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!)…

What to do…

There are days when I find that I can hardly remember what I did 10 minutes ago let alone what I did first thing upon waking up.  So, when I get home from work and think to myself “gosh self you seem tired today… oh crap, did I forget to take my ‘anti-cancer’ pill today?” I find myself in a pickle of what to do!  Do I become an old lady and start using my handy daily pill dispenser so I can remember if I took my pill or not?  Would it really make a difference if I did? 

Here’s the thing, my pill should be taken 12hrs after last eating (empty stomach) and you cannot eat within 1hr of taking it and there are several other medications/vitamins/foods that you cannot take within 4hrs of taking the pill.   So really, the only time you can take it is in the morning. 

What can happen if I take 2 pills the next morning? Well in a sense I can OD my body on thyroid hormone.  I can have heart palpitations, have anxiety attacks, insomnia… basically everything in the body speeds up.  If I don’t take it at all, quite the opposite happens and everything slows down. 

Since taking too little hormone takes a while to cause real problems (except being super tired) and too much hormone can be a danger if the heart rate goes too high, I guess if I can’t remember if I did/didn’t take it that morning I should err on the side of caution?  Or maybe I should just suck it up and start using the pill box and take it when I realize I have forgotten it even if it isn’t quite as effective on a full tummy… What would you do?

Thanksgiving

Its a bit early but the next few days promise to be crazy busy and I have too much to be thankful for to just skip it.  In the spirit of my earlier post Gratitude, here is my Thanksgiving…

I am thankful for my parents who have been there for me every day in every way possible.

I am thankful for the little angels that pop in and out of my life at just the right moments.

I am thankful for my family and friends who bring a smile to my face.

I am thankful for the doctors, nurses, residents, techs, phlebotomists, pharmacists, nuclear medicine staff, registrars, secretaries, dietary staff, patient escorts, environmental services staff, valets, and a whole host of others that provided excellent care on my many trips to the hospital.

I am thankful for a God who is always watching over me.

I am thankful for a growing 3 Day for a Cure team and the many, many people who are passionate about finding a cure for cancer.  Someday, someone like me won’t ever know what it’s like to worry about tomorrow because of people like you. Thank you!

Most of all, I'm thankful for the early detection of my cancer, for the opportunity to live life with a different perspective, and the chance to live a long, cancer-free life.

Pink Gloves

Medline is promoting their new pink gloves with help from a hospital in Portland.  Once this video gets to 1,000,000 hits Medline is making a huge contribution to the hospital and providing free mammograms to the community!  Check it out!

Pink Gloves

Thyroid Cancer Update

Its been a while since I posted on the status of my thyroid cancer.  Mostly its been because there hasn’t been too much to tell aside from being tired and wanting a nap every day! 

Today I had my 6week post-RAI check up with my surgeon.  I had to get my blood drawn a couple days ago in prep – oh yay another needle stick!  Anyway, the first words we heard from the nurse were “You are on thyroid meds, right?”  Uhm… yesssss… Then she said the Dr would be right in and left my dad and I alone.  I turned to him and said “That can’t be good, my labs must be high.” 

So the Dr. came in with a resident and started doing a thorough neck check searching for enlarged nodes (I have none) and told me my TSH is at 13.0.  YIKES!  If you remember, “normal” people should have a TSH between 1.0-5.5.  Anything over 5 is considered hypothyroid.  Thyroid cancer patients are kept slightly hyperthyroid (between 0.1-0.3) so that any thyroid cancer cells that may be hanging out in our bodies are tricked into thinking they don’t need to work.  As long as the leftover microscopic thyroid cells aren’t working, thyroid cancer is not growing.  Me being at 13.0 means my thyroid cells (what little may be left) are working/growing AND I'm experiencing mild hypo hell.  I guess that explains why I feel a need for a nap still!

So the plan from him is to increase my thyroid hormone.  Here is a dilemma, I have an appointment to see my Endo in 4 weeks who will be doing my monitoring and prescribing from here on out.  I get poked for more labs in 3 weeks.  So do I increase my dosage now and screw up the lab tests in 3 weeks (it takes med changes 6-8 weeks to be fully effective) or do I wait to see what my Endo wants to do since he is the one who will be following me here on out?  I talked it through with my mom and we decided waiting until I see my Endo and then adjusting meds is our plan.  It means I will be slightly hypo through the holidays but I've been dealing with it since September, I think I can handle another month!

Addicted

I have a superserious addiction right now to… raspberries!  YUP! They aren’t in season or anything but they were on “sale” for the lovely price of 2 teensy weensie packages for $5.00 and I bought them.  Then 2 days later [today], I promptly bought 2 more.  Now I'm halfway through those and am seriously considering a support group for raspberry addicts.  I cannot afford to spend $5 every day or two on just raspberries!!  Maybe I just need to move where raspberries grow year round and they sell for like $1/package. [are they cheaper anywhere?]  I guess I can replace my coffee addiction with them to justify the expense and tell myself I'm making a “healthy choice” but I know that alas, they will be very hard to find soon enough in this snowy state of mine.

If you know of somewhere where I can buy raspberries - or strawberries for that matter – year round for under $5 for 2 cups, please let me know.  I shall put it on the list of places to move to!

A little reading

To read about Susan G. Komen for the Cure's position on the article from last night's post, please click here!

I will write more thoughts on this topic later...

You Have To Be Kidding

Apparently a new government panel of expert idiots is weighing in on cancer screenings once again. [click here to read the article]

This time the subject is breast cancer specifically.  The expert idiot panel says that mammograms for women aged 40-50 leads to too many false alarms and that breast self exams do no good and women shouldn’t be taught to do them.  They also say that women should not get mammograms until age 50 and then should only get one every 2 years and if you are over 75, they don’t really think you need one anymore at all – after all, you have to go sometime…

This has to be a joke. I can think of no reason a sane person with a medical background who has spent any time at all with cancer patients would make such a recommendation!

I will concede that the traditional mammograms do not always detect breast cancer in its earliest stages. [how about paying for a digital mammogram instead?]  BUT, I will not concede that self breast exams are pointless.  I will not concede that mammograms are more harm than good to women aged 40-49.  I will not concede that it is a good idea to go 2 years between mammograms.

As someone who has known many, many women with breast cancer – diagnosed anywhere from age 21 to in their 70’s – I don’t believe that women of any age should be overlooked just because of their age or the fact that most breast cancers are “slow growing.” 

I have come to hate those words “slow growing.” Cancer by definition is uncontrolled growth of abnormal cells in the body.  Cancer is a rouge demon that does what it wants, when it wants, and by nature doesn’t follow the “normal” paths.  To some a year will make no difference in their prognosis, to others a year may mean death.

The 21yr old I mentioned above, she kept going back to her college health clinic because something was very wrong.  Her labs were wildly abnormal yet no one entertained the thought she might have cancer… until… until she fell while on summer break because the bones in her spinal cord cracked from the metastasis from her breast cancer.  Would a self breast exam have helped to discover her cancer sooner?  I invite you to read [or watch] the story of Geralyn Lucas who did find her breast cancer by self breast exam at age 27 and lived to tell her story.

I have a feeling the frequency of cancer screenings may drop dramatically in the next few years if we don’t take a stand against it.  Be your own advocate, request and demand screenings if necessary, and know that you have a right to fight cancer at any stage because you have a right to live your life to its fullest.

Cleaning House

This weekend was busy but not.  I spent most of it inhaling bleach fumes as I cleaned and disinfected my house.  It needed it quite badly at this point!  And since I wasn’t running around doing errands all over town or sitting on the couch watching mindless TV, I found my mind wandering to some pretty heavy topics that have been floating around in there. 

I’ve had quite a few “life” type things on my mind lately and I think I'm getting to the point where some changes are going to be made.  I personally think they will all be for the better but I'm not ready to share them quite yet.  Soon enough, my dear friends!  I just don’t want to get ahead of myself. ;o)

Will You Help?

1 in 8 women will be diagnosed with breast cancer in their lifetime. 

In the US, 1 woman is diagnosed with breast cancer every 3 minutes.

These statistics are startling and terrifying when you start to think of all the women who are important in your life who may get breast cancer. Many of you know someone who is fighting that battle right now. Many of you have already lost someone to cancer that you loved dearly.

After my recent diagnosis with thyroid cancer I feel it is more important than ever to keep on fundraising so no one has to battle cancer ever again. That is why I chose to walk in my 3rd Susan G. Komen 3-Day for a Cure! I will once again walk 60 miles in just 3 Days and commit to fundraise at least $2,300.

Why choose this event? Because of the amazing journey and the even more amazing amounts of money raised for cancer research! Yes, it goes to breast cancer research, but did you know that breast cancer research has resulted in many life saving treatments for other cancers too?

This will be my 3rd time walking in the 3.Day and my first time walking after my own cancer diagnosis. I'm actually still undergoing treatments and I'm not sure where the energy for 60 miles will come from, but I know it will come... and I know I have to DO something!

Will you help me and the millions of other cancer survivors who deserve to have a lifetime with their friends and family by making a donation?

Please take a moment to visit my fundraising page and make a tax-deductible donation. No amount is too small or too big when we are working together to save lives! Please pass this on to your friends and family to give them a chance to help too!

Hugs & Love...
Christina

Driving Thoughts

I have a 30-45 min commute to and from work daily, most of which takes place on very rural roads with no cell service.  During these drives my mind tends to wander.

Here is an excerpt of today’s drive home…

Ahhhh… its almost Friday! I don’t really want to go to work tomorrow and I could use a day to sleep in/clean, maybe I should call in sick? Do i need gas? Not yet, I can get it tomorrow… hope it doesn’t go up. 

Oh wait! It’s JEAN DAY – no way I'm missing that!  Do I have $3 for the jean fee? Seriously are you going to go that slow?! 

You know, I would make a good wife to a doctor or lawyer or something...  I could stay home instead of working and just involve myself in a lot of charity work instead.  Ooops, there’s my turn! Whoa lots of road kill, watch for deer! 

So excited that Gwen is available for the Crop!  Now we just need a hotel… we need to make a list of games/prizes/gift bag goodies… there is really a lot to do in the next couple months!  On the to do list: make a to do list!  Ewwww…more road kill… deer? 

Oh crap! I missed the news part about which roads are closed or are closing for the weekend!  Oh well… I'll catch it tomorrow.  Turn! Hmmm I think one of my tires is soft. 

What should I have for dinner?  I’m not really that hungry, maybe I won’t eat dinner… Why are my hands so cold?! My car says it’s 48F and I have gloves on, they should not be ice blocks! Maybe I'm hypothyroid?  Oh yeah I have to remember to get my labs done next week! Wait, I haven’t gotten my new insurance cards… maybe they are in the mail today…if they aren’t I'm going to have to call benefits to get my new contract number and stuff…  or do i call the insurance company for that?  Maybe my cards will come before I get them done?  When is my doctor’s appointment? Oh yeah its Thursday before the Thyca meeting… getting an ultrasound of my neck again… my neck has been hurting the past few days, I hope nothing is growing in there.  Why the heck is it so hot in here?! Oh my bum warmers are on!

Oh the red house on the lake says reduced price! I wonder if its under $500K yet?  I should check out grar when I get home.  Oops, better slow down in the construction zone… cops like to sit just around the corner!

Oh that’s the contest song… I think they draw the hot tub winner on Dec 17th?  I wonder if Aunt Dorie will win the hot tub?  What the heck are you doing?! DRIVE! 

Is it too early for pajamas?  I wonder if that place would donate something for our raffle prizes? Maybe I can get a weekend donated at that hotel?  I should really take a day off…  a hotel sounds really nice about now… STAY IN YOUR LANE! 

I should at least figure out if I want to take any days off around the holidays.  Have to get the request in now! Wow, I never hit this turn when it’s clear! 

I should really put my Netflix in the mail and get some new movies.  Maybe I should cancel my Netflix?   I’m definitely parking under the carport again… those cars were frosty this morning!

And there you have a peek into the mind of a commuter.

Is it Friday Yet?

After 3 very full days in a row, I'm ready to be done with this week. 

Sunday I spent almost 12hours doing laundry at my parents house because it hadn’t been done in almost 3 weeks.  At the end of the laundry marathon I was ready for bed but still had to drive 30mins home, carry the laundry up 2 flights of stairs, and put it all away. The putting it away part is the worst of all laundry parts followed closely by folding.  Oh how I miss my laundry machines and vow to never live in another place without in-unit laundry!!!

Monday I took a shower and was getting ready for work when I noticed a moldy smell in my bedroom closet.  I pulled out my hamper from the corner and discovered the wall to be wet and moldy. Fantastic. So I pull everything away from the corner and head to work where I was too busy to call maintenance.  Then I headed to my hair appointment and ended up getting home close to 10pm – also too late to call for help. 

Tuesday I worked from home in order to shower, pull stuff out of my closet and shower and vanity area where the walls were wet, and call the maintenance guy – I was also praying that it would be a quick fix but secretly preparing for needing to move out for a week while plumbing repairs were done. The guy came and fixed it in less than 1 hour!!  He had to pull the back of my shower off to get to the pipes but he repaired the leak, bleached all the moldy areas, and caulked it back together in less than an hour. I heart him. After working I went to the dentist and then led a team meeting which went longer than expected so I didn’t get home until almost 11pm.

I’m so ready for a down time night! Or maybe just bedtime before midnight when I get up at 5am?  Is that too much to ask?

Cancer Brain Attack

Proof positive that cancer brain/chemo brain/brain fog exists…

I got a new phone recently and its one of those fancy schmancy touch screen dealies.  Well I am endlessly amused by playing games such as Solitaire and Sudoku using the drag and drop and rollie-ball thingy.  So early in the week I played some Sudoku games and had a decent time of 6 minutes to finish the puzzles… fast forward to Saturday after a week of brain drain and feeling exhausted and it takes me 22 minutes to finish a damn puzzle… with hints!

What’s worse, it just took me 20 minutes to write this.

Down With Christmas!!

Nothing gets me more riled up than seeing Christmas decorations and displays at my local stores starting in October! [note: yes I am aware that it is now November – I'm a bit tardy posting my outrage]  Christmas is celebrated in December last time I checked and between October 1st and December 25th there are at least 2 nationally recognized holidays to honor! 

Yes there are plenty of Halloween displays [read: costumes and candy] but after October 31st all you see are Christmas decorations everywhere.  My sister said her store is playing nothing but Christmas music as of this past Monday – seriously?! 

What happened to Thanksgiving?! Thanksgiving happens to be my absolute favorite holiday and I am very saddened that every year it seems to get ignored even more.  Therefore, I am boycotting Christmas and all that is related to it until the proper moment - November 27th. 

I like Christmas and all that it represents religiously, don’t get me wrong.  I am just sick of the commercialism of it all.  I would be happy getting no gifts and just having a day to hang with my family, eating yummy foods… which is apparently why Thanksgiving is my favorite holiday.  There is no fuss, no focus on who spent the most on whom, no presents you will never use but don’t have the heart to return, no crazy decorative displays that take over the entire house and every chair in it.  It is simply gathering with loved ones, sharing a meal, and remembering what we have to be thankful for.  Wouldn’t it be wonderful if Christmas was focused more on gathering with loved ones and focusing on birth of Christ than frantically running around trying to find the perfect gift? 

I have much to be thankful for this Thanksgiving and I intend on giving it my full attention.  Christmas you will just have to wait!

And in the interest of full disclosure [and before I get ratted out by one of my coworkers] I must confess I am currently wearing Christmas socks.  But in my defense, they were the only ones clean!

Zapped

Its Thursday and I'm sitting here wondering if I will make it through tomorrow because I'm just exhausted.  My brain is done, my body is done, I'm just done. 

It makes me wonder if I will ever get my energy level back?  Maybe I'm just not on the right dosage of my meds yet?  Sucky thing is although I have an appointment and labs soon to check this, any change in meds will take 6-8 weeks to make a difference. 

So I guess I will just continue to drink my green tea and hope that gives me enough of a boost to get through the day.  It’s about now that I wish for a cook, maid, and chauffer so I can preserve the little bit of energy I do have for more important things.

Cancer Vacuum

Since finding my original lump [aka: Bob] in May I have been in some sort of cancer vacuum.  My life was sucked into the black void that is a cancer diagnosis and is only just now coming back into the light. 

I literally can remember nothing about the last 6 months except things that relate to surgeries, RAI, LID, being hypo, getting labs done, going to the Dr, getting referrals… everything else is simply gone.  I sort of feel like I was asleep with the world moving on around me.  People got married, got pregnant, had babies, got engaged, got new jobs, bought houses… and absolutely nothing in my life happened except this crazy weird cancer trip dream. 

It sort of feels surreal.  Did cancer really happen to me?  I have the scar, a new script, Dr. appointments, lab tests, and non-working taste buds to remind me that… Yes, it did indeed happen.

On a life changing note: Congratulations to my cousins Lacey & Chad on the birth of their first baby – Wylie Joseph!

Vaccination or Not

MILLIONS of people get a hospital acquired infection every year and thousands will die because of it.  Think about it, people in hospitals are generally there because they are sick. Their defenses are down.  Yes, hand washing is the major way to prevent the spread of infection.  Second to that is avoiding people who are sick.  Uhm when you work in a hospital that is next to impossible!  The best thing you can do is to protect yourself from the infections your patients, visitors, coworkers may be carrying which will in turn protect your patients.  Some people argue that employees should just stay home when sick.  Yes, that’s true… BUT… many times you are contagious before you even realize you are sick.  Heck I probably was contagious Friday.. my only symptom was a splendid headache but as soon as I got home, all heck broke loose!  And raise your hand if you have ever worked when you were feeling under the weather… yeah, that small cold to you can be deadly to someone who is immunocompromised.

Ok so I know there are valid, health related reasons some people cannot receive this vaccine.  (Those persons are exempt with physician documentation by the way)  And I also know that there are many objections out there to vaccines in general and I'm not here to start a massive debate on vaccines and autism.  I just think that everyone who does patient care should very seriously consider the patients they are serving and how they can best protect their health and well-being.  If that means employees getting a vaccination, washing their hands until they are chapped, and being slightly short-staffed when people are sick then THAT is where I want to be treated when I land in the hospital.

Anyone else have an opinion?

F-L-U is a 4 Letter Word

Ok so not really but it sure should be!  My wonderful holiday weekend was totally ruined by the FLU.  No, not H1N1.  I got the good old fashioned gastrointestinal flu. 

It hit about an hour after I got home on Friday [thank goodness it waited until I got home!] and from then on it was pretty much the couch or bathroom for me all weekend!  On Saturday I wasn’t throwing up anymore but my tummy still felt gross so I still couldn’t eat.  Friday and Saturday I hurt absolutely everywhere and found it hard to sleep more than a couple hours at a time.  I finally tried a piece of toast Sunday morning after not eating since lunch on Friday and it stayed down and in so I was deemed “well” by mom and allowed to go to the family “Happy ThanksMas” [so named because we were technically celebrating Christmas but it was the day after Halloween and we had to fit Thanksgiving in there somewhere].  So I attended the festivities and ate more than my tummy thought appropriate and felt not so hot by the time we left.  When I got home I went straight to bed again. [yup, that’s my exciting weekend for ya!]

I must say that I fared far better than my aunt and friend Christy who DO have H1N1 – both have come down with pneumonia as a result of that particularly nasty bug!  I’m praying that they both get better soon! 

Upside of this weekend, on Friday morning I was down 6lbs from my stupid hypo/cancer weight gain… now I'm down a total of 12lbs!  I’m sure that will come back on as soon as I can get rehydrated but I will enjoy it while it lasts! ;o)

Someone Up There Loves Me

Today was completely amazing – no seriously, miracles happened!  I went in to my PCP at 10:30a which I think was more of a “stop bugging us!” appointment because of all the calls my mom and I have made about getting an endocrinology appointment.  My PCP wasn’t annoyed by us yet [yes I did ask him and he said we would have to put more effort into it] but I think we annoyed the nurses.  So anyway I'm there and we are talking about the specialist issue and options and then he says “Ok who do you want to see?”  So I think a minute and say “Let’s go with Dr. K.”  So he calls Dr. K’s office and they say they have an appointment TODAY at 4p do I want it? Do I want it?! YES! Then he calls up radiology and asks for a CD to made of my exams and they say they can have that ready by 3p in time for my appointment! Seriously, that never happens!  So I go back to work for a bit and then head to the hospital to pick up the CD and then to Dr. K’s for my appointment.

I met my aunt at Dr.K’s office. [note: never go to cancer appointments alone]  I was nervous because endos are a bit of a nutty bunch and I had no idea what I was getting into.  Everyone at the office was really nice so that was a good start and when Dr. K came in the room he seemed very open and easy to talk to.  He asked me a million questions about the course of my treatment up until now and expressed surprise at some of it.  It was apparent he thought that things had been handled a bit differently than the norm.  I did receive appropriate treatment with a full thyroidectomy and RAI, he was just surprised they waited so long to take the other half of my thyroid and that they weren’t going to do a post-RAI scan. [go me for fighting for my scan!]  Then we asked about follow-up and he gave us a very clear picture of appointments every 2-3 months with bloodwork to watch my tumor markers [ie: Thyroglobulin or Tg levels].  About the concern over the uptake in my lung, he said it would be very unlikely to be mets but that following the Tg closely would confirm this.  He said it was more likely that I had a bit of pleurisy from being so hypo and that is what caused the uptake.  So I have 2 future appointments scheduled with Dr. K’s team and feel very comfortable with the plan now.  I also feel like God was in the mix, making all the right pieces fall into place today.

Just a lil bit Crazy

I think my Dr must think I'm neurotic.  Or maybe he just thinks my mom is neurotic?  I guess that would be ok.  Anyway, I think between the 2 of us we have called his office possibly 50 times in the last week. 

I still have no specialist who will see me.  My mom is now stuck on me being referred to a Dr. K. [note: we started with Dr. N moved on to Dr. C and now… Dr.K] She even called his office to make sure he takes thyca patients with possible lung mets. He has an opening on Nov 17 so all we need to do is get my papers over to his office and I'm in!  In the meantime I feel like I'm breathing through mud – yay fun – so I’m visiting my PCP tomorrow.

On the good news front: there was sunshine today for the first time in weeks and I actually got out of work in time to see it for about 20mins!  Also, I think I can finally say that I didn’t go into early menopause… It had been 3 months so I was starting to wonder!

Tastebuds Where Art Thou?

Dear Tastebuds,

Where have you gone?  I miss you dearly and implore you to return to your right and proper place on my tongue. I deeply apologize for irradiating you nearly one month ago but I promise your environment is no longer equal to that of a nuclear reactor. 

Don’t you miss the sweet and tart flavor of Honeycrisp apples fresh from the orchard?  The cheesy, gooey goodness of Taco Bell nachos bell grande?  What about the satisfying sweetness of double chocolate Ghirardelli brownies?  And how can you not miss the smooth deliciousness of grandpa’s hot chocolate recipe?

How can I make it through Halloween not tasting even a bit of Take 5 bars, Reese’s peanut butter cups, apple cider donuts and Snickers?!

Please, oh please come back to me!

Waiting in anticipation…

CK

Le Sigh…

After a full week back at work I should have spent the entire weekend doing nothing but sleeping but I allowed myself to get dragged into a shopping trip across state with church because my mom said it would be "good for me to get out.”  Yeah, maybe that would be a good idea in a few weeks when my strength is back and my TSH is back in the “normal” range!  I went but knew it was probably not a good idea just about as soon as I woke up on Saturday morning.  Well… maybe I figured it out Friday night when I was trying to check email and fell asleep while literally sitting at the computer.  Anyway, I tried to make the best of the trip without being too much of a downer for everyone else but by the time we got home that night I could hardly climb the 2 flights of stairs to my apartment because I was feeling so weak.  The next morning I got up and started getting ready for church/Noah & Ethan’s dedication and Grandma’s birthday lunch and I could hardly move.  Needless to say I didn’t make it out of the house but spent the entire day with multiple layers of clothes and blankets on trying to get warm. 

No I don’t have H1N1 – I don’t have a fever or cough – I just have cancer that my body is still trying to kill off.  My RAI treatment works for the next 6mos or so killing off the cancer cells and I'm also slightly immunosuppressed from the treatment killing off some WBC’s… also my thyroid stimulating hormones [TSH] are out of whack… I'm going to be a little not like myself for a while yet.  Yes, i’m in the high risk group for H1N1 and the regular flu.  No, I haven’t yet been able to get immunized against either strain.  I’m working on it, there just aren’t vaccines available!

Today and tomorrow I have easy work days because I'm sitting through orientation for the 3rd time in 5yrs with the same company. [note: transfers within the system are not always seamless/easy]  But this also means that Wed-Fri will be crazy busy playing catch up plus month end account wrap up.  UGH.

Still no word on getting an appointment with Dr.C.  I’m sure the fabuloso referral lady at my PCP’s office was working on it all day and I might hear something [anything?] tomorrow… let’s hope right?!

Onco? No.

Just as I suspected, the oncologist wouldn’t accept my case because they don’t treat thyca patients. Ok so now what?  The next step is a referral to an endocrinologist. 

Ok, the oncologist suggested Dr. N in the area… hmmm name sounds familiar… why…why…why?  Oh yeah he’s the one that told my aunt that 60% of his patients never feel better, didn’t listen to what she had to say, and acted like she was wasting his time.  NO THANK YOU!  Sorry but I don’t need to waste my time on a Dr like that.  Yes I know that each patient may have a different experience but still, if he’s telling his patients he can’t help them most of the time I don’t think I want to visit him!  So mom calls back to say we don’t want to see him and we would like a referral to Dr. C whom we have heard is wonderful but only works part time because she has small kiddos at home. [read: average 6mo waiting period to get in] 

If we can’t get in soon we may have to revisit seeing Dr. N… or going with the suggestion from some fellow thycans but that would mean driving to Detroit for appointments.  Let’s just see what happens shall we?

Now a few words about H1N1 [note: it is NOT swine flu as originally thought, stop calling it that]… H1N1 seems to be all the rage around here as they are reporting 2 deaths in the area and people are standing in line for hours to try to get vaccinated.  As a person considered to be at “high risk” because of the recent cancer treatment and immunocompromised state, I have to rethink things a bit.  Do I go to the mall, to a movie, to restaurants, to church…? Do I go but wear a mask everywhere I go?  The vaccine isn’t available, or if it is they have the mist which I can’t get because of having cancer.  I guess I have to chance it.

Some statistics and info from the CDC on H1N1:

• 24% of people hospitalized for H1N1 are 24-49yrs
• 32% of H1N1 related deaths are in people 24-49yrs
• Signs & Symptoms: fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. Some people may have vomiting and diarrhea

Just One More Day

Just One.  Then I can sleep in… oh wait, no I can’t… I’m signed up for a group trip to Birch Run/Frankenmuth.  Why did my mom think that would be a good idea again?

So this week has been ridiculous.  Its only expected that after weeks off, your first week back to work is going to be crazy, right?  In addition to the normal catch up stuff though, I'm trying to navigate through the paperwork/blood test/TB test/flu shot/drug test maze that comes with transitioning to a different entity within our health system as well as getting used to my new director and her expectations.  There are still questions surrounding if I can even get the mandatory flu shot – screw it - just give it to me because I'll get the flu one way or another at this point!  Oh and after I got my TB test today I notice that people with head and neck cancer are in a moderate risk category when they get certain reactions. Fabulous. 

I have told myself, my employees, my bosses, my doctors… that I would work from home and/or work shorter days if I was feeling exhausted.  Yeah that hasn’t happened… oh I'm exhausted all right but it seems that anytime I hit the point where I think I really have to leave now because my brain is shutting down and I'm not sure I can make the 45min drive home some crisis or another happens and I need to give a bazillion answers to people ASAP.  By the way, everything in a hospital needs to be answered or done ASAP these days.  Tonight I'm feeling so tired I'm not sure I will be getting up to make anything for dinner.  I don’t need to eat right?  And I can’t taste anything still so…

No word on the 2nd opinion yet even though I called to check on it yesterday.  I have a feeling the oncologist won’t accept my case because they generally don’t treat thyroid cancer patients so they might not know what to do with me.  That’s ok because I have gotten some wonderful suggestions for specialists from fellow Thyca friends. Just want the word on if the Onco’s are taking my case or not and then we can keep moving on…

Celebrate Life

By Sister Sue Tracy, OP a 4-time cancer survivor whom I met at my Bluebird Cancer Retreat [can also be found in Chicken Soup for the Surviving Soul]

Count your blessings, not your worries…

Express your feelings honestly…

Learn to laugh and laugh to learn…

Endure what is necessary…

Be open and flexible… go with the flow…

Remain in charge; network with family/doctors…

Accept and face your own mortality…

Treasure each day and each experience…

Exercise body, mind and spirit as able.

 

Live remembering that life is a mystery to be lived

  and not a problem to be solved…

Invest in your inner resources: courage, effort,

  determination, faith, hope and love…

Find your future in your now…

Emerge as a winner – not a victim or a mere

  survivor – but truly a thriver!

Back At It

Not much to update yet but there were a few things to be noted about today…

One. My PCP wants me to see an Oncologist now so I'm waiting to hear back on my appointment date/time.

Two. Working a full 8hr day my first day back was probably a little too much. I came home and sat down to decide on dinner and woke up 2hrs later… oh and dinner ended up being mashed potatoes because I'm too tired to make anything else.

Three. Not being able to taste anything is NOT FUN.  I have learned that my favorite TB Nachos are dis.gust.ing when you can’t taste the nacho cheese. That caesar dressing without taste reminds me of mayonnaise which I despise. And donut holes taste like nothing while going down but have the aftertaste of play-doh.

Four. Flu shots at my work are mandatory if you value your job, yet I have to get physician permission before they will let me get my shot. Ummm… meanwhile everyone and their brother is sick and I have a bum lung.

Five. My new phone arrives tomorrow and I can’t wait!

Six. I am getting increasingly annoyed at the moment that the stupid baseball game [angels vs yankees] is pre-empting House, MD which now will not record properly with my DVR because the times will be off.  Somebody score already!

Seven. I could go back to sleep right now even though I woke up only 1.5hrs ago.  Its going to be a looong week.

Micrometastasis? Maybe.

micrometastasis (n.): the spread of cancer cells from the primary tumor to distant sites to form microscopic secondary tumors.

My post-RAI WBS turned up activity in my “residual thyroid tissue and/or local lymph nodes”. (great specificity nuc med) The residual thyroid tissue is expected to show up because your thyroid is literally attached to most of the structures in your neck (most notably your windpipe) so they can’t physically get EVERY cell without damaging other, more important organs. The part about them not knowing if it was also showing uptake in local lymph nodes makes me entirely not confident in the nuc med physicians at my hospital. Well that and the fact that they didn’t think I needed a post-RAI WBS when it is ALWAYS done everywhere else… but I digress…

The WBS also showed “diffuse uptake in the left lung posteriorly” in a pattern “not consistent with focal metastatic disease.” What this means is there was RAI uptake in my lung but it didn’t show focal tumors (macrometastasis). If you remember, radioactive iodine is ONLY taken up by thyroid cells in the body (cancerous or regular) and whatever they gave me that wasn’t taken up by my residual thyroid tissue was excreted in urine, sweat, and saliva. There is NO reason there should have been any uptake in the lung with the exceptions of the presence of thyroid cells in the lung tissue OR an infection/inflammatory process (like pneumonia or pleural effusion). The recommendation by nuc med was to get a chest x-ray for further characterization which I had done on Friday. My chest x-ray was CLEAR. Meaning I have no pneumonia or pleural effusion or any other inflammatory process.

So what does this mean? Without the presence of focal metastatic disease (cancerous nodules) there is the strong possibility that I have diffuse micrometastasis of my cancer throughout my left lung. It could also have been a fluke in the machine but that is the less likely scenario.

So ok, what does that mean? In patients without metastatic disease elsewhere (this is why the lymph node comment bothers me) long term survival rates are very high when lung mets are too small to see on x-ray and have only shown up on post-treatment WBS. 10-year rates are still near 100% with these diffuse micrometastases… but when the mets become micronodules (<1cm) survival rates drop to around 40% and when mets become macronodules (>1cm) rates drop to 15%. It not showing on the x-ray is common in patients my age and is actually a good thing. Also, the dose of RAI I had (200mCi) is exactly what would have been prescribed had we known about this prior to my treatment and the follow-up course should not change at this point. In 8-12 months I should have a follow-up scan and if uptake is present on that scan, I will need another 200mCi of RAI, repeat that cycle until no uptake is seen on the post scans. We should also be monitoring my thyroglobulin levels and if they are elevated that will indicate persistent disease.

That all being said, I think its time for a second look/opinion on my case. I plan on calling my PCP for a referral to a thyroidologist and the only ones in state are at U of M. Any metastasis in thyroid cancer tends to mean higher chances of recurrence and/or further spread so I think having a specialist review my case would be a good thing at this point and if they have a more aggressive treatment plan in mind I will probably transfer my care to them.

So lots to think about, pray about, and try not to worry about in the coming months!