hello, and happy Monday...
enjoying summer to its fullest here, and despite being busy at work, in the last week there was kayaking, brunch with friends, a film in a park beneath the stars for my best friend's birthday, lots of wedding reception planning, playing in a raft in the lake with my hubby as we watched the blue angels perform for seafair, sailing with old friends, and swimming in the ice cold sea. the weather here was into the 90's this weekend, and what a rare treat that is for Seattle!
We are still planning for my treatment in September, although I have not received the final schedule from my doctor yet. I am thankful that I was able to postpone until next month so that I can enjoy all of this sunshine. And I am anxiously awaiting our wedding reception in just under four weeks, for I am eager to see and celebrate with my nearest and dearest!
xoxo,
Lisa
Monday, August 6, 2012
Saturday, July 28, 2012
saying goodbye
Hello, my loves...
These past weeks have been an emotional challenge, and I have felt more fragile and delicate than ever.
My grandmother was scheduled to arrive in Seattle on July 4th to spend a few days before embarking on her dream Alaskan cruise. However, an emergency surgery for a small bowel obstruction canceled her trip, followed by an uncontrollable infection and respiratory distress syndrome, which took her from this world last week. Jesse and I flew down to Orange County, California last weekend to be with our family. It was a sad and emotional time, but beautiful in that it brought loved ones together.
In her passing we have all been reflecting on what a magnificent lady she was and the ways in which she inspired us. My earliest and fondest memories of her are her singing for me. She had the most magical singing voice, and how I wish I had inherited that! But she did instill in me a love of music, and every time I sit down at my piano I think of her hands, gradually aging through time and becoming more arthritic and less nimble, but still able to play the most beautiful classical pieces until the very end. Her favorite tune of all was Somewhere Over The Rainbow, which certainly has become my preferred as well. When I was a child she sent me a cassette tape she recorded of herself singing that dreamy song, and how I wish I still had that.
Carole, my grandmother, imbued the French spirit, as she would linger for hours over a meal, eating slower than any of us grandkids thought humanly possible. She also loved to savor her red wine and her coffee. Eating a meal, surrounded by her loved ones, was her most treasured time of all. We could all learn from this to slow down a little and relish the best moments and meals in life.
She also loved to travel, and although she didn't make it on her Alaskan cruise, she did traverse the country much in her midlife in the RV her husband loved to drive. I remember fondly when they would roll up to my childhood house and my brothers and I would gleefully go sit in Grandma's motorhome, and even got to sleep a night or two in there. As I mentioned before, my grandmother did love her coffee, and at her service my aunt shared the story she had heard of one of their travels when they were driving through the city in their RV when it was time for Carole's afternoon coffee. Of course there was no where to park the monstrous vehicle, so her husband circled the block again and again while Grandma was in the coffee shop.
The most amazing thing about my grandmother was her ability to spot beauty in anything. She was always observing the world around her and pointing out what she thought was beautiful; things that most would never have even noticed. Somewhere Over The Rainbow really did seem like a fitting theme song for her. And in her memory I will try to open my eyes more; to experience the world around me and seek out the lovely amidst the mundane. What a marvelous way to stay positive and happy.
It aches that she will not be there for our wedding reception in September, because I remember the delight in her voice as I told her about it, and through her tears of joy she told me how excited she was for it, and for Jesse and I to be married. I know that she will be watching us from over the rainbow, among bluebirds, where dreams really do come true...
I love you, Grandma.
These past weeks have been an emotional challenge, and I have felt more fragile and delicate than ever.
My grandmother was scheduled to arrive in Seattle on July 4th to spend a few days before embarking on her dream Alaskan cruise. However, an emergency surgery for a small bowel obstruction canceled her trip, followed by an uncontrollable infection and respiratory distress syndrome, which took her from this world last week. Jesse and I flew down to Orange County, California last weekend to be with our family. It was a sad and emotional time, but beautiful in that it brought loved ones together.
In her passing we have all been reflecting on what a magnificent lady she was and the ways in which she inspired us. My earliest and fondest memories of her are her singing for me. She had the most magical singing voice, and how I wish I had inherited that! But she did instill in me a love of music, and every time I sit down at my piano I think of her hands, gradually aging through time and becoming more arthritic and less nimble, but still able to play the most beautiful classical pieces until the very end. Her favorite tune of all was Somewhere Over The Rainbow, which certainly has become my preferred as well. When I was a child she sent me a cassette tape she recorded of herself singing that dreamy song, and how I wish I still had that.
Carole, my grandmother, imbued the French spirit, as she would linger for hours over a meal, eating slower than any of us grandkids thought humanly possible. She also loved to savor her red wine and her coffee. Eating a meal, surrounded by her loved ones, was her most treasured time of all. We could all learn from this to slow down a little and relish the best moments and meals in life.
She also loved to travel, and although she didn't make it on her Alaskan cruise, she did traverse the country much in her midlife in the RV her husband loved to drive. I remember fondly when they would roll up to my childhood house and my brothers and I would gleefully go sit in Grandma's motorhome, and even got to sleep a night or two in there. As I mentioned before, my grandmother did love her coffee, and at her service my aunt shared the story she had heard of one of their travels when they were driving through the city in their RV when it was time for Carole's afternoon coffee. Of course there was no where to park the monstrous vehicle, so her husband circled the block again and again while Grandma was in the coffee shop.
The most amazing thing about my grandmother was her ability to spot beauty in anything. She was always observing the world around her and pointing out what she thought was beautiful; things that most would never have even noticed. Somewhere Over The Rainbow really did seem like a fitting theme song for her. And in her memory I will try to open my eyes more; to experience the world around me and seek out the lovely amidst the mundane. What a marvelous way to stay positive and happy.
It aches that she will not be there for our wedding reception in September, because I remember the delight in her voice as I told her about it, and through her tears of joy she told me how excited she was for it, and for Jesse and I to be married. I know that she will be watching us from over the rainbow, among bluebirds, where dreams really do come true...
I love you, Grandma.
Thursday, July 12, 2012
just a little update
Hello there...it's been a long time, and I regret the long absence. So very much has been going on in my life, yet very little progress with my treatment has taken place. I'm blogging from our balcony in this amazing 80 degree Seattle weather. There's no place I'd rather be than the Pacific Northwest in the summer. Jesse and I house- and dog-sitted in Redmond this week, and spent our nights hanging out in the hot tub or drinking wine in the sun, blissfully enjoying the sun. Can you tell I'm from the NW, seeing as I feel the need to write half my post about the sunshine?
I want to say thank you to those of you who have contributed to my cancer ass-kicking fund. With the nightmare of all of the hospital bills I've been facing, your support is so very appreciated. I don't know how I'd do it wi
We have been hard at work planning our wedding reception. It's shaping up to be just the celebration I envisioned, thanks to some help from some very wonderful friends. My good friend Sarah is helping me to create and letterpress some incredible invitations, and it's amazing how much work goes into creating custom stationery like that. She listened so closely and is transforming my visions into a reality, and knowing her, the finished product will be even more than I could have dreamed of. I can't wait until my loved ones find them in their mailboxes.
I am just finishing my up second week at my new job. It's been a whirlwind trying to move to this new practice, and slowly but surely everything is coming together. I'm excited to finally move into the 21st century with computer charting, and learning the system has been a breeze. However, working in a clinic with male patients is quite different to me, having only worked with women for the past three years! Thankfully, the doctor I work with will still only see women, but the office dynamics are certainly different. I look forward to us getting settled into our new routine and seeing what amazing things we can accomplish.
In the beginning of June I went with the doctor and nurse practitioner I work with to a urogynecology conference in New Orleans. It turned out to be a disaster getting there - think canceled flights and spending the night on the floor of the freezing Dallas airport - but we learned a lot and it was a great bonding experience for our team.
Other excitements include some sailing expeditions, one of which was a 16 hour journey from Seattle to Anacortes on the 4th of July. It was Zeus' first long sailing trip, and he did great. Weekend brunches with friends or family seem to be becoming a routine, and I have to say it is probably my favorite moment of the week.
And as for my treatment, I did decide that I wanted to try the radioactive iodine, and see if it will work. The risks of external beam radiation are just too high. It has been a nightmare getting the treatment scheduled. There was a shortage of the thyrogen medication until June, and now that it's in stock, there is a backlog of people needing treatment. They had me scheduled for the end of August, but since our reception is September 1st and I am required to keep a 3 foot distance from anyone for a week after discharge from the hospital (as well as many other not-fun precautions), I had to ask them to reschedule the treatment for September. I am still working with the Cancer Care Alliance to get that scheduled.
So, there's some snippets of my life. I'll try to stop by more often :)
xoxo,
Lisa
I want to say thank you to those of you who have contributed to my cancer ass-kicking fund. With the nightmare of all of the hospital bills I've been facing, your support is so very appreciated. I don't know how I'd do it wi
We have been hard at work planning our wedding reception. It's shaping up to be just the celebration I envisioned, thanks to some help from some very wonderful friends. My good friend Sarah is helping me to create and letterpress some incredible invitations, and it's amazing how much work goes into creating custom stationery like that. She listened so closely and is transforming my visions into a reality, and knowing her, the finished product will be even more than I could have dreamed of. I can't wait until my loved ones find them in their mailboxes.
I am just finishing my up second week at my new job. It's been a whirlwind trying to move to this new practice, and slowly but surely everything is coming together. I'm excited to finally move into the 21st century with computer charting, and learning the system has been a breeze. However, working in a clinic with male patients is quite different to me, having only worked with women for the past three years! Thankfully, the doctor I work with will still only see women, but the office dynamics are certainly different. I look forward to us getting settled into our new routine and seeing what amazing things we can accomplish.
In the beginning of June I went with the doctor and nurse practitioner I work with to a urogynecology conference in New Orleans. It turned out to be a disaster getting there - think canceled flights and spending the night on the floor of the freezing Dallas airport - but we learned a lot and it was a great bonding experience for our team.
Other excitements include some sailing expeditions, one of which was a 16 hour journey from Seattle to Anacortes on the 4th of July. It was Zeus' first long sailing trip, and he did great. Weekend brunches with friends or family seem to be becoming a routine, and I have to say it is probably my favorite moment of the week.
And as for my treatment, I did decide that I wanted to try the radioactive iodine, and see if it will work. The risks of external beam radiation are just too high. It has been a nightmare getting the treatment scheduled. There was a shortage of the thyrogen medication until June, and now that it's in stock, there is a backlog of people needing treatment. They had me scheduled for the end of August, but since our reception is September 1st and I am required to keep a 3 foot distance from anyone for a week after discharge from the hospital (as well as many other not-fun precautions), I had to ask them to reschedule the treatment for September. I am still working with the Cancer Care Alliance to get that scheduled.
So, there's some snippets of my life. I'll try to stop by more often :)
xoxo,
Lisa
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| Sailor dog { + friend } |
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| Sailor husband |
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| 4th of July Sunset |
Monday, May 21, 2012
what's next?
Hi loves...
I've been waiting to post until I knew what was next for my treatment, but honestly, I still don't know. It's been a frustrating couple of weeks. My surgeon, as I mentioned before, is really pushing for external beam radiation. He doesn't feel that radioactive iodine would take up well enough because of the amount of scar tissue present. We met with him on the 8th and had me all but completely convinced to do external radiation. My next step was to meet with me endocrinologist at the Seattle Cancer Care Alliance.
Jesse and I came to that appointment on the 11th prepared to discussed the risks and benefits of external radiation and ready to make a decision to go forward with it...but instead our doctor threw us for a loop. Instead, he made it clear that he feels that external beam radiation would have no benefits. He assured me that the "vast majority" of those patients end up with a feeding tube. This was a new risk that we hadn't been informed of yet, and one far more concerning to me than some hair loss or an intensely sore throat. We learned quickly that he had some records from my surgeon but hadn't discussed anything with him at all. I was angry and confused that I have two supposed "experts" who are recommending completely different treatment, and besides that, saying that the other treatment would do no good. And either my surgeon was omitting some very serious side effects of the treatment, or my endocrinologist was trying to scare me out of it. Who to trust? The surgeon, who has been inside of my neck and seen the cancer with his own eyes, or my endocrinologist, a supposedly "famous" expert in the treatment of thyroid cancer. I expressed my feelings of confusion and my endocrinologist agreed to phone my surgeon so they could come to a mutually agreeable recommendation for treatment. Unfortunately my surgeon was on vacation last week, so they are planning to confer this week.
In the midst of all of the confusion, I decided I had to gather more information. Third, forth, maybe even a fifth opinion. Last week Jesse and I met with a fantastic radiation oncologist at Evergreen Hospital. I may have gotten a little "VIP" treatment here - hey, it pays to know people who know people :) This doctor spent over an hour with us in a conference room, starting at the very beginning. As Jesse noted, this doc knew my history better than any of my other docs. He was obviously very, very thorough. Thankfully, he said he's never had a patient who ended up with a feeding tube from radiation for thyroid cancer (and he's been doing this for over 20 years). He said about a third of patients end up with IV fluids to prevent dehydration, but to me, an IV is pretty insignificant compared to a feeding tube. The biggest risk he is concerned about is the potential for a future cancer. And since I'm planning to live a long, long time, this is a big concern for me. He feels that the right direction to go would be a radioactive iodine scan to see if the cancer will take it up, and then a radioactive iodine treatment if it will. He then recommends an MRI every three months to watch closely that this cancer doesn't return. Whereas my surgeon felt I needed treatment within a month or risk damage to my nerve, the radiation doctor felt that with those frequent scans we'd have time to catch the cancer before it did any damage. The radiation doc said that there really just aren't any studies for my scenario - and that's why I'm getting such conflicting recommendations.
So, honestly, I really don't know what my next step will be. I'm waiting to hear what my surgeon and endocrinologist agree on. I'd prefer the "wait and watch" approach - but the radiation onc said this really isn't an option. Therefore, even though the prep and diet for the radioactive iodine is horrendous, and the treatment itself caused severe nausea, I feel that it's less invasive than the external radiation and I'd definitely be more inclined to go this route - and hope that it works.
I'm very confused as to why my endocrinologist would tell me this apparent lie about a feeding tube with radiation, and wondering if I should find a new doctor. But, I'm tired of starting over again with a new doctor who has to learn my history. It's so hard to find a good endocrinologist - there just aren't many of them. Those who are immersed in all of the research aren't always the best with patients. And, I'm not just a number in a study - I'm a person. It's also so annoying to have records at three different hospitals - the Cancer Care Alliance, the UW hospital, and Virginia Mason. And trying to keep track of the bills from all three.
Thank you so, so much to those of you who have donated to my cancer fund. It helps so much with the bills and all of the work I've had to miss. I really couldn't get through it all without your support.
I'll post an update when I know more...
In the meantime, a few photos from our perfect, simple wedding!
xoxo,
Lisa
I've been waiting to post until I knew what was next for my treatment, but honestly, I still don't know. It's been a frustrating couple of weeks. My surgeon, as I mentioned before, is really pushing for external beam radiation. He doesn't feel that radioactive iodine would take up well enough because of the amount of scar tissue present. We met with him on the 8th and had me all but completely convinced to do external radiation. My next step was to meet with me endocrinologist at the Seattle Cancer Care Alliance.
Jesse and I came to that appointment on the 11th prepared to discussed the risks and benefits of external radiation and ready to make a decision to go forward with it...but instead our doctor threw us for a loop. Instead, he made it clear that he feels that external beam radiation would have no benefits. He assured me that the "vast majority" of those patients end up with a feeding tube. This was a new risk that we hadn't been informed of yet, and one far more concerning to me than some hair loss or an intensely sore throat. We learned quickly that he had some records from my surgeon but hadn't discussed anything with him at all. I was angry and confused that I have two supposed "experts" who are recommending completely different treatment, and besides that, saying that the other treatment would do no good. And either my surgeon was omitting some very serious side effects of the treatment, or my endocrinologist was trying to scare me out of it. Who to trust? The surgeon, who has been inside of my neck and seen the cancer with his own eyes, or my endocrinologist, a supposedly "famous" expert in the treatment of thyroid cancer. I expressed my feelings of confusion and my endocrinologist agreed to phone my surgeon so they could come to a mutually agreeable recommendation for treatment. Unfortunately my surgeon was on vacation last week, so they are planning to confer this week.
In the midst of all of the confusion, I decided I had to gather more information. Third, forth, maybe even a fifth opinion. Last week Jesse and I met with a fantastic radiation oncologist at Evergreen Hospital. I may have gotten a little "VIP" treatment here - hey, it pays to know people who know people :) This doctor spent over an hour with us in a conference room, starting at the very beginning. As Jesse noted, this doc knew my history better than any of my other docs. He was obviously very, very thorough. Thankfully, he said he's never had a patient who ended up with a feeding tube from radiation for thyroid cancer (and he's been doing this for over 20 years). He said about a third of patients end up with IV fluids to prevent dehydration, but to me, an IV is pretty insignificant compared to a feeding tube. The biggest risk he is concerned about is the potential for a future cancer. And since I'm planning to live a long, long time, this is a big concern for me. He feels that the right direction to go would be a radioactive iodine scan to see if the cancer will take it up, and then a radioactive iodine treatment if it will. He then recommends an MRI every three months to watch closely that this cancer doesn't return. Whereas my surgeon felt I needed treatment within a month or risk damage to my nerve, the radiation doctor felt that with those frequent scans we'd have time to catch the cancer before it did any damage. The radiation doc said that there really just aren't any studies for my scenario - and that's why I'm getting such conflicting recommendations.
So, honestly, I really don't know what my next step will be. I'm waiting to hear what my surgeon and endocrinologist agree on. I'd prefer the "wait and watch" approach - but the radiation onc said this really isn't an option. Therefore, even though the prep and diet for the radioactive iodine is horrendous, and the treatment itself caused severe nausea, I feel that it's less invasive than the external radiation and I'd definitely be more inclined to go this route - and hope that it works.
I'm very confused as to why my endocrinologist would tell me this apparent lie about a feeding tube with radiation, and wondering if I should find a new doctor. But, I'm tired of starting over again with a new doctor who has to learn my history. It's so hard to find a good endocrinologist - there just aren't many of them. Those who are immersed in all of the research aren't always the best with patients. And, I'm not just a number in a study - I'm a person. It's also so annoying to have records at three different hospitals - the Cancer Care Alliance, the UW hospital, and Virginia Mason. And trying to keep track of the bills from all three.
Thank you so, so much to those of you who have donated to my cancer fund. It helps so much with the bills and all of the work I've had to miss. I really couldn't get through it all without your support.
I'll post an update when I know more...
In the meantime, a few photos from our perfect, simple wedding!
xoxo,
Lisa
Wednesday, May 2, 2012
Surgery
Hello, loves.
What day is it? Everything seems to be running together since my surgery on Monday. I've mostly been sleeping (a lot!). It amazes me that I can possibly sleep this much. It takes a lot of energy for the body to heal itself.
My body surprised me by springing back quickly after surgery; I was ready to leave the hospital less than an hour after coming out of surgery. There was significant pain, but I was much less groggy than last year and my throat was less sore and I was able to swallow easier. As a whole, the experience was much better than last year's surgery. My anesthesiologist and nurses were fabulous and I felt well cared for and not scared throughout the whole procedure.
Unfortunately, my surgeon didn't find what he was expecting inside my neck. From the scans it seemed like the tumor was a cancerous lymph node, but instead the doctor found a new tumor that was much more aggressive than thought. It already had tendrils wrapped around my laryngeal nerve. As evidenced by my ability to still talk now, he didn't damage the nerve, but it also meant he wasn't able to dissect out as much as he would have liked. Because of the aggressiveness of this cancer, my surgeon is recommending external beam radiation within a month in addition to the radioactive iodine treatment. This is a lot for me to think about, because of the serious effects that external radiation can have (permanent loss of my hair & voice, other types cancer). But for now I will take recovery just one day at a time, and not focus my energy on any decisions at this point.
That's the quick update, but I wanted to share it with you all because I know you were wondering. I'm going back to bed now...goodnight :)
xoxo,
Lisa
What day is it? Everything seems to be running together since my surgery on Monday. I've mostly been sleeping (a lot!). It amazes me that I can possibly sleep this much. It takes a lot of energy for the body to heal itself.
My body surprised me by springing back quickly after surgery; I was ready to leave the hospital less than an hour after coming out of surgery. There was significant pain, but I was much less groggy than last year and my throat was less sore and I was able to swallow easier. As a whole, the experience was much better than last year's surgery. My anesthesiologist and nurses were fabulous and I felt well cared for and not scared throughout the whole procedure.
Unfortunately, my surgeon didn't find what he was expecting inside my neck. From the scans it seemed like the tumor was a cancerous lymph node, but instead the doctor found a new tumor that was much more aggressive than thought. It already had tendrils wrapped around my laryngeal nerve. As evidenced by my ability to still talk now, he didn't damage the nerve, but it also meant he wasn't able to dissect out as much as he would have liked. Because of the aggressiveness of this cancer, my surgeon is recommending external beam radiation within a month in addition to the radioactive iodine treatment. This is a lot for me to think about, because of the serious effects that external radiation can have (permanent loss of my hair & voice, other types cancer). But for now I will take recovery just one day at a time, and not focus my energy on any decisions at this point.
That's the quick update, but I wanted to share it with you all because I know you were wondering. I'm going back to bed now...goodnight :)
xoxo,
Lisa
Wednesday, April 18, 2012
Marriage
Hi, loves! I just got home after a massage to ease my knotted neck muscles that have been torturing me for the past week. My massage therapist worked her magic and I feel better already.
I have some more amazing news... I got to marry the love of my life on April 5, barefoot on the beach at Las Caletas, Mexico. It was the most perfect, stress-free, intimate ceremony I could ever have imagined. The wedding planner took care of everything and all we had to do was show up for the boat ride to our beach. Coral rose petals scattered the aisle that I walked down. I wore two white lilies in my hair, and carried a bouquet of the roses and lilies. During the ceremony Jesse and I surprised each other with our vows we wrote ourselves. Our dearest friend, Jamie, came with us and filmed the special day. We had a professional photographer as well, and it will take about a month to get our photos back. I can't wait to get them and share them. We will have a reception in Friday Harbor in September to celebrate with our friends and family.
Our return home has been full of joy as we share the news with everyone. I'm so excited to get to call Jesse my husband and become a family. I'm also grateful to have him by my side as we go through this next phase of cancer treatment.
I met with my surgeon yesterday and we have scheduled my surgery for April 30th. It seems so soon, but I guess that means I can move on with life that much sooner. He sent me to get a CT scan after my appointment yesterday to make sure that there aren't any other tumors he'll need to take out during the surgery. I felt like an old pro during the IV insertion and scan. I can tell you exactly which vein to use; I know exactly when to swallow (or not) and when to hold my breath (or breathe).
Recovery from surgery last year wasn't too bad. I was very tired for the first few weeks but the pain was manageable. The fear I have is of the risks of operating on the precious area that is my neck - around the life source, my carotid; around the voice box, my larynx; around my calcium regulators, my parathyroids. And I have flashbacks to coming out of surgery last year and the panicky feeling of not being able to breathe as the oxygen mask was pushed onto my face (for some reason my oxygen saturation was dropping) and the nurse who kept yelling at me not to cross my legs or I would get a blood clot (but the position I was in was very uncomfortable for my back!) and not being able to see anything because my glasses were with my family (I'm rather blind without my contacts in!). But this time around I'll know what to expect and try to remember to remain calm through my first moments of waking up. On the bright side, my surgeon promised to fix my scar with this surgery because it hasn't healed very well in the front. He also was very reassuring that he operates around the carotid all the time, which made me feel enormously better.
I also returned home to a stack of 8 hospital bills. Now that it's a new year, it means a new deductible (and out-of-pocket limit) to reach. It's frustrating that it starts all over again. When I start my new job in July I will have much better insurance, but putting off treatment until then is not an option. The tumor isn't going to go away on it's own. I really, really appreciate the financial help I received from you donors last year, and anyone who wishes to donate again, it would be very much appreciated. I hate asking for help, but it's overwhelming right now to see how fast the treatment cost adds up, and how enormously expensive each procedure is.
Much love to all of my friends and family... I can't wait to share my wedding photos with you.
xoxo,
Lisa
I have some more amazing news... I got to marry the love of my life on April 5, barefoot on the beach at Las Caletas, Mexico. It was the most perfect, stress-free, intimate ceremony I could ever have imagined. The wedding planner took care of everything and all we had to do was show up for the boat ride to our beach. Coral rose petals scattered the aisle that I walked down. I wore two white lilies in my hair, and carried a bouquet of the roses and lilies. During the ceremony Jesse and I surprised each other with our vows we wrote ourselves. Our dearest friend, Jamie, came with us and filmed the special day. We had a professional photographer as well, and it will take about a month to get our photos back. I can't wait to get them and share them. We will have a reception in Friday Harbor in September to celebrate with our friends and family.
Our return home has been full of joy as we share the news with everyone. I'm so excited to get to call Jesse my husband and become a family. I'm also grateful to have him by my side as we go through this next phase of cancer treatment.
I met with my surgeon yesterday and we have scheduled my surgery for April 30th. It seems so soon, but I guess that means I can move on with life that much sooner. He sent me to get a CT scan after my appointment yesterday to make sure that there aren't any other tumors he'll need to take out during the surgery. I felt like an old pro during the IV insertion and scan. I can tell you exactly which vein to use; I know exactly when to swallow (or not) and when to hold my breath (or breathe).
Recovery from surgery last year wasn't too bad. I was very tired for the first few weeks but the pain was manageable. The fear I have is of the risks of operating on the precious area that is my neck - around the life source, my carotid; around the voice box, my larynx; around my calcium regulators, my parathyroids. And I have flashbacks to coming out of surgery last year and the panicky feeling of not being able to breathe as the oxygen mask was pushed onto my face (for some reason my oxygen saturation was dropping) and the nurse who kept yelling at me not to cross my legs or I would get a blood clot (but the position I was in was very uncomfortable for my back!) and not being able to see anything because my glasses were with my family (I'm rather blind without my contacts in!). But this time around I'll know what to expect and try to remember to remain calm through my first moments of waking up. On the bright side, my surgeon promised to fix my scar with this surgery because it hasn't healed very well in the front. He also was very reassuring that he operates around the carotid all the time, which made me feel enormously better.
I also returned home to a stack of 8 hospital bills. Now that it's a new year, it means a new deductible (and out-of-pocket limit) to reach. It's frustrating that it starts all over again. When I start my new job in July I will have much better insurance, but putting off treatment until then is not an option. The tumor isn't going to go away on it's own. I really, really appreciate the financial help I received from you donors last year, and anyone who wishes to donate again, it would be very much appreciated. I hate asking for help, but it's overwhelming right now to see how fast the treatment cost adds up, and how enormously expensive each procedure is.
Much love to all of my friends and family... I can't wait to share my wedding photos with you.
xoxo,
Lisa
Sunday, April 1, 2012
Results
Sorry it has taken me a few days before I could write this, I had a lot of processing to do and also I've been busy getting ready to go to Mexico!
My biopsy came back positive for more cancer. Like I mentioned in my last post, this means more surgery, another radioactive iodine scan, and possibly more radioactive iodine treatment. I'm disappointed and frustrated but I'm trying to remain positive. We knew that the recurrence rate for this type of cancer was high, and my thyroglobulin never got below 0.9 so we knew that there was always some cancer remaining in my body. However, I know I can get through this all again with the incredible support system I have!
I have a consult set up with my surgeon at Virginia Mason on April 17. He is only in on Tuesdays and since I'll be in Mexico for the next two Tuesdays and I'm not about to change my vacation, I'll wait until the following Tuesday. This is the same surgeon who did my thyroidectomy and dissection last year, and I really trust him.
The biopsy was a terrible experience because the tumor is behind my carotid artery and they couldn't figure out how they were going to get to it. I was lying on their table, all prepped, while the doctors argued about how to get around the carotid and to the tumor. They had to decide the route they were going to take before they gave me my IV sedation. The attending warned that if they hit the jugular they could probably stop the bleeding, but it would be bad if they hit my carotid. I nearly jumped off the table and said to forget the biopsy - I would rather not bleed out on their table! But I had an IV in my arm and decided I'd rather just get this over with and trust that with ultrasound guidance they would be able to pass by the artery. They were considering aborting the procedure and asked me accusingly who authorized the biopsy. I was livid because they had the ultrasound report and could see for themselves what they were here to do but obviously they hadn't read it before prepping me. Finally they were able to put enough pressure on my neck to separate the veins and get to the tumor, and at last gave me my IV sedation, and the procedure was over before I knew it and I was safely on my way to recovery.
Knowing the challenge they had in getting to the tumor with the biopsy makes me nervous for the surgery, but I really trust my surgeon. After my consult I will know more about what to expect and schedule my surgery date.
Now, off to Puerto Vallarta for some sunshine and relaxation, and all the margaritas I can drink! I'll be back on the 11th.
xoxo,
Lisa
My biopsy came back positive for more cancer. Like I mentioned in my last post, this means more surgery, another radioactive iodine scan, and possibly more radioactive iodine treatment. I'm disappointed and frustrated but I'm trying to remain positive. We knew that the recurrence rate for this type of cancer was high, and my thyroglobulin never got below 0.9 so we knew that there was always some cancer remaining in my body. However, I know I can get through this all again with the incredible support system I have!
I have a consult set up with my surgeon at Virginia Mason on April 17. He is only in on Tuesdays and since I'll be in Mexico for the next two Tuesdays and I'm not about to change my vacation, I'll wait until the following Tuesday. This is the same surgeon who did my thyroidectomy and dissection last year, and I really trust him.
The biopsy was a terrible experience because the tumor is behind my carotid artery and they couldn't figure out how they were going to get to it. I was lying on their table, all prepped, while the doctors argued about how to get around the carotid and to the tumor. They had to decide the route they were going to take before they gave me my IV sedation. The attending warned that if they hit the jugular they could probably stop the bleeding, but it would be bad if they hit my carotid. I nearly jumped off the table and said to forget the biopsy - I would rather not bleed out on their table! But I had an IV in my arm and decided I'd rather just get this over with and trust that with ultrasound guidance they would be able to pass by the artery. They were considering aborting the procedure and asked me accusingly who authorized the biopsy. I was livid because they had the ultrasound report and could see for themselves what they were here to do but obviously they hadn't read it before prepping me. Finally they were able to put enough pressure on my neck to separate the veins and get to the tumor, and at last gave me my IV sedation, and the procedure was over before I knew it and I was safely on my way to recovery.
Knowing the challenge they had in getting to the tumor with the biopsy makes me nervous for the surgery, but I really trust my surgeon. After my consult I will know more about what to expect and schedule my surgery date.
Now, off to Puerto Vallarta for some sunshine and relaxation, and all the margaritas I can drink! I'll be back on the 11th.
xoxo,
Lisa
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