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.

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 know if some of those he plucked from up by my ear were positive (or really any of them), if there was anything else of concern that would dictate a different follow up moving forward.

Next up for me? Continuing to heal, which involves rest and sleep. Although the sleeping is awesome, the resting all of the time is challenging. I want to do more, which means I get tired more easily, which means I am not helping the healing process.

Slowly but surely, I'm getting better.

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 much. My jaw and ear were so sore (little did I know it would get worse), and I had a big lump when I swallow. We all know what staying overnight in the hospital means...you get woke up every 1-2 hours for a variety of seemingly unimportant reasons like blood pressure readings, IV adjustments, etc. Bleh. Plus, it's hard to sleep when your neck is pounding. Voice is scratchy too.

Saturday afternoon, I was able to come home. Again, painful but ready to be home. I overdid it...stayed up for five straight hours. No bueno.

Sunday was the worst day yet, which also happened to be Mother's Day. Pain was off the chart even with the pain meds. Neck was swollen, I was hungry but didn't want to eat and voice is shot. And I had approximately 1,000 people in my house for Mother's Day. I hid in my room, and all found that to be fine. Good thing!

I have got to take this recovery slowly. The biggest different I discovered, after a chat with my surgeon today, is that he was digging around up by my ear for lymph nodes, which has left me with an ear-ache/infection like pain. Jaw and ear pain is new for this thyroid cancer girl, and I wasn't looking for any sort of new experiences. Surprise! I always have a twist to these thyca surgeries these days...why would this one be different?

So for next few days, I am determined to be like a baby...eating and sleeping. I cannot do much else. Oh, and I take pain meds too, and the surgeon had me add in ibuprofen, which controls it better now.

How does the song go...."I'm not sick, but I'm not well." Yes, I guess that's me. Certainly not "sick" like flu or bronchitis sick, but I am so not well. This lymph node/ear/jaw pain is crazy and exhausting. And I've got to be patient. And I'm not good at being patient. Bless my husband, mom, aunt, and little one's heart as they deal with me.

Next up? Pathology report should come on Wednesday. Will report on that when I know more.

Thanks for your support and prayers as always....

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" in your mouth....strange). I didn't immediately have issues with my salivary glands post RAI but did at my first dentist appointment after treatment and surgery in 2008 (maybe four months later). It was like my jaw locked up. Strange and horrible feeling.

Then there are the lymph nodes....those awesome things on the right side of my neck are not my friends and were not MCA's. Prior to my first surgery in 2008, the radiologist had identified several that were "worrisome" that the surgeon would need to evaluate and/or remove. He took 14 and four were cancerous, two the size of small plums. The surgeon is looking for two more of those biopsy-confirmed, cancerous lymph nodes on Friday.

MCA was 47 when he passed. I am 44.

He's a singer from New York. I never knew him. But music has a way of making us believe we know someone and have a connection. Music is healing and heartbreaking and fun and wonderful and....I feel a connection with a person who passed yesterday that I never knew.

Surgery this Friday is creeping in on me like a fog not hitting me as a train. It's a slow and torturous buildup to the unexpected. Yes, I know what the surgery is and what is to be done so how is it unexpected? The surgery is expected, the results are unpredictable. We know what the surgeon is looking for but what will he find? He has found surprises, and not good ones, with my previous two surgeries.

Some have said, and I agree, that there is something to be said for knowing what to expect this time. Yeah, I know what to expect....and it scares the crap out of me.

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 things to me often to make themselves feel better. Certainly not knowingly or with bad intentions, but I can see this happening. Like "it will be fine" or "you will have the surgery, and they will get it all this time." These statements could be true just as they could be false. Honestly, it depends on what mood I am in when it is said how I take it.

Advice aside, I've got to take care of me, and I'm struggling with it currently. If you are paying attention to the timing of this post, it is almost 3 AM on a Monday morning. I can't go to sleep at night. I struggle to stay awake during the day. It's a vicious cycle. What's the problem? My mind is constantly going....constantly. My body is tired and weary, really tired.

I'm praying for peace...and sleep.

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....maybe not my choice to get my neck chopped on, but it's the route I'm going with. I still may have a radioactive iodine blast post-surgery.

The surgery does not come without risks. There is a chance of nerve damage in a variety of ways. I could lose my voice or it could be very hoarse and weak as it was for three weeks post-surgery in 2008. There could be issues with calcium or the parathyroids. Surgery always has risk. Surgery for the third time on your neck - definitely risks. But I've got to do it. I can't walk around with cancer in my neck, right?

Emotionally, this time has been tougher than I thought it would. I know the drill, all about the surgery, the statistics so why so hard? It's not a "why me" kind of emotion. More of a "not again" anxiety and depression, to be honest. It doesn't help that since my biopsy, I haven't felt well at all. Cold and/or allergy medicine didn't touch it. Today I saw my primary doc, and she said with some swelling on my neck and a swollen throat that it is either a virus or a post-biopsy infection.

So let me get this straight, 2012: bronchitis that knocked me off my feet for weeks in January, a thyroid cancer recurrence, and a virus/infection post biopsy and it's not even April? C'mon....I'm not a fan of you so far, 2012.

So I'm dusting off my "cancer card" (see the book "Crazy Sexy Cancer" by Kris Carr) and will play it from time to time as needed. Sometimes, it's all too much, then I remember the great family and friends I have.....And that I will do all I can to fight to be around to see graduations, weddings, and grandchildren, and that makes all the difference in my attitude.

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 down.

Those are the facts as I understand them. Here are my feelings: My TG has not been this high in almost three years. My gut tells me I have a recurrence. Is it my gut or am I being pessimistic? Or realistic? I'm not pessimistic by nature. But I have learned with this thyroid cancer business to prepare for the worst then be pleasantly surprised if it is something otherwise.

I'm terrified on one hand, trying to stay calm on the other. It is easy for others to say, "Well, until you have all of the information, don't worry." Sure, I'll get right on that. True, the truth is we don't have all of the information. The ultrasound hasn't happened, the TG could go down.

I'm going to work on my anxiety. I really am. Staying busy with work and soccer and Morgan's upcoming birthday....these things will help until I have my ultrasound and we know more.

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 later, my doctor himself called. We all know what that means, right? Bad news.


"We have an interesting situation...." or something like that, he said. Scans were clear, blood test was not. How can that be? Sometimes a scan doesn't get "everything." OK...."What is more reliable?" I asked. He said the blood test. He went on to say that I was going to be "one of those patients" in his practice that he watched carefully, and he has. My thyroglobulin (blood test) eventually moved to an acceptable level so this is good. This stablized my cancer-free status.


And here we are again...what will they find? Nothing? Nodules (turned out to be cancerous) growing in my thyroid bed where my thyroid used to live, like they found in 2009 with my recurrence? Metastasis to lymph nodes like with my original diagnosis in 2008? Metastasis to the lungs and bones, the most common locations where cancer moves to in those with thyroid cancer?


Hopefully it will be just....nothing. Uneventful. Zero. De nada.


When do I find out the results? At my doctor's appointment on Valentine's Day. Hopefully it will all be good news. I will keep you posted.