Sunday, July 28, 2013

Back to the Doctor...and 10 Things I Hate About Thyroid Cancer

OK, look at the last time I added a blog post....yes, January. Ridiculous. It's been too long since I've written, and I apologize for that. Time marches on, for the good or bad, and it has slipped away from me.

One item on my thyroid cancer timeline I see not documented in my blog: I did get more bloodwork done in April. It was good news: no change in the thyroglobulin. Just gotta keep on top of it and make sure that it doesn't get above 2.0.

I'm going to see Dr. W on Friday to check in, let him tell me it's time to get it and the TSH checked again. And...OK, here's the thing: I feel something/am having strange twinges on the left side of my neck. Everything has been on the right side to date so maybe......what is it? I will listen to my gut and let Dr. W tell me it's nothing rather than assuming that. Because even though I can say "oh, it's nothing," the thinking about it and worrying will drive me crazy.

Also, I discovered yesterday an amazing blog post I had to share from fellow thyroid cancer fighter Sarah Young ( if you're following along on Twitter): 10 Things I Hate About Thyroid Cancer.

Although all are gems, here's my personal favorite:

4. The “new normal” sucks.

Being thyroidless brings all sorts of unwelcome symptoms. You’re tired all the time. Sometimes you are freezing. Sometimes you get hot flashes and sweat through your clothes. Your menstruation gets screwed up. Your hair falls out. You forget things. You’re clumsier. You’re depressed. You’re anxious. But the worst thing is that you never know how you are going to feel on a day-to-day basis, so there is no “normal.”

Be sure to check out the full "10 things" at this link: http://thyroidlesslife.com/2012/06/22/10-things-i-hate-about-thyroid-cancer/.

Thursday, January 24, 2013

Light at the end of the tunnel

It's been a long, hard road for me this third time around with thyroid cancer. My third diagnosis with papillary carcinoma, this time in my lymph nodes of my neck, came in March 2012. My third diagnosis of papillary carcinoma in four years.

I knew the drill, been through it before, but I was stunned that I had to do it all again. After my surgery, I pushed alot of people away, scared that this was it. That I would never be well again. That I was the 2% of people who die from papillary carcinoma.
 
Yesterday I completed follow up testing for my third round with thyroid cancer last year. My blood test needed to be under 2.0, and it was 0.5. Also, the radiologist who has done every ultrasound and needle biopsy on my thyroid/neck since 2008, said of yesterday's very thorough ultrasound: "Let's give you some good news for once. I see nothing. Nothing to watch or be concerned about."

THIS is terrific news. 

I may never have to fight this battle again. I might have to fight it again sooner rather than later. But today, right now, these results made me smile. 

I am grateful. I am blessed.

Friday, October 12, 2012

Dr. W calls again....and again

So Dr. W finally got back with me about the letter I sent him in September. He called last Friday, and I missed his call.  He left a message that said he would call back AND HE DID. I mean, wow. Not very often a doctor will try to call a second time. He had a good excuse for his delay in contacting me as he had been out of the country, and I can understand that.

Remember, right after third surgery my thyroglobulin (TG) was 0.5. My concern was in August, it was 1.3. Was an increase, even if under 2.0, bad in terms of changing his mind on radioactive treatment or anything else? He basically said not to worry about the increase in TG because it was still under the magic number of 2.0. There were a number of factors that could have affected it to change just that little bit.

What's next? Dr. W said to go see him in January 2013 for an exam and the order for the next blood draw to check out my TG again and ultrasound. Basically, I will enjoy the holidays and deal with this again next year. Works for me.

Thursday, September 13, 2012

Letter to Dr. W

The latest and greatest (?) on the beast that is thyroid cancer, best expressed via the letter I sent to my new endocrinologist/thyroid cancer specialist:

Dear Dr. W,

Thanks for seeing me back in June 2012 and for your follow-up letter indicating that my thyroglobulin (TG) level at that time was 0.5. This was great to hear, that and the news that as a result of the low TG test you felt that I did not need the radioactive iodine treatment at that time.

I am enclosing my most recent blood work for your review and records drawn by Dr. Pun. I am concerned that my TG is now 1.3. I understand that it is good that the TG result continues to be below 2.0, but are you concerned at all that it is now in an upward trend?

My current questions for you as a result of your letter sent to me and June and this latest TG result:

  • When should I have my blood drawn again?
  •  Are you concerned about my latest TG result of 1.3?
  • Does this 1.3 TG result change your mind about radioactive iodine?
  • When should I see you again? I believe you originally said January 2013 in your letter, but I wonder if this has changed as a result of the upward bloodwork trend.
  •  When should I have my first baseline ultrasound post-surgery? Should this be before or after my appointment with you?

I very much would like to continue seeing you to address my recurrent thyroid cancer (three times in four years). I look forward to hearing from you soon regarding my questions.

Saturday, August 11, 2012

You're A Pain in the Neck

I have had three surgeries to remove thyroid cancer from my neck in four years. For the third time in four years, I have stabbing pains in my neck after surgery.

"It's a good thing. It's the nerves growing back and regenerating." This is what the surgeon said when I asked about it the first time. This information still does not prepare you for the first time you feel that stabbing pain in your neck, as if someone took the tip of a knive and stabbed you just enough for you to feel it.

So I should be prepared for them this time, right, as sadly I'm an old pro at this thyroid cancer business. I was prepared but still surprised when the stabbing pain returned.

Although it is a good thing, it is still a reminder. For me, it is as much of what I have been through as what could be.

I can't help but wonder if it is really over or if I am going to continue to be in the 30% sorority/ fraternity of those with recurrent thyroid cancer. More surgeries? Will I get a secondary cancer? Will I be in that small percentage of those who die from papillary carcinoma?

I don't know, and I'm not going to obsess over it. I can't. One day at a time....

So stabbing pains, keep on reminding me of what I've been through. Even if it is a foreshadowing  of what is to come as well, I'm ready. Done it before, can do it again.

Tuesday, July 24, 2012

Gone but not forgotten

In the excitement of learning my thyroglobulin level post-surgery was undectectable earlier this month, my cancerversary passed without fanfare or observance. July 15, 2008, is the date I was first told that I had papillary carcinoma, one of the four types of thyroid cancer.

Since that day in 2008, I have:
  • Had three surgeries
  • Two scars on my neck
  • Had two recurrences
  • Had one radioactive iodine treatment
  • Lost most of my ability to sleep like a normal person
  • Yet realized that I want to sleep more than any human probably should
  • Learned more about myself than I ever thought I could
  • Figured out that I am strong
  • Found out you can't rely on doctors to take care of you. Only you can take care of you.
  • Learned alot about the people around me, both good and bad
  • Have seen my anxiety level increase to new heights
  • Have isolated myself more than I should because most days it feels like no one gets it
  • Have trusted others in general less than I did before my diagnosis (which wasn't much to start with)
  • Have weathered the highs and lows of cancer recurrence
  • Stood up for myself like I never have before
  • Know myself better than I ever have
So here's to another year of surviving cancer. May many more do so - survive, that is. May I continue in my journey of learning and surviving.

Friday, July 13, 2012

Undetectable

This is the word in the letter I received from the endocrinologist that was unbelievable to me: UNDETECTABLE.

"Your thyroglobulin is now undetectable at less than 0.5, indicating that Dr. Sanders performed an excellent surgery in removing the involved lymph nodes and we have reason to be somewhat more optimistic at this time."

Out of frustration more with the situation of having thyroid cancer for the third time in four years than with my current endocrinologist, I sought out a second opinion on what to do next following surgery. I wanted someone to confirm what my current endocrinologist's plan was for moving forward.

As a result, I met with Dr. Leonard Wartofsky at the Washington (DC) Hospital Center in June. Google him, and you will find that he is an endocrinologist specializing in thyroid cancer and that he has published many papers on thyroid cancer and radioactive iodine treatment. In fact, he only sees thyroid cancer patients. This is what I had been looking for - someone I have total confidence in about his/her knowledge of thyroid cancer.

Other endocrinologists I had met with treat all types of endocrine problems. Dr. Wartofsky - he only sees thyroid cancer patients. I have had this stuff three times now. I really wanted a specialist, and I got it.

You may wonder about the "somewhat more optimistic..." quote above. When I initially met with him, besides being in awe of his knowledge of thyroid cancer - saying things no doctor had ever said to me about the diagnosis - he listened. He wanted to hear my story from the beginning. He asked about the question I had and didn't dance around them. Yes, fellow thyroid cancer patients and survivors, it's true - an endocrinologist who didn't rush me out and listened!

Interestingly, he had a colleague from Europe observing him that day so he was part of the consultation/examination. When I told Dr. Wartofsky that my thyroglobulin this spring was 5.8 and that two positive lymph nodes were removed, they had an exchange and, of course, I chimed in:

Dr. Wartofsky: "Do you think that with a TG of 5.8 and two positive lymph nodes that the surgeon got it all?" (Of note, this is not a knock on the surgeon's skills but rather the sneakiness of thyroid cancer cells.)
Colleague: Smiles sheepishly and shakes his head no.
My reaction to this: "You think that I will need radioactive iodine therapy to be sure we got it all?"
Dr. Wartofsky: "It's likely. However, let's see what your thyroglobulin level is today and go from there."

With that, the three of us expected my thyroglobulin to be in excess of 0.5...probably more above 2.0, which is the upper limit of  "you probably have a recurrence" or "there are still thyroid cancer cells in there."

It was undetectable. Wow.

What's next? Keep monitoring my blood work this fall and an ultrasound January 2013.

What isn't next? Radioactive treatment....For that, I am grateful.

I'll take "somewhat optimistic" over thyroid cancer any day.

Wednesday, June 6, 2012

My rants while somewhere in between

It's been over three weeks since my surgery. I'm somewhere between post-surgery and back on my feet. Better than the alternative, I know. Still feeling pretty crappy in general.

I've had some strange swelling above my incision for about a week. Let's backtrack...first week post-surgery, definite swelling. It went away week two and reappeared week three. And I understand the shooting pains in my neck and that they are good. That means the nerves are regenerating, coming back with a vengance. However, I have this strange achy feeling from my ear to my jaw where the swelling is.

My endocrinologist noticed it on Monday, said I could ask my surgeon about it. I called the surgeon's office, and they worked me in to see him. He said it is not uncommon to see fluid collection when removing lymph nodes, to ice it as needed and use ibuprofen as needed. If it does not go away by July 1, I should go back to see him about possibly draining this or treating it with steroids.

Speaking of my endo...I'm getting a second opinion. He has already said no radioactive treatment without seeing thyroglobulin results. Didn't order them until the end of the summer. He said if we see anything at that time then yes, radioactive treatment. That doesn't match up with what he told me prior to surgery. Oh, and he told me that I "just need to learn to live with it." I do...I get it, but that stinks. I just need someone else to tell me that is a good course to take. Referral endo, please confirm some of this madness for me.

I read somewhere once (in one of my many Google sessions) that with every cancer recurrence, your possible survival rate goes down. Can anyone confirm this for me? I will research it more. Anyway, it stuck with me.

And MCA from the Beastie Boys...his death keeps sticking with me. His cancer was of the salivary gland, which has a survival rate of 91%. MCA was diagnosed in 2009 and died earlier this year. He was in the 9% of those who die from salivary gland cancer. Am I in the 4% of those who will die from thyroid cancer? I certainly will fight it, not plan on it at all, and will stay positive, but these are sometimes the things I ponder.

Someone I know who was recently diagnosed with thyroid cancer was told "you will not die from thyroid cancer." Not true. If you have cancer, you could die from it. Yes, the survival rate is high for thyroid cancer, thank goodness, but let's be real. It can happen. Some research has suggested even a link between thyroid cancer and breast cancer. Does thyroid cancer open the cancer floodgates?

I guess I am sensitive to this as I was told that I would have my cancerous thyroid gland and lymph nodes out in 2008 and that would be it. It would be fine, easy peasy and back to work in no time. I struggled...could not talk except in a whisper for weeks, was in the hospital for four days, not the quick overnight as predicted., and had a tough recovery period. And look at me now, with it again...third time in five years. I'm part of the 30% of thyroid cancer survivors who have a recurrence

Another thing told this to this person: "thyroid cancer does not spread." Hello...it can spread to the lymph nodes (exhibit A, me times two) and can also go to your lungs and bones. I have read about people who have this situation. Granted this is in a very small percentage of people, but it can happen.

I hope this person has a much better situation than I have had with thyroid cancer. In fact, I pray that for her. Desperately. I know some who have had it once and are cancer free to date...for years and years, and I am happy for them!  I was not prepared for my current reality but for the yank-your-thyroid-and-never-get-it-again reality. That is not my reality. But who is prepared for this madness?

Lots of percentages in this post. Can someone please just call me a thinker and not a worrier? I want the information and want to analyze the "what ifs"...is that necessarily worrying?

My rant is concluded.

Thursday, May 24, 2012

Two steps forward, one step back

Everyday, I am feeling better in terms of my neck. The sore, sometimes random pains have mainly shifted from my ear/jawline to the actual incision, which is to be expected. Example: last night, it felt like someone was pricking my incision with straight pins. This is good, as I understand, as it means that the feeling is gradually starting to return to the area. If the pain is too intense, now I just take a dose or two of ibuprofen throughout the day for pain instead of percocet. Swelling has mostly gone down, but I do notice a little still.

Tomorrow is my post-op appointment with the surgeon. It has become a ritual of some sorts that my mom attends this appointment with me then, after Dr. Sanders takes off the last of the steri-strips remaining on the incision, they both curiously stare at the incision on my neck. This has happened with all three surgeries. In fact, my mom scheduled her flight back to Oklahoma on Saturday so she could attend the appointment with me and conduct said ritual with the surgeon.

The most exciting thing I believe he will say to me is that I can drive again. My poor mom has been braving the mean streets of Northern Virginia, the DC Beltway, and 66 driving me and Morgan around. As mom says, "Oh, the humanity of it all here!"

I'm struggling with my energy level more than anything now. I am trying to get back on a regular sleeping schedule, but I think my body is still demanding more rest and sleep. I am fighting this, trying to resume some sort of normalcy in my life. However, I did give in yesterday and take a two-hour nap mid-day.

The real issue is my trying to do normal things when I don't really feel quite normal yet. Maybe 60%-ish? It's coming along, but it is the dance of "Yes, I feel great!" and do too much, then crash. I want to push myself to get back to normal but just can't push it too far. Two steps forward and one back.

Good news? I'm here. Present and accounted for. Functioning. Moving forward each day. It's all I want right now in terms of my health.

Friday, May 18, 2012

Pathology Report

Nothing much to see here...two of six lymph nodes positive for papillary carcinoma. Basically the two lymph nodes shot with dye got top billing.

My first reaction: Dang, took those extra ones.

Upon further review: Glad he took those extra ones as lymph nodes on the right side of my neck don't have a great track record. To date between two surgeries, six of 20 lymph nodes have been positive (there's that term again...) for cancer. Maybe those four extra he took would grow cancer cells in the coming years and he saved me another surgery? Who knows...glad he took them all as a preventative measure.

I overdid it yesterday. Not as many naps and too much activity. I'm down for the count today. My mom says she is not taking me anywhere today and, in fact, I will have to walk if I have big plans. No big plans are made. I will not be walking the streets in my PJs, no worries.