have to start carrying around my iPad just to keep track of my schedule!
If you use gmail you can follow my blog by signing up on the right hand nav bar, otherwise you can enter your email address to have updates emailed to you. I'll update as soon as I know more about the plan of attack! Thanks for being part of the team :)
Love,
Lisa
Friday, April 22, 2011
Scan Results
The scans didn't come back as perfect as I'd hoped for. There is a small lesion on the upper lobe of my right lung. The plan is to wait and compare it to the scan that I will have right before my RAI treatment. If it has changed in size, my dose may be adjusted. I'm hoping it's nothing.
On a better note, my acupuncture treatment was definitely worth it. I could feel the needles being inserted but it wasn't painful. As I laid there after they were all in place I went into something like a trance. I wasn't asleep but I wasn't really awake either. I definitely feel better now, and I am going to continue it to help keep my energy up during treatment.
Happy Friday! Have a great weekend. We are headed up to Bellingham this weekend and I am going to have a Reiki treatment tomorrow morning with an old family friend.
xoxo,
Lisa
On a better note, my acupuncture treatment was definitely worth it. I could feel the needles being inserted but it wasn't painful. As I laid there after they were all in place I went into something like a trance. I wasn't asleep but I wasn't really awake either. I definitely feel better now, and I am going to continue it to help keep my energy up during treatment.
Happy Friday! Have a great weekend. We are headed up to Bellingham this weekend and I am going to have a Reiki treatment tomorrow morning with an old family friend.
xoxo,
Lisa
Thursday, April 21, 2011
Scan Day
Today I have a scan of my chest to check my lungs. I am feeling very confident that it will be completely negative! Because I can't have iodine (in preparation for my RAI treatment), the scan will have to be without contrast, but hopefully they will get a good enough view to tell me everything looks good.
I also have an acupuncture treatment scheduled today. I have never tried it but my massage therapist recommended this person because some of her other clients have had great results. I have started reading Life Over Cancer by Keith Block, which discusses an integrative approach to cancer treatment, using both Western medicine and lifestyle changes, and what he calls "time-sensitive treatment."
I will probably have my CT results on Monday. I'll keep you updated!
xoxo,
Lisa
I also have an acupuncture treatment scheduled today. I have never tried it but my massage therapist recommended this person because some of her other clients have had great results. I have started reading Life Over Cancer by Keith Block, which discusses an integrative approach to cancer treatment, using both Western medicine and lifestyle changes, and what he calls "time-sensitive treatment."
I will probably have my CT results on Monday. I'll keep you updated!
xoxo,
Lisa
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