2009 in Review

So what has happened in a year?  Let’s look back…

January – I brought in the new year with some hockey and some girl time… oh yeah, Katie and Brian were there too! It was a great way to start the

year – spending time with some of my favorite peeps! As soon as the celebrations were over it was back to work full force as I said goodbye to one of my staff and interviewed to fill her position.  At the end of the month my mom had knee replacement surgery and I took a week off to help her with recovery and therapy.

February – Was all about scrapbooking!  We held Crop for  the Cure 2009 to raise some funds for the 3 Day… we were all planning on crewing this year so we had no fundraising minimums.  The weekend after that, we attended Gwen’s weekend crop!  I got a ton done at hers, not so much at ours… c’est la vie!  Oh yeah, and Katie and Brian moved into their new house!

March – I decided I deserved a break and headed off to sunny Florida and the magical world of Disney. I should probably mention that my place had been on the market at this point for about a year… sigh… I was just trying to cut my commute by 20 miles.

April – My fabuloso birthday month!  I FINALLY sold my  place so of course i was consumed by finding a new place, packing, moving!  Also celebrated this month were Katie’s birthday, Grandpa’s birthday, Murt’s birthday, Jodi’s birthday and Easter!  Definitely a fun filled month with tons to celebrate!

May – Moved in May 1st and felt sore and achy after… while trying to massage out a knot, I found a lump on the front of my neck.  When it didn’t go away after a couple days I ended up at Urgent Care with the urgent advice to get an ultrasound and biopsy.  Within a week I was at the surgeon’s office and discovered I had a cystic tumor in my neck that was compressing my carotid, esophagus and trachea.   Even though the ultrasound showed it was most likely benign, I  needed surgery right away. Surgery happened May 26th.  The tumor was affectionately named “Bob.”  We also had a surprise baby shower for Ashley and I made my first “diaper cake”.

June – I had my postop appointment and found that Bob had been sent to the Mayo Clinic for further review – the local pathologists found what they thought was “Cystic Papillary Thyroid Carcinoma.” On June 12, 2009 I got the call that confirmed my cancer diagnosis.  Later that month we had to decide if I would be going back for more surgery and radiation – 2nd surgery was scheduled for Sept 1st.  We also welcomed Ethan Michael to the family and had a baby shower for Lacey.

July – Made the very tough decision to not participate in  the 3 Day.  I couldn’t pass the medical check because of my very recent diagnosis and surgery. Spent some time with Lacey while she was in from CO and had a superfun 4th of July.  Checked out Gilda’s Club and found it to be an amazing place for people affected by cancer.

August – Cheered for Vanessa and the Coconutter Strutters at the 2009 3 Day!  Also visited Aunt Pat on medical crew and Mayme at the hydration station.   I signed up for 3 Day 2010 to WALK all 60 MILES for the 3rd time and started brainstorming fundraising ideas.  Attended my first Thyca (THYroid CAncer) Support meeting, got my first mammogram (which had to be repeated), planned and prepped for surgery and RAI…

September – Surgery # 2 – this time my whole thyroid was removed to make sure every speck of cancer was OUT.  Had some complications with my calcium levels so my best friend became TUMS. I attended Bluebird Cancer Retreats and made some wonderful new friends.  And sometime mid month Chad and Allison got married! I began to experience the full effects of Hypo Hell as I anxiously awaited a date for my RAI – Radioactive Iodine Therapy. The date kept changing because of the worldwide RAI shortage but…

October – 1st – I got my megadose of RAI 200 mCi.  Spent the better part of 2 days at the hospital in the nuclear reactor dep… I mean nuclear medicine department of the hospital. Then I went into  isolation for a week.  The doctors say there are no side effects to RAI but you can tell immediately they have never taken it themselves!  I was experiencing a range of radiation sickness symptoms – NOT FUN.  My post RAI scan showed diffuse uptake in my lungs as well as my thryoid bed – was it metastasis? That is still up for debate…

November – brought with it my most favorite holiday EVER – Thanksgiving!! At this point I had so much to be thankful for… surgery & RAI being over, starting on thyroid meds and coming out of Hypo Hell, being back at work, appointment with my new endo, my 3 Day team growing to a size of 9… Life was starting to speed up again even if my body wasn’t quite there yet!  My TSH level is still hovering around 16 which means i’m still extremely hypo.  My blood gets drawn every 6 weeks.

December – Merry Christmas! This month was all about reconnecting to friends, family.. the whole world really.  The last 6 months have revolved around cancer and I'm so ready to get back to some semblance of normalcy.  Held my first individual fundraiser – Breakfast with Santa- which was so much FUN and raised almost $400!   Went back to the Endo and got some med adjustments, found out my tumor marker is undetectable (!!!), and that the uptake in my lungs is being considered metastasis but that my mega RAI dose killed that too!

It’s been a good end to the year and I'm looking forward to what 2010 will bring!

Happy New Year Everyone!!!!

Good Riddance!

Yesterday was the 3rd annual Good Riddance Day in Times Square.  People showed up from everywhere to bring that techie gadget that never quite worked right or wrote down their annoyances and problems from 2009 and tore, shred, or literally bashed them to pieces!  All this so they could usher in 2010 with clear goals and a renewed perspective. 

So in honor of Good Riddance Day, here are the things I am looking forward to leaving behind from 2009:

• The thought: "I can't"
• Pessimism - may need to be called out on this from time to time
• Clothing I haven't worn in forever and/or will never wear
• Disorganization & Procrastination - these often go hand in hand for me
• The 30lbs I gained from having my thyroid ripped out and metabolism obliterated
• Active Cancer Cells in my body

Now tell me, what would you like to bid Good Riddance to?

Merry Christmas!

I am spending the day hosting my Grandpa, parents and PBS & UB for Christmas dinner and I'm sure my first ever attempt at cooking a turkey and making stuffing from scratch will turn out beautifully. (crosses fingers) And that the turtle pumpkin pie I made tastes as good as it looks and smells... Mmmmm!

I love the holidays because of the extra time you get to spend with family and friends. Some people find happiness and fulfillment through their work and don't focus on their relationships. I often wonder if those people who focus on career above people will wake up one day and feel utterly lost and alone. I hope that that they have people who care and will be there for them when the brutal business world isn't. Personally, I think the relationships you have can reward you in ways a job never could.

My family and friends bring joy to my life and mean more to me than anything. This year, they have shown me they will be there for me when I am at my worst and have helped me forget my sorrows even if only for a few moments. I am so thankful that each of you are in my life. I truly hope every one of you feels as blessed as I do this year!

Have a very Merry Christmas and remember to give your friends and family an extra hug or two!

To Do List Revised

It is now about 11am on Christmas Eve… crunch time!!  My mission should I choose to accept it is to complete all these tasks by Jan 1st. GO!

Key: red complete 12/17, green complete 12/19, Blue complete 12/23 @ 11am

Christmas List: start shopping,  buy wrapping paper, Damstra party, plan food item for Slagter Christmas party, buy table decorations/plates/napkins, wrap presents, assemble/wrap employee gifts, finish shopping, attend immediate family Christmas on the Eve, attend Slagter Christmas, do Christmas cards, write year in review letter, Plan menu for Christmas Day Dinner (I'm hosting), ask Christmas guests to bring a dish to pass, buy groceries for Christmas Day menu, cook Christmas dinner, clean house for Christmas company.

3 Day Team Captain List: make Crop needs list, order cookbook kit, inventory event supplies, inventory raffle items, make a Crop for the Cure to do list, continue to drum up raffle donations, write letters to family/friends, design team logo, check in with team members, help team member make a plan for fundraising,  gather & type recipes for cookbook, design cookbook, pick up donation from Splurge Salon, collect garage sale donations from Lindsay.

Personal List: get blood drawn, pick up new script, endocrinology appointment, figure out what the heck I'm doing on NYE, movie with the fam, do laundry, organize files, print 3 Day 2008 photos, charge camera, clean out closet for garage sale, eat, sleep, email, facebook, blog…

Doctor Day

Well, PA Day really… I had my labs drawn last week and today was my appointment with my endocrinology PA (I see the actual endocrinologist every 6mos). 

I knew my TSH number was bad because I was called within 12 hours of getting my labs drawn to up my levothyroxine meds.  Today I found out my TSH was 16 which was up 3.0 from 3 weeks before that – not great.  What does that mean?  Well it means I was going more hypo which means any possible thyroid cells (cancerous or not) left after the radiation were/are working overtime trying to compensate which means they are overproducing/growing/replacing themselves.  This is why my meds were immediately increased. More meds (synthetic thyroid hormone) = tricking the leftover thyroid cells into not working overtime to produce the hormones that keep your body running. More meds = good thing!

The other big number that was announced today was my Tg or thyroglobulin level.  Thyroglobulin is produced and used by the thyroid gland to produce thyroid hormones. This test is also the tumor marker test for thyca patients meaning you need the Tg to be undetectable in your blood…

My Tg is undetectable! Very good news!

The PA said that means the mets to my lungs were also killed by my dose of RAI.  Very, very good news!

Its too early to be declared cancer free of course.  Normal cancer patients need 5 years of clean tests before you can claim that milestone.  For thyca patients there is some debate in the medical community on when we can be called “cancer free” because it is relatively common for it to come back 10, 20, even 30 yrs later. 

For now, the news of my undetectable Tg brings tears to my eyes. I have a feeling no present under the tree will measure up to that news this Christmas.

I Love My Mom

Actual encounter with Mom today:

Mom: “Oh! Did I tell you about that… no, I told Murt yesterday… I should really tell Katie too…”

And then she walked down the hallway where I could hear her telling her story to Katie.

My dad and I just looked at each other and laughed.

Breakfast With Santa

This morning I had my Breakfast with Santa fundraiser for the 3 Day for a Cure.  It was held at Applebee’s and guests were treated to all-you-can-eat pancakes, drinks, face painting, candy canes, writing letters to Santa and of course time with Santa and Mrs. Claus!  With the tickets sold and very generous “tips” we made $380! I know it was an absolute blast for everyone working and I heard really positive comments from those who came to eat breakfast too!  Who knew Applebee’s could make top notch pancakes?!  Thank you to the Wyoming, MI Applebee’s for being so very gracious to us and providing fabulous food!

To Do

I have so much going on right now its hard to breathe sometimes. Since I'm not going through treatments anymore, people think I should be all back to normal but we’ve still got a long way to go before my levels are regulated and I can go for more than 6-8weeks without seeing a doctor or getting my blood drawn. I’ve already mentioned that I'm exhausted but my schedule is probably not helping either.  My current schedule could make just about anyone cry, not just someone who is hypo and dealing with cancer aftermath!  Add in my 2 jobs with their own to do lists and we have a ton of fun going on here!

The following is my to do list as of yesterday for the last days of the year. Items crossed off have been completed as of Thursday (items crossed off and green have been completed as of 12/19):

Breakfast with Santa Fundraiser (12/19) List: confirm Santa's helpers,  purchase: candy canes, crayons, coloring books, paper for letters, face paint, color printer ink, hats for helpers, basket for candy canes, get Santa & Mrs. Claus costumes, find envelopes, turn in paperwork to restaurant, organize/wrap door prizes, assign helper’s duties, print Crop for the Cure flyers, print photo cards, make Santa mailbox, manage guest list/RSVP’s, make tip/donation jar, upload photos to group site, get cash box.

3 Day Team Captain List: make Crop needs list, order cookbook kit, inventory event supplies, inventory raffle items, make a Crop for the Cure to do list, continue to drum up raffle donations, write letters to family/friends, design team logo, check in with team members, help team member make a plan for fundraising,  gather & type recipes for cookbook, design cookbook, pick up donation from Splurge Salon, collect garage sale donations from Lindsay.

Christmas List: start shopping,  buy wrapping paper, Damstra party, plan food item for Slagter Christmas party, buy table decorations/plates/napkins, wrap presents, assemble/wrap employee gifts,finish shopping, attend immediate family Christmas on the Eve, attend Slagter Christmas, do Christmas cards, write year in review letter, Plan menu for Christmas Day Dinner (I'm hosting), ask Christmas guests to bring a dish to pass, buy groceries for Christmas Day menu, cook Christmas dinner, clean house for Christmas company.

Personal List: get blood drawn, pick up new script, endocrinology appointment, figure out what the heck I'm doing on NYE, movie with the fam, do laundry, organize files, print 3 Day 2008 photos, charge camera, clean out closet for garage sale, eat, sleep, email, facebook, blog… Ok to the last 5 are a bit of a cheat but I felt like I needed more than 1 “personal” item crossed off!

Forgive me if I have a panic attack/crash into a stupor for a couple hours/come down with something/don’t respond to non-urgent emails/forget everything… I really do have a lot on my mind!

Where Did It Go?

Have you ever lost something really really super duper important?  You search through your home, your car, your office, your mind… hoping just to catch a glimpse of said thing.  Your home, career, life depends on finding one tiny thing. How is it that a tiny singular thing can have the power to send you into a full blown panic attack?

I was so there tonight…

Interesting Theory

As a cancer patient, one of the things that seems to be a burning question on everyone’s minds is: How did you get it?  I don’t know that most cancer patients would be able to give you an answer other than a slightly sarcastic: I’m defective.  It is a natural curiosity to be sure, but really what do we know about cancer cells except they are our own cells that went haywire at some point? 

In the case of thyroid cancer the one major known cause is exposure to radiation at a young age – with studies citing the use of x-rays to treat things like acne in the 1950’s.  (Apparently x-rays were a sort of cure all?) Well – newsflash – my mom was barely around in the 50’s! And I most certainly wasn’t. 

What I did have, however, were a couple CT scans when I was in high school.  They were Head CT scans to boot. See I had some sinusitis issues back then – I have passageways the diameter of a pencil lead according to the ENT – and they were doing CT’s to evaluate the extent of my problem.  Could this be where my radiation exposure and resulting “rare” cancer came from?  Could it be because cancer is extremely prevalent in my family and I was bound to get it somewhere?  Could it be because I drink diet pop? Could it be because I didn’t eat peas when I was growing up?

Does it really matter where it came from once you have been diagnosed? 

Quite simply: NO.

What a Bloody Day!

I spent the better part of the morning researching blood related disorders and diseases – the likes of myelodysplastic syndrome and leukemia.  Then I had tomato soup for lunch.  Now i’m gearing up to get my blood drawn in prep for my endocrinology appointment next week. Later tonight I will be going to New Moon (2nd movie in the Twilight Series) with my girlies...

I thought it was pretty funny, don’t you? :)

Will I Ever Feel Normal?

Right now I know things are off because I'm still in a very hypothyroid state because my meds are off, but thinking back over the last few years I realize I can’t remember the last time I felt “normal” or “good.” 

More often than not, I've felt like I have no energy, always feel like I'm coming down with something, and need to rest more than the average person.  I’ve envied friends who flit here and there and just plain get things done.  On the flip side, I've had occasional stretches where I've been overly anxious about everything.  I knew I was being irrational but I could not control the crazy thoughts or complete meltdowns.  I could hardly stand myself and don’t know how others could deal with me.  While there was “nothing wrong” with me, I have a strong suspicion that my thyroid hormones have been completely out of whack for years now.  They say thyroid cancer is very slow growing so it makes sense in a way…

To solve my no energy problem, people tell me to just add some more exercise to my routine.  They just cannot understand this level of exhaustion or the fact that if you push too hard your body completely crashes.  In the past years I've trained to do the 3 Day, walking an average of 20-30 miles a week and while I've felt physically fit I've still been exhausted.  More often than not, I'd come home from an easy 5 miles after work only to completely crash and sleep for an hour before showering, eating dinner and then going to bed for the night.  My body just could not handle it.

I was reminded of this today as I was trying to finish [and start] my Christmas shopping.  I’m too tired after work to fight the crowds – and - let’s face it the weather hasn’t helped out much either.  After 4 cups of coffee with breakfast, I was on a mission.  I made it approximately an hour before I felt myself crashing and I think I pushed through another 2-3hours of my dad being a girl about ill-fitting pants [aka not wanting to go up a size] before heading back to my parents place.  I was shivering uncontrollably and after loading up with 2 layers of blankets I fell asleep for 2 hours.  It was absolutely ridiculous! 

I’m really hoping that once my levels are corrected I will start to feel “normal” again.  For now I guess I just have to pay attention to signals my body sends and always be near a comfy chair or couch for those naps!

More Research Needed

Ok before you read this post, I highly suggest watching the video posted earlier today.  Its yours truly and a few members of my Susan G. Komen 3 Day for a Cure team – the Pink PediCures – just trying to spread some holiday cheer! :)

If you read my post a few days ago, you are probably wondering if I did some research on the “getting pregnant after cancer” issue. I’m not planning on this anytime soon mind you but the more I'm learning, the more I realize it may take extra planning. (Still taking applications for Mr. Right, btw)  I did.  Bottom line is thyroid cancer is so rare and more common in older women that there is still much more research needed on the subject – BUT – I was able to find a couple studies on thyca patients and more info on thyroid patients in general in relation to pregnancy.  From the few studies I did find, these are the tidbits that seem to stick in my brain:

• As said before I cannot get pregnant for a year after taking my therapeutic RAI dosage and if pregnant cannot get a scanning dose of RAI because of radiation exposure to the baby.
• For the fist 10-12 weeks, the baby has no thyroid and so exclusively uses the mom’s thyroid.  Since I have no thyroid, the monitoring of my medication dosage would be critical so that myself and the baby would not have too little or too much thyroid hormone.  It is not uncommon to have to increase your dosage by 50% or more during this time.  The dosing is completely critical - If I have too much thyroid hormone during pregnancy, it can lead to fetal growth restriction and stillbirth.  If I have too little thyroid hormone, it can lead to intellectual deficits.
• You can’t take pre-natal vitamins containing iron and you can’t take the vitamins within 2-3hours of taking your hormone because they interfere with the absorption of your thyroid hormone pills.
• If my thyroid hormone isn’t properly regulated, it may be difficult for me to get pregnant.  And if I do get pregnant, my chance of having a miscarriage is higher than normal with some studies citing a 40-50% chance of miscarriage.

So basically while it isn’t impossible, it may be difficult to get pregnant and carry a pregnancy full term and I should plan ahead and have very close monitoring and follow-up during.  I wonder if this qualifies me as high risk?

Merry Christmas from the Pink PediCures

Send your own ElfYourself eCards

Coffee Prevents Cancer?

When I saw that headline of course my interest went up!  Hey, I like coffee!! I drink it almost daily with a little sugar free caramel vanilla flavored creamer.  I would love to get me a lovely coffee house special drink every morning but alas, that is too expensive for my budget! 

So why if I drink so much coffee did I still get cancer?  Maybe it was because I didn’t start drinking coffee until I got a job on 3rd shift 5 years ago?  Ooooor maybe its because I hadn’t read the article yet?  Yup, it was the last one.

A new study showed that men who drink coffee can cut their risk of aggressive prostate cancer by 60% if they drank 6 or more cups a day.  SIX CUPS?!  Oh ok, if they drink 1-3 cups a day they cut their risk by 20%. I was going to say… a lot of men will now be walking around buzzed out of their minds on caffeine! Oh but decaf has the same effects. 

Hmmm sounds too good to be true to me but hey if coffee would help in any way, I say DRINK UP!

Kinda Down…

Probably stemming from being too stressed out from work and then also being sick (sore throat, stuffed nose, yay fun) but I've been down for the last few days.  Then tonight I log onto one of my thyroid groups that has been busy the past day or two to find a posting about thyroid cancer and pregnancy.  Apparently, getting pregnant after this particular cancer is difficult and has to be managed very carefully because the thyroid plays a big role during pregnancy. (or so these posters were saying…) I haven’t had time to do my own research on the subject yet so I'm trying not to let it get to me too much.  Its not like I'm in a place to even try to get pregnant right now (Hello Mr. Right, I'm taking applications!) but have always thought maybe someday… I guess I have to remember my earlier post about letting go and letting God take this one into His hands.

RAI Shortage

I alluded to the shortage of radioisotope in an earlier post, but apparently the situation has gotten much worse.

The radioactive iodine isotope (aka: I-131, RAI) is pretty much the only treatment for most thyroid cancer patients and it is the only treatment that has had excellent results.  See, thyroid cells suck up iodine like it’s their job (well it kinda is their job) so using radioactive iodine is an extremely efficient and targeted therapy that kills pretty much only the thyroid cells in the body while leaving the rest of the body untouched.  Traditional chemotherapy on the other hand is pretty much poison to the entire body which is why many cancer patients get extremely sick while going through chemo.  Thyroid cancer does not respond well to traditional chemotherapy agents and external beam radiation is extremely rough on the other delicate structures of the neck so that is used as a last resort… so really I-131 is our only option to try to fully eliminate our cancer cells and reach that wonderful “cancer free” status.  Not only that, but our yearly scans are done with a tracer dose of RAI. (because any pesky, lurking thyroid cells will suck it up and light up on the scan)

So anyway, back to the shortage… I was told there was a shortage (when my RAI was pushed back a week) because a Canadian nuclear plant was “offline” (since then i’ve learned this is a permanent shutdown) so my tracer dose and possibly my treatment dose of RAI came from South Africa.  Apparently the shortage is getting worse… the American Thyroid Association reported that physicians now need to “prioritize” those who get the isotope.  The report says that some areas will get no shipments until next year!  I feel for the patients in the process of going hypo who may have to extend this torturous process.  I feel for the patients who may be in the “marginal” category for getting RAI because if there is any question/doubt if they need it or not they may not receive it. I feel for those scheduled for their follow-up scans will get bumped in the hope that more isotope will be available in months to come…

Being told you have cancer is stressful enough but when your only treatment option is getting harder to come by there is a sort of panic that starts to build.  I was lucky enough to get my RAI dose earlier this year but what if my tumor markers show persistent disease in the coming months?  Will I be able to get a second treatment dose?  Will I even be able to get a follow-up scan next year?  Maybe it’s time for the medical community to find another viable treatment option?  Maybe the nuke people need to get their acts together and get those reactors working again?

Only time will tell…

Tales From Thyietnam…

Came across this podcast about thyroid cancer featuring web-friend and fellow thycan Kairol Rosenthal.  It was posted on Dear Thyroid (a blog about thyroid disease) and offers an interesting inside look at the life of a thyroid cancer patient. 

It’s a bit long but well worth a listen if you want to understand this disease. Also, I just love the title of the podcast: Tales from Thyietnam… truly illustrates the feeling of being at war with your thyroid!

Lots Going On!

The holidays are upon us and things are starting to get super busy around here.  As such, I'm going in a million directions and so are my thoughts. This is when I start making lists and color coding my planner…

1. Here is my planner- color coded with multiple colored post-its… 

2. Now that winter has arrived (aka cold and soon to be snow), my hands have cracks all over no matter how much lotion I'm using and I have never been soooo cold in my life! (stupid hypo!)

3. My brilliant idea to buy shatterproof ornaments was foiled by the even more brilliant kitties in the house.  They are still targeting the glass bulbs which I find in the kitchen daily.  If you are wondering why the kitchen…why because I have laminate wood flooring there and the bulbs go sailing into the cabinets making a cool [THWACK!] noise of course! So far no breaks… (crossing fingers)

4. I feel like I’m on the edge of so many things right now and I'm finding it hard to be patient!  Many things are hinging on other people and other decisions.  Hopefully there will be more to reveal in time but for now things must remain quiet on much of it… which is REALLY hard for me because I'm an open book!  Maybe that will justify the days when I don’t post something?

5. There was a slight mishap with Christmas this year… I went down to my storage space to find that a major leak had sprung in the unit next to mine totally soaking my box of decorations!  My dad and I were able to rescue many items but others were just too smelly to salvage.  I would not give up my nativity scene though I did have to coat it with Febreze!  I’m a minimalist when it comes to decos for any holiday so the loss of the various stuffed Christmas beanies was not too difficult.  It was hard to throw away the smelly, moldy, angel… but I found a perfect star instead!

6. I think I'm going to try out the granny pill box for a while.  With the hectic season I'm bound to get less sleep and be on the go more than usual making me more forgetful…and if I miss doses and get more hypo that could be disaster for my immune system when I'm out and about!

7. I’m working on a big 3 Day for a Cure fundraiser for December 19th – Have Breakfast With Santa! If you live in the area, come join the fun!  Your $5 ticket includes breakfast, pictures with Santa, face painting, and more! All proceeds will go to the 2010 Susan G Komen 3 Day for a Cure! 

And the final word of the day comes from my Grandpa (fitting since Christmas is coming in just 24 days!)…