Apparently that "woohoo" was a little premature...

And the other shoe has dropped....sort of. I heard from my doctor yesterday about my blood test results and the next step in this great thyroid/lymph node adventure....and it's not the news I wanted. My thyroglobulin value is between 0 and .2.  I realize that I'm not going to hear a definitive "cancer free" and the best I can hope for is "undetectable". So that's a good result.

However, we are still not sure why my lymph nodes are huge.  So in March, I will repeat the neck ultrasound.  Depending on those results, I may have the thyrogen shots and thyroglobulin (TG) blood test again.

So the good news: my TG value is less than .2 and there won't be any cutting into my neck to get out lymph nodes right now.

The bad news: I had hoped this would be my last round of testing since I'm nearly 5 years out from my surgery and radioactive iodine therapy. At this point, I should be able to go off the yearly protocol. But instead I'm back to testing every 6 months. I feel disappointed, sad and somewhat angry. I want to move on with my life.  I have spent 5 years of my life worrying about cancer and I just want to be done. But I'm not done.  I'm still in limbo. It's still not settled.

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.

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.

Day 1

Today is Day 1 of scan week. I had to get myself and Abby up early to go to the hospital for my first shot of Thyrogen which will make me hypothyroid as my TSH (thyroid stimulating hormone) shoots up high enough to have the scan. I told Abby that I would be getting a shot in my bum this morning. So of course in the quiet waiting room she wanted to talk about my shot in the butt and her fears that I would scream when they gave it to me.

I asked her, "Do you want to stay in the waiting room and play your Nintendo DS or walk back with me when I get the shot?"
Her reply: "I want to stay in the waiting room so I don't have to hear you scream!".
I said: "I'm an adult and adults don't get to scream about shots".

I told my nurse about my conversation with Abby. She thanked me for not planning to scream. Not that it would matter...they'd still give me the shot. Although I'm not fond of big needles in my bum (actually more my hip), I did NOT scream. The screaming comes later...when the hospital bills arrive.

Tomorrow, second dose of Thyrogen via injection in the morning.

Good news

We just got back from the pediatrician's office and happily Abby is improving.  She is still having a little trouble breathing and will still be on a bunch of meds, but she can go back to school on Monday. 

Oh and for those wondering how could she get pneumonia so fast...the doctor said that people with asthma often harbor different bacteria in their lungs.  So I guess asthma patients get sick quicker.

Earlier in the week I got my latest thyroid panel results which was also good news. My TSH was .03 which is a little low.  My free T4 was 1.8 which is the highest that you can be and still be normal.  So repeat in 3 months. Since I put this off so long, I'm glad it turned out a-okay. I'd feel pretty stupid if it was problematic and I'd put off fixing it. 

Test Results

My doctor called me this morning to give me my test result from Friday. There was no thyroglobulin detected in my blood, so this means my cancer is still in remission. My TSH (thyroid stimulating hormone) was 73 and should be .05 and this is due to being off my drugs last week and getting the injections of thyrogen. It should take about 8 weeks for my TSH to go back to .05 and unfortunately during that time I will have the hypothyroid symptoms, most notably extreme fatigue. It sucks because I will be sitting down trying to read my homework or in class and just fall asleep. In the past I have been pretty bummed knowing that I will go through that, but after having several months of being at the correct TSH and feeling great, I am not as worried about it. I know it's temporary and I know that I can feel good. But a heads up, if you are talking to me while I'm hypothyroid and I suddenly start snoring, its not you...it's too much thyroid hormone in my blood.

Cross-posted to Myspace, etc, so sorry if you see this more than once.

Day 2 of Hypo Hell

I received my 2nd shot of thyrogen today. I didn't have the horrible anxiety that I experienced yesterday thankfully. The injection hurt a lot more though which I think I remember being the case before. I gave myself permission to miss class today because of sore fanny and the start of the hypo symptoms being a little overwhelming. While I don't like having the hypo symptoms, it's good to know that this drug I had is working. This drug that by the way, cost as much as if Josh and I went to Mexico for a week and stayed at an all-inclusive resort. But anyway....

So I figure that not everyone knows what I am referring to by "hypo". According to the thyroid cancer survivor's organization, this is what you can expect when you stop taking your replacement drugs and go hypo:

Hypothyroidism Symptoms Following Temporary Withdrawal from Thyroid Hormone

* Weakness, lethargy, cold intolerance, paleness, dry skin, coarse hair, and constipation can occur with hypothyroidism. Other symptoms may include delayed reflexes (such as the knee jerk when the knee is hit with a reflex hammer), brittle nails, increased blood pressure, and a slow heart rate.
* 'Some patients will feel relatively well except for tiredness. Some patients will feel extremely fatigued. However, older patients have greater hypothyroid manifestations, and some patients will have a difficult time performing daily tasks.Thus, as a precaution, all patients who are hypothyroid should avoid making important decisions and driving or operating heavy machinery for one to two weeks before and after the [radioiodine] scan or [radioiodine] treatment
* in many patients few symptoms occur in the time required to prepare for a radioactive scan or treatment or during the weeks afterward restarting thyroid hormone.
* However, patients experience a wide spectrum of symptoms during their period of temporary hypothyroidism. A few patients feel the same as before. The great majority feel considerably slowed down, both physically and mentally. Some describe it as feeling mildly sedated. They can converse and do household chores, but their reaction times are slower. They are also more prone to errors when doing tasks involving attention to details. A few patients feel more severe symptoms from among those described above.
* The time of recovery from the symptoms of hypothyroidism also varies from weeks to months, and this at least in part depends on how long it takes to appropriately adjust the dose of thyroid hormone


I would like to add to these:
* a headache that never wants to go away.
* staring at my hand
* staring at the wall
* not making sense when talking
* walking into a room and forgetting why I'm there
* feeling too tired to eat or just wanting to sit & eat nonstop. Can't win with the eating!