Timing in the Thyroidland game

Some people say that timing is everything. Life is about "being in the right place at the right time" or the "wrong place at the wrong time". I have learned over the past year how precious time is. How easily it can be taken for granted and how we never know when the time is up, when we've run out of time with someone that we love.

The past 10 months have had a lot to do with timing for me.  It's been a running tab of time.  How long was it since I last hugged my Dad?  How many days were left of school?  How many days until I graduated?  How many days will I have to wait for those results or that appointment? There were times when the days dragged on and times where the days went by too fast.  Times where I felt that that the passing of time was healing.  Times where I have reflected to how different things are this year than they were on that same day last year.  Things are very different this year, but in ways they are also the same. This time last year I was stuck in the waiting place.  I was waiting to find out how bad Dad's cancer was.  It was a difficult couple of weeks that I floated through, hoping for the best but knowing in my heart that the news wasn't going to be what I wanted to hear.

This year I find myself again in the waiting place.  I'm waiting to find out if my cancer has returned and moved into my lymph nodes in my neck. At each step of the diagnostics, I tell myself "this will be good news, and this will be the last step".  But then I move to the next step again.  It almost feels like playing a game of Candyland with my daughter.  Sort of like a Thyroidland board game. Just when I think that I have finally won the game, I get one of those silly face cards and I have to move backwards again. Or I wind up on the wrong square and I have to wait until someone draws a certain card before I can move again. Unlike in Candyland I could wind up at the castle or somewhere worse if I wind up having to take the fork in the road.

Time moves slowly in Thyroidland. There are diets to be followed, shots to suffer through, scans to hold still for and most importantly...news to wait to hear. Although I've been through steps 1 and 2 of the game, I still have many more to take before the castle at the end is in sight. Because you see, it's all about timing.  You can't have the scan without starving any possible thyroid cancer cells of iodine.  And then there's the shots which have to be given 2 days in a row.  And then there's bloodwork that needs to be drawn on certain days.  The radioactive pill to swallow.  And of course, the big enchilada...the scan. All timed out just so. Each a carefully planned square on the Thyroidland game board.  If you are lucky, you get to the end where a tasty iodine rich meal awaits you along with a phone call from your endocrinologist or oncologist telling you that it's all clear and you can get out of the waiting place and advance to the castle. 

The timing of this year's round of the Thyroidland game troubles me.  As I mentioned earlier, there is that saying that "timing is everything" which makes me think that the timing can be an omen.  A good omen quite often, but sometimes a bad omen.  You see this isn't the first October that I have spent playing this game. I very vividly recall my very first round in October 2005, the year that my cancer was diagnosed.  That year my steps in the game started in September and ended in January of 2006 with a round of radioactive iodine therapy or RAI.  This year feels so similar to that one.  At every turn, I told myself "this time it's going to be okay & this is the last step".  Yet I would get that call telling me to draw another card, advance one square...move on to the next step. Rather than a glowing sparkly castle at the end of that game what awaited me at the end was a different sort of glow....the kind that you can only get after swallowing a capsule containing a hefty dose of RAI. There the castle was an isolated room at the hospital where everything is covered in protective plastic to protect it from the patient. Nurses rush in and out because you, the patient are dangerous to them.  The big excitement is when the radiation techs come in and measure you with their equipment to see if you are still dangerous to the public. You sleep, not because you are waiting for the prince to come and give you a sweet wake up kiss.  But because you are so hypothyroid that you can't stay awake. It's a place where you miss your kids, your husband, and your dog. Oh how much better that gumdrop covered palace looked!

I really hope that this year I wind up with the castle rather than the hospital room.  I wish that I could say that there was a winning strategy to the Thyroidland game, but I don't know which cards I will draw.  I try not to believe that timing is everything and I stay hopeful. But really I don't know this turn will play out. I don't if the deck was shuffled or if it will be just like 2005.  I can only hope that I get to keep going in the game until I get to the happy ending.

Operation Getting Healthy: Week 5

I made a few bad choices and succumbed to emotional eating once or twice, but considering the disappointing news about my lymph nodes I am cutting myself some slack.  Even when I made bad choices, I compensated for it later in the day by eating lower calorie meals.  I have still been logging my calories & exercise on myfitnesspal.com.  I also joined the gym last week and have gone to work out twice.  Working out wasn't easy for me, but I enjoyed the feeling of accomplishment.  The first time that I went I swam laps.  I had a hard time hoisting my fat ass out of the pool which was mortifying, but I won't let it stop me from doing it again.  I really enjoy swimming for exercise.  The second time I did the bike and treadmill.  My knees are a little sore today, the day after but hopefully I can get them stronger and take more pressure of them by exercising and losing the weight. 

Overall I'm down 18.1 pounds!  I lost enough weight to need a lower dose of Synthroid.  Woot, woot!

Diving in

I joined a gym on Tuesday.  It's 30 minutes from my house, but it's much nicer than any we have near us.  I wanted something with a pool and the only gym here with a pool & good hours is the YMCA which has a yucky pool and a weird layout. The gym I joined is also where my husband and 4 of our friends are members. So I figure having other people to go with is good thing too.

The experience of signing up was sort of humbling because I had to discuss my weight and goals with a total stranger. And all this took place in front of my husband, so it was further humbling. But I'm glad that I did it. I felt really supported by my husband and by the staff that I encountered there, so it's a positive step. I'm excited about having a place to go and work out regularly.  I plan on swimming laps at first and then moving on to other low impact exercises like the bike or elliptical machine.

It's definitely forcing me to face some anxiety head on too because it's a new routine for me. I feel weird about the changing & showering in the locker room and working out in front of strangers. I also have to go through a personal training session which I'm sure will be helpful but will also be an anxious situation for me. I'm really looking forward to putting the extra effort into getting healthy and getting the weight off. So today I'm going to get that first time over with and I hope that it all goes well. I was going to go today, but I'm have been fighting back a panic attack all morning & am waiting for 2 doctor's offices to call me.  So I'll either go tomorrow or during the weekend when I feel more prepared.

Low iodine diet, here I come!

I just talked to my endocrinologist on the phone.  My lymph nodes are bigger than they have ever been.  The radiologist thinks they are benign from what she saw, but she cannot be sure without a tissue sample. So...

I will be doing the radioactive iodine uptake and scan.  Of course this comes with bonus sucky low iodine diet (LID) that I have to be on for 2 weeks to starve my cells for iodine. I asked if I can put it off a couple more weeks because childish as this may be, I do not want to be on the LID for our 9th anniversary and my 34th birthday.  After how horrible last year's anniversary & birthday were I really want this year to be awesome. 

If anything lights up on that scan to indicate thyroid tissue or my thyroglobulin blood test has a value other than undetectable, I will have surgery to remove the lymph nodes in my neck causing this trouble.  As my doctor reminded me, if the cancer is back it is slow growing so we have time to get it. It really does seem unlikely that it is, but then it was unlikely that when I was 29 that I was diagnosed with Stage III thyroid cancer at all....

I'm trying to stay positive.  I don't have a choice but to go through this so I can see the bright future that I have on the other side.

And now we wait....

I did my first step of the yearly cancer testing this morning which was an ultrasound of my neck. They were looking at my thyroid bed and the lymph nodes in my neck.  I am not at all worried that there would be tissue in my thyroid bed.  Because hey, it's been nearly 5 years since my 2 lobectomies that removed my thyroid.  (I had the first one in Oct. 2005 & the second in Nov. 2005).  But I am concerned about my lymph nodes because they have been suspicious in the past.  I have even had a biopsy of the lymph node closest to my carotid artery.  Let me tell you, that was not awesome.  It was painful and scary and I hope it never happens again.

So the radiologist like instantly had my scan to look at, but I probably won't hear anything until the end of the week from my endocrinologist. So now, it's time to wait. If anything looks out of place from the ultrasound, I will be doing the radioactive iodine uptake & scan in October. If not, there may never be RAI uptake & scan in my future again.

So either way, I have my low iodine cookbook ready....ready to use or ready to burn.

The pink is back

It only took 4 and a half hours today, but I have a lot of pink streaks in the bottom layer of my hair and very dark reddish brown in the rest of my hair.  I love it!


Before:






After:

Here it is all down:




Some pulled back so you can see the pink underneath:

And it starts to show...

I lost enough weight to need a lower dose of my thyroid meds. I guess with every 20 pounds I will need to go in for a blood test to see if I need less synthroid.  There's really no benefit to needing less synthroid as far as I know.  It's just cool to hit a milestone.

I have really been struggling with keeping my willpower.  I haven't side tracked at all, but the temptation is very high.  Especially with the stress of the cancer stuff.

Update

My appointment with my endocrinologist went alright. She didn't feel anything in my neck.  I will be having an ultrasound of my neck and hopefully that will help to discover why I have trouble swallowing.  If anything is wrong, I'll be having a scan.  If not, I'll have thyrogen injections and a blood test.  Should be over by mid-October.

On the upside, my sweet husband took me out for a picnic lunch at the hospital. I love going there and watching the swans. 

I might glow in the dark: Year 4

Today I begin the first step in my yearly cancer check-up.  I know what to expect.  There won't be any surprises. The first step is a visit to the endocrinologist's office. She'll examine my thyroid bed and my neck and hopefully she won't feel anything inside there.  There hasn't been anything in there since November of 2005 (except for the spring of 2007 where one crazy lymph node gave me a scare). We'll talk about what diagnostics are necessary to make sure that the cancer hasn't come back, that there are no thyroid cells floating around in my body. And then I'll make a bunch of appointments to carry out those plans.  I might wind up on the dreaded low iodine diet. I'll spend a lot of time at the hospital one week. I'll get some shots.  I might get some radioactive iodine. I might have an uncomfortable neck ultrasound. I'll have a blood test or two. It will suck, but I've been through it several times before. No surprises.

So why do I have an ominous feeling this year?  Why have I spent the past two nights filled with panic over seeing her?  For one, I am symptomatic.  I have trouble swallowing.  That is the only symptom that I noticed before my initial diagnosis.  It's the symptom that led my surgeon to take out the "nodule" on my thyroid after my biopsy didn't show any cancer.  It's that symptom, that nodule that turned out to be part of Stage III tumor. It's probably about 10 times more likely that any trouble swallowing I have is related to my queen-sized tonsils rather than a tumor.  After all I have had 4 doctors feel my neck recently and not one of them has found any cause for concern.  But still the panic lingers...

It's more than worries about tumors that causes me to dread this check-up.  It's the reminder that I am a cancer patient.  That at any time in my life, those crazy thyroid cells could start growing again...that the cancer could make a repeat performance.  The reminder that thyroid cancer can come back after 20 years. I will never be done with this.  Every morning of my life, I will wake up needing to take Synthroid to replace my thyroid hormones and fool my brain into thinking that nasty thyroid is still there. Every morning I will feel nauseous as I wait out the recommended time to eat breakfast.  Taking pills on any empty stomach has never agreed with me. I will always see that scar on my neck first when I look in a mirror. And I will always need an endocrinologist.

And last but certainly not least, there's the survivor's guilt.  This time last year my Dad was just about to start his cancer battle.  A battle that he lost.  On the day I was diagnosed, during my long walk out of my doctor's office I made a bargain with God/the universe/some higher power.  I would be sick, but I would be the only one who experienced the big C.  I would take one for the team.  But cancer would leave the rest of my family alone. That was the deal.  Was I not sick enough? If I had anaplastic thyroid cancer instead of follicular/papillary would it have been enough?  Was it because I didn't need chemo?  Is that why he got sick and I got to live? I remember taking him to radiation and chemo.  I remember him asking me "Is that what it was like for you?" And I remember a crushing feeling of guilt and sadness as I responded "No Dad, I didn't suffer like you do".  I still wish that I could have suffered more so that he would have suffered less.

In my head I know that I really don't have the power to make a bargain like that.  I couldn't guarantee to take one for the team.  But a small part of my brain says differently.  Along with that it creates the fear and the panic.  It whispers to me "maybe this time you won't be spared....maybe this time you don't deserve it".

But then I remember this:

July 13th, 2010 I celebrated 4 years of remission. This year at Relay For Life I wrote 4 years next to my name.  I'm kicking cancer's butt. I've been doing it for 4 years now.  I'm doing everything that's really in my power to win this.  That's what I know for sure.  The crappy part about cancer though is that is all I can count on.  But maybe that's enough?  Enough to get me through to year 5 anyway right?

Berry Picking

Some photos from Saturday when we went raspberry picking at a local farm.

Recharging the batteries

Although I'm not in school this semester, I have had a crazy week. Doctor's appointments, things to figure out, lots of laundry (who is wearing all these darn clothes?!?) and loads on my mind. I got my GRE study book, so I also have started that. My brain is on overload which I have learned is my biggest symptom of having an anxiety disorder. It feels like a ball in a pinball machine bouncing around from one stress to the other, trying to sort it all out. I feel kind of lost and overwhelmed.


So I am taking a "me day" today. While I am excited about making changes in my life, I am also stressed out about it too. So today I am just going to decompress. I got the house cleaned up already so I can just relax until it's time for the kids to come home from school. How often does that happen?


I got my hair cut this morning. I also made in appointment for 2 weeks from now to get it colored. I'm going to do a dark brown (or maybe black, I am trying to decide) all over color with hot pink chunks in the underneath of my hair. I am really excited about it.





I wish it would stop raining so I could get outside and get some exercise, but you can't control mother nature. So I'm going to paint my nails, read a book and just relax. Recharge my supply of mom patience and rest my brain a little.