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.

new york city part II

When you get close to Memorial Sloan Kettering there are subtle hints of suffering amidst this city of opulence—requests for donations of blood and platelets, fragments of conversations about cancer, and sick people walking the streets.

When I walked these streets years ago, I didn't see all of this. Then I hammered through my New York life in a fog, wanting to get to the next place really fast, worked up, and unaware of the hardships of a city and people—which extends beyond shopping, finance, museums and restaurants. The things we usually associate with New York. For this sobering experience, I will always be thankful.

Anxiety started to settle over me before the doctor came in. I began to pray for everyone in the hospital—receiving chemo and other treatments or reports. It’s powerful to pray for people you don’t even know in their presence.

So, as the details of my cancer are better left vague here—it mirrors the information I know. While my consult was well worth it, and I now have a treatment direction—a new set of questions and ambiguity have unraveled. Questions are sometimes never answered but decisions do need to be made. I trust and know that God will continue to guide my path towards recovery.

new york part I

Jeff and I were determined to have a good time in New York—even if we were going for my doctor visit. So off we went….

he, he, he. Here’s my steadfast driver, although he wasn’t too happy with me because I was in a crabby mood on the way down… sorry, honey

We got into town with plenty of time for enjoyment including a leisurely lunch at The Spotted Pig where of all things, our wedding song was playing in the background (and it’s pretty esoteric).

I bought Corduroy's Christmas for Owen (half price!). Owen and I LOVE Corduroy—and I love the way he says it: “Cord-Roy.” I was thrilled to see that “a bear-share” of the royalties from the book benefits psychological support for children afflicted with cancer. Way to go Corduroy!

Then I went on a therapeutic shopping spree at Anthropology for two “brighten your mood” pairs of earrings...

So, I’ve been obsessing about this drum at FAO Swartz that I saw in their catalogue for only $14. So we stopped by their 5th Avenue store. Owen has really been into music lately, so I knew it would be perfect. It’s such a classic toy.

(Here you can see some of my “deferred maintenance,” Owen’s very shaggy hair…. ). Then the center of my support (Jeff) and I went on a walked uptown through Central Park and then across town to Sloan Kettering.

scrambling

Christmas came early for me vis-à-vis a bumped up appointment at Memorial Sloan Kettering… I was absolutely thrilled (crazy as it is). Although I’ve been working with my doctors in Albany, I needed to go to MSK for their insight.

Without looking at my schedule or my husband’s, I quickly accepted the appointment. My only problem was that the night before, I had sent all my inner workups (my PET/CT scan on a disc and I-131 scans) via pony express NOT fedex, because I thought I had over a month to get it all down there, so why would I waste all that money??? I always use Fedex—but we’re in a recession, we’re supposed to be cutting back… right?

I found out at 5pm on Friday that my appointment would be in NYC that Monday. Due to the mail mix up, I quickly called the radiology techs from two different offices to locate all the “pictures.” Well, the techs call them “pictures” which to me is reminiscent of a first grade picture day. I supposed “pictures” don’t sound as scary as "scan."

I pleaded with each office twice and then apologized profusely for calling so late on a Friday afternoon. For a second time, I needed the disc burned and images printed out first thing Monday. By the grace of God, it seemed like it was all going to be possible. I knew that my appointment at MSK would be worthless without the images.

So Monday morning I went to fetch the pieces of me—little images and splices of tissues and cells in my body—most behaving, and some not.

Whether you can let yourself go there or not—seeing the inside of the human body is fascinating—the organs and bones working to carry out life and a silhouette that really looks as if it belongs to you.

So, everything was ready and packed up in our car to head to New York City. The basis of my condition comes down to: images, blood work and a few reports.

While away, Owen was cared for my father (who's just back from Texas—what timing) and my in-laws. Before I let him go—we had some “deferred maintenance” that needed to be attended to—trimming Owen’s nails, thoroughly brushing his teeth, filling out tardy paperwork for daycare and some generalized obsessive organizing…

Just need to be sure my nest is in order.

And then life seems ok.

Onward!

I’ve know cancer for almost a year and half now, and it was harboring itself in my body years before that. I was diagnosed one month after my wedding, so I don’t know much about being a wife without cancer. My husband, Jeff and I were together for years before we were married, so I do know Jeff before cancer. Our son, Owen, was 10 months old when I was diagnosed, so I now know less of half of his life without cancer. That number will continue to shrink, the older he gets. And my wedding anniversary will always be very close to a remission anniversary.

I started thinking about this when I went to my doctor this week and had to scramble to find childcare for Owen. Jeff suggested that we just take him to the appointment. Owen has been on the sidelines while I recover from surgery, ingest radiation or just breakdown and cry—and for the latter he always comforts. I didn’t want to bring him to the front lines. I would be harder for me than for a 2-year-old who just wants to play on the scale at a doctor’s office.

It would be hard to see my 35 inch toe head bounding around during the appointment.

I am grateful for a friend who had Owen over for a play date with his best 2-year-old gal pal—doing things that 2-year-olds should do. Not accompanying his mother and father to talk about cancer. Childhood should to be protected if and when it can. Not sheltered completely, but protected.

God is still working with me

My doctor called today with the results of my many tests.

I do believe that my cancer has been a spiritual re-birth and I am just not done yet growing. That’s what my doctor told me today when he called...

Well not those words, what he told me is: “the cancer is not all gone yet.”

In other words: I'm not done growing. It’s hard not to write about all the details, but I believe this blog will be a better place if I don’t. Because I do enough theorizing about my cancer, I don’t need another place or a public to do more. I’ve grown since my diagnosis last year and I do see things in a different perspective. I’m coming to terms that after all the tests in the world—things are often times inconclusive.

Doctors can’t constantly validate me, neither can tests. I can’t continually dissect what they tell me and how they do so. I do have more faith with the more experience I get, but I could get a lot more. I will work on that. God and I will work on that.

When I don’t know every single answer, I need to, more than ever—trust in God.

In the meantime, more treatment and prayer are in order for me.

Gratitude

Today at my nuclear medicine appointment...

A man in his 50’s delivered a lead lined box with radioactive iodine for patients to ingest. I was filled with gratitude. I believe that the lead box provides adequate protection against the radiation inside, but can you imagine transporting toxicity around?
I am grateful.

Then I thought about the medical receptionists that deal with all the bureaucracies of insurance companies, schedule tests, move appointments up, track down all kinds of records, and then write a little note just making sure I’m ok: “I know this is a lot of information to absorb, so please call with any questions.”

I am grateful.

And the radiation techs—yes they wear one of those nuclear medicine badges to monitor all the radiation that they are subject to and it’s “controlled” but still…Dealing with all the crazies who are hypothyroid and then these crazy patients emit radiation on top of it? It’s a hard job. Amidst of all of this, they still have time to give a hug (even after a little radiation).

I am grateful.

Doctors...People love to complain about them--They make too much money, have poor bedside manner, (which is really too bad when this happens) or some other derogatory term. Doctors put their lives on hold in their 20’s and 30’s to study medicine and if that’s not enough they are subjected to human tissue and infectious disease, work long hours, sacrifice family time, amass huge debt, and the list goes on.

Can you imagine if your job was to dig tumors out of the human body day after day? It’s certainly very rewarding, especially when you see people getting better, but face it, it’s hard work. Or what if it was your job was to look at images of tumors and other pathological conditions—all day? Call patients and tell them difficult news… Or be a primary care doctor who is so swamped with insurance paperwork and red tape that he/she can’t really give patients the time and attention that they need.

But through research, willingness to work collectively, learn every day, and practice kindness—many doctors are healing and listening. And that has to be fulfilling.

At least this has been my experience.

when it's all too much

HAVE A DANCE PARTY IN YOUR LIVING ROOM

This time is for me

I thought I’d share a reflective moment post-scan that hopefully illustrates where I am right now. I grabbed my camera to capture a moment after my son and husband left for the morning.
I loved how peaceful my dog looks in the background while I am letting off my son’s bubble gun. In this moment I am “anxious for nothing.”

I also took a few shots of my ferns. When I am anxious: prayer + my ferns= relaxation

Precautions…

Since I received a small tracer dose of I-131 right after my PET scan, along with no kissing, and there are various saliva precautions, etc. I told my husband that he would be the primary caregiver for Owen, and he woke up this morning saying:

“Here’s your primary caregiver.”

Owen is at the age where he really wants his mom, and I love that. Last night he wanted mom to read books—but it’s not a good idea since I’d be holding him, nuked up. Big things to remember when you’re emitting radiation is less time and distance (especially with kids).

This morning Owen wanted mom to change him, and it broke my heart...
...he loves his dad so much, but he’s puzzled as to why I’m not as close as I usually am.

Since I only received a tracer dose of I-131, I don’t need to be going crazy with these precautions. I’m probably being a little over cautious but I’d rather be that way.

Jeff had Owen for the afternoon and when they returned at 5pm and I stayed inside to make Owen’s dinner (with gloves on just to be really careful). Then we let him eat outside on his picnic table and I was able to sit on the porch, but wasn’t on top of him.

My other idea to have family time, but be able to keep distance from Owen was to go on a walk. This worked out well as I walked a few yards in front of or behind my boys. We walked to an open field where we could all run around—still having fun while keeping some distance.

Then it was bath time for Owen, stories and a “nice tuck,” sans kiss from me.

Rest of the night was processing time for me and a lovely feast of low iodine food. After my crazy day that involved a PET scan and the two diets at once (I really missed the carbs and for a PET scan there are no carbs in addition to the LID diet), I made fresh bread for myself and these delicious LID chocolate brownies (from the thyca website)—they were so rich you would never think they are low iodine!

Kissing Monster

I’m a kissing monster. So that’s why this part is always hard for me. I’ve received my tracer dose of I-131 for my scans and I can’t kiss my boys for several days due to radioactive cross contamination (sounds lovely, I know).

How can you resist not kissing this


This…

Or this….


“Be Still and Know that I am God” Psalm 46:10

Not a bad diet after all…

I'm on day 14 of the low iodine diet (L.I.D)...On my dinner menu: roasted chicken, orzo with parsley and garlic, and a salad of tomatoes and cucumbers. I can’t tell you how much easier this diet is during the harvest season since its main staples are fruit and vegetables with a moderate amount of grains and even smaller amount of meat. Banned items include dairy, seafood, iodized salt, commercial baked goods, soy, canned food (due to possible iodine used in processing) and red dye. But, I take great pleasure in eating all the sugar and wine that my heart desires on this diet. Given the circumstance—we all need a vice or two.

Last year, I was fortunate enough to also be on the LID during harvest season. I also remember that after week two, the diet gets HARD. There is no sense in complaining about the diet, but this is where I find myself dreaming of…


HoT DOGS (Normally, I don’t even like them that much)

Cheese (I think last year I had an international cheese fest after the diet that lasted for months, ha!)
Anything with real marinara sauce, not the stuff that I’ve had to create myself—which is a very watery tomato sauce made with fresh tomatoes.
A Thanksgiving Meal (not LID style). I guess it’s the hint of fall in the air.

The low iodine diet is used for three weeks in preparation for either testing and/or treatment with I-131 (radioactive iodine) which either detects (testing phase) or destroys (therapy phase) thyroid cancer cells. The 1-131 is administered orally, and along with surgery it is one of the only treatments available for the particular type of cancer that I have. It also happens to be a very effective therapy which is avidly consumed by thyroid cells with few side effects.

This blog is created to share my re-birth—spiritually, physically and emotionally since my diagnosis one year ago. Currently, I am gearing up for my annual tests.