my (very brief) thyroid cancer story

This is my less than ordinary journey through papillary thyroid cancer. Papillary thyroid cancer is known as “the best” type of thyroid cancer to have—basically because it’s a ‘garden’ variety cell and is well differentiated—meaning that it’s more like a normal cell then a poorly differentiated one. It’s also usually very slow growing. But not all papillary behaves so cordially. First of all, there are several subtypes of papillary and a few of those can be a bit more difficult to treat than just plain old papillary.

There is the possibility that papillary can, over time, change into a different, more aggressive cell type then what it started out as. Like any other cancer, there is the chance that it can spread—even though these numbers are pretty low, it does happen.So, without getting into every little detail of my experience like how many lymph nodes were affected (ok, so there were quite a few) what my thyroglobin level (which in my case is the cancer blood level) was and is now—it’s not a zero, YET—you can assume that it’s been an atypical experience.

I’m not sharing all the minutia, because besides select friends and family, who really wants to read a dictated report of your trip to Dr. X, Y & Z anyway? This is about the process of healing, snapshots of choosing to live a life above cancer and the cast of characters that support me along the way.

sharing good news!

So, I’ve had a turn of events… just as I was gearing up for radiation it was decided by my doctors not to do it (after reviewing tests)! I do still have a level of cancer that is detectable on a blood test, but the doctors at Sloan Kettering feel that the level is low enough to not treat and it should, in theory remain stable for a long time. I take a drug (well it’s a slightly increased dose of synthroid—which is a thyroid replacement hormone) so that I am a wee bit hyperthyroid. Keeping me a little hyperthyroid actually suppresses the cancer and creates an environment that the cancer does not like to be in—meaning that it is a very effective therapy in and of itself. Ahh, the “joys” and confusion of thyroid cancer!

I'm overwhelmed with a mixture of emotions. I was ready to get every inkling of cancer out of my body. But, at the same point, I really trust the doctors and don’t want to do radiation flippantly. And of course, it’s really nice not to have the radiation—which does carry negative side effects. If my level remains stable, I will formally be in a remission! I HAD to ask my doctor if I could have another child and he said that if things look good in 6 months, YES! So, that's is something nice to hope for.

In the meantime, I have questions for my doctor brewing in my brain. I’m going to store them up for my appointment in six months. I know all the main stuff—it’s just my crazy brain that is thinking of all kinds of ancillary thoughts. I am not quite over that stage yet, I haven’t been able to put the cancer out of my mind yet, but I will.

So, here begins a new blogging chapter—so far I’ve toggled between cancer, motherhood and other aspects of life. But now, I hope there will be less cancer news/talk. I will always be grateful for what cancer has taught me and aware of the impact that it has on my life. Thank-you everyone for your support and I hope you’ll keep reading as I continue to find my grace...

making sense of it

My treatment has commenced. This week involves three days in New York for tests and pre-treatment work. It’s a three week “process” and I am nearing the end of week one.

On Tuesday I witnessed the inauguration of Barack Obama in the Sloan Kettering Nuclear Medicine waiting room. To be trite, it was hopeful, moving…. And it wasn’t only for the evident progress of our country and the historical significance of this day. While all eyes were glued to CNN, a Sloan Kettering motorcade paraded through the hospital. The entourage included pediatric cancer patients, their secret service agents (nurses), and a homemade white house and presidential mobile built on radio flyers. We were transported from our own fears as we looked into the eyes of these brave children. We held back tears, so that we appeared strong. We waved and clapped to our dignitary patients, and when they were gone we could cry. No matter who you voted for, the election of President Obama is evidence to every patient “that all things are possible to those who believe” Mark 9:23

President Obama’s work and inherited problems are burdensome. Our industries and infrastructures are reddened with malignancies. As the children marched away, celebrating and encouraging this new president, I pray for what he can do for them. I trust in the conception of a better health care system, more money to be directed to notoriously lower funded cancers (sadly many of these are childhood cancers) and that with God beside him, Obama can give our children (especially our dignitaries) hope.

a new year, and the new plan

The holidays have a great way of distracting me. It comforted me to think, “I can deal with my health stuff after the holidays...” At least I had the holidays to consume my thoughts and my energy. But I came back to work on Monday morning with a foggy feeling like I forgot something. At work, I am catapulted back into my life—and remember what I forgot while on my siesta—there are emails that remind me about the troubled economy, my to-do lists, and little scratchy notes about Sloan Kettering. The holidays can no longer distance me from my reality.

A nice reality on the first Monday of the New Year has to be the Low Iodine Diet (LID). AHHH, just while every other diet crazed person is doing the same, I too I am following the herd. This is the first time ever that I’ve been on a New Year diet—but this of course is no ordinary diet—you can’t stray. But, this is my THIRD time on the LID diet (first time for treatment, second for testing, and third for this treatment). I am comfortable with all the prep work/cooking involved and sometimes I really get into it. I even now, have a few favorite LID recipes and a semi-permanent LID cookbook with my other cookbooks (I hope to remove this imposter soon).

This diet is a medical diet and it’s used to prepare and starve my body of iodine, so thyroid cancer cells will avidly consume radioactive iodine during treatment. It usually lasts for three weeks, but because I’m crazy, I do it for four weeks. I think I do it so I can prove to myself that I can do it, and because I want those thyroid cells to be STARVING for iodine. To read more about the LID go to this post.

One thing to be said for this diet is that when you are on it, you really feel that you are doing something. You feel in control of your cancer and it’s kind of fun to think of the cells starving and then getting tricked into gobbling up radioactive food instead. It makes each day on the diet easier to think on this.

Ok, so early in December was the last time I even mentioned the "C" word, so what’s the deal/ plan? Since I’m on the LID, there is in fact a plan! I decided to move my care down to Memorial Sloan Kettering after a lot of back and forth—mostly due to money and contract confusion with my insurance company.

When I decided to move my care down there, I thought I would have to pay $3,500—but to my surprise, insurance came through on Dec 30th and they are paying for everything at MSK, at least for now. In addition, a very kind soul offered her apartment in New York for me to use as I wish over the three testing/treatment period. The amazing thing is that I’ve never met the owner of this apartment, but she heard my story and wanted to help.

I am blow away by the grace of God and the intervention His will on my situation—the compassion of a stranger and the great turn of events with my insurance company. What gifts I have received, worries elevated, and spirit renewed!

my new year wish

My wish is for peace, both for me and for anyone else or any thing that is trying to achieve it. If I could obtain true peace, 2009 will be a success. I constantly fight anxiety and I'm tired of it. So, peace in '09 it is.

Jeff, Owen and I spent a very special first day of the year together. We went to Vermont to cross country ski/snowshoe with a pulk (sled) for Owen. It was COLD, and I thought about sissing out because my mother-in-law reported that conditions were arctic.

The cold wasn't too bad because the place that we went has beautiful trails through thick forest, so you are protected from the wind. Best of all, it was sunny and all the trees were dusted with powdery snow. Owen loves the pulk. This picture is actually from last year, but you can get the idea.


This year was different because I took a tumble on a hill, right onto my tailbone and Owen laughed HARD. I don't think he would have really gotten that giggle last year! Also, Jeff had to pull about ten pounds more of Owen!

I left Vermont feeling less anxious and ready for 2009--so happy for my time with my boys, the glow of exercise and the peacefulness of nature. Wishing you all a most blessed of New Years!

new year's eve party

I threw a New Year's Eve party for Owen. We even had a few presents I left over from Christmas. One of these presents was a cardboard house that I decorated late into the night on Dec 30--I painted it, and it was so rewarding, I just couldn't stop.


On New Year's Eve we awoke to the most enchanting snow fall. Jeff was working until Owen's nap time, so it was just me and my geezer for our New Year's party. I ordered a special gelatto cake and Chinese food, both of which were delicious. I was proud of my decorated home. I hung streamers from the ceiling the night before...

But most of all, I so enjoyed this special time with Owen. He was such an important part of my year. It's funny that when I thought about MY year, many of my thoughts were about his--let's just say, "on his behalf." We toasted with sparkling cider with over a dozen cheers.

And after he was tucked in bed, Jeff and I went to a party at a friend's across the street. It was just perfect.

Christmas by Owen

HELLO, Santa, I see you coming!


ALL of the cookies and carrots are for me, not Santa or the reindeer


I have a feeling this guy is related to me.

My new bike, worth more than mom and dad's put together!

Got my guitar and went Axel Rose!

Dinner of butter, followed by chocolate, chocolate cake

Merry Christmas!

a little tiny snowman

Past week: snow, ice storms
that knock out power for three days, insurance calls, and a toddler who does not like the camera, but here are some photos.....

Look mom, I built a tiny snowman and I'm adding raisin eyes!

I wonder what would happen if I eat this raisin.

Yes, I bribed Owen with chocolate chips for this picture. And it didn't even make the Christmas card cut! The things I said I would never do....I love this picture but I thought I needed a semi-smile for the card--and that's what I got.

and it happened....

One of my worst possible fears as a mother that is… Let me start by saying that Owen is totally fine throughout and after this incident (although I wasn’t).

Let me digress for a moment, some of my anxieties about having cancer have manifested themselves into nightmares about Owen being in harm’s way. It’s some kind of Freudian displacement, or something like that. My reoccurring nightmare is about Owen getting out of his crib in the middle of the night and helping himself in chocolate milk or some other snack in the kitchen. I started having this dream when he was a year old and he wasn’t even walking then—hence it wasn’t even possible). I went to an acupuncturist who told me I should go to a “dream worker,” which is just a little too “new ageie” for me. So, the dreams are just bottled up now despite my bets efforts and come back every now and then.

So, this very much felt like a nightmare. I was switching cars with my mother-in-law and Owen got locked in the car with the car running OUT of his car seat (all the windows were rolled up too). It’s too complicated to explain how this happened, but it was a complete fluke. I’ve always heard of this happening and tried to be vigilant—like I never let Owen hold the keys to the car, etc. But all my best efforts couldn’t prevent this.

After the shock and screaming of obscenities, I went to look for my cell phone in my car (which was unlocked) it was nowhere. I couldn’t even bare to see the little face of my two-year-old locked in the car. It was such a vulnerable moment and I was so fearful. Worst of all, I felt completely out of control, especially without a cell phone. I looked 100 yards each way—I had the choice of running to a dark highway, running to a convent (yes, we were switching cars in the parking lot of a convent) OR attempting to break the window myself. My flight or fight response kicked into full gear. I looked for possible weapons around the car like a rock—nothing. I went into my mini van to retrieve a stainless steal coffee mug and started attacking the driver side window. My efforts were fruitless, so I grabbed cross country skis from my trunk. I forgot how light cross country skis are compared to downhill, but I decided to give it a try anyway. I got a running start while my mother in law looked on panicked, and used the skis like a pole vaulter. I couldn’t break the window. I threw the skis on the ground and ran for the quiet convent.

While running I was screaming for help and worried that no one would be around. I rang the doorbell of the convent incessantly and finally a woman (who I believe was a nun) came out. She called the police and then came out to help. Her calming presence was a relief. She came out and talked to Owen along with my mother-in-law. If I tried to talk to him he would start to cry, it’s something about being yourself more with your mom.

The policeman arrived, and Owen’s eyes widened with curiosity. The officer was alarmed by the situation and I immediately begged him to break the window. I didn’t know he had that ability or not, but I thought he probably did. He tried the whole locksmith route and I quickly rejected that. Owen had already been in the car for 20 minutes, a locksmith could take another 20 minutes, maybe longer. The police officer decided that given the circumstances, he would break the window.

My mother-in-law gave the ok for him to break the window, since it was her car. It took the officer at least five tries with a special tool—so I don’t know what I was thinking with my cross country skis. At this point, Owen was scared and started to cry. I got him out and held him tight, “He said, “hoodu” which means “hold me.” And then he latched onto me like a koala bear and wouldn’t let go.

Only later did I think about what the officer must have thought about the skis strune on the ground or if he put them in his “report.” Or what the nun thought of everything, including the skis. One thing is for sure, that while I acting swiftly, I wouldn’t have changed my plan of attack. Maybe I could have been a little calmer, but I don’t really care about that right now.

If you have children, talk with your husband or partner about how you’d handle these kinds of emergencies—I think the big ones are: choking, head trauma, and I would add a car lock out too (for a young child). The chance that you will be alone in “a situation” is high. I wish safety and protection for all, and I hope that you never actually have to use your devised plans.

And God, "Thank you for sending a nun to me."

I’ll balance bill you

I’ve been neglecting my blog because in my spare time, I’ve been busy talking to two different insurance brokers, two insurance companies, and pestering three doctors and their secretaries. I’ve been trying to decipher the difference between HMO’s, PPO’s and POS’s, in-network vs out of network, and my favorite—balance billing. Stuff that many patients deal with at some point, although, I’ve not had to, until now when I want to go out-of-network using my POS. Basically my insurance company is poised as a gatekeeper, and THEY will decide if I want to go out of network. This makes me want to say that they are a bit (ok a lot) evil, but I haven’t heard the final outcome, so I’m being Zen about the whole thing.

I have a good ability to get to the bottom of things, but this is taking a toll on me. I consider myself a fairly intelligent person, but the loop holes and bureaucracy have left me deflated. On top of this, I have a deadline—Dec 15th. Because if my insurance doesn’t approve out-of-network care, I will need to buy a plan through my husband’s business by the 15th. This will involve switching my husband’s and in-law’s insurance (oh lord, help me) because they all get coverage through his business. I currently get my insurance through my employer (paid 100% by them). So, if I did go over with my husband, I would be forfeiting a huge benefit and then paying out of pocket for my share.

I’m hopeful, because the things that have worked out for me seem to do so at the very last minute. I’m also being peaceful because I’ve seen some pretty impossible stuff fall into place.

thanksgiving

Thanksgiving took us to an Inn in Dorset, Vermont with the grandparents, after I ran a Turkey Trot 5K.

We played with puppets at the Inn.

And took a family photo (this is NOT so easy to get anymore).

Stopped by a Christmas tree farm to chop down our tree… This has been a longstanding tradition in my family to get our tree the day after Thanksgiving.

I have one grievance about the farm. All of the trees had been over pruned into perfect triangles. I was looking for a mangly Charlie Brown tree and the owners just laughed! I guess that's not the en vogue look for trees this year. Maybe next year.

Happy thanksgiving everyone!

pre-thanksgiving crafts

Owen is starting to craft and I couldn’t be happier. I’ve proudly displayed hand turkeys made by Owen in our kitchen. Owen says: “hANd Turkey.” (with an accent on the A and N that makes him sound British)

I have a crafting book for toddlers and I’ve learned that I have to start collecting and holding onto all kinds of crazy stuff that I would normally throw away to use for craft projects like: dried up markers, shoelaces, cork screws, bubble wrap, containers of all sorts, pasta (wagon wheels and rigatoni), white paper plates, cotton balls, the list goes on. If you know me, you know that I HATE to hold onto stuff, especially items that appear to be garbage, but if we want to craft, I have to be a pack rat. And then there are some crafting staples that I have to buy like, pipe cleaner, googley eyes, feathers, felt. I have a running list that I’m slowly chipping away at.

Then you need to organize all of this stuff. This is the only way I can keep my sanity. So, I had an excuse to go to Target for clear storage containers for craft organization.

So, Owen is 2 years and 3 months now and the crafting has been moving along at a faster pace, thanks to a kid sized table from babystyle that I had been obsessing about for awhile. Oh… I love this table because it's covered in polka dots, one of my most favorite things! and the chairs can support up to 200 lbs of an adult! or turkey, monster, whatever.

Here are a few favorite crafts right now. Painting….

threading rigatoni onto a thick string, this kept him occupied for awhile.

But this was the biggest hit of all. Something that I’d only do now because I enjoy life more and I sometimes throw my previous inhibitions out the window.

It's along the lines of ok, so Owen you want to go get ice cream, let’s go…jump on the bed before bedtime, I’ll hold your hand…. Want to draw on your face?! ok, I'll help you.....

Let’s make ourselves into CATS! Meowwww!!!!!!!!!!!!!!

By the look on his face—this was so worth it. Life is more fun when you’re impulsive.