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6.28.2012

Cancer Free! (And Mom's Thyroid Biopsy)

Has anyone seen my cancer?

Because my doctor CAN'T FIND IT ANYWHERE!! 
(I credit this bit of cleverness to another survivor)



WOOHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

What can be better than that?

font family: 'Coming Soon'

I am as cancer free as I will ever be again. 

Both of my tests are negative and while the doctors are still trying to get a confirmation test, something would have to go horribly wrong for this to be contradicted. So I feel confident enough to say I am cancer free.

Obviously I am thrilled about this. It pushes a humpback whale of stress and worry off of me, my family, my friends. It means a whole year test-free, surgery-free, relatively pain-free. It means I can relax and focus on other areas of my life. It means I can return to whatever semblance of normalcy I conduct my life in. It means I won't have to see that strange look on faces when I tell people I have cancer. Something between surprise and pity and relief.

So I don't even want to discuss anything else. I don't want to leave myself or anyone else with a thought other than the beautiful silk-wrapped thought that I am cancer free.

And if that is what you want to be left with too, the little bird of hope perched on your hand, stop reading. Wait until another time to read my thoughts on being a lifelong cancer patient or my mother's biopsy.





BUT.

(sigh.)

But I am not cured. And there is a difference. Don't get me wrong; I am as grateful as a pardoned prisoner to have this diagnosis. I want to carry this diagnosis around in my pocket and pull it out proudly to show strangers or frame it above the couch and invite friends over to admire it.

But there is something a bit anti-climactic in only being cancer free for a year, as opposed to a lifetime. I am still a cancer patient and will have to undergo tests next year and am still high risk for the next 2-4 years. The cancer will still be there, if in no other form than a slight shiver in the back of my mind. And it will resurface every year for the rest of my life. Given what I have read of the experiences of others, how fortunate I am to not be in the throes of recurrence or metastases or more aggressive cancers or harsher treatments, any dissatisfaction on my part seems selfish, petty even. But it would be dishonest of me to say that this reversal of my diagnosis is a psychological cure-all. I still envy those who are truly cancer free.



But! This IS the best possible news I could hope for. And I am gifted a year of health, which, as the cliche says, you don't truly value until it is gone. So I will do my best to be fully appreciative and use this year wisely and CELEBRATE life more fully!



Doctors should be required to take communications courses. 

On a side note: I finally deciphered my cancer-free status on Wednesday, though it appears I was told about it on Monday. To the credit of the doctor and nurses I have been calling repeatedly in an effort to get my results, it only took 4 days past the original deadline to tell me my results, as opposed to the 6 days I bemoaned yesterday. Against their credit, I was told in such a convoluted manner as to once again misunderstand my diagnosis. I am an intelligent person with 7 years of higher education in English language and literature, a field dedicated to the analysis and interpretation of language. And yet, in dealing with the medical community I have encountered an excessive number of language barriers in situations where communication is critical.


I have already censured the medical community for 1) contrary use of 'negative' and 'positive' in diagnoses without additional clarification and 2) contradictory body language during diagnoses (e.g. smiling and cheerful tones during the delivery of bad news.

This most recent misunderstanding comes from such phrasing as "so far so good, but I cannot say for sure until I receive written confirmation" and "your thyroglobulin level is low, but not low enough for a confirmation." This phrasing led me to believe that the "confirmation" was equivalent to a final evaluation of my lab work. I have since been informed that it is simply a precautionary measure, equivalent to double-checking and that my thyroglobulin level (.25 NOT 2.5) IS low enough to be considered negative. The nurse seemed quite bewildered as to why I was still persistently calling for my results as I was supposed to realize that what was relayed to me, sans confirmation, is as good as it gets.


So now that we are officially done worrying about me, let's worry about my mom for a bit....

Today I went with my mother to her biopsy appointment.

Doctor Speak played a significant role in our understanding of what happened.



Whereas all of my cancer testing and treatment has taken place at the Harris hospitals (HEB and Fort Worth), my mother chose to get treated at UT Southwestern Medical Center, which has a nationally recognized endocrinology department ranked 24th in the nation. Harris FW scored a 26.5 out of 100 on the same test (U.S. News). That's like getting drunk before a trigonometry exam you didn't study for and sleeping half-way through. Only it's your doctor who is taking the test and the subject is how to heal you. That and the hassles I have dealt with... I am seriously considering switching.

The wait time was not bad at all. We arrived at 8:45 for a 9:00 appointment and they got her almost exactly at 9. She only had three lines of paperwork to fill out and two places to sign. However, we did run into another language barrier with the paperwork, which asked if she had a Mental Directive and an Advanced Directive, neither of which we had ever heard of. Considering more than 60,000 people search the terms "what is an advanced directive?" every month, we are not alone in our confusion. I guessed it was some kind of legal document like a will and I was right, but why didn't they just say, "Do you have a living will?" Who besides lawyers and doctors ever refers to these things as directives?

The rest of what happened was described to me by my mother since I had to stay in the waiting room. You might want to compare her experience with mine. I have to assume that my doctors/technicians were superior in explaining what they were doing to me throughout the biopsy than these doctors/techs were because my mom was pretty confused about what had happened to her. Here is our conversation as close as I can remember:

ME: Did the anesthetic hurt?
MOM: I didn't get any anesthetic.
ME: What? Seriously? Are you sure??
MOM: Yeah. They just poked me with needles.
ME: Was one of these needles small?
MOM: They were both about the same size. I was watching them on the screen.
ME: Okay, but did you actually see the needles with your eyes? You can't really judge the size of things just from the screen. Did they at any point say "This is going to hurt a bit" and stick you with a needle that pinched a bit?
MOM: Oh yeah, they did that. 
 (This was the anesthetic needle.)

ME: So how do you feel? How was it?
MOM: My neck is sore. It hurts a bit. But it wasn't terrible. But my neck hurts.
ME: Well how badly? Was it worse than you expected? Should I tell people you experienced more pain than me?
MOM: No. Just painful enough to want sympathy. 

:) So I guess it is still safe to say that the biopsy is not as scary as it seems on paper (that pre-web text venue). Don't let the giant needle worry you. You will feel pressure and soreness but not much more.

And I could happily end this saying I am perfectly hopeful.

BUT. (Bigger sigh.)

I am worried. For one, my mother drew a picture of her ultrasound for me. She is an incredible artist, so I know her rendering is accurate. Unfortunately, what it shows is five nodules in two clusters, all on the left side of her thyroid and all about 1.5-2 cm in diameter. The doctors described what they saw as "lumpy" and "mushy." If you recall my biopsy, my thyroid was described as being "lumpy and bumpy." I think these terms may be Doctor Speak for cancerous.

The only other thing she noted the doctors saying was that it was likely she has Hashimoto's disease. I was also diagnosed with this along with the cancer, but the cancer trumped, especially since it meant the removal of the thyroid (and thereby the removal of H disease).

The symptoms of Hashimoto's disease that my mom displays are (click here for a full list):
  • A large, lobulated (lumpy) and holey (in the Swiss-cheese sense) thyroid 
  • Sensitivity to cold
  • Migraines
  • Cramps
  • Memory Loss
  • Hair Loss
  • Muscle pain and stiffness
  • Hypothyroidism (slight)
 According to a 13 year study on the correlation between Hashimoto's and Papillary Thyroid Cancer, those with HT and " undergoing thyroidectomy are 30% more likely to have PTC." I'm not sure exactly what the role of the thyroidectomy is in this equation, but I suspect it means that if the Hashimoto's is severe enough to warrant surgery, the probability of cancer increases.

After my mom's appointment, I felt her neck and found that the left side was protruding a bit more than the right, meaning either her thyroid or lymph nodes or both could be swollen on that side.

All these things mean that my mother has the following symptoms of thyroid cancer (click here for a full list):
  • Enlargement of the neck/lymph nodes
  • Difficulty swallowing & a choking feeling (which we both strangely attributed to her getting older)
  • Asymmetry in the thyroid (big nodules on one side, nothing on the other)
  • Hypothyroidism (slight)
  • A lobulated and holey thyroid
This plus our amazing family history makes me nervous.

And perhaps a better daughter would lie to her mother and tell her she thought everything was great to spare her a couple of hours of worrying. But everyone told me things were fine and that only made me MORE upset when it turned out not to be true. In fact, the constant reassurances from well-meaning strangers and questionably motivated medical staff made my diagnosis a veritable shock. Sorry Mom. We will just have to pray that much harder.

God, if you are reading my blog, please give us one more cancer-free verdict.





6.26.2012

Close But No Banana: Half of My Cancer Results and More about Thyroglobulin

Cancer Free or Not Cancer Free?

To this question, I have half an answer. Or even slightly more than half, but nothing definite. Basically the most annoying maybe ever. I feel mostly better but a lot frustrated and a dash fearful still. It would be really nice to know for sure. My scan is negative and my doctor felt confident enough to tell me that (a week later, following begging and tears). However, my thyroglobulin level is 2.5, which is "low", but not low enough to get an all-clear yet. A 2.0 or below is usually the strong indicator of no recurrence, so the best my doctor could do was say "so far so good" and he'd get back to me when he had written confirmation.

The frustration I've been experiencing, for those of you not playing along, is largely stemming from the fact that to even get HALF of my results has been like trying to stuff a cat in a dress (notice how few kitty-outfits are sold in pet stores). I have been put off for a week-and-a-half now, mostly by callous answering machines. After having been told I would get my results Wednesday, Thursday, Friday and Monday (yesterday), I finally had it. I had already left three new messages for my doctor's nurse, so I tried calling the operator (even though the answering service makes it clear this is for doctors and hospitals only). The first operator immediately transferred me BACK to my doctor's nurse's answering machine (every bit as confusing as it sounds).

So I called again, this time on the verge of tears and the second operator took pity on me when I begged her not to put me through to a machine. She told me my nurse was right there, talking to a patient, and she would put me on with her as soon as they were done. And unlike all the other people making promises to me, she kept her word. After ten more minutes I talked to the nurse who told me my scan was clear, and everything looked good, but the doctor would need to confirm and she would have him call me before the end of the day. A few hours later he did call and told me basically the same thing, but in a little more detail. No one has been very clear on WHY my results have been so difficult to get a hold of. The doctor expressed his own confusion, saying something about how they had been sent to an outside lab and he wasn't sure why. So far the excuses have been: We don't have them yet; The lab is broken; You should have called; Oh, you did call? Well, I was out of the office; They can only send three or four tests at a time; I need to check with the doctor; and I'm waiting for confirmation. Over six days....

Anyway, I called again today, hoping to shut this thing down once and for all, but no banana. No return call either. I am beginning to wonder if I will ever get an all clear.

And even though I will only be "cancer-free" for a year, this period of relief has become more and more desirable to me with every trip to the hospital and needle injection and unanswered phone call. A whole year of pseudo-normalcy and health? I'll take it.  While a recurrence would certainly not be the end of the world, I very much dread undergoing the whole surgery-radiation-hypothyroidism process again.

REVISION: I am still rather confused about calculating chance of recurrence and what constitutes a good thyroglobulin level. Hopefully I will have a doctor explain this to me soon so I can relay the information to you.

From what I have read, I have anywhere from a 30%-80% chance of recurrence. Most articles I have read predict the lower end of the spectrum, saying that low risk thyca patients (young, white, female, no metastases) have a 10% chance of recurrence and high risk patients (older than 45, larger tumors, metastases, male, "certain other demographics"). Since my cancer had already metastasized to my lymph nodes by the time of my surgery, I am considered high risk.

Here's where I get confused. A  few articles say that higher risk candidates have an 80% chance of recurrence. The first that I read, a 2005 article on thyroglobulin tests, states:
'We were surprised to find that even with relatively low thyroglobulin levels, and even when there is no sign of a tumor, about 80 percent of patients had a recurrence of their cancer within three to five years,' says first author Richard T. Kloos, associate professor of internal medicine and of radiology.
 The strange thing about this article is how there are no qualifications to this argument. To say all patients have an 80% chance of recurrence seems unlikely, since doctors only take special measures to annually monitor those in the high risk category.

Another study, discussed in a 2011 article of Clinical Thyroidology, says that I am at an 80% risk not because of my metastases as much as my thyroglobulin level:

In the second study, 107 patients with thyroid cancer treated at The Ohio State University were studied. All patients underwent thyroidectomy followed by radioiodine treatment. All had thyroglobulin stimulation testing with rhTSH and were divided into the following groups: Group 1 - thyroglobulin ≤0.5ng/ml, Group 2 – thyroglobulin 0.6-2.0 ng/ml and Group 3 - thyroglobulin > 2.0 ng/ml. Thyroid cancer recurrence rates were as follows: Group 1 - 3%, Group 2 - 11% and Group 3 – 80%. This study demonstrated that a rhTSH stimulated thyroglobulin threshold of 2.5 ng/ml or greater indicated a high risk of thyroid cancer recurrence.
Again, I do not have the full story on my cancer testing yet, but when I spoke with my doctor he said that a 2.5 thyroglobulin level was low. Not low enough, but still low. And yet the study above suggests that this is the highest level and highest risk.

I am obviously going to have to talk to someone with a medical degree to get this sorted out.

Tomorrow I am going with my mom to her biopsy appointment. I will do my best to document her experience; it will be interesting to get a second perspective on the experience.

Now I'm off to harass my doctor with more harrowing phone messages. I leave you with some thoughts on the current quality of healthcare:


6.23.2012

To Those Who Wait: Still Waiting for Cancer Results



Waiting for Cancer Results?

My sympathies. And hopefully good things. I still don't have my test results. I actually went down to the doctor's office today because by 2pm no one had returned my calls and I was determined not to let this slip into the weekend. I am not good at waiting. But apparently, God is laughing at my plans,and I won't hear anything until Monday.

Although I'm not holding my breath. I've decided to just pretend they won't have my results for a month. Hopefully I won't be disappointed. 3 times I was given a date for my results and 3 times nothing. All for apparently different reasons too. I'm feeling a bit paranoid. Today the nurse actually said "Oh, if you had just called, I would have rushed your results." Called?? Like the 8 times I called on Wednesday, the 15 times I called on Thursday and the 4 times I called today before going up there? "Oh, well I was out of the office for a couple of days." So really, my calling did no good, and she has obviously not even listened to the dozen or so messages I have left for her. Good grief.

Ever notice that poor health coincides with a lot of waiting? You wait for your scheduled appointment, you wait in the waiting room, you wait in line at the pharmacy, you wait for your prescriptions, you wait to pick up your prescriptions, you wait at the hospital, you wait for testing, you wait for results. Perhaps the best advice I can give anyone going through the cancer process is to always have a good book on hand. It makes some of the waiting bearable.






On a side note, I saw the film Brave tonight. Wonderfully done. The first Disney princess film where the heroine is not required to find and marry a man for personal fulfillment. Also, the first positive mother-daughter story they've done. It sends a strong message regarding the importance of finding one's own path and the heroine finds a unique way of balancing this independence with consideration and love for her family. A pleasant and thought-provoking way to pass the time.

6.21.2012

Waiting for Cancer Recurrence Results

is excruciating. I am still waiting for my results. Apparently the lab broke. Apparently I have the worst luck. I mean, how does a blood lab break? Vampire vandalism?? Urgh.

Waiting makes me cranky. But they claim they'll have my results tomorrow. I'm not going to put too much stock in it. Here is another bit of writing therapy I engaged in today to keep my sanity:


Poem Beginning with a Line by Emily Dickinson

“Hope” is the thing with feathers—
and sharp serrated beak
that each day feeds upon your prayers
and leaves the nights more bleak.

Hope is the final minute
before your time is up;
the dream that makes you chase it
and bars your waking up;

the poison not touching lips;
the vow of siren song;
the gun just within your grip;
the last line of a psalm.

Still you plead for Hope to stay
and worship at its feet.
To send the ache of Hope away
would be the worst defeat.

6.20.2012

I Am Not My Cancer

I AM:
creative, goofy, accident-prone, artistic, musical, a bibliophile, a cynic, naive, optimistic, pessimistic, a humanitarian, a zoopile, ridiculous, melodramatic, romantic, an Austenite, a tree climber, late for something, attached to to-do lists, owned by two cats, a cyclist, sardonic, sarcastic, a daughter, a wife, a sister, a friend, a squidge champion, a chocolate addict, lost without my giant purse and half a dozen books, given to bad puns, shy around strangers, embarrassing around friends, the person next to you at the light singing as loudly as possible, a napper, happy most of the time, in the depths of despair on occasion, klutzy, type-A, overzealous, passionate, an over-thinker, a planner, a clarinetist, a designer, full of pancakes, reading Slaughterhouse Five (for the first time!), One Flew Over the Cuckoo's Nest, A Clockwork Orange, Bird by Bird, Lark Rise to Candleford, and The Invisible Man simultaneously, a volunteer at the food pantry, children's church, and Agape meal, a surprisingly decent cook, a terrible dancer unless no one is looking and then I'm Ginger Rogers, in love, funny, brown-eyed, snub-nosed, long-haired, someone who is constantly told I look like someone else, Adrian Monk and Lucille Ball's biggest fan, not at all flexible except for my elbows which can turn inside out, able to curl my tongue, a nature-lover, afraid of heights, not afraid of snakes, afraid of sharks, smart, maybe not street smart, an expert on contemporary American literature, an off-duty teacher, a good listener, the first one to smell it unless I have a cold, always wanting more, indignant on social issues, a soap-box preacher, an activist against sexual violence, a scuba diver, a painter, a poet, a writer, a blogger, afraid to drive at night or in the rain, that crazy lady with five loafs of bread feeding the ducks and the seagulls, imaginative, afraid of being alone, not a big partier, a huge fan of cards and board games, a period movie fanatic, British in another life, excellent at making strawberry pie, likely to call you back because I couldn't find my phone in my gigantic purse, a hater of stereotypes, finally okay with not wearing makeup, impatient for things to happen, technologically proficient, a Luddite and yet hypocritically addicted to my laptop, "deeply intelligent" (thanks Dad), kind, familiar, strange, paradoxical, enigmatic, bombastic, a linguaphile, anxious to look up any word I do not know and then bug my husband with it by saying things like "wow, dear, I had no idea you had such a rococo cravat among your toggery", forgetful, polite, someone who knows what it is like to be on the other side of the counter, curious, forgiving (mostly due to the bad memory), flammable, hot-headed about politics, likely to correct your grammar, forever finding mistakes in books and magazines and menus and thinking I should write a letter but no one writes letters anymore, a bit old-fashioned sometimes, except when it comes to social issues, constantly thinking about death, a fan of the man in the moon, a believer because the alternative is just too horrifying to contemplate, wishful, hopeful, loyal to a fault, a great multi-tasker until I get distracted, likely to surprise you,


and being all these things, I am NOT my cancer.

Writing is great therapy for cancer.

My lab results are not in yet. So while anxiously awaiting the verdict, I made this list. And I feel better. This disease will not change who I am or how I am remembered. Nice to think about, isn't it?

6.15.2012

My Second Radioactive Iodine Scan


Like everything else this round, my second scan was less dramatic than the first. I think this is mostly circumstance, since at the time of my first scan I had just lost a close grandparent and that plus my recent diagnosis and surgery caused mortality to weigh heavily on my mind. Also, this time my dad came with me and napped in the waiting room and I think his presence made me feel far less alone. He is one of the few people in this world who shares my morbid sense of humor and probably the only one who can get me to laugh no matter what the situation.

So I didn't talk to any of my recently deceased relatives. The first half-hour picture went smoothly and I almost fell asleep myself, praying and trying to think of plot elements for my novel. I find that clear thinking in a rumbling coffin-like machine is rather difficult though, so I mostly let my mind wander and prayed. If you aren't religious, I suggest you memorize a favorite poem or two, because the repetition of familiar words and thoughts is comforting under stress. There was a painting on the wall next to me and I kept thinking how much more sense it would make to put it on the ceiling, but it might be considered too much of a hazard and most of the scan requires you to close your eyes, because otherwise you go cross-eyed from looking at a screen a half-inch from your face.

This story will likely make more sense if I try to adhere to some sort of chronology, so here goes:
Dad and I arrived at the nuclear medicine department at 10:02 (my dad made a joke about us being two minutes late and having to leave). I will brag that we did not get lost at all, but I guess this feat is somewhat tempered by the fact that I had to find my way there the day before and did get lost that time. Still. We found our way there and were sent to the waiting room where I waited all of two minutes before they came to get me. I really am impressed with the efficiency of this second round of testing. I hope all my future appointments will be as smooth.



The woman who ran my scan is named Antoinette (a beautiful name) but she goes by Toni. She was very nice and even laughed at my pathetic jokes. I joke a lot when I am nervous. Anyway, I bring this up because I actually asked her about the ridiculous name & birth date bracelets. And they do have a purpose! Apparently, checking a patient's sanity is secondary to checking identity, in case somewhere in the hospital labyrinth, the wrong patient showed up for the right procedure.

I asked why anyone would try to steal a free RAI scan, and she seemed to think identity theft was more likely to occur with those really fun hospital procedures like gall bladder removal and appendectomies. I pointed out to her that it is actually really easy to cheat this ID test, what with the answers being printed on your wrist and all, and she seemed quite grateful and, I'm sure, placed a note in the suggestion box. So all you future hospital procedure thieves beware.

Anyway, Toni offered me a blanket, and even though I didn't start out being cold and do not think I was experiencing hypo symptoms, I was very grateful for it half-way through the procedure. I laid down on the table and Toni wrapped my arms in a giant velcro “stabilizer” which basically pinned my arms to my sides so they wouldn't fall out off the machine. A comfy contraption, but I wish it gave some kind of support to your hands.

For the first picture my hands just kind of dangled in the air, which is not exactly painful, but certainly a strange sensation. I was smart enough to cross them over my stomach for the rest of the pictures. I also recommend you accept the proffered pillow for under the knees. Though the first picture is the longest in duration, it is also the most comfortable position and so seems deceptively quick.

After thirty minutes, Toni returned and adjusted me, placing a pillow under my neck so it extended. Fine at first, this eventually proved to be an uncomfortable position and I spent the last ten minutes of my scan totally absorbed in the crick in my left shoulder. During the second picture, Toni marked my nose, chin and two places on my neck with a smelly red marker. The smell was like those unscented dry-erase markers. It did not actually leave any marks on my skin (so don't worry that you are walking out of the hospital with a big red nose). She would press the marker to the part they wanted to focus on while her assistant took pictures using a computer monitor.

The last part of the scan was the hardest because of the strange position I was in (maybe doing neck stretches beforehand would help?). It was a lengthy ten minutes and having laid still for so long, my mind kind of started panicking. I guess it was some mild form of claustrophobia surfacing. Basically, I would become convinced that I was paralyzed and would have to wiggle my toes or fingers to make sure they could still move. I'm sure those parts of the scan are quite blurry, but I guess that was okay since I didn't have to do any retakes. Also, I started feeling like I wasn't really fully breathing through my nose, so I opened my mouth two or three times to breath until I could convince myself I was breathing fine. I don't know. Maybe this was just my own particular brand of crazy.

Finally Toni returned, reviewed my pictures and gave me a thank you note with a number I could call if I had questions. I thought this was a particularly nice touch. Hopefully it won't cost me a million. I am sadly suspicious of good customer service in such a context. I woke my dad and we headed upstairs for my bloodwork.

Unfortunately, this is where efficiency dissipated. The receptionist whom I had seen three other times this week got confused and told me to have a seat, assuming that I was there for more injections. After an hour and a half of waiting and spotting several nurses with lunches, I got suspicious and asked if lunch break had started. She said yes, that my nurse would not be back until after lunch (another hour from then). This is when I explained that I was there for lab work and the nurse said “Oh! They just left for lunch.”

At which point my dad and I also departed for lunch. After my morning fast and month-long no-iodine diet I was eager to the point of drooling at the prospect of eating real, salty, processed goodness. So dad and I went to IHOP and I wolfed down a burger, but it wasn't as good as I remembered. That seems to be what healthy eating does to you-- ruins all the junk food (ultimately a plus, but can make for snobby dining). 



An hour later I got my blood taken. A rather uneventful conclusion to my testing. And now I wait. My results will be in next Wednesday, and after a proper period of weeping (in joy or sorrow) I will let you know. I don't know who is more anxious, my husband or I. I'm sure I could get through two or three more rounds of this without a complete breakdown, but I certainly do not want to.

I recently read the blog of another Thyca patient who has had three recurrences in the four years since her diagnosis. Three surgeries, three major doses of radiation. Terrible to contemplate. She also mentioned the possibility of metastasis to the lungs and bones, a horrifying fate that my morbid and melodramatic imagination immediately clung to. She was certainly writing at a low point, having just gotten through a third operation, but I'm a bit afraid to read any more of her blogs. I hope none of what I have posted has scared anyone. My goal is to make the whole process less scary, telling you what to expect and ways you are not alone, but I am not going to warmfuzzy any of it either. I guess it is a precarious balance.

Here is something that I have not found in any forum discussion or thyca blog yet: the inevitable thought of mortality that accompanies cancer has also influenced my thinking when it comes to children. Namely, when to have them. It is an extremely personal topic, but I think I am probably not alone in suddenly feeling pressured to cross those life-changing steps off the list a bit sooner than planned.

I have been married for almost two years and during that time have faced tremendous pressure from my family, my in-laws, my husband and my friends, all pushing for me to have kids. I don't know what it is that determines your readiness to become a parent, but I have felt quite resistant to it. I want kids, but I don't want them now. Except, thinking about my cancer, and how even if I am cancer-free this time, I only get a year of that status before I am tested again, I can't help feeling like I could be missing my chance. I am only 28, but is 28 with cancer still 28? Should cancer override my timeline? Is anyone else facing this?

When I was diagnosed last year, I wrote a lot about how I wanted to change my life, make it meaningful somehow. Since then I have taken on a volunteer position, spent more time with my family, and essentially spent a year doing the things I love: art, writing, biking. This is probably as carpe diem as I get. But maybe it is time to live a little less selfishly. No matter what my diagnosis on Wednesday, I feel certain there are major changes coming.

If the question is not 'Will I be ready?' it is “Will I be able?'



6.13.2012

Second Verse, Same as the First! (Thyrogen Injections and Radiation)

Or in this case, second dose. My second dose of Thyrogen was as uneventful as the first, in, slight pinch, out. I'm actually rather impressed with the efficiency of my last few doctor/hospital visits. Considering I had to sign over all my viable organs just to get an appointment.

Anyway, today I had my radiation and that was NOT the same as the first. No hazmat suits or long waits in scary cold hallways (helped not being hypo this time). I waited maybe half an hour and then they just handed me this rather pretty little glass bottle with rather pretty little purple pills inside (4 of them) and a bottle of water. No isolating me in a room with danger signs and making me wait another hour. And I got to be around people afterward. Although it is fun to chase your little sister around telling her you are going to zap her with radiation. Find the fun in cancer when you can. And when you can't.... make low-iodine brownies (YUM!). Yes, you even get to EAT after radiation this time!

As far as I can tell I am not experiencing any adverse side-effects this go-around. Though I was tired enough to take a three-hour nap, but that could be a number of factors, not the least being this blessed rain!

My mother is a bit anxious about her biopsy and I don't blame her. No one I know is too keen on being jabbed with giant needles. But again, that was a relatively easy procedure. Just a jab and then the local anesthetic kicks in. Still, I will be going with her, and if you have a friend or family going through something similar, keep in mind that this person is probably quite scares and that even the offer of going will mean worlds to them. My dad is going with me to my scan tomorrow. He will have to sit in the waiting room the entire time, but it means a lot just knowing he is out there supporting me. Cancer is certainly not unique, but there's nothing like it for making you feel alone.

Back to my mom: out of nervousness she has been asking me to explain the procedure in detail repeatedly, a comfort missing when I went through this process and the whole reason I started this crazy blog. If you want to know more about my experience of the biopsy, click here. She also asked me about how to feel or see your nodules, or in other words HOW TO CHECK YOUR NECK.



There are two sad and honest truths here. One: Even with a professional checking my neck, I had no idea what to expect or how to recognize that something was wrong. When she pressed against my nodules, I thought it felt exactly like a zit. Maybe a bad zit, but a zit. Two: My nodules were big enough that you could see them, but I still didn't notice. Look closely at my wedding photo above. Now I cannot help but see the strange bulge at the front of my throat, kind of like an Adam's apple. It is not there anymore. But I didn't think much of it at the time, just that my throat was putting on weight with the rest of me or some such nonsensical thought of dismissal. And nobody else noticed it either.

So it's not as easy as it sounds. There may be no signs or symptoms, or if you are like me and completely dense about your body, you may not recognize the signs and symptoms when they present themselves. If you feel around and there is a sore lump in your neck, that is a good indicator that you need a throat sonogram. But your best bet is to have a doctor check your neck for you. And have them do a blood test. Not one or the other, but both. My blood test (specifically FOR thyroid problems) was negative a mere six months before my  mother-in-law (obviously the superior doctor) discovered my nodules.

And one last tangent while I am on the subject of the medical industry. This one is a WARNING. Apparently, even if you get one or two FREE annual checkups a year through your insurance, your doctor could still try to scam you out of money! This is what happened to my dad: He went in for his "free" checkup and they did the usual poke and prod and then asked him some questions.

Now this is where my dad made a fatal error: he ANSWERED the questions. The doctor asked him about his CURRENT medications and health status and such and in ANSWERING my dad was somehow soliciting additional advice outside the parameters of a normal checkup (normal apparently meaning you icily stare your doctor down and plead the fifth). The doctor wrote up these questions as extra expenses and then my dad was charged an additional $115 for the visit, leaving the insurance company to cover $80 and my dad with a surprise $35 bill (not good for anyone when you consider the economy and national debt). For nothing. For nodding yes or no in response to questions. Good grief American Health Care, what is with you??!

I guess I will miss it when Albert Brooks' 2030 predictions come true and a consultation costs $2000. At which point I fully expect we will all walk around in our bathrobes singing "I am Henery the Eighth, I am"....


REVISION: There were some side-effects from the smaller dose of radiation. The day after my second injection, I experienced nausea, diarrhea, and headache, but they were mild compared to the side effects of the larger dose and did not last more than a few hours.

6.11.2012

The First Thyrogen Injection



Today I received $400 worth of medicine. In one shot. Good grief. I hope you have a better insurance plan than I. I get the other $400 worth tomorrow. The cost of Thyrogen is inhibitive (and possibly exorbitant) and you may be aware of my thoughts on this monopoly and the accompanying shortages, but in the end I felt the pros (not feeling sick, cranky, and out of my mind for 6 weeks) outweighed the cost ($800+). And I guess that is what they are counting on.

On to today's adventure....

What it was like to get a thyrogen shot.

After being poked and prodded and hooked up to a gazillion and one strange medical devices in preparation for surgery and radiation last year, I didn't expect to be nervous about a shot. For a while I was having my blood drawn on a weekly basis and I don't think I'll ever encounter a needle bigger than the one for my biopsy (hopefully). But I managed to keep putting off my doctor's visit today until the last minute and once there had to admit I was not thrilled to see the needle (though it is average if not small in size) and even less excited to learn I was to be injected in my hip (which I probably would have psyched myself out about if I'd known in advance).

But I am alive to tell you--it doesn't hurt. Not even on the level of a splinter or hangnail. I barely even felt the prick and there was no soreness or shock of pain afterward. The nurse warned me it might feel uncomfortable or cold going in, but I didn't feel that either. And I am NOT one of those brave suck-it-up-and-leave-the-crying-to-the-sissies types.

So fretters don't fret! Other than your wallet it really won't hurt a bit.


6.09.2012

Anniversary of Thyroid Cancer Diagnosis



It is one year to the day that I underwent my thyroidectomy.

To me, this feels momentous. A year ago, I was half convinced I was going to die. That I would be wheeled into that operating room never to return again. I suppose this is how every person feels the first time they undergo surgery. In truth, a thyroidectomy is not a terribly dangerous surgery and has a fairly low mortality rate. "Routine," your endocrine surgeon might even say (feel free to stick out your tongue at her when she does). But even when your feelings are not strictly supported by facts or statistics, they are no less valid.
Today is a quiet, internal celebration for me. I survived. I have lived one beautiful, meaningful, sometimes productive and certainly interesting year and I am truly aware that it is a gift. (Insert your favorite cliche about the lessons we are to learn from the trials we are given.)

I am a week away from finding out my cancer status.

Monday and Tuesday I go to the hospital to get my thyrogen shots, Wednesday I get my radiation, and Thursday I get my scan. I'm not sure when I'll get the results, but I'll be updating ASAP so you fellow THYCA friends can know a bit more of what to expect.

As you can see by comparing the photos taken immediately after my surgery and the one taken today, my scar has healed considerably. I barely even notice it or think about it anymore. I can almost (ALMOST) miss it, in the sense that it feels like I've lost my THYCA badge, the one that reminds people how prevalent this cancer is and how necessary to check their necks. I feel completely healthy. I have very few bouts of paranoia now, where I randomly become convinced that my trachea has somehow become detached, or my sore throat is the tumor growing, or think I feel a bump that doesn't belong.

All things considered, I'm happy and hopeful. And if I can get there....