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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 …

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:

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 seco…

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 surgeriesTwo scars on my neckHad two recurrencesHad one radioactive iodine treatmentLost most of my ability to sleep like a normal personYet realized that I want to sleep more than any human probably shouldLearned more about myself than I ever thought I couldFigured out that I am strongFound 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 badHave seen my anxiety level increase to new heightsHave isolated myself more than I should because most days it feels like no one gets itHave trusted others in general less than I did before my diagnosis (which wasn't much to start with)Have …

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…

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.

Spe…

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 …

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.

Slowly but surely

The pain is subsiding. Here is the best way I have found to describe it....it feels like someone took a bottle brush and twirled it on the right side of my neck from my ear along my jawbone to under my chin to my clavicle. Make you wince? Yep, me too. The swelling is still there but markedly better.

Sleep seems to still be the best medicine. When I get sleepy and tired, I feel like my body is saying, "hey, we need to do more healing. Get to sleep," and I haven't had too much trouble falling asleep at all since last Friday.

I still don't know my pathology results. My surgeon and I keep playing phone tag. I do know he took a frozen section during the surgery of the two lymph nodes that were shot with blue dye, which confirmed the papillary carcinoma.

So what should the pathology report show? That at least those two lymph nodes were positive (an ironic term for cancer, right? I digress...), but he also removed "a bunch" of other lymph nodes. I would like to kn…

Round three begins: "I'm not sick, I'm not well."

My third thyroid cancer surgery was Friday, May 11, 2012. Before going to surgery, I paid a visit (along with my entourage, as they called themselves, of my husband, mother, and Aunt Freddie) to the radiologist so he could inject the two known cancerous lymph nodes with blue dye. This was done and then circled with a blue sharpie on the outside of my neck for good measure (and lots curious looks).

After a one hour delay, surgery was underway. Surgeon said he was easily able to identify the offending lymph nodes and take them. Said he also took some others for good measure and/or he didn't like the way they looked. Said he could see my jaw from where he was in my neck. Super. Of note, he did have to make a new incision on my neck. This one starts on the right side of my neck about midline down from my chin and goes from there to close to my ear. A lovely addition to my growing collection of battle scars from thyroid cancer.

In the hospital post-op, I was hungry but couldn't eat…

MCA, you got me thinkin' about more than "Brass Monkey"

Adam "MCA" Yauch died yesterday, May 4, 2012 (left in the photo). He was a co-founder of the Beastie Boys, one of my favorite groups of all time. While working yesterday afternoon, I played Beastie Boys music, revisiting some of my favorites, thinking of the times I have smiled and sang "Brass Monkey, that funky monkey..." with my youngest daughter.

MCA's death hit a little too close to home. The parallels are continuing to haunt me.

MCA had cancer of the parotid or salivary glands with lymph node involvement. With my first surgery, I had issues with a parotid post-surgery, which causes you to need calcium medically given to you until the calcium levels are adequate to leave the hospital.

When thyroid cancer patient have surgery, this is often followed up with radioactive iodine treatment or RAI. Often folks treated with RAI will have salivary gland issues have the treatment - maybe blocked or dysfunction (imagine trying to swallow without some "juices&qu…

Proper cancer etiquette

So what is the proper etiquette when you are post-diagnosis for the third time with thyroid cancer and pre-surgery? Life as usual? Just keep going, doing your regular thing....sure, I guess. But the cancer is always "running" in the background. Not necessarily running the show but running. But life goes on so actually, yeah, really...life goes on.

On the flip side, I don't want to go through life for the next month sad and depressed. Of note, this is serious business, neck surgery for the third time. Mulitple surgical risks beyond the "usual" anesthesia concerns. I am most certainly anxious and scared.

So I'm wrestling with this....normal vs. cancer normal. It's been a while, just over three years since I have dealt with cancer and a recurrence. I wasn't ready for it...who is?

People have lots of advice on this and frankly, truly all meaning well. My husband said something wise to me tonight about this, and basically it goes like this - people say thi…

Dusting off my "cancer card"

After sticking the needle in my neck yet again, the biopsy was positive as we all expected. For the third time since 2008, the pathologist, Dr. Brown, told me that I have "metastatic papillary carcinoma."
Many who know me may remember that I had my thyroid removed in 2008, along with 14 lymph nodes, may ask "how can you have a recurrence if your thyroid is gone?" Thyroid cancer, or mine in particular - papillary carcinoma, can recur in a variety of forms and place other than the thyroid. For me, it is the right side of my neck in my lymph nodes. For my 2009 recurrence, three cancerous spots were found in the thyroid bed where my thyroid used to live.
What is next? I was able to meet with my endocrinologist Wednesday after the biopsy, and he presented options. Basically he could "blast me with radioactive iodine", but there is no guarantee they would "get" it all. His recommendation was to proceed with surgery, which is my choice as well. Well....m…

Third time is a charm? Third time stinks.

So....unfortunately it seems my gut (and the thyroglobulin blood test) was right. Ultrasound showed two "metastatic" lymph nodes. Same right side of the neck where I had four cancerous lymph nodes in 2008. Radiologist said we could biopsy them but he showed me...."here is what a normal lymph node looks like. But here is what this one...and this one look like. Not normal....with metastatic characteristics."

Third time is a charm? Third time stinks. First diagnosed in 2008, recurrence in 2009, and now a recurrence in 2012. About 30% of thyroid cancer survivor struggle with recurrence, and I am in that 30%.

What's next? A procedural biopsy next week. Surgery next month.

Those are the facts. I'm still sorting through the emotions of it all so more on that later. Thanks for your prayers and positive thoughts.

Reluctant, Incomplete Update

I kept waiting for complete results to post the "final" results here on the blog. However, I still don't have it all, but here we go....

Good news: scans are clear! Hooray!

Maybe bad, certainly incomplete news: I finally got my thyroglobulin (TG) blood test back, and it is 5.8. Optimal is 2.0 or less. My last one was 0.6 about a year ago.

According to my endocrinologist, the blood test is the best indication of a possible recurrence issue going on. This same thing happened two years ago when my scan was clear and blood level elevated. Eventually my TG came down, and that was good because that is what counts, the TG level over time. Summary: one elevated TG result does not indicate a recurrence.

The other thing that still needs to be done is an ultrasound, which is scheduled in about two weeks. If they find anything questionable during that, then we move forward with a recurrence discussion of what to do. If not, we keep monitoring/taking TG levels and hope that it goes do…

Again, again!

It's Super Bowl Sunday, but, I will admit, I am a bit distracted. Tomorrow I start the ritual thyroid cancer survivors are familiar with: the thyrogen shots, the radioactive dose, the scan, the blood test. Why? To see if I am still thyroid cancer free. The schedule:


Monday: thyrogen shot
Tuesday: thyrogen shot
Wednesday: radioactive iodine dosing
Thursday: whole body scan
Friday: blood draw


It's been a bit of an anxiety-filled week getting ready for this. You spend the time thinking and telling others, "It's fine. I have done this before." No matter how many time you do this, it is still nerve wracking and makes you crazy.


30-35% of those with papillary carcinoma, the most comment form of thyroid cancer/my diagnosis, have at least once recurrence. I had a recurrence in 2009. Some with thyroid cancer have several recurrences.


Interesting a scan and a blood test, right? In 2010, I got the call from my endo's office that the scans were all clear. Hooray! Three days late…