In the past, I have sunk into depressions when challenges have come my way, maybe primarily because I concentrate so hard on my own woes during times of trial that I can’t see anything else. This time around, God has me looking outside myself and He’s reminding me every day that there are people who have it way worse than I do, that others still need me, that I can make a positive impact on this world, and that life shouldn’t stop because somebody has to have surgery. There are baseball banquets to organize, end-of-school-year activities to get involved with, people celebrating 10 years of marriage who really could use a dinner alone and don’t have a babysitter, old people who need love, kids who need help with their homework, teachers who need help in the classroom before Open House on May 22…… the list goes on and on.
I’m getting involved.
Thanks to God’s guidance, this has been my way of responding to the fact that I need more surgery and still have thyroid tissue (probably cancer) in my neck: Life is meant to be lived. “Carpe diem,” as the movie Dead Poets’ Society said. And I keep thinking of that line in The Shawshank Redemption—“Get busy living, or get busy dying.”
I’ll take “get busy living,” thank you very much.
Wednesday, April 29, 2009
Tuesday, April 28, 2009
What's That on The Dining Room Table?
My thyroid cancer is sitting on my dining room table. Yesterday Jack and I drove to Fountain Valley Regional Hospital and picked up a nondescript 13” by 10” envelope from the pathology department containing 10 paraffin “blocks.” The blocks of wax contain the specimens removed from my neck on February 21, 2008, during my lumpectomy-turned-lobectomy-turned-near-total-thyroidectomy. They are kind of gross and totally fascinating.
Pommy doesn’t want to see them. Last night after dinner, he politely declined when I asked him if he wanted to look in the envelope. (Hmmm… maybe right after dinner wasn’t the best time to suggest a thyroid cancer tissue viewing.) I’m not offering to let Jack see them, and he hasn’t asked. He’s only 8 years old, and I think that’s too gross for him.
Since my diagnosis some 14 months ago, I’ve wondered if I should pursue a second opinion of the pathology from the original surgery. Lately I’ve felt with more clarity that I should get a second opinion. With everything lately, I have a clarity of purpose and a decisiveness that has been lacking most of my life, but even more lacking in the last few years.
God has been telling me to wait for the pathology report from this Thursday’s biopsy (technically a fine-needle aspiration or FNA) to decide whether to pursue a second opinion of the original pathology and diagnosis. If the pathology from the FNA says straight papillary carcinoma with no variants (some of the variants of papillary are follicular, Hurthle cell, tall cell, columnar, insular, etc.), I think I’ll skip the second opinion on the original pathology. As a very dear virtual friend of mine recently said via e-mail, “Quite honestly, it seems to me to be more important to know what you have rather than what you had, though I certainly understand the desire to know. On the other hand ...while it is likely that whatever variant may show up in this FNA would probably be the same as your original cancer, it might also not be. I think I would wait to see what the upcoming FNA shows, and take it from there. If this one is also malignant and straight papillary, I would probably let it go at that. Unless you find yourself thinking about it a lot, in which case it's worth the price just to put the matter to rest.” This gal is someone I “met” via the thyroid cancer listserv I’ve been frequenting over the past 16 months. This is where I’ve gotten a lot of my information on thyroid cancer itself, treatment protocols, endocrinologists, and a lot of other guidance, too.
Anyway, I had been thinking about waiting for the biopsy results, and God had been pointing me that direction, too. There are a lot of “on the other hand”s, but the fact remains that I need to deal with what I know, and I know that Irvine Regional Hospital doesn’t have any reputation—good or bad--as far as thyroid cancer pathology, and it can be a very specialized diagnosis. If you don’t know what you’re looking for, you could miss some characteristics that would deem the cancer a variant of straight papillary thyroid carcinoma, and having a variant of papillary thyroid carcinoma sometimes changes the course of treatment. Sometimes it changes the course of treatment dramatically.
The Good Cancer? Um, Not So Much
Papillary thyroid carcinoma is known as a slow-growing, fairly “good cancer,” a misnomer that most people diagnosed with the disease resent. Although they might not mind the phrase “good cancer” when they’re diagnosed (let’s face it—it’s sort of comforting!) most thycans eventually come to dislike it.
It’s ironic to note that lots of us also inadvertently perpetuate that “good cancer” label in the beginning (I sure did) because we don’t want family and friends to worry about us. I remember telling people right after my diagnosis, “Don’t worry—if you’re going to get cancer, this is the one to get” and I also told people what my ENT/otolaryngologist had said to me: ‘If God called me and said “I have to give your mother cancer; which one do you want Me to give her?” this is the one I would give her.’ After I told people about my diagnosis, these well-meaning words definitely seemed to make people feel better about my prognosis, and they made me feel better about the whole thing, too.
But being typically slow-growing and thyca patients typically having a good prognosis does not a good cancer make. I’ve come to see that there really is no such thing as a good cancer. It’s an oxymoron—the terms are mutually exclusive.
Surgeons, endocrinologists (the endocrine specialists who treat and follow thyroid cancer patients after diagnosis and for the rest of their lives) and primary care physicians are wont to pat us thycans on the head after diagnosis and tell us “You’ll be fine [my oncologist for 7 months]. You have the good cancer [my ENT/otolaryngologist, who originally sent me for an ultrasound of the lump on the middle of my neck]. You’ll live 50 more years [the surgeon who performed my original thyroidectomy].”
I don’t harbor any bitterness toward two of the three doctors I quote in the previous paragraph. I do have some residual anger at the oncologist I saw for 7 months, who initially said he could handle my case but in the end said he was out of his depth and referred me to some bozo endocrinologist that my own primary care physician had already warned me “doesn’t know what he’s doing.” I still have a little anger toward this particular doctor because once he made me wait an hour and a half in the waiting room, an additional half-hour in the examination room, and then he came in, let me talk for a minute or two, excused himself for 20 minutes to take another patient’s phone call (I heard him on the phone right outside the exam room door), and then when he came back in to let me finish telling him how bad I was feeling on the lower dose of Synthroid he had prescribed, he promptly fired himself from my case, saying that he thought he could handle my follow-up but that he could not.
This was the same doctor who, during a previous office visit, had patted me on the leg and said “How cute” about the fact that I kept well-organized copies of all my thyca-related medical records in a binder, which I brought with me to all my appointments.
To take ownership of that failed doctor-patient relationship, though, I have to admit that when I took him as my doctor, I had done enough research to know that endocrinologists, not oncologists, typically treat and provide follow-up care for thyroid cancer patients. I had gone to the oncologist out of sheer desperation after my original endocrinologist had not provided adequate or informed care. I was a little rushed trying to find a new endocrinologist, and in my haste, I thought an oncologist might be a better fit. Now, many months later, many doctors’ appointments later, and at least $650 in out-of-pocket expenses for an out-of-network second opinion later, I finally have an endocrinologist who knows as much as I do (possibly even more than I do) about thyroid cancer.
No surprise here: God led me to my new endocrinologist.
Variants of Papillary Carcinoma
Papillary with a follicular variant
Hurthle Cell
Tall Cell
Columnar
Insular
Warthin
Pommy doesn’t want to see them. Last night after dinner, he politely declined when I asked him if he wanted to look in the envelope. (Hmmm… maybe right after dinner wasn’t the best time to suggest a thyroid cancer tissue viewing.) I’m not offering to let Jack see them, and he hasn’t asked. He’s only 8 years old, and I think that’s too gross for him.
Since my diagnosis some 14 months ago, I’ve wondered if I should pursue a second opinion of the pathology from the original surgery. Lately I’ve felt with more clarity that I should get a second opinion. With everything lately, I have a clarity of purpose and a decisiveness that has been lacking most of my life, but even more lacking in the last few years.
God has been telling me to wait for the pathology report from this Thursday’s biopsy (technically a fine-needle aspiration or FNA) to decide whether to pursue a second opinion of the original pathology and diagnosis. If the pathology from the FNA says straight papillary carcinoma with no variants (some of the variants of papillary are follicular, Hurthle cell, tall cell, columnar, insular, etc.), I think I’ll skip the second opinion on the original pathology. As a very dear virtual friend of mine recently said via e-mail, “Quite honestly, it seems to me to be more important to know what you have rather than what you had, though I certainly understand the desire to know. On the other hand ...while it is likely that whatever variant may show up in this FNA would probably be the same as your original cancer, it might also not be. I think I would wait to see what the upcoming FNA shows, and take it from there. If this one is also malignant and straight papillary, I would probably let it go at that. Unless you find yourself thinking about it a lot, in which case it's worth the price just to put the matter to rest.” This gal is someone I “met” via the thyroid cancer listserv I’ve been frequenting over the past 16 months. This is where I’ve gotten a lot of my information on thyroid cancer itself, treatment protocols, endocrinologists, and a lot of other guidance, too.
Anyway, I had been thinking about waiting for the biopsy results, and God had been pointing me that direction, too. There are a lot of “on the other hand”s, but the fact remains that I need to deal with what I know, and I know that Irvine Regional Hospital doesn’t have any reputation—good or bad--as far as thyroid cancer pathology, and it can be a very specialized diagnosis. If you don’t know what you’re looking for, you could miss some characteristics that would deem the cancer a variant of straight papillary thyroid carcinoma, and having a variant of papillary thyroid carcinoma sometimes changes the course of treatment. Sometimes it changes the course of treatment dramatically.
The Good Cancer? Um, Not So Much
Papillary thyroid carcinoma is known as a slow-growing, fairly “good cancer,” a misnomer that most people diagnosed with the disease resent. Although they might not mind the phrase “good cancer” when they’re diagnosed (let’s face it—it’s sort of comforting!) most thycans eventually come to dislike it.
It’s ironic to note that lots of us also inadvertently perpetuate that “good cancer” label in the beginning (I sure did) because we don’t want family and friends to worry about us. I remember telling people right after my diagnosis, “Don’t worry—if you’re going to get cancer, this is the one to get” and I also told people what my ENT/otolaryngologist had said to me: ‘If God called me and said “I have to give your mother cancer; which one do you want Me to give her?” this is the one I would give her.’ After I told people about my diagnosis, these well-meaning words definitely seemed to make people feel better about my prognosis, and they made me feel better about the whole thing, too.
But being typically slow-growing and thyca patients typically having a good prognosis does not a good cancer make. I’ve come to see that there really is no such thing as a good cancer. It’s an oxymoron—the terms are mutually exclusive.
Surgeons, endocrinologists (the endocrine specialists who treat and follow thyroid cancer patients after diagnosis and for the rest of their lives) and primary care physicians are wont to pat us thycans on the head after diagnosis and tell us “You’ll be fine [my oncologist for 7 months]. You have the good cancer [my ENT/otolaryngologist, who originally sent me for an ultrasound of the lump on the middle of my neck]. You’ll live 50 more years [the surgeon who performed my original thyroidectomy].”
I don’t harbor any bitterness toward two of the three doctors I quote in the previous paragraph. I do have some residual anger at the oncologist I saw for 7 months, who initially said he could handle my case but in the end said he was out of his depth and referred me to some bozo endocrinologist that my own primary care physician had already warned me “doesn’t know what he’s doing.” I still have a little anger toward this particular doctor because once he made me wait an hour and a half in the waiting room, an additional half-hour in the examination room, and then he came in, let me talk for a minute or two, excused himself for 20 minutes to take another patient’s phone call (I heard him on the phone right outside the exam room door), and then when he came back in to let me finish telling him how bad I was feeling on the lower dose of Synthroid he had prescribed, he promptly fired himself from my case, saying that he thought he could handle my follow-up but that he could not.
This was the same doctor who, during a previous office visit, had patted me on the leg and said “How cute” about the fact that I kept well-organized copies of all my thyca-related medical records in a binder, which I brought with me to all my appointments.
To take ownership of that failed doctor-patient relationship, though, I have to admit that when I took him as my doctor, I had done enough research to know that endocrinologists, not oncologists, typically treat and provide follow-up care for thyroid cancer patients. I had gone to the oncologist out of sheer desperation after my original endocrinologist had not provided adequate or informed care. I was a little rushed trying to find a new endocrinologist, and in my haste, I thought an oncologist might be a better fit. Now, many months later, many doctors’ appointments later, and at least $650 in out-of-pocket expenses for an out-of-network second opinion later, I finally have an endocrinologist who knows as much as I do (possibly even more than I do) about thyroid cancer.
No surprise here: God led me to my new endocrinologist.
Variants of Papillary Carcinoma
Papillary with a follicular variant
Hurthle Cell
Tall Cell
Columnar
Insular
Warthin
Monday, April 27, 2009
Words...And Voices
This morning on my way back from dropping Brendan off at Woodbridge High School, I was struck by the overwhelming urge to stop by my parents’ house and apologize again for what a terrible, mean, hostile, aggressive teenager I was…and for all the trauma and sorrow I put them through even when I was a young adult and should have known better.
I considered driving by, going on to our house in Tustin, but my eyes filled with tears for the first time in weeks (being off Synthroid has made me less emotional and less prone to crying…a good thing), and I put my blinker on to make a right on Poplar to enter my parents’ neighborhood.
My dad was out golfing, but my mom was there, opening the door to me in her usual kitty T-shirt and shorts, getting ready to take her dog Rocky for a walk. She let me in and we talked a while. I apologized again for all the crap I put her and my dad through, as a teenager and a twentysomething. She was sweet and hugged me and told me I was forgiven. I also told her I was sorry for being so harsh, so critical in the past (I don’t think I used the word “critical,” although I should have), and that God was working on me, and I was tired of being that way.
It felt good to apologize.
On my way home from my parents’ house, thinking about what to do today (on my short list was possibly running, writing, going grocery shopping, to Target and/or cleaning parts of the house), I said to God, “My day is yours. Direct me.” So here I am writing again. This is now page 20, although I’m sure that will change as I write more, revise, reorganize, etc. Page 20 out of I-don’t-know-how-many pages. I’m giving that to God, too.
Voice Concerns
As I’ve mentioned, I have always loved singing, and in the past few years, I’ve discovered the joy of singing in the choir at my church. Thyroidectomy and any neck surgery runs the risk of damaging one or both vocal chords, and I was lucky enough to have no damage from the surgery last year. Although my voice was weaker for several weeks after the surgery, I have been able to sing pretty normally (as “normally” as I could sing before the operation, anyway—hardy har har) since then.
Lately I have heard God’s voice telling me that if my voice is not the same after my upcoming surgery, it’s His will. He’s telling me that my voice can continue on paper—here—and that I can still proclaim His faithful service to me, that I can still tell anyone and everyone who will listen about how awesome MY GOD is. I might not always be able to do that through song, or with my voice, but if that is His will for me, I’ll still be able to communicate my personal experience of His glory on paper.
I love words. Sung, spoken, written--whatever. Words are so valuable.
I considered driving by, going on to our house in Tustin, but my eyes filled with tears for the first time in weeks (being off Synthroid has made me less emotional and less prone to crying…a good thing), and I put my blinker on to make a right on Poplar to enter my parents’ neighborhood.
My dad was out golfing, but my mom was there, opening the door to me in her usual kitty T-shirt and shorts, getting ready to take her dog Rocky for a walk. She let me in and we talked a while. I apologized again for all the crap I put her and my dad through, as a teenager and a twentysomething. She was sweet and hugged me and told me I was forgiven. I also told her I was sorry for being so harsh, so critical in the past (I don’t think I used the word “critical,” although I should have), and that God was working on me, and I was tired of being that way.
It felt good to apologize.
On my way home from my parents’ house, thinking about what to do today (on my short list was possibly running, writing, going grocery shopping, to Target and/or cleaning parts of the house), I said to God, “My day is yours. Direct me.” So here I am writing again. This is now page 20, although I’m sure that will change as I write more, revise, reorganize, etc. Page 20 out of I-don’t-know-how-many pages. I’m giving that to God, too.
Voice Concerns
As I’ve mentioned, I have always loved singing, and in the past few years, I’ve discovered the joy of singing in the choir at my church. Thyroidectomy and any neck surgery runs the risk of damaging one or both vocal chords, and I was lucky enough to have no damage from the surgery last year. Although my voice was weaker for several weeks after the surgery, I have been able to sing pretty normally (as “normally” as I could sing before the operation, anyway—hardy har har) since then.
Lately I have heard God’s voice telling me that if my voice is not the same after my upcoming surgery, it’s His will. He’s telling me that my voice can continue on paper—here—and that I can still proclaim His faithful service to me, that I can still tell anyone and everyone who will listen about how awesome MY GOD is. I might not always be able to do that through song, or with my voice, but if that is His will for me, I’ll still be able to communicate my personal experience of His glory on paper.
I love words. Sung, spoken, written--whatever. Words are so valuable.
Sunday, April 26, 2009
The Kids and Believing in God
I am calmer still, and able to breathe through my nose still and pooping regularly still and feeling better physically than I have in a long, long time. My stomach feels flatter (I lost 2-3 pounds on the LID), and I have more energy. I’m falling asleep at night at about 8-9 pm, but I’m also waking up earlier bright-eyed and bushy-tailed. For instance, this morning I got up at 6:30 and feel totally alert and awake. I did go to bed last night at 9 pm, and I did wake up for an hour and a half around 3 am, but still, I’m feeling very good and super energetic during the day. Yesterday I did several loads of laundry, did the MS Walk, took Brendan to Wild Rivers interviews, made lunches and dinner, did some gardening and vacuumed the entire house, laminate floors included. It was my eighth day back on Synthroid after being off it for 29 days.
On the way home from church this morning with Brendan and Jack in the car, I told them that when I was young, I believed in God because I was raised to believe in God, that when I was older—a young adult—I believed in God because it was habit, but that now I believed in God because I know He’s real and He’s proving it to me everyday. I told them that God was showing me things about Himself and giving me evidence of His existence every day since my thyroid cancer diagnosis, and I even told them I was writing a book about how God is making Himself known to me through my cancer. (I joked it was only a pamphlet right now, and Brendan laughed.) Brendan asked, “Are you going to publish it?” and I said, “Oh, I don’t know. I’m just writing it so I’ll have something to look back on and remind me how awesome God was to me through this time, and I want to have something for you and Jack to read to tell you what God has done for me. I don’t want to forget this.”
Turns out Brendan is agnostic. In the same conversation in the car, Jack asked Brendan if he believed in God, and he said something along the lines of, “I don’t know if you can know whether or not there’s a God.” I’m not shocked. I think I would have said I was agnostic when I was a teenager, too. You’re way too skeptical to take things at face value when you’re a teenager. Plus, you think you know it all, and nobody can tell you anything. And I appreciated Brendan’s honesty, even though it’s not what I want for him. At least now I know where he stands—or at least where he says he stands. You know all that teenage bravado can mask true feelings. I have faith that God has been working on Brendan and will continue to work on Brendan forever. But now I know I need to begin praying earnestly for Brendan to come to know Jesus as I have.
On the way home from church this morning with Brendan and Jack in the car, I told them that when I was young, I believed in God because I was raised to believe in God, that when I was older—a young adult—I believed in God because it was habit, but that now I believed in God because I know He’s real and He’s proving it to me everyday. I told them that God was showing me things about Himself and giving me evidence of His existence every day since my thyroid cancer diagnosis, and I even told them I was writing a book about how God is making Himself known to me through my cancer. (I joked it was only a pamphlet right now, and Brendan laughed.) Brendan asked, “Are you going to publish it?” and I said, “Oh, I don’t know. I’m just writing it so I’ll have something to look back on and remind me how awesome God was to me through this time, and I want to have something for you and Jack to read to tell you what God has done for me. I don’t want to forget this.”
Turns out Brendan is agnostic. In the same conversation in the car, Jack asked Brendan if he believed in God, and he said something along the lines of, “I don’t know if you can know whether or not there’s a God.” I’m not shocked. I think I would have said I was agnostic when I was a teenager, too. You’re way too skeptical to take things at face value when you’re a teenager. Plus, you think you know it all, and nobody can tell you anything. And I appreciated Brendan’s honesty, even though it’s not what I want for him. At least now I know where he stands—or at least where he says he stands. You know all that teenage bravado can mask true feelings. I have faith that God has been working on Brendan and will continue to work on Brendan forever. But now I know I need to begin praying earnestly for Brendan to come to know Jesus as I have.
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