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Archive for the ‘My thyroid’ Category

Healthcare Hot Potato

In Hazelnut, My thyroid, Peanut, Tolkien on September 24, 2013 at 3:23 pm

Oh you poor neglected blog you! I’m glad you’re not a baby human, and I’m sure Child Protective Services is too.

So how’ve you guys been? Things at Casa Much are trucking along. Update, you ask? Oh, you didn’t? Well, since I’ve already started …

On the thyroid front, when I went for my 1-year follow-up in February, my endocrinologist told me I would need to go through treatment again. For a variety of reasons (not even including the utter hassle it would be) this was concerning to us:

a) because of repeat radioactive iodine’s potential effects on fertility or implications for a future secondary malignancy

b) because of the fact that this recommendation did not follow published American Thyroid Association treatment guidelines, and

c) because of the inability to get a clear explanation from my endocrinologist about why he was recommending this. We seemed to have a tough time understanding each other in person (English was not his first language), and he totally ignored an e-mail I sent with my questions.

This latter issue was the straw that broke the camel’s back for me. I know just how chaotic a physician’s day in clinical practice can be, but I have never failed to respond in some way to a patient’s e-mail or phone call. I would have absolutely understood if he didn’t have the time to write out a four-page reply and if he had instead asked me to come in to discuss it — no problem at all there. But to pretend a patient has not communicated with you is unacceptable. So that was when I decided it was time to try to find another endocrinologist. But to pinpoint someone who takes our insurance, is located within 50 miles of us, has expertise in thyroid cancer, and has an opening within the next few months is a daunting task. Eventually, however, I did find someone, a doc who actually graduated in Tolkien’s and my medical school class, although he joined towards the end of our time at school so we didn’t know each other. As well, Dr. Med School Classmate (Dr. MSC) and I have a very close mutual friend who I’ll call Dallas Cowboy (these nicknames are cracking me, if nobody else, up) who also vouched for him. Dr. MSC turned out to be awesome. Really kind and helpful, even after I tortured him with endless questions, and he felt we could do some testing first rather than going right into a repeat round of treatment (which was what Tolkien and I also thought was the best plan.)

So there I was, friends, blissfully skipping along in the care of a new, sane endocrinologist, my long search over. It just so happened that Dallas Cowboy and his wife came to Easter services with Tolkien and I later that month. When we were leaving brunch together in the same car, Dallas Cowboy’s cell phone rang. “Look,” he said, “it’s Dr. MSC!”

“Oh!” I said. “Tell him I said hi!”

And why do you think Dr. MSC was calling Dallas Cowboy? Why, to tell his good friend some exciting news, of course: that he was moving. To join another practice. Out of state.

What are the odds I’d be present to actually hear that phone call sending me back to square one? You can’t make this stuff up! Of course I didn’t blame him at all and I was happy for his opportunity, but I needed a nap just thinking about starting my search anew.

So there I was back at the aforementioned square one: needing to find a new endocrinologist. (For those of you keeping track at home, this would be Endo #4 in the course of one year.) I was out of options as far as covered providers under my insurance, so I had no choice but to go back to [prominent academic hospital.] However, I wanted to see a different physician there since I’d had a less than satisfactory experience with the one prior to Dr. MSC. But roadblock! The endocrinology department at this hospital has an unusual policy — they do not allow you to switch providers without express consent from the first one. What? I’d have to ask my original, less-than-awesome doctor for permission to switch like a meek child, explain to his face why I was uncomfortable with his care, and then abide by his final judgment over whether I could stay or go? It’s not even like we have socialized healthcare in this country — I’m paying my own money for insurance and for these appointments, and it’s clear that the payor system treats patients as as consumers. And as one of those consumers, I still have no choice?

Luckily Dr. MSC trained at said hospital and very kindly offered to intercede on my behalf. (He also told me that he’d had multiple patients switch from Less-Than-Awesome Doctor to him over the course of his time there, which may be why the hospital has this policy in place to begin with, to ensure that Less-Than-Awesome Doctor doesn’t end up with no patients at all.) One endocrinologist did agree to see me, but his office still insisted that I had to write a letter to my original guy. Which I did, simply being grateful that I didn’t actually have to have an awkward conversation with him. (Never heard back from him.)

Several months later, I finally saw Endo #4, who seems very nice. He, too, felt that a second round of treatment was not warranted without some other testing first. In fact, he felt that another round of treatment was so far out of the bounds of standard practice that I must have misunderstood Less-Than-Awesome Doctor, since LTAD has an accent. I was not thrilled by this suggestion. Although I fully admit, as stated above, that he was not easy to understand, I am the child of immigrants — I’m not exactly scared away by accents. And I know what he recommended because I asked him a million incredulous questions about it. Anyway, it’s all water under the bridge now. More important is that Endo #4 then casually mentioned, after some varied comments about the weather, that he was moving … to Rome.

People, IS IT ME???? Should I start showering? Am I singlehandedly, one by one, driving all endocrinologists out of my state? Can they sense my unhealthy obsession with L. M. Montgomery? Should I instead start carrying around a copy of, I don’t know, The Art of War or some other universally “cool” tome as a talisman against loss of healthcare providers?

All is not lost, however, for two reasons. One is that Endo #4 is just taking a temporary professorship and should be back in the States next spring. The second is that all testing and treatment for me is on hold for now anyway, because of this:

Peanut #2

Yes, I currently have a uterine buddy. We are super-excited for this new addition (especially Peanut, who wants to know when her baby is finally going to exit my stomach into her smothering care) and are praying hard for a safe delivery and healthy baby. Baby Boy (I’m currently taking suggestions for his blog nickname … anyone?) is due in early December, and I’m trying to ignore all the people who have told us that going from 1 to 2 children actually increases your work by more than 100%. We’re concentrating on less important things at the moment, such as name selection. Boys’ names are hard! Forget blog nickname suggestions, anyone have real-life name suggestions? What did you guys name your sons? We are not above theft.

So no more news on the thyroid front for awhile (I hope), for a very welcome reason. I can’t believe that, after 4 years, we are re-entering the baby phase. It’s time to stop procrastinating, get out all that baby gear, and re-learn how to use it. You know, tomorrow.

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Mishmash

In Books, Christianity, My thyroid, Peanut, Tolkien on February 21, 2013 at 2:54 pm

I am so impressed with these mommy bloggers who post every day and still have fed and clothed children. Where do they find the time? I’d be patting myself on the back if I could post once a week.

Since I am not there yet, though, let me give you a quick update on what’s been going on over the last couple of months, category-style:

1. Tolkien – Seeing the light at the end of the tunnel. Only 4 months left of residency, and then only a year of fellowship before our decade of combined medical training is finally over. It’ll be tough for awhile yet — he’s currently cramming for the first of 3 board exams over the next 18 months, which means even less time he’s able to spend with us — but we can’t help but feel a bit encouraged.
2. Peanut – “Mama,” she told me after receiving excessive hugs and kisses while she wanted to be doing something else, “I have TOO MUCH LOVE.” What a problem. She is the poster child for gender differences being inborn and not environmentally determined, given her sudden and random development into a fashionista. She is currently obsessed with skirts and dresses and how her hair should be done. We’re puzzled about where this has come from. I’ll admit I really like fashion, but given that I now work from home, she doesn’t see me dress up that much, so I don’t think she’s getting it from me. Tolkien lives in scrubs and doesn’t wear ribbons in his hair (to my knowledge.) So, school? It’s a mystery. I don’t like too much of an emphasis on physical appearance, especially for girls (I want her to place her value on her brain and her soul), but I also don’t want to be a killjoy, so I’m trying to go with it in moderation for now. I also took her ice skating for the first time recently, something we did all the time growing up in Canada (and I am no athlete), and it was a moderate success, in that no one ended up in the hospital.

In her salwar kameez

In her salwar kameez

There’s nothing wrong with wall-hugging. Or hogging.

3. Me – Had my 10-month thyroid cancer follow-up yesterday, and my endocrinologist says we need to go through all of it again in a few months — the low-iodine diet, radioactive iodine, isolation — for some long and boring reasons. A big bummer. As always, your prayers would be appreciated!
4. To be filed under “Divine Timing” – Tolkien and I took our first vacation in 5 years two weeks ago, by going on a Carnival Caribbean cruise, just days before the ill-fated Carnival Triumph took its most famous voyage. We had a fantastic time, which is lucky, because I’m pretty sure that if I had seen feces dripping down walls that I would never, ever, ever go on vacation again. Like, ever.

St. Thomas, U.S. Virgin Islands

St. Thomas, U.S. Virgin Islands

5. Favourites – I love reading quizzes people fill out, so here’s a quick one on me. If you feel so inspired, send me your answers to these questions! Really, I find them fascinating.

Favourite colour: Red and purple
Favourite number: 17
Favourite book: Way too many to list. Here are some that come to mind immediately. My disclaimer is that this list is in no way inclusive, and that some titles are listed not because of their literary greatness but because of their exceptional creativity.
The Blue Castle, L.M. Montgomery
The Count of Monte Cristo, Alexandre Dumas
The Screwtape Letters, C.S. Lewis
The Likeness, Tana French
Encyclopedia of an Ordinary Life, Amy Krause Rosenthal
The Murder of Roger Ackroyd, Agatha Christie
Rebecca, Daphne du Maurier
Favourite food: Chocolate, French fries, raspberries
Favourite exercise: Oh dear
Favourite herb: Dill. I came to dill late in life, but now I adore it. I credit this recipe with lighting the fire of my love. It’s actually addictive.
Favourite current TV shows: The Office (though it’s not what it once was, my loyalty shackles me), Downton Abbey
Favourite meal out, ever: It’s funny, as there are so many wonderful meals we’ve had over the years. But for some reason, one that really stands out is a delicious meal Tolkien and I had 9 or 10 years ago at Nawab, an Indian restaurant in Roanoke, Virginia. It was nothing short of amazing that an ethnic restaurant in an area not known for its ethnic diversity could create such a perfect tikka masala, naan and lassi, from start to finish.
Favourite animal: Zebras? Because of the symbolic nature of their black and white skins and how harmoniously they create a whole? I’m stretching here. Seems I don’t care much for animals.
Favourite quote: “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:38-39
Favourite chore: Washing dishes. And cooking, if that can be considered a chore.

6. Speaking of cooking, some of our favourite recent recipes:

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Vegetables being prepped for Balsamic Roasted Vegetable Soup (I’m not a huge fan of soup, so I never think to make it. But Tolkien is, so one day I decided to search out a recipe. This disappeared fast.)

Pink Oreo-stuffed chocolate chip cookies for Peanut’s class Valentine’s Day party.

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Pistachio-encrusted broccoli pesto salmon and mushroom orzo.

… and much more, of which I have no photographic evidence. I would invest in a better camera, but then I’d need to remember to use it to take pictures of things. Dilemma!

7. Collective treat for the day – A must-watch clip of the Downton Abbey cast doing a spoken-word performance of One Direction’s “What Makes You Beautiful.” You’re welcome.

Orange and Blue and Greedy Too

In Food, My thyroid, Politics on June 19, 2012 at 11:13 pm

The University of Virginia is becoming the train wreck from which I can’t look away.

I am a UVa alumnus. It’s where we went to medical school. And though most people feel their truest affinity towards their undergraduate institution, it’s not that way for me. Even though I didn’t start there till graduate school, I really love UVa, and I feel very much that it was the defining university in my life. I realize that part of my affection for “The University,” as it’s obnoxiously called, has nothing to do with UVa itself. It’s the place where I met my husband, where I made wonderful friends, where I experienced some of the most concentrated personal and professional growth of my life. And it’s located in Charlottesville, Virginia, which is unarguably charming. But part of my feeling toward UVa very much is due to the characteristics of the place itself. It’s a school with rich history (the beloved pet project of U.S. President Thomas Jefferson) and talented and generous faculty, and an institution that generally has had high standards for excellence (it routinely ranks as the #1 or #2 public school in the United States.) I was proud to have been a child of UVa, where I genuinely felt (at least in the School of Medicine, which is the only department to which I can personally speak) that the faculty and staff truly wanted each of us to succeed, and cheered us on when we did. And I was pleasantly surprised by the doors that UVa opened.

Over the past nine days, however, UVa has been in the public eye, and not for anything good. A quick recap, for those of you far and wide who may not have heard this story: Two years ago, UVa’s popular president of 20 years, John Casteen, retired. An extensive search was conducted for the next president, and Teresa Sullivan from the University of Michigan was selected with much pomp and circumstance as the first female president of UVa. (Shameful fact: women weren’t even admitted as full students to UVa until 1970.) By all accounts she did well. Then on June 10 an announcement was made by the head of the Board of Visitors, Helen Dragas, that, by mutual decision, Sullivan was submitting her resignation after less than 2 years. In that resignation, Sullivan attributed her leaving to “broad philosophical differences” with the BOV. This was a shock to everyone — staff, students and alumni — as there had been no indication there was anything wrong. Dragas implied in her statement that the board had unanimously agreed to remove Sullivan. Rumours abounded. An e-mail was accidentally leaked later that night from Peter Kiernan, a member of the board of UVa’s Darden School of Business, indicating that Helen Dragas had contacted him months earlier to work on a special, secret “project”: taking down Teresa Sullivan.

Reporters then discovered that, far from being a unanimous decision of the governing Board, a formal vote had never actually been taken. Dragas had simply, over a period of months, gone behind the scenes to individual board members and drummed up support for removing Sullivan, and she did that until she had enough votes to support her. 3 of the 16 members did not even know a campaign to eliminate Sullivan was going on. Further, Dragas selected a time for the meeting to make this announcement that seems suspiciously self-serving: it was a summer Sunday when many students and faculty were gone, the governor of Virginia (who appoints the members to this board) was out of the country on state business, and the 3 board members who were kept in the dark and were apparently supportive of Sullivan were known to be unable to attend (one was recovering from surgery, for example.) Additionally, she called it an emergency meeting, which does not require the 3 days’ advance notice a regular meeting does, presumably so it would be more likely to slide under the public’s radar. However, this announcement doesn’t exactly meet the requirements of an emergency meeting, making this whole shebang possibly illegal.

I don’t think it’s hyperbole to say that a firestorm has erupted on UVa’s campus. Students and faculty alike are outraged. The Faculty Senate has passed a no-confidence vote in the Board of Visitors. The Honors Council and Student Council have released calls for action. The Provost of the university said in a speech on Father’s Day that he wanted his sons to see him act in a courageous manner, so he was going to wait to see what the BOV did over the next few days to decide whether UVa was still an institution he wanted to help lead. Multiple faculty members have resigned or threatened to resign, stating that they don’t want to be part of an institution where such a backroom coup d’etat could occur without consequence. Several prominent alumni have halted their donations until Dragas and her right-hand man, Mark Kington, resign or a full explanation is provided. Peter Kiernan, the hapless author of the e-mail bragging about “explaining” his role in the situation, was forced to resign.

Meanwhile, Sullivan, like a classy person, stayed silent and out of sight until yesterday’s BOV meeting to appoint a new interim president, at which she had asked to address the board. They agreed, but only in private (of course; secrecy is what this board is best at, no matter how much it’s beaten over their heads that secrecy comes with serious consequences.) She waited in her office until the appointed time, at which point she began her walk across UVa’s historic Lawn with her husband, a law professor at UVa, to the thunderous applause of a crowd of thousands that had gathered in her support and that parted like the Red Sea for Moses to allow her to pass, patting her back on the way. I so wish I could have been there for that. I love to see people supporting an underdog, which is sure what she seems like at this point.

Sullivan gave a 14-page statement that you can read in full here, which strongly defended her record and in which she said that other institutions “are setting aside funds now to raid the University of Virginia next year given the current turmoil on our campus.” In fact professors at UVa apparently do not make nearly as much there as they could at other universities, for various reasons including the fact that the state of Virginia does not provide as much financial support as other states do to their schools. This means that UVa professors stay because they love working at UVa. How long can that desire be expected to continue if the school is known to be run like a hyperactive guillotine, you ask? Well, not long, apparently, as William Wulf, one of the top 20 professors at UVa, has just publicly submitted his resignation. The faculty are circulating a petition to refuse to recognize the newly appointed interim president who is thought to be a mere pawn of the money-hungry BOV. If prospective students aren’t scared away by this debacle, I’ll be shocked.

Meanwhile, Dragas released her own infuriating statement, a hilarious version of which you can read here, if you feel confident in your ability to keep your lunch down (and if you can excuse the bad language.) She states she and the Board know how upset everyone is, and how we the people deserve the truth. She then proceeds … not to give it. She blathers on forever in executive double-speak in that wonderful way public figures do without actually saying anything, but she does make it clear that the BOV is not going to listen to the concerns of the people they serve, and they are still moving forward with replacing Sullivan. And she never comes out and tells everyone what they are demanding to know: why precisely was Teresa Sullivan fired?

Look, I’m not naive. I freely admit I don’t know much about Sullivan. Before last week, I’d have been hard-pressed to name her as the current president of my alma mater. For all I know, she could be a serial killer and Helen Dragas could be the brave princess protecting us all from Sullivan’s hungry pickaxe. But if that’s the case, then why not say so? The fact that the BOV is refusing to provide an explanation does not make them look like the noble protectors of Sullivan’s reputation, as they’re trying to make themselves out to be. It makes them look like villains who know they did something unethical and shady. Which leaves it up to journalists and the public to try to figure out the real reason why. Conspiracy theories are running rampant, but the biggest one is that Dragas and her cohorts wanted to allow an online-education company (think DeVry or the University of Phoenix) to use UVa’s name in exchange for a cash windfall, and Sullivan refused to cheapen the school by doing so. Siva Vaidhyanathan, a professor of Media Studies at UVa, has a fascinating Slate article on the businesspeople behind Sullivan’s ouster and their motives, and why it’s dangerous for the future of education. It is dangerous, and it’s frightening. Education is not meant to be run as a business, and it will never be successful in its goal of actually educating people if it is. It’s meant to be a public service. Not a free one, necessarily, and certainly not one that hemorrhages resources, of course — but its goal has to be higher than the bottom line, or only subjects that quantitatively make money will ever be taught. What is the human race without classics, Latin, or wildlife biology?

There have been numerous calls for Virginia governor Robert McDonnell to get involved, but he refused to “meddle” in the doings of an independent board. At first I understood where he was coming from, until I read a comment somewhere (wish I could remember where so I could give due credit) that him not getting involved actually is meddling, because it’s allowing a board to get away with illegal, dictatorial behaviour. Now McDonnell has released a lukewarm statement saying he wished things had been done a little differently, which is kind of like saying one wishes Enron had kept their books a little differently. If outright wrongdoing has taken place, and so far I have seen no evidence that it hasn’t, who is going to stop these people if not the governor? He also says people in charge often have to make choices that are “unpopular” with employees. Really, my friend? Thank you for opening my eyes to the ways of the real world! My beef, and I think the beef of most other people interested in this story, is not that the president was removed. It’s how it was done. There’s a difference, which we understand because we’re not, you know, four years old. And now there are rumours that McDonnell isn’t stepping in because he was involved in the takedown too.

Dragas (what an unfortunate name! Someone online has taken to calling her “Lady Draga,” which is rather inspired) has so far steadfastly refused to step down despite the growing demands for her resignation. Her crony Mark Kington just resigned tonight, but it’s not going to be enough. Last night after the marathon board meeting to pick the interim president, Dragas was apparently heckled as she walked to her car. She responded, “Don’t believe everything you read in the papers.” Who else can we believe, Helen dear? You haven’t told us a thing! Dragas supposedly pushed out Sullivan because she wasn’t making enough money for the university, but Dragas’ own continued presence on the board is causing faculty to leave and alumni to halt their donations. Now Dragas has hired a PR firm to repair her reputation. Guess who’s paying that bill, according to the Washington Post? The UVA Foundation, which is financed by alumni donations! My fellow UVa alums, WE ARE PAYING FOR THIS WOMAN’S SPIN DOCTORS. Am I right that we should no longer donate to our school until this disaster is rectified and an apology issued? I hate to do it, and not that the amount we can afford to donate would ever be missed, but money seems to be the only language with which to speak to these people.

The whole thing just smacks of Mean Girls-esque behaviour. Dragas apparently had it in for Sullivan from the first day she was hired. I don’t know why, because the BOV hasn’t explained any of their actions to us. But you could kind of tell even in that first e-mail they sent to us alumni, in which they repeatedly thanked “Terry” for her hard work and wished “Terry” well. I’m sorry, but when was the last time you heard anyone refer to former President Casteen as “John”? The current president’s name is Dr. Sullivan, and to deliberately use not just her first name but a diminutive to me seems intentionally patronizing and sexist.

So basically, I’m appalled. I keep waiting and waiting for the truth to come out and the Board to be forced to bear the public consequences of its actions, but I guess only time will tell. It’s at times like these that my love for the press, as a journalism major, swells my heart. Thank goodness we live in a society where, though imperfect, at least the press will demand answers. The WaPo and Charlottesville’s Hook have done great investigative pieces on this story, if you’re interested in more.

Admittedly one reason I’ve gotten so interested is because it’s an effective distraction from the fact that the next phase of cancer treatment started for me this week. On Sunday we took Peanut to meet her grandparents, so she can be away while I’m in isolation. I didn’t cry till after she left, so that’s an accomplishment. She’ll be away for two and a half weeks, which will be a blast for her as she splits that between both sets of doting grandparents, but an eternity for us. Yesterday I received my first Thyrogen injection, and today I received my second, as well as bloodwork and a test dose of radioactive iodine. Tomorrow I go in for a whole-body scan, and Thursday is my full dose of RAI. Thursday at 6 PM is also the moment when I am “released” from the dastardly low-iodine diet, which has forced me to sate my chocolate cravings with lumpy improvisations. I present to you low-iodine imitation brownies (try not to lick the screen):

Tonight is also my first isolation night in our basement. See my home away from home below (yes, that is my office, and yes that is our treadmill.) Cramped, yes, but just think of the quick commute!

So that’s what’s going on on this end. Hope you’re all well, friends. And hope our school will be too.

On To Phase “The Next”

In Christianity, My thyroid, Peanut, Tolkien on May 29, 2012 at 4:10 pm

Friends, how have you been? I can hardly believe it’s been five weeks since surgery, it’s been such a whirlwind. Between starting back at work and getting ready for the next stage of treatment, I’ve hardly had a chance to breathe. Evidence of this is that I haven’t updated my other blog in ages. Sorry, you four people out there who read it!

So radioactive iodine treatment (RAI) begins next month. Being quite naive, (and not having studied endocrinology since med school), we didn’t realize it would literally take up the whole month. This is particularly irksome because June is both Tolkien’s and my birthday month, and while he like most adults would find it hard to care less about his birthday, I love birthdays. I don’t mean I’m one of those birthday-zillas Carolyn Hax is always writing about who demands that everyone throw me parties and buy me jewelry, I just mean I really like the idea of everyone on earth having one special day. I like planning what kind of chocolate cake I get to have on that day. I like going about my regular business thinking in my head “Hello world! It’s my birthday!” I like wearing my favourite shirt even though I just wore it the other day because I can, FOR IT IS MY BIRTHDAY. (Psychiatry friends, please keep your diagnoses to yourselves. Thanking you in advance.) I know, I know, who else really cares about your birthday after the age of 21? No one (although my poor family feels compelled to pretend otherwise), but that’s OK. I care, and I care about everyone else’s birthdays too — this totally goes both ways. On your birthday, I believe you should be the prince/princess (within reason; no expensive presents or genuflecting included) and eat/wear whatever you want. (Bathing of some sort is not optional though, I don’t care whose birthday it is.) So yes. Birthdays!

Where was I? Motherhood has made me so distractible. Oh yes, thyroid cancer treatment. So the full RAI dose is on June 21, but that event is only one in a series of appointments that will consume the last two weeks of June. And for the first two and a half weeks of June, I need to go on a low-iodine diet in preparation. (This is so that any remaining thyroid cells, which may or may not be cancerous, will be “hungry” enough for iodine to take up the radioactive stuff.) What is a low-iodine diet, you may ask? It is a quite restrictive instrument of torture wherein one is denied, or basically denied, many major food groups: no dairy, no store-bought baked goods or bread, no seafood, no meats where you didn’t personally raise the animal from birth and muck out its stall with your bare hands, no processed or canned foods, no chocolate, nothing with molasses, nothing with various specific food dyes, and on and on. But did you catch that? Because there is only one thing that matters: this diet is for the first half of June. I CANNOT HAVE CHOCOLATE ON MY BIRTHDAY.

I am still wrapping my mind around this impossibility. I mean, any day without chocolate is an impossibility, let’s be honest, but my One Special Day? I know, I know, I should be a grown-up, plus everyone’s saying once it’s all over, you can have as much chocolate as you want, we’ll just celebrate late, but you know what? I can’t substitute another day very easily. That just seems like a sham, to have a birthday dinner on, say, July 8, when I would know it wasn’t my birthday. (Yes I realize this birthday neurosis borders on crazy, why do you ask?) But then, my moral fibre isn’t going to be strong enough to actually prevent me from eating any chocolate that happens to be presented to me on July 8 or any other non-medical-diet day, so it’s really a moot point.

The diet is one part of what’s going to make June a challenge. The other part is that after RAI I need to go into isolation to protect those around me, particularly Peanut because she is under 5, from the radiation I will be emitting. The guidelines on how strict and how long isolation should be vary widely, even among medical literature, which is not that comforting when you’re on the patient side of things. The paperwork my own hospital sent me was blithely unconcerned (“Try to stay away from other people for 3 days. Also, try not to cheat on your taxes, but if you do, no biggie!”) But other reports have people renting apartments for weeks to stay away from their families. As you can imagine, the responsibility of not exposing your loved ones or anyone else weighs heavily. The radiation is contained in bodily fluids, so it is not passed on through touch or the air (unless you sneeze) but managing it until it’s all gone will still be complicated (using disposable dishes, using separate linens and a separate bathroom, covering electronics in plastic wrap in case you sweat, etc.). Trying to figure out exactly what to do and for how long has been somewhat stressful, because of the stakes. And during my research, I came upon a patient-information website that said “You will be admitted to the hospital the day before your RAI and your radiation levels will be checked every day. Once the doctors feel you are safe to go home, they will discharge you — usually about two weeks later.” Who in the what now? I soon realized it was a site from the United Kingdom. Oh right, I forgot we live in the U.S., the only developed country in the world without national healthcare! Anywhere else, I’d be admitted as an inpatient for this treatment, but here, because the FDA approved RAI for outpatient use in the 1970s, insurance companies promptly stopped paying for hospital admission (except in very narrow circumstances which don’t apply to me.) What this means is that protecting others from radiation depends solely on the dedication and/or ability of the patient. Some patients go to the hospital, get radioactive iodine, and take public transportation home (not maliciously — they may not have a car), thereby exposing us all.

Whatever — I don’t really want to segue into a discussion about socialized medicine, as it’s pretty obvious I think it’s a moral obligation. It’s not the point, and I am also aware that universal healthcare isn’t perfect either. Also, I don’t want to start complaining, because how incredibly fortunate are we to live in a place where this treatment is available at all? The actual point of this long-winded stream of consciousness is that Tolkien and I have to plan our own isolation using our limited resources. (For example, we don’t own a lead-shielded house.) The good news is that the radiation does degrade off surfaces and out of the patient; you just have to give it enough time. And as some of you know, I recently started a new job with a national company doing consulting for hospitals around the country, which I really enjoy, and I now work at home. Since I just started, I’ve already used up all my leave on the surgery, so I will still have to work while going through RAI, but it will be much easier when all that means is walking to the basement. And hopefully I’ll be one of the lucky ones who doesn’t get too sick.

The plan is that I’ll live in the basement for the last two weeks of June and Tolkien will stay upstairs. For the utmost protection, Peanut will go “on vacation” for two weeks to her grandparents’ houses — one week with each set. By the time she comes back, we should be all clear and back to normal. We’re so lucky to have them be able to do this for us, but I feel really bad at all the upheaval this has meant for poor little P. Don’t get me wrong — she remains the beneficiary of X-Treme Grandparent Spoiling, which will actually be an event at the 2012 London Olympics — but she’s still only two and a half years old. Your prayers that this will be a mere blip on the screen for her would be much appreciated!

The diet starts Monday, so I’ve been trying to cook low-iodine foods to freeze ahead of time (this cookbook that Tolkien found has been helpful) and steeling myself for the necessity of just stuffing this crap down my gullet no matter what it tastes like. (I haven’t taste-tested any of it because I’d like to delude myself a little longer that it might all be extremely delicious.) Last night I was up till 1 AM baking low-iodine bread in our bread machine. Now, I’ve used that machine before (back in, um, 2008) and I don’t remember the bread turning out like this (a dense, pentagon-shaped cube, if there could be such a thing) but maybe that’s how it’s supposed to look, you be the judge:

Yum.

My mom and dad have also cooked and frozen some meals for me, which is awesome. (No one seems tempted to sneak a bite though.) Unfortunately this all comes at a bad time since Tolkien has to go out of town as his fellowship interviews have started, not that there’s ever a good time in medical training. He has just 2 years left to go though (at which point we will have had 13 years of education and training post-college.) Friends, don’t be mean to your doctors — have pity on them!

So that’s the latest update. I wanted to write it all in one place since so many people have been asking for details. We’re incredibly grateful for your concern and prayers, and would love if you would pray that June will go quickly and smoothly. In the meantime, have a little iodized salt for me. Sprinkle that stuff on your coffee if you have to. Ahhh … it’s as if I’m sipping it myself.

Merci … Gracias … Danke Schon … Thank You

In Baby Howie, Christianity, My thyroid, Peanut, Tolkien on April 30, 2012 at 2:18 pm

Whew … and here I am on the other side!

It’s probably getting old to hear, but I just can’t thank everyone enough for all your support and love. The calls, messages, gifts and most of all your prayers have been such a blessing and comfort to us all. Although I am weeks behind on thanking everyone personally, know that I will catch up and we are so grateful! Most of all, we are so thankful to God for having carried us this far, and for letting me be able to honestly say that if having cancer surgery can ever be a positive experience, this was a positive experience.

Tolkien and Baby Howie accompanied me to the hospital Monday morning while my mom and dad cared for Peanut at home. Man, what a relief that we were able to do this at our hospital of choice, where Tolkien is a resident. Like most urban academic hospitals, this one is huge, and just the simple fact that Tolkien knows his way around (I don’t work there, so I would have been lost) made everything easier. And then of course knowing people on staff is always a stress-reliever as well. The anesthesiology team told me I’d be one of their family, which doesn’t actually make any difference in the medical care I’d receive, but still is nice to hear in the minutes before you go under the knife.

From my perspective, the best thing to happen that day was when my surgeon came by to check in with me beforehand, heard about my endocrinologist’s plan to make me hypothyroid, and said he’d get me in for a second opinion with [prominent academic hospital]’s endocrinology department the next day. When I had tried to schedule a second opinion myself, there was an eight-week waiting list. This endocrinology thing has been a big pain; although my old endocrinologist was perfectly nice, he wasn’t necessarily someone I’d have chosen. My PCP got me an appointment with him. In general, my bias is to select doctors who are young, recently out of training, because a) I feel like you can talk to them more like a peer, and b) they may be more familiar with whatever the latest treatments and procedures are in their field. Obviously this is a total generalization and is not really fair to the many excellent older practitioners out there (and doesn’t take into account the benefit of years of experience.)  But in this one case, my bias was correct, because this endocrinologist’s treatment plan was different from what all our endocrinologist friends, as well as the two surgeons I saw, were recommending. Tolkien and I were well aware of that, and yet didn’t have much choice if I couldn’t get an appointment with anyone else for months. Additionally, I was already questioning whether I should stay with him because it took him 10 days to return my phone call/e-mail with an important question, and he wasn’t on vacation. Now, I understand perfectly how crazily busy a day in private practice can be, but 10 days is a little ridiculous. So in all, it was really incredible that my surgeon was able to do this for me. We didn’t end up seeing the new endocrinologist while I was in the hospital (insurance issues) but we did go back to see him a few days later. And I now do not have to be hypothyroid for weeks, which is great. They started me on thyroid replacement medication right away. When I have radioactive iodine treatment in a few weeks, they’ll use a newer injectable medication to prepare my body instead of the weeks of uncomfortable hypothyroidism you used to have to go through. My endocrinologist friends will be glad to hear I am actually going to be able to do what you all have recommended! Suffice to say, I’ve transferred my care to the new endocrinologist. And am very grateful to my surgeon.

But back to the day of surgery. So I remember everything up through walking down the hall to the operating room with the nurse anesthetist, lying down on the operating table while they hooked EKG leads up to me and started running the medications into my IV, and the anesthesiologist asking what my daughter’s name was. I noticed that the objects in the room were starting to get wavy. The very last thing I remember is me asking her what her kids’ names were. I never heard her answer. The next thing I remember is seeing a very hazy Tolkien next to my bed (it was 6 hours later) and saying “I’m so confused.” That, of course, is what remember. What Tolkien says I actually said was, “I’m so confused. I’m really very confused. Where’s Words With Friends?” Which is weird, because although most new interests of mine quickly become obsessions, that game has not. (Don’t tell Alec Baldwin.)

But I gradually woke up, ended up in my room, and had a nice evening with Tolkien and Baby Howie. The surgery went really well and the lymph nodes appear to be negative. Praise God! The pain was not that bad (having a C-section was much worse) and I had no nausea at all, which is really a miracle and probably the main reason I felt this was a positive experience. Personally, I think nausea is a worse sensation than pain; and according to the research on post-op surveys, apparently most patients agree with me. And it’s lucky I’d rather have pain than nausea (within reason), since this was the third time (wisdom teeth extraction, C-section, and now thyroidectomy) that pain medication didn’t affect my pain at all. For that reason, I don’t think I’m in much danger of ever becoming a prescription-drug addict, but I also hope I don’t ever really need pain management for some reason, because I’ll be reduced to chewing on oak bark or whatever we used to do in the pre-opioid age.

The next day my dad relieved Baby Howie at the hospital, I was discharged, and Peanut and I went with my parents to their house out-of-state. Since then I have been resting while my parents wrangle a very energetic, very strong-willed two-and-a-half-year-old who believes that it is totally inappropriate for her mother not to be waiting on her hand and foot, and has the media been notified of this? I’m on lifting restrictions for two weeks (no lifting anything heavier than 10 lbs.) so I can’t pick her up or do much of her care, and of course she can see my surgical incision, which makes her very interested in the nature, and projected duration, of these proceedings. “Mama,” she asked me, “when we go home will your boo-boo be better, and can you drive me, and feed me, and carry me, and give me baths, and take me to the library, and take me to the park …” Basically, she wanted to know, do I have any intention of fulfilling my duties, or does she need to place an ad for a replacement? Ah, the brains of toddlers!

But Peanut can rest easy because overall, I’m doing pretty well. The pain is minimal at this point. My scar is obvious but not too bad, and will take a year to fully mature, so may be significantly less noticeable by then. I am tired, but that’s to be expected as it may take a little while to adjust my dosage of thyroid medication. So I’m so thankful to have my parents and in-laws nearby to take care of me and the Peanut and to give me this recovery time; I can’t imagine doing this without them. Tolkien and Baby Howie were here for the weekend and we had several friends and family come to visit, which was much appreciated although I was probably not very enchanting company (next time I will endeavour to be witty and fully awake, I promise.)

This journey isn’t over yet, but everything up until now could hardly have gone better. And we know that is due to the grace of God and to the power of the multitude of prayers you have made for us, from e-mailed Bible verses to fasting for us to the prayer conference call on the day of surgery. Thank you so much, dear friends, and let us return the gift for you by giving us your prayer requests. And of course we’re remembering Psalm 107:1 at this time: “Give thanks to the Lord, for He is good; His love endures forever.” It’s naptime for me … but soon hopefully I’ll be back to my multitasking self!

Oh, and that post-surgical milkshake? Oreo cookies and cream — and delicious 🙂

On the Morrow

In Baby Howie, Christianity, Medicine, My thyroid, Tolkien on April 22, 2012 at 11:33 pm

So this is it. The last night for the two of us, me and my thyroid.

I never gave my thyroid the slightest thought before ten weeks ago, but I must admit that now I feel a little twinge at the realization that tomorrow, this organ that has been with me since the day I was born, from the beginning to the end of every day I have ever had, that has traveled with me wherever in the world I have been, will be labeled “Human Waste” and discarded. Seems so ignominious, doesn’t it? Oh well. Obviously, I am really excited to be moving forward. After surgery, Peanut and I will be going to my parents’ house for two weeks with Tolkien visiting on any days off. After that, my in-laws will be coming for a week to stay with us. So we’re really grateful to have such supportive family and friends. And thanks to all of you for your love and prayers — I don’t mean to sound like a broken record, but I can’t say it enough.

Tolkien saw my name pop up on the hospital surgical schedule last week, which is kind of a weird feeling. You’re so used to patients’ names being the names of relative strangers, not loved ones. But he was allowed to select my anesthesiology team, which is one of the reasons we wanted to be at this particular hospital. When he talked to the anesthesiologist assigned to me, she promised to be generous with my anti-nausea meds, since I have every risk factor for post-op nausea. (Having had really terrible nausea during my pregnancy with Peanut, I’m not surprised.) So that’s one thing I’m not looking forward to. Things, however, that I AM looking forward to:

1) There’s a famous milkshake place that delivers to this hospital but is too far to deliver to our house. I never thought I’d get to partake of one of these much-lauded concoctions that Tolkien gets to enjoy on call. But post-op, since I’m going to be starving after having been NPO for a day, but will be on a liquid diet, Tolkien and Baby Howie have promised me we will order some.

2) A sort-of vacation! Is it sad that I’m looking at recovering from major surgery as a vacation? Well, Tolkien and I haven’t had a real vacation in 4 years, and won’t have one for at least another year, so I will take what I can get! I’m stocking up on reading materials and pajamas as we speak. My endocrinologist is now planning on starting radioactive iodine treatment right after surgery, so the two weeks of recovery will also be used to make me hypothyroid in preparation. This will make for a more uncomfortable two weeks, but will kill two birds with one stone (rather than having to have a separate two weeks of letting my thyroid hormone levels drop later.) I’m hoping I won’t be too miserable to concentrate on my Nook books and Seasons 1 and 2 of Downton Abbey (thanks to my dear friend Sandy!) And of course I have work I’m hoping to catch up on too.

3) Seeing how the Lord will use this to His glory. As Mark 11:24 says, “Therefore I say to you, whatever things you ask when you pray, believe that you receive them and you will have them.” And 1 Peter 2:24b: “… by His wounds you have been healed” — past tense!

Thank you again, all of you, for praying that God will be with us and the medical team, and hope to be blogging again soon!

A Decision, Made

In Christianity, My thyroid, Peanut on April 3, 2012 at 11:28 pm

A very welcome update: the previously-mentioned [prominent academic hospital] that is our first choice gave me a surgery date of April 23! So … no more medical dilemma! We are so grateful that God answered this particular prayer in this particular way. Now comes the flurry of planning, applying for leave, making arrangements for Peanut-care (and Much-care, since I’ll be out of commission for a couple of weeks or so), getting to all the necessary appointments, etc. But in the meantime, thank you to all of you for your prayers about this, and your continued prayers would be greatly appreciated! Before I enter the black hole of convalescence, I feel the pressure to get a lot of things done, one of them being snagging Peanut a spot in a good preschool for the fall (since by the time I return to productive society, even though that’s hardly eons away, all the schools might be full and she’d be relegated to working toddler shifts at McDonald’s or whatever happens to two-year-olds who DON’T GET INTO THE RIGHT PRESCHOOL RIGHT THIS MINUTE.) We don’t live in one of those legendarily uber-competitive preschool locales like Manhattan, so I thought we’d be safe from the craziness, but that’s apparently not entirely true. Today, Peanut and I both had interviews at a certain private school. Separately. It was surrealistically hilarious, and I have no idea what went on during her “cognitive assessment” since Peanut is not the most accurate historian. According to her version, it may have involved elephants. Anyway, it was a nice school. A really, really nice school. But I realized this was not the kind of school I was used to when they told me, in all seriousness, that the school would be happy to board our family’s horses in the on-campus stables if that would be convenient for us. Which, as you can imagine, was a real load off my mind, because the fate of our family’s non-existent equine members was really weighing very heavily upon me.

So basically, I have no idea where we’re going to send the Peanut to preschool.

But, no matter. Things will fall into place, one thing at a time, as God has shown us again and again. For now, surgery is scheduled! Yay!

Gratitude and Praise … and an Interesting Dilemma

In Christianity, My thyroid, Tolkien on March 21, 2012 at 6:57 pm

I am really humbled by two things this week: the outpouring of love and support from the people around us, both near and far (that includes each of you who is reading this!) and the amazing response of God to prayer.

I had a surveillance lymph node ultrasound yesterday to evaluate for spread of the cancer. The tumour is in the left lobe of my thyroid, and the lymph nodes on the left are all negative, which is fantastic. There are a few positive lymph nodes on the right, but because this is contralateral to the malignancy, the surgeons feel they are likely incidental, so they’ll check them out intraoperatively (while they’re actually in there with their scalpels) and dissect them then if they look suspicious. But basically, they feel the risk of distant metastasis is low. Praise God! As I mentioned before, we knew that papillary thyroid carcinoma is a very good cancer to have, in the grand scheme of things, as it’s not aggressive and responds well to treatment. There are plenty of people who have gone through this and been fine. But because mine was large and has apparently been sitting there getting comfy in my annoyingly-welcoming thyroid (“Make yourself at home! Can I get you a hot cocoa? A warm bath?”) for several years, the concern for spread was higher. The relief we all feel is rivaled only by our awe and thanks at how quickly and generously this particular prayer was answered. Psalm 28:7 says it perfectly.

I’ll never be able to say thank you enough, but thank you for praying and for your continued prayers! My personal faith has always been sort of average, and I’ve always envied the strong faith and spiritual life of many of my brilliant, impressive friends. But in looking for Bible verses to meditate upon daily over the past weeks, I’ve been really amazed at what a difference that particular exercise has made, even as someone who grew up reading the Bible. God’s listening. It’s pretty incredible.

So now, we’ve reached an interesting decision point. Yesterday I met a surgeon at [prominent academic hospital] where Tolkien is a resident. This hospital is tops and the surgeon was really impressive. So nice and took the time to answer all our questions without making us feel rushed, which are not always qualities surgeons are known for. (To all my surgical friends, naturally YOU are the exceptions to this rule!) My top choice would be to go with him. However, he has a 3-4 month waiting list. He said that’s because the only way he can control quality is by limiting the number of operations he does a day (which I totally believe) and that that’s why he’s in academia, since in private practice the pressure to see more and more patients and book more and more surgeries does not allow for the practice of that kind of careful medicine. My thoughts on this sad aspect of healthcare could fill another blog entry, but let’s not digress. Today I saw another surgeon at a medium-sized private hospital. He too was very nice, and he gave me an OR date 4 weeks from now. So … go with the surgeon I really liked at the better hospital (where Tolkien is on staff, which could come in handy) but wait till I’m old and grey, or go with the surgeon at the slightly less-prominent hospital who is probably nearly as good and just move the heck on with our lives? Tough decision. The other thing is that pregnancy is verboten until 1 year (some say 6 months, but my endocrinologist is old-school) after the radioactive iodine, which is a couple of months after surgery, so putting off surgery also increases the time till we can try to have Peanut #2, and obviously delaying childbearing in these times of fragile fertility is not a super-awesome idea. Neither surgeon is worried about spread if we wait the 3-4 months, but I kind of want to just get this over with. First Surgeon said he would try to get me in earlier than 3-4 months, so we will see. Now we’re praying that the right decision will be made clear.

So that’s where we are … and thank you again to all of you. I’ll keep updating here when there are things to report. In the meantime, though the thyroid is certainly a very fascinating topic, let’s talk about something else, shall we? Is anyone else bored by Andy and Erin on The Office? Anyone? 🙂

Today’s Moment of Awe

In Christianity, My thyroid on March 18, 2012 at 3:15 pm

First of all, I can’t possibly thank you all enough for the Facebook messages, e-mails, and calls we’ve received. How much easier are our burdens when they are shared! I am so grateful for every one of you, and please know that we are sending love and best wishes right back. I will thank you all individually as well, but just wanted to acknowledge you right up front and tell you how appreciated you are.

Just a quick thought for today. Throughout my life, and I’m sure many of yours, I’ve had numerous instances where I suddenly knew with a flash of clarity that God was using someone to speak to me. Today was another one of those instances. In church this morning, the woman giving the sermon opened with, of all verses, Matthew 18:20. The very same verse I blogged about yesterday. For my non-Christian friends, there are over 31,000 verses in the Bible. What are the odds that on this day she would pick that exact verse? This same speaker then went on to talk about a difficult time in her life — which began when she had a tumour in her thyroid.

There’s no such thing as a creepy coincidence when it comes to God. I knew he was telling me to listen, because he is here with us. The sermon itself went on to talk about how community multiplies our joys and lessens our griefs, and what a true message that is. And how lucky we all are, as humans, to be entitled to a relationship with God! What strange incident of happenstance has happened in your life that made you think of God?

An Unexpected Journey

In Christianity, My thyroid on March 17, 2012 at 4:54 pm

My gynecologist’s office is one of those very nice doctors’ offices with very boring magazines. A few weeks ago I was sitting there waiting for a regular yearly well-woman checkup with absolutely nothing to read. That was because I was still slogging my way through M.F.K. Fisher’s The Art of Eating at the time, which is an endless 745 pages long and which I wasn’t going to carry around with me and risk herniating a disc for. So I was at the mercy of the waiting room reading material, which consisted of a December 2011 Sports Illustrated, a few issues of The Economist, and twenty-two Web M.D. Magazines, which if I’d read one I’d read them all. (Seriously. They were all copies of the same issue.) I spent the time mentally ordering the list of remaining errands I had to do that day before picking up Peanut, and I was already pre-emptively checking off that appointment as just another one of those errands. Until I got in the room, my gynecologist started her exam, and she told me she thought she felt a thyroid nodule.

I assumed the nodule would turn out to be either non-existent or a benign adenoma. I remember thinking “Man, this just set me up for 2 months of dates with the healthcare system for nothing.” Because now I was going to have to have an investigation, beginning with an ultrasound. Which, a month later, I did. The day after that, I got a voicemail from my gynecologist saying I needed to talk to my primary care physician. Two days after that, my PCP got me in to see an endocrinologist. Six days after that, I was lying on a table with a needle in my neck getting a biopsy. And five days after that, I got a call from my endocrinologist as I was driving. I pulled into the parking lot of a Dunkin’ Donuts so I could take it. It was the same Dunkin’ Donuts our real estate agent had taken us to for breakfast one morning two years ago when Tolkien and I were first moving to this city. I don’t know why that memory popped into my head, but these things are so strange. I remember fixing my eyes on the store’s brick wall as he told me the results, and oddly, I wasn’t even that surprised. All I could think about, over and over, was the same thing. I am 32 years old, and I have cancer.

I’ve suddenly joined a club I never imagined joining, but I guess no one ever does, right? I’ll post updates on this blog as we go through this experience. Right now, what we know is that the type of cancer I have — papillary carcinoma of the thyroid — is good, but the size is bad. We know I will have to have a thyroidectomy and radioactive iodine therapy afterwards. I’m meeting with two surgeons this week at two different hospitals and will hopefully choose one and get a date for surgery soon after. We will also hopefully find out more about prognosis and whether it has spread this week as well. Most importantly, I know that God is good. I know that the power of prayer is real. I know that the power of multiplied prayer is real. “For where two or three are gathered in My name, there am I among them.” — Matthew 18:20. I know that I’m blessed to have such wonderful people in my life, family and friends who are gathering as spiritual warriors to surround Tolkien, Peanut, my parents, Baby Howie, and I. If you are reading this, know that I would greatly appreciate your prayers too — and would be happy to do the same for you. I’ll post again soon … and to all of you, you know who you are, thank you!