Thyroid cancer in the news

I was reading on the internet this evening that President Cristina Fernandez, of Argentina, was recently diagnosed with Thyroid cancer and will undergo surgery next month. I also learned that the first drugs to treat Medullary thyroid cancer, two kinase inhibitors, have been approved. So amid all the people that are being diagnosed with thyroid cancer this year, medical break-throughs are still happening.

I still feel very lucky to have had a clean 1-yr WBS and undetectable stimulated Tg/TgAB. I still worry about it every time I miss my daily Levoxyl or afternoon T3 - How much am I exposing myself to elevated TSH? What if there are any cancer cells that are still roaming around in my blood stream that have had the opportunity to 'wake up' and grow every time I have missed one of my pills? I know, I need to stop worrying, and just make sure to take my pills on time.

Neice's college graduation. I feel old.

The problem w driving overnight is when to take my meds in the AM. To stay awake, I drink coffee and eat constantly, so no empty stomach.

Endo says...my levels are good, but I am not feeling so good. Depression? Labs/ultrasound before next appt, in April. Referred to eye doc.

Blood work from last week: TSH .03 / Free T4 1.0

.03 is better than <0.01, which means I am not as supressed as I have been.

How does my neck look? 12/4/11

I have an ENDO appt this Thursday. Went for a blood draw this past Thursday afternoon. I'll check tomorrow if my ENDO posted my levels or not. Not sure where they will fall since I have missed at least one afternoon T3 dose for the past three or four months. Still worried about how that affects my levels, knowing that missing that one dose means missing 30% of my suppression for that day. I thought he said he wanted another ultrasound, since the first one post surgery and RAI was 'abnormal', just can't remember if that was before or after my appt this week.    

I have not had that tugging feeling along my scar in a few weeks. My arm/shoulder issue still isn't completely healed, but it is much better now, so I am hoping that was what was causing it.

This morning I will be going with my parents to the San Juan Capistrano Mission, to the St Peregrine chapel. This time it is not for me, it is for my mom. She had some x-rays taken this past week when she went in for a cold. She got the call back on Friday that they found a mass on her left lung. A mass on her left lung. I remember when I got the call from my doctor's office after my first ultrasound. The nurse said they found a mass on my left thyroid. Was that a mast or a mass, right? Why do I have a ship in my throat? Then I was told I was being referred to a specialist. My mom was referred to a Pulmonary specialist and a CT scan was ordered, with blood work to proceed the CT scan. Now, I know that doesn't right away mean it is cancer. At least that is what they tell us. But what else can that unknown mass be? And since it is a mass and not a speck, it has some size to it. I'm worried, but who wouldn't be?

I think she has a more positive outlook on this than I did for myself. Although the circumstances were a little different for me. I knew for myself that it had to be cancer when my ENT (the second specialist I saw) told me during the consult. Up until that point, I thought, 'nah, I'll just have to take Synthroid to regulate my thyroid, that is all that will come of this, my ENDO said 5% chance of cancer, right?' But the minute my ENT said "20-30% chance of cancer", boom - that is why I started to ball my eyes out for the rest of the consult. Knowing the cancer history in both of my parents families, I knew I couldn't be in that lucky 70%. The whole time my mom just kept on telling me not to think that way, even when I was being walked to the OR for my first operation 'don't think of it that way.' For my mom, we haven't even talked to the first specialist yet. That is tomorrow afternoon. My mom said her dad had lung cancer, that he smoked cigars. Her mom died of I think it was cervical cancer. I hope and pray that it is not cancer, but if that is in the cards for my mom, I pray that it is early enough to do something about it. The thought of losing any of my siblings or my parents is scary, but the thought of losing my mom....I think that is the hardest loss anyone can have regardless of how old you are.

Health check

While my thyroid cancer issues seem to be under control, the rest of my body issues have not been.

I have been going to PT for my chronic right arm and shoulder pain for a little over a month now. I even went to see a Neurologist for possible nerve damage and have an appt for nerve testing next week. My right arm and shoulder have been feeling better and stronger the past couple of weeks, but I can still feel twinges of pain with certain arm movements - during pilates, picking up things or reaching for something with my right arm, lying down regardless of what side I lay on, these things still seem to irritate my right arm/shoulder. My PT says whenever he works on my T4, C4, and C5 areas, I seem to have better mobility. I was only given two exercises. Things are progressing a bit too slow for me. With my brother and nephews in town for the holiday, I decided to give it a go when I took them to Solid Rock earlier this week. I did a few routes, and I can say for sure that I am not ready to climb just yet. My PT wasn't too happy with me the next morning when I went in. Hopefully I didn't do too much damage by going climbing when I wasn't supposed to.

Last Friday (11/18), I had my appt with a Rheumatologist for my knees. First thing she says to me is 'You should not be running....you have osteoarthritis.' I know that, but why shouldn't I be running? I was confused because no one up to this point had told me not to run, at least not that I remember. Not the Rheumatologist I saw four years ago, not my PCP or her backup, not the PT for my knees. She wrote out the things I need to do: continue my PT exercises, including the ones I have to do at the gym (I've only been doing the first two I was given since my last PT session for my knees at the beginning of October), get down to my ideal body weight (like I haven't been trying, right?), stop all high impact activities (no running). If my knee pains don't improve over the next couple of months, she said we would talk about getting injections. Great. I was sent to get updated x-rays of my knees. Four years ago, my x-rays showed mild bilateral osteoarthritis, tri-compartmental in the right, patellafemoral in the left. This time, bilateral and tri-compartmental in both - the left knee got worse! So she said absolutely no running.

I just couldn't get over the 'no running' thing. I was already up to running twice a week. I had picked out a new pair of running shoes last week after run club and was looking forward to picking them up this week. WTF. I had a PT appt the afternoon after my Rheumatology appt. He told me he didn't think I had to completely stop running because the x-rays can only tell you so much. That sounded promising. I also asked my chiro about it this week. He said the same thing, but I definitely had to start out walking first and work up to it. My acupuncturist agreed with the Rheumatologist, and is concerned about trying to stop my knees from further degeneration. All I could think was that hearing 'you have osteoarthritis' was way worse than hearing 'it was cancer....we need to take out the other side.' At least my thyroid cancer can be surgically removed and managed by my replacement thyroid hormone meds and annual checkups, but OA, well, there is no cure for it.

I had jokingly mentioned to my Rheumatologist that I was probably going to see her in a few weeks for my right arm issues. So she checked it out as well. She looked at the notes for my right arm and said I went to see the Neurologist because of a droopy right shoulder. Huh? She initially said, 'rotator cuff injury', but after a few mobility tests, said it was probably tendonitis. All I could think to myself was 'great, next think it'll be arthritis again....argh!!!' My PT said he thought that my droopy right shoulder may have something to do with my arm/shoulder issues, especially since the droop is more than normal for the dominant side. Interesting.

So, my body seems to be failing me. My thyroid cancer stuff...well, I go in for my blood work pre-ENDO appt next week. Hopefully the several times I have missed my afternoon T3 dose won't completely screw up my thyroid levels.

Happy Thanksgiving 2011

There are many things I have to be thankful for. At the top of my list is my family, and then of course my health. Happy Thanksgiving to everyone!

Rheumatologist says: NO RUNNING.

Neurology appt

The neuro doc told me that my PT thinks I may have a pinched nerve. However, he didn't see any areas of concern, but he still wanted to cover all of his bases and do the nerve/needle test before sending me off to an arm doc. So, I go back in for that at the beginning of next month.

I probably seemed like a nut-case to the neuro doc. "Does my arm feel numb or is there tingling? Numbness means you can't feel anything, so can you feel anything or not? What kind of action results in that feeling?" Huh?!? I honestly felt like I didn't know, and it did not help that the pain/soreness I was experiencing in my arm/shoulder the day before wasn't exactly the same as I had been experiencing - I had soreness along my right shoulder blade in addition to a very unhappy supraspinatus and the normal pissed off deltoid. Then came some more personal questions, like "Why is your left eye (lid) droopy?", and "How long has your right shoulder been lower than the left?" He did a full neurological exam on me, similar to what I remember seeing my dad go through after his stroke last summer. Then he messed with my right arm, a lot, so it was no surprise that my right arm and shoulder were very sore the rest of the day.

Yesterday, at my PT appt, my PT again said he gets the best results after he works on my spine (the C 4 and 5, and T4 areas, I guess). However, I have not had any trauma to my spine. So I guess that is why my arm/shoulder pain are a bit of a mystery to my PT. Was happy that he ended the session with heat instead of ice this time. Later, at run club, I was getting soreness while running. So, I don't know then if it is getting better or not because it didn't hurt last week or the week before during run club. 

Right arm update - 11/1/11

Last week was interesting. I got a call from my PCP's office that I was scheduled to see a neurologist for possible nerve damage in my right arm/shoulder. That appt is later this morning. Not sure what, if any, kind of testing will be done on my arm/shoulder area, so I am a little nervous about my appt.

Based on my PT eval the week before, I wasn't sure what was going to happen at my PT appts. I am happy to report that my PT has been a lot more pleasant in every session since the first one, and my right arm and shoulder pain seems to be improving. Whether or not they like it my Acup, Chiro, and PT are working together since I tell each of them what seems to be working in my other appts and any other pertinent info one of them may say about whatever they see is problematic with my rotator cuff muscles. My PT said I have issues with my T4 and C4 and 5. I have no idea what that means, but I try to ask about everything he is doing, what muscles he is working on, so I can get more familiar with the anatomy of my arm/shoulder. I have not been given a lot of exercises like I was for my knees. In fact I was just given my second PT exercise to do on my own, at home at my appt yesterday. Interesting.

I was having problems relaxing my right side. My PT said that was because I had prolonged pain in those muscles, so I don't really have a lot of control over them. That got me thinking that maybe that tugging feeling I am still getting along my scar is from those muscles. He said it could be possible, but was not definitive about it.

I was really bummed that I had to tell my climbing partners that I had to hold off on climbing for another couple of weeks. At least I can run, so I am trying to do that at least twice a week. I'm starting all over again, doing the jog/walk thing, trying to go a whole mile without stopping. Trying not to over do it. So far, my knees are doing fine.

So, I have this neurology appt....just hoping for the best. Everyone seems to have their own opinion as to whether or not nerve damage is an issue or not. I really hope it is not what is going on in my arm/shoulder. But I have to wonder because I seem to have "cell-phone-itis", that is I get that numb pain in my right elbow whenever I spend a lot of time on my cell phone checking emails, texting, checking Google+, etc. A couple of years ago I switched my mouse at work from my right hand to the left because my right arm was getting numb from using the mouse. Not really carpal tunnel, I don't think, but that numb feeling I was getting in my wrist feels the same as the dull/numb pain in my elbow....could that all be contributing to my right arm/shoulder pain, then refereing to my scar giving me that tugging feeling in that area?!? I wonder....

How does my neck look? 10/24/11

How does the neck of a 42 year old thyroid cancer survivor look?

Can't they all just get along?

That's for all medical care professionals. More specifically, my doctor, PT, acupuncturist, and chiro. Each of them telling me the others don't know what they are talking about is not going to get rid of the pain in my arm and shoulder, or what they have all identified as a rotator cuff injury. ARGH!!!

I went to my PT eval for my right arm pain on Thursday. I told him how my acupuncturist and chiropractor both assessed my pain (deltoid and supraspinatus, respectively). Of course, he wasn't impressed with either, even told me 'that's not it', shaking his head, until I had said they both said it was a rotator cuff injury. He asked if I have ever had any neck issues. Then he palpitated my back, by my shoulder blades, and pointed out that on my right shoulder blade area, the infraspinatus, was atrophying. Great. He didn't seem convinced that he could 'fix' it since the atrophying seemed unexplained. It could be something else. He said within two sessions, he should be able to tell if the treatments are working. I could possibly need further diagnostic testing. Like what, I asked. He said 'nerve testing.' Great. He gave me one exercise to do. I don't even remember if he said I needed to do it every day or not. He said he needed to see me twice a week. An ice-pack was put on my shoulder, and that was it. I scheduled my last PT appts (7 of the 20 total), which go into November. An hour later, my right arm is killing me, more so, since my PT spent at least 10 mins moving it around to test for strength and see what hurt during his eval. Oh yeah, he did tell me not to climb (but he did not say I could not belay anyone....).

Friday, I am at my chiro appt, and I of course tell my chiro what happened at my PT appt the day before. All he says is, 'well, physical therapists are not doctors....' Great. Here we go again. He wanted to know why an MRI wasn't taken of my shoulder since it has been bothering me for so long. What he did do was work on my right arm so it didn't hurt as much from the PT eval from the day before. He did the same thing that my first PT did when they were working on my knees. It felt good for a couple of hours.

Now, I am still getting that tugging feeling along my scar. Since my PT was asking about previous neck pain, I wonder if all my unhappy rotator cuff muscles could be contributing to the discomfort along my scar.

PT says: Unexpected atrophying and range of motion in RT shoulder, infraspinatus muscle. It all worried him. PT appts 2x/wk.

Finally, I have a PT eval appt tomorrow morning for my right arm/shoulder.

A little worried that my right arm is still sore, even after 5 days of taking Naproxen. Shoulder isn't so bad, minimal, in fact.

2011 Thyroid Cancer Survivors' Conference - Day 3

I learned a lot at the conference. But I am mentally exhausted.


I was hoping it was going to be a 'light' day, then I walked into a Pediactric ThyCa session. The ENT/speaker said he had worked on a patient as young as six years old. 6! The good news for young ThyCans is their prognosis is way better than it is for adults, their cancer (if it is papillary) responds to RAI, even in their lymph nodes, and they also seem to do better when going 'hypo' in preparation for a WBS.

Another session I attended was about TSH suppression. I asked the Endo/Speaker how fast my TSH would rise if/when I forget to take my afternoon T3 pill. I thought it would take a while, esp since I am so suppressed. She said it could rise relatively quickly, since I would be missing 30% of my medication for that day. Well, that is not good, especially since I seem to forget my second T3 pill at least once every other week.

It was a lot to absorb in three days, but I am so glad I was able to attend the conference this year. The 2012 ThyCa conference will be in Chicago, October 19-21, so mark your calendars!

2011 Thyroid Cancer Survivors' Conference - Day 2

Exhausted. So much information to take in, again. I appreciate that a lot of the speakers either had thyroid cancer or thyroid disease.

Because there are no sessions specifically for Hurthle cell carcinoma, I tried to take good notes whenever it did come up in a session. Interesting that there seemed to be a disagreement as to whether or not HCC falls under Follicular ThyCa, or if it is a separate disease. I think I did get a better idea as to why my ENDO categorizes me as 'low risk' - they categorize by as many features as possible, so the fact that my main tumor was 3.2cm HCC wasn't the main determinant. They also take into account metastasis, vascular invasion, and RAI uptake outside of thyroid bed, among other things.

I stayed for part of a session on coping with and the gifts of thyroid cancer. One lady said that she 'didn't want to be anyone's hero because of her cancer, she just didn't want to have cancer'. Wow. I hate to say this, but she is living in denial. The sooner she can accept her cancer, the sooner she can move on with her life. She has cancer, it cannot be taken back; you cannot erase every second up to the point just before you were diagnosed. I think the first year is the hardest because you just don't know what to expect. But you will get through it, we all do. But you have to be strong. You need to learn about your disease, know what your options are, be your own advocate. No one else will do this for you.

The program is shorter tomorrow, but I just want to go home. Not sure if I'll stay for the last Roundtable session or not. Since my right arm is still a bit sore, even with the pain killers, I think I better skip trying to do some bouldering at Hangar 18. Maybe next time I'm in the area, and not so mentally overwhelmed. 

How does my neck look? 10/14/11

I haven't posted a shot of my neck in months, it seems. I've had too many other issues that I've been worried about lately - my knees and right arm. I am still get that weird tugging feeling along my scar. I really wonder if my arm/shoulder pain has anything to do with it.

Anyway, here is my neck 17 months after my second/completion thyroid surgery. I have been looking at a lot of scars today. Some are so faint, they are hard to see. Some are so well disguised by the creases in their necks, much like mine. Some are still red, fresh scars from just a few months ago. Our scars start out looking scary, horrible, impossible to heal. I think mine looked very Frankenstein-ish especially after the second surgery, the way the blood dried under the derma bond tape. But it tells the world that we are survivors.

As for my other issues....I saw my PC doc on Tuesday. She said 'you have a rotator cuff injury'. Per her recommendation, I am taking 500mg of Naproxen twice daily, for 3-5 days to see if the pain goes away. I am on day three, and my right deltoid/arm still hurts. The shoulder/supraspinatus pain is mostly gone. I am awaiting a call to schedule my first (of my 8 remaining, for the year) PT session for my arm. My knees have been doing pretty good. Not perfect, but a lot less pain for both. I tried jogging/walking on Wednesday. My right knee still felt a bit uncomfortable during the whole thing. But I have not had too many issues going up/down the stairs at the gym. I just don't know if this is a result of the Naproxen I am on, or if my knees are really just that much better. Still hoping things will clear up, for my knees and arm, soon. I really miss running and climbing.

2011 Thyroid Cancer Survivors' Conference - Day 1

So I didn't exactly wake up as early as I had hoped for the drive up to LA for the conference, but I made it in time for the first session. It was an 'Open mike', where you could meet other ThyCans and hear their stories. I was surprised at the number of Medullary thyroid cancer survivors in my session - there were four. I have never met a ThyCan with anything other than Papillary or Follicular/Hurthle cell ThyCa, so I was a bit overwhelmed since I don't know anything about it. One guy had Medullary and Hurthle cell. There was also a 38 year survivor, and another guy, from Portugal, with Hurthle cell carcinoma. There was a married couple that were both diagnosed this year with ThyCa. They grew up in a area close to I think a rocket testing facility here in California, so they wonder if their cases are environmental, not hereditary.

During the lunch break I ran into a couple of members from my support group, so I caught up with them as we picked up our box lunches. Then I found two more members in the lunch session I went to. I have to say that some of the session titles are a bit misleading. Like the Advances in Research session was presented by an Oncologist that does trials for differentiated (Pap/Foll/hurthle) and medullary thyca, when I thought it was going to be about general research advances. It was very enlightening to hear about the clinical side of thyroid drug trials which are generally for those that can no longer be treated by RAI, thyroid hormone suppression, or surgery. I hope I never get to that stage, but if I do, I think I will seek out the speaker, who works at PENN.

There was so much that was covered by each speaker, I don't know if any of my notes make any sense at this point.

I went to dinner with one of the members from my support group. We started our journeys around the same time last year. She attended last year's conference. She told me, during the lunch session on Familial Pap/Foll ThyCa, that Hurthle cell is considered to be progression from Papillary ThyCa. The leader of that session said that Anaplastic ThyCa is the result from untreated Pap ThyCa. Wow. I had no idea how these were related. Anyway, we took a trolley tour bus down to Manhattan Beach for dinner, ending up at a restaurant called LA Food Show. Not bad.

Tomorrow, I am looking forward to the session on Alternative treatments.

Here, at the Thyroid Cancer Survivors' Conference in Los Angeles.

Chiro says my RT arm pain is from my supraspinitus. Whatever, it all felt worse after the massage, right before he adjusted me. Great.

Appt w Rheumatology on Nov 18, for my RT knee. Some PT ex's still aggravate RT knee, so still holding off on run/climb for now. <sigh>

Steve Jobs, innovator and co-founder of Apple, passed away today. Cancer had claimed another.

ThyCa group meeting - October 4, 2011

Can't believe it is already October. It was a good meeting, as usual. We had a new member join us this evening. She's a 25 year old law student, and she was very refreshing. She's only seven months out from her thyroidectomy, and she seems to be doing well. Like the rest of us, she needed to be around people who were or have gone through the same things as her, so we are all glad she found our local group.

Looks like we have a pretty good group going to the ThyCa conference next weekend. We are going to try and meet for at least one meal during the conference, to catch up and see what everyone else has learned or enjoyed during the conference. I am really looking forward to the conference - to learning more about the latest research going on for ThyCa, and of course meeting other ThyCans.

Just finished last PT session. Wish I could say both knees were 100%, but can't. At least after a wk off from climb/run-ing I'm not limping.

The watery eye...

So other than the weird feeling I've been getting around my scar, my left eye has been watery on and off. Several weeks ago I decided to start using the eye drops I was given for my pink eye bout earlier this year, just to try and clean/clear out whatever bacteria is stuck in my left tear ducts. That just made it more watery, so I stopped after the second day.

The amount of times and volume of water that comes out of my left eye varies from day to day. It used to be that by mid-day, it would dry up enough so I wouldn't have to dab it until later in the evening. However, the color is changing now, and I am having to dab more, throughout the day. Crud. So, when random people ask, I just say, "Oh, it's just allergies". No point in giving them the whole, long, story about my ThyCa journey that has brought me to my first year of being "clear" and my only side-affect from treatment thus far being this damn watery left eye! No, I save that special story for those closest to me.

So how is the rest of my body doing? Well, still not so good. My last PT appt is this Monday (10/3/11), and what do I have to show for it? Nothing. Right after my first session/eval, my left knee started to hurt. They said it was because my left patella wasn't tracking properly, hence the pain any time I went up or down stairs. At the same time, my right knee stopped hurting so the focus was on the left knee. There seemed to be no improvement for my left knee until around the middle of last month, right around the time my right knee started to hurt, again. Yes, back to the right knee. Let me point out here that my right knee started to hurt and swell/stiffen, again, at one of my PT sessions. And it hasn't stopped!

Around the same time the right knee started to hurt/swell, I was given the go ahead to run twice each week, but still only 1 mile each time. Well, my right knee would be stiff/swollen the following day after a run. It got bad enough that I started to take Aleve for it (and my right arm). That only made me think I could climb, when I shouldn't have been doing that either. So, I tweaked my right knee while climbing last week. It was so bad that I could barely walk last Friday, and I could feel something catching when I moved it. My acupuncturist said it could be that I have really tight IT bands, hence the 'catching' feeling I am having around my right knee. I told her I thought my knees have been over compensating for each other, so the pain shifts from one to the other. I never really thought about my IT bands before, but now when I touch them, they sting, like they are on fire. Great. So, I got this really cool foam roller called the "Trigger Point Grid", or something like that. I bring it with me sometimes when I go to the gym. Not sure if it is helping or not. Most of my PT exercises aggravate my right knee, so I only do the handful that don't. I haven't run or climbed in over a week now, which has been a good thing because I can almost walk without a limp on the right side, but I still don't have good range of motion in the right knee. ARGH!!!

And what about the right arm? Well, the first time I got a needle in the armpit (three weeks ago) was the best it had felt in the past four months. I only had a slight nagging feeling along the outside of my right arm. So good, that I decided not to climb for a day or two, so I could live without arm pain for a few days. But, sure enough, when I did climb that week, it started to hurt again. At the next session, I got another needle in the armpit, but this time it wasn't as successful as the first. This week, it seems to be as bad as it was when I started my acupuncture appts. So, my knee and arm pain seem to being going in circles, and not going away. I'm so tired of this.

I can live with the daily dose of T4/T3 that I need to take in order to stay alive and keep any thyroid (cancer) cells from growing and spreading. But I don't think I can live limping on one side or the other or with a gimpy arm.  If I had to choose between daily thyroid meds for the rest of my life, watery left eye for the rest of my life, or gimpy limbs for the rest of my life, it would be thyroid meds, hands down. But having to deal with all three, which right now seems like for the rest of my life, really sucks!


Anyway, Thyroid Cancer Awareness month has come and gone. This month, however is the Annual Thyroid Cancer Survivor's Conference. This time it is in LA, and this time I am going. I finally saw the program schedule the other day. I was a little bummed that there will not be any sessions on Hurthle cell carcinoma, when there were several last year. That's why I really needed to go last year, but couldn't because of a mandatory work function. I hate it when work gets in the way.

Strangest feeling on left side of my neck when I got up this morning. No lumps or bumps in that area. It is like the tingling along my scar.

Thyroid Cancer Awareness Month

Did you know that September is Thyroid Cancer Awareness month?

According to the ThyCa.org, it started in 2000 as Thyroid Cancer Week. In 2003, it became Thyroid Cancer Month. It promotes awareness for early detection, care/treatment, and research for all forms of thyroid cancer.

Thyroid cancer is one of the fasting growing cancers in the US. Last year, I was just one of roughly 40,000 people that were estimated to be diagnosed with thyroid cancer in 2010; this year, that number is expected to increase, which has happened in recent years. Unfortunately, thyroid cancer is often labeled by our doctors and surgeons as 'the good cancer' because the 5-year survival statistics are better than those for breast and lung cancers. All I can say is there is nothing good about having to take replacement thyroid hormone for the rest of you life after having to go through surgery and in some cases a round of radiation. Nothing. Despite how slow growing this form of cancer is, people still die from it every year. Nothing good there either.

If you would like to learn more about Thyroid Cancer, please take a look at the following links:
* ThyCa.org
* About.com Thyroid Disease

10 years later 9/11/11

The first time I visited NYC was the summer of 1993. I never made it back until the fall of 2007. On my return trip, at the top of my list was to see "Ground Zero".

I remember exactly what I was doing 10 years ago. I was living in San Francisco at the time. I got up for work that day, was mentally preparing for an interview, when I heard a lot of commotion on the radio, so I turned on the TV. They were replaying the first tower getting hit. "WTF?!?" was pretty much the only thing going through my head. The news coverage showed many New Yorkers staring in amazement, like the rest of the country was. I watched for a few minutes, but had to get ready for work and run to catch BART. At the time I was working in Oakland. Somehow, I made it on BART before they closed it down. I got to work and there were maybe 10 people there. I was told to go home. I tried to call my interview contact, but that office was closed. Every office in San Francisco and Oakland was closed.

10 years later, I'm back in SoCal. I am one-year thyroid cancer survivor. 10 years later, many of those first responders at 'ground zero' are suffering from many ailments and diseases, among them cancer. More specifically, thyroid cancer. I found this article last year (here). I'll never know how or why I got thyroid cancer, or how or why anyone gets cancer, but I think it is pretty clear that there are environmental causes. Mostly from radioactive fall out (Chernobyl, Hiroshima, and most likely from the Fukushima Daiichi Nuclear Power Station disaster earlier this year). Kinda crazy how no good deed goes unpunished. I think regardless of what the outcome, many of us would have done whatever we could to help if we were there, live with the consequences later.

When I made it back to NYC in 2007, I took as many pictures of "Ground Zero" that I could. Here are some of my favorite shots from that visit:

9/11/11

Lights came back on around 1am.

Blackout in San Diego county since about 4pm. It stretches from Tiajuana to Palm Springs. I stayed at work until 6pm, to wait out traffic.

How does my neck look - 9/6/11

I was able to swap out my old phone for a new phone this afternoon. As a result, I was late for my ThyCa support group meeting this evening. I hate missing these monthly meetings, so at least I only missed 30 minutes. We had one new member, a lady that has been on her journey for seven years, the whole time battling hurthle cell carcinoma. I missed her intro, so I asked her about her diagnosis after the meeting. She said they caught it too late as it had already entered her blood stream - she has had metastasis to her bones and is currently receiving external beam radiation treatments in two of the affected areas. Wow. It was a lot to take in, especially since my 1-yr WBS and blood work came back clear. Now more than ever before I feel blessed that my thyroid cancer was discovered and treated as early as it was. There aren't that many ThyCans with HCC, so as much as I am glad to have other ThyCans with HCC in my support groups (local and listserv), it is really humbling to see someone on the extreme opposite end of HCC from me. She goes to MD Anderson for treatment, so I think I know which cancer center I will be heading to if I ever have HCC recurrence.

I was looking forward to taking my first neck photo with my replacement cell phone. I had high hopes for it, but guess what? - the red tinge is still there! So all I can think of is that it must be the lighting - maybe there isn't light enough in my bathroom? I'll try to take more photos at work, or elsewhere, I guess. It is just really disappointing that this seems to be an issue with the phone itself. Ugh! I can't be the only person having this problem.

Anyway, how does my neck look?

How does my neck look? 8/31/11

Well, still haven't managed to make it to the Sprint store to complain about the issues I am having with the camera on my cell phone, so although I have been taking photos of my scar, I have not posted any of them because of the red coloring that shows up in all of my neck photos, regardless of how I hold my phone when I am taking the photos. But, it is time, since I think the last time I posted a photo of my scar was a month ago.

The weird tugging on the right side of my neck hasn't been bothering me much for the last two weeks now. And, I am happy to report that so far this week, I haven't needed an afternoon nap (at work), so I think that is a good sign. However, I still have problems remembering to take my afternoon T3 dose on the weekends. I just need to take them with me no matter where I go - the gym, shopping, wherever, I need to take them with me so I always have them.

I was looking at some of the unfinished prescriptions I have from the past year. I have bottles for 175, 137, and 125 mcg of Levoxyl. I think the only one I could use is the 175, if I split it (87.5 mcg v the 88mcg I am on). Doesn't matter anyway, I guess because all of these unused pills either expired today or a couple of months ago. What a waste. I was thinking of seeing if anyone in my support group needed any of my unused pills, we could do some sort of medication exchange. Not self medication, just giving away what I can't use. I may not be able to do it with my expired Levoxyl pills, but maybe someone else in the group has unused pills that could offer to someone else. Levoxyl isn't as expensive as Synthroid, but it still adds up over the year.

Anyway, how does my neck look?

Acupuncturist says...

"No climbing for two weeks; if you go to yoga, absolutely no chattarangas." I went climbing twice this week, and after both sessions, my right arm was not happy, at all. Last Sunday, my right arm got very agitated during the class, especially while doing chattarangas. So the recommendation, of course, was to rest it - lay off the climbing, or modify the yoga pose (do a downward dog instead of a chattaranga). All that while she was needling my back and right arm.

When she came back to remove the first set of needles, I asked if I could at least belay if I couldn't climb. She said, "As long as your right arm doesn't hurt while you are belaying." Fine, I can deal with that for two weeks. In went the second set of needles, on the front side, and e-stim on my right arm.

When she came back to remove the second set of needles, she had a compromise for me: "If I kinesio tape you, you can either climb or do yoga, but not both." Wow - unexpected, but I wasn't going to turn that down. Tape me up! So I now have this lovely black tape on my right arm and part of my back. Kinesio tape is waterproof, so should last for about a week. She explained what it does, which I don't remember word for word, but I think the basic idea is it creates a space between your skin and the muscles below it, which somehow allows the healing process to take place faster. If it works, why not?

Full week

It was a non-stop week. I got the bad news (cut down my runs to 1mi/wk) at PT on Monday. Hit the gym Tuesday night to do extra PT exercises. Wednesday night run club. Thursday in LA for my mid-year review, then climbing and another trip to the gym to do my extra PT exercises. This evening was my first acupuncture appt with a licensed acupuncturist (I used to go to students at PCOM). And that's not the end of it. Tomorrow, me and Angelo will be getting hair cuts. Sunday....not sure what I'm going to do yet - get up early enough to watch some run club buddies run in the AFC 1/2 marathon? go to the gym? I really should just sleep in.

It was so good to go climbing last night after about a month off. In that time I was hoping my right arm pain would go away, but it didn't. I ended up not even finishing my last route last night because my arm hurt and I was just wiped out. At least my arm would have fresh pain for my acupuncture appt this evening.

I think my acupuncture appt went well. My arm and left knee feel pretty good now, well neither one was bothering me today. The part of her evaluation I was looking forward to was the posture grid. The first thing she noticed was that my left shoulder was higher than my right. Check. To compensate, my right shoulder pulls forward and my neck tilts to the right so I can walk straight. In addition, my right hip is lower and tilts forward. Next, she did some mobility tests on my right arm. Only one of the rotator cuff tests she did on me hurt, and I was weak in another test. All other tests went well. On to the treatment. She says to dress down to my undies, lay face down. Wow - I never had to do that at any of my appts at PCOM. She needled areas on the right side of my back and shoulder, and a few points on my calves. 20 mins. Then she cupped my back. Two cups, but I didn't see any marks on my back after the treatment, so that was nice. Then she did a few more points, on my flip side, on my feet, legs, and arms. 10 mins. I decided to make an appt for next Friday - she said I need to come back at least a week later, so she can see how I responded to the treatment. The pain could be contained for up to 1.5 days. As my treatments progress, the area of the pain could be reduced, but become more painful. So I need to monitor how things feel between my treatments, and let her know what changes.

During the spinal injury test she did on me, I felt that odd tingling in the right side of my neck. I didn't say anything, since it doesn't really have anything to do with my right arm pain. Or does it? I should monitor that tingling thing as well, let her know if it gets worse.

Acupuncture appt was informative. Shoulders and RT hip are out of alignment. First time I ever stripped down for needles & cupping.

I wonder if it is Ok to take my T3 pills with wine.

Situation

So I finally decided to call the sports medicine acupuncturist that had spoken to my running group a few weeks back. She actually needled my right arm that night because it had been hurting on and off for a couple of weeks at the time. She was out yesterday when I called her office to make sure she took my health insurance, so she called me back this afternoon. I like the idea of looking for the bio-mechanical root of the pain, not just treating the pain locally. Something about putting me in front of a grid to see which areas of my body are imbalanced. She said she'd take a look at my hip issues as well. My appt is on Friday. The first appt is 90mins so she can do an assessment, then a treatment. This should be interesting.

I stopped getting acupuncture treatments last summer, after my RAI treatment. At first, it was because I didn't want to accidentally expose anyone to radiation. Then I just started to freak out about any remaining thyroid cells being stimulated enough to grow, allowing my cancer wake up, and spread. It probably wouldn't, but I think I got that idea from the fact that they had recommended one of the instructors to work on me after I told them I might have thyroid cancer. I was thinking of taking that treatment route, but ultimately, I decided it would be better for me to know, for sure, that I had thyroid cancer, and the only way for me to do that was to have it removed surgically.

Now the running thing. This evening was run club. Monday night after my PT session, I was thinking of continuing with my current running program (3mi road, 1mi treadmill intervals x2) because I had already cut down from 5 days (3 road, 2 treadmill intervals) . But the more I thought about it, the more I thought it might be best to comply for a few weeks, and see if there is any improvement. So, I decided to do a mix of jog/walk over 2mi (walk .5mi, jog .5mi-1.5mi, walk 1.5-2mi). No pain during the run. No pain on the steps going to the start of the run. But boy did my left knee hurt last night when I was at the gym doing some of my PT exercises. So, although I won't be running as much over the next couple of weeks, I am hoping that I find some other workouts to keep me out of trouble, and improving my hip strength.

Physical Therapist says - part 3
I have to cut down on my runs. Optimal is a one mile run 1x/wk; elliptical and bike the other days. Crap.

Who needs Oil of Olay?

We don't. The 'we' in this instance being me and a couple of my friends from SF. Long gone are the days when I'd be hanging out on a weekend evening with Jen, Andrea, Victor, and the rest of the gang. We are all in our 40's now, and I don't think any of us looks a day older than we did we when all lived in SF over eight years ago. Sure there are kids, mortgages, and health issues in the picture now, but I think we are all aging well. We all look younger than we are, but I was amused to hear that I am not the only one that feels '40' sometimes when I get up in the mornings. And we are all worried about our parents, but for varying reasons. It was great catching up with everyone.

I have only kept a very small circle of family, friends, and co-workers updated on my ThyCa journey. Jen is one of those people, so I had a little bit of explaining to do with Andrea. It is still weird talking about it, whenever I open up about it, but at least now I am moving on with my life. So even if it is still weird, at least I am not waiting and worrying over my next treatment, and wondering if things will ever be normal again.


Other updates....
In addition to hanging out with friends, I finally got the calorie counter on my Garmin to work. None of my previous runs showed how many calories I expended during my runs. I had contacted Garmin Support (GS) last weekend to report the mapping issue (running through peoples yards and three instances during a run where my elevation increased by 200 ft!). During one of the email exchanges I had with GS this past week, I told them I was also having problems with the calorie count always being '0' for each run. I was told to master reset it twice, using two different methods. I was skeptical, but it worked - my calories were counted during my treadmill run this afternoon. The last run I did outdoors was at run club last Wednesday, so I still don't know if the mapping issue was also fixed with the resets.

Yesterday, my left knee was really bothering me, so I was afraid to do any running. In fact this past week was not a good week for my knees. Tuesday evening I went to a yoga class. I forgot the name of the pose he had us do, but it really killed my right knee. A LOT. I was surprised that I didn't have any pain, in either knee, during run club the following day. Going down (and sometimes up) the stairs at the gym was still painful this past week. And, I had random pain during exercise or just shifting my left leg around while sitting or even lying down. And, it doesn't help much that I skipped my evening PT exercises a couple of times this past week because it was late and I was too tired. Hopefully the sum of all of these things does not mean that I undid the past five weeks of PT sessions. That would totally suck!

So, I have 12 PT visits, not 6. Thank goodness because it sounds like I still have a lot of work to do, esp for my left knee pain.

T3 issues

Looking over my posts for this past week, it seems that I am having problems with this medication - I lost one, they taste funny, I forgot to take one... Thank goodness I only have one or two more doses left in this bottle.

I am surprised that I was not tired yesterday afternoon, when I had forgotten to take my afternoon dose. I did crash really badly last night though. From the ThyCa email listserv, the way to correct missing a dose of Levoxyl/T4 is to take two the next day. I don't ever remember reading anything about what to do if you miss a T3 dose. T3 is fast acting, and short-lived, so I don't know what the benefit would be for taking two of these at the next dose. Could it make my TSH increase high enough to allow any thyroid cells, good or bad, to produce Tg? I doubt it, but I really hope this is not possible.

Other than the missed T3 dose, the only other thing to report is that tugging sensation in my neck is still there. I think I should only be worried if I feel some odd lump on the right side of my neck, like a bigger than expected lymph node. All I can do is keep tabs on how I am feeling and if I feel anything out of the ordinary anywhere on my neck. The minute any of this info changes is when I need to contact my ENDO. Hopefully everything is copacetic for the rest of the year.

I forgot to take my afternoon T3 pill yesterday. Didn't realize this until 10pm, which was too late to take it.

Oh WOW!!! I just found out that my swim star niece won the 200-meter breaststroke final today at the US National swim meet in Palo Alto.

My T3 pills taste.....funny. kinda like sour milk, or sour something, but they just don't taste right. I noticed it earlier this week.

Lost one of my T3 pills this morning while I was fumbling around for my water bottle.

ThyCa group meeting - Aug 2, 2011

We had a pretty good turn out at this evening's ThyCa meeting. Probably helped that we had a guest speaker - an ENDO that manages the care for a couple of our members. His presentation was very informative, and he explained things well. Enough such that a few members are interested in switching to him as their ENDO.

A few things he mentioned:
-There are five forms of thyroid cancer - the one we had not heard about is 'lymphoma'. It is treated more like a lymphoma, along the lines of leukemia and lupus, not like thyca.
-Thyrogen shortage: this time because particulate matter has been found in the vials, so production has been stopped for the time being.
-Thyroglobulin (Tg) testing before surgery is useless since you still have a thyroid.
-Since ThyCa is so slow growing, recurrence could happen many years after initial treatment because it could take that long for detectable Tg to show up.
-WBS are not particularly sensitive, so they are not part of the new guidelines for follow up treatment; ultrasound of the neck is more sensitive as the neck is the first place for recurrence to appear.

That last point worries me since I am still feeling that weird tugging sensation on the right side of my neck.

Physical Therapist says - part 2
My left knee isn't tracking properly, hence the knee pain going up and down stairs. Great. More exercises.

How does my neck look? 7/31/11

I've been holding off on posting another neck photo since I keep on seeing a red tinge on my left side in all of my neck photos (on the right side if you are looking at the photo). It's still there. The people at the Sprint store said 'maybe it's from your purse strap' since it didn't show up in the one non-neck photo I showed them. Well, I decided to take photos of lighter colored things in my bathroom, and to take photos with my phone turned on the other end. And sure enough, the red tinge switched places when I took photos the other way. So, I have to say it is the camera on my phone, not me, the lighting in my bathroom, or the strap from my purse that is making that red tinge in all of my neck photos. Hopefully I can take my phone in sometime this week, have them fix this, or replace it if it is defective.

So the funny feeling in my neck...is still there, after a week. A tugging feeling, only on the right side, not anywhere close to where the scar is. Still on the fence about emailing my ENT or my ENDO about it. I'm sure it is fine...kinda.

So in this photo, I turned my phone the other way around, so the red tinge is on the left side instead of the right side. It looks like I am sunburned on my right side. Oh well. So, despite the weird red tinge in the photo, how does my neck look?

Random commentary

I have too many random things going on in my head to focus on one for a post, so here they are, not in any specific order:

*PT is going....well, but yesterday it felt like I pulled my right glute, yes, my right butt muscle, while doing my PT exercises. Thank goodness it doesn't feel as bad today. Left knee is still acting up, though. Yesterday was my third session, so I am halfway through. I wonder how they will be able to tell if my hips have gotten strong enough, or if I will need to continue with more sessions. If it wasn't enough of an improvement, would they make me go twice a week in addition to doing my exercises twice each day? Why are more aches and pains showing up now that I am going to PT?
*My right arm still hurts, but I can't pin down exactly what is causing the pain. It was sore during my run around the lake on Saturday. It hurts on and off through pilates. It rarely hurts while I am climbing. I think the pain started after a yoga class the weekend of July 4th. Maybe I should ice it, when it hurts. If it doesn't stop hurting soon, I may have to get my PCP to call in some PT sessions for it. Right, possibly more PT.
*Bummed I am not climbing this week, but it will give the bruises on both of my knees a chance to heal, and hopefully I don't get any new bruises on my knees from anything else this week! (Climbing) Nick, is back from Canada/Pennsylvania/Germany next week, so I may get to climb next week. Still a bit of a surprise since he just moved back to Canada last December. Now if Serena would just move back....
*Still not so sure why my neck feels weird. It is not constant. It definitely does not feel weird when my right arm starts to hurt, so I don't think it is referred pain from that. I was trying to find my pulse on my neck this afternoon, and I felt a lump on the right side of my neck, not where the weird feeling is, but still a little worrisome.
*The guy at the kebab place is HOT! I have been in there once before, and I'm pretty sure I thought the same exact thing, 'So your kebab comes with falafels?...I'll have those, thank you!'
*Gene Simmon's hair just REALLY bothers me. Comb it, already! - it always looks so lifeless and fake. Maybe try a different style/cut, just do something to make it look real.
*Looking forward to using my Garmin at run club tomorrow evening.
*What is that red tinge that shows up on my right side every time I take a neck picture with my EVO 3D? It doesn't show up on any of the 3D photos of my neck, but it does show up in just about every single shot in 2D. WTF?!?
*Every week at run club for the past month or so I have been inching closer and closer to having a wardrobe malfunction with my workout pants falling down to my knees in mid-stride. I love these workout pants - they looked great on me 43 lbs ago, and I think they still look good on me now, but they have gotten too big to wear on a run, well for any kind of workout. So, this past weekend I broke down and finally bought some new workout pants. I have to admit that better fitting clothes makes you feel better about yourself.

Garmin Forerunner 210 - first impression, first run

As much as I didn't want to give up my Nike+ SportWatch GPS, the inaccuracy of the GPS mapping was driving me nuts. The mapping did improve a little over the past couple of months, but just when I thought I would not have the problems anymore, the GPS mapping would be way off again. I was not confident that the mileage for all of my runs was accurate, especially if I was mapped starting on another street, or on out-and-back runs, when the out wasn't even close to the back. WTF!

I actually wanted to exchange it for the same watch, but decided I may as well try out a different GPS watch. The Garmin Forerunner 210 was the closest in price range, and with the added shoe pod, it cost less than the Nike+ kit, so I was told. $179.99 for the Nike watch, and $224.99 for the Garmin, which included a heart rate monitor (HRM). The Garmin shoe pod, to track your indoor runs (treadmill), was an additional $62.99. They had a kit that included the shoe pod and the HRM for $269.99. For the record, the Nike watch came with a shoe pod (normally $19.99 if you need a replacement), and the Polar link Nike+ HRM is $62.99, for a total of $242.98, so for the record, no it was not cheaper.

I charged the watch last night, set-up my Garmin Connect account, then tried to see how fast the satellites, shoe pod, and HRM connected. The shoe pod and HRM linked really fast, I guess due to the ANT+ technology that connects them to the watch. Cool. The satellites took a little longer. I like being able to see the distance, elapsed time, and pace all on the same screen - you could only see two of these on the Nike screen. What I don't get is how to erase a run on the Garmin. I hit the start button last night, on accident, so I hit the stop button, then the reset button and I think the only option I had was to save the data, but I wanted to delete it. How do you delete it?!? I guess I still need to get used to all the buttons on this thing.

So, this evening was my first run. I decided to run a similar route that I did with the Nike watch a few weeks back because there were discrepancies with that route and the Nike watch. As expected, the  HRM and shoe pod linked right away, but even outside it still took what seemed like forever for the satellites to link to my watch. I stretched for about two minutes and I did not lose the satellite link, something that happened to me from time to time with the Nike watch. Not bad.

I was surprised that the distance was the same. Nice to see the HRM info. I will have to set up my target heart rate. So how did the mapping feature track me? Surprise again, the Nike mapping was better than the Garmin mapping. So is it just me?!? Am I just too detail oriented that I expect to see my run tracked on a sidewalk and not on someone's yard because I was running on the sidewalk, and not across the street? Argh. I plan to run all my usual routes with the Garmin so I can compare GPS tracking. Hopefully the overall mapping for the Garmin will be more to my satisfaction than the Nike mapping. And, hopefully I will figure out how to delete runs off this thing.

My neck feels....weird, like it did a couple of months after my thyroid surgeries last year. It started at my chiro appt this afternoon.

Trading it in....I am exchanging my Nike SportWatch GPS for a Garmin Forerunner 210. It comes w a heart rate monitor and a shoepod. Excited!

How does my neck look? 7/19/11

I haven't posted a neck photo in probably a month now. I've taken a few photos of my neck, but didn't have time to post them. So, here's the latest neck photo:

So, how does my neck look?



I was given another set of PT exercises to add on to the first set. The new exercises concentrate on my hip flexors and IT bands. I am also trying to take a break from sitting so much during the day at work. By my last PT session, it will take me about 60 minutes to do all of my PT exercises. I wonder how often I will need to do these exercises when I finish my PT sessions, to maintain my hip strength.

I have been on the new T3 prescription for a week now, and so far I have had maybe one afternoon where I was fighting to stay awake between 2-4pm. Thus far, an improvement.

So far my hips have not been bothering me during my runs. But this evening, my hips, right side, were bothering me while I was climbing. Not that I want to, but I'll be taking the next 2-3 weeks off from climbing since my climbing partner will be in Sweden on vacation. Although, it might be a good time to see if there are any climbing clinics at the other gym location, or maybe take a climbing class. Or what about a yoga or hip hop dance class on a Monday night? I'll figure it out.

I'm really excited about my local ThyCa group. We are working on changing our meeting format a little, and are hoping to get a speaker (a local ENDO) at our meeting next month or at one of the meetings before the end of the year. Pretty exciting stuff.

Oh soccer heart break...US Women's team lost to Japan in the FIFA Women's World Cup, in penalty kicks.

Technology fails me again...or maybe it's just the crappy proprietary Sony software that can't play nice with 64bit Windows7? 4 hrs later...

Physical Therapist says.... my hips are weak, hence the knee pain. Wow. So 4 exercises to do, 2x each day; 3 appts over the next 3 wks. TBC.

Finally got an appt for PT on my RT knee. It was fine after climbing and driving to/from LA earlier this week, but today, not so good.

Day 1 - T3 dosage change

This morning I started on my new T3 dosage. I took the first one at 6am, as usual with my Levoxyl. Then the second one around 1pm, after lunch.

I was a little worried on the drive up since at times I felt tired, something I usually feel on those days when I have fallen asleep at work. My morning meeting went Ok, despite still not knowing why I needed to be there since I wasn't supposed to say anything - what was my role in the meeting anyway? Last night my climbing partner reminded me that I was probably there in case someone else had questions about the system, and he was right. There were some questions that couldn't be answered by anyone but me. My brain fog issue wasn't as bad as it could have been, but I did find myself pausing several times because the word I wanted or needed to use wasn't coming out of my mouth. At least I didn't get tongue-twisted at the same time. But, it was the same thing at my afternoon meeting with the brain fog thing going on.

I had lunch with some colleagues at a dumpling house. Not bad, but I probably ate too much. I will be surprised if at weigh in tomorrow morning, my weight is down again. I had dinner around 6:30pm, close to five hours after my second dose. By the time I got on the road around 7:45pm, my afternoon dose had probably worn off. The drive home was Ok. I didn't get super drowsy as I can on weekend afternoons or weekday drives home from work, where I have difficulty keeping my eyes open. I just got very agitated the last five or so miles, impatient with the speed of the vehicles around me. Hopefully my afternoons going forward will continue to improve over the next couple of weeks. To be continued.....

ENDO says - part 9

My Endo said all of my tests (1-yr WBS, Tg/TgAB blood work, follow up ultrasound) look good, except my ultrasound, because of the scar tissue. It didn't grow, but it is not something that would normally show up on an ultrasound for a ThyCan, so instead of being 'normal', it is 'stable'. He wants to continue to monitor it, so I will be getting another ultrasound in six months.

As for my afternoon low energy levels, he said it would be Ok to split my T3 dose. But T3 only comes in two doses: 5mcg or 25mcg. Changing my dose to 5mcg twice each day would be the way to go, however, this would lower my overall T4 levels, but he thinks my current levels are high enough, so the 2.5mcg change each day probably would not make that much of a difference. The good thing is that I won't have to split my pills anymore! He said to take the second pill 6-8 hours after the first dose. So, I'll see how things go starting tomorrow. Hopefully this will help me to stay awake during my drive home from LA tomorrow afternoon.

He said the main goal now is to get me feeling as good as possible, then to bring my TSH up to just below normal. I should have asked what he meant by normal. This is where I get a little lost. At one point last year, he said he wanted my TSH below 1.0, then a few months ago he said he didn't want it higher than .01 during the first year, and would consider bringing it up to .5 after that. So then, what does he consider to be 'normal'?

Anyway, I don't have to go back for blood work for 4 months (at least a week before my next appt), but I need to let him know if I start to feel worse on the new prescription. He says we are progressing because I feel a lot better about things, overall.

Waiting for my Endo appt. Turns out my medical group was affected by the Thyrogen shortage afterall. Good thing I gave them a heads up.

What weekend?

I don't know where the days go, especially the ones on the weekends. I do remember taking a nap this afternoon. Saturday, I needed one, but instead fell asleep at Borders while looking at MS Project 2007 books, then again at home while trying to watch SNL.

Saturday was more social than usual for me. It was Gary's celebration of life mass and reception. Gary being my friend that died from cancer a few months ago. I got to visit with Nick and Jerry, and the guys with the $1000 toilet, and so many others that knew and loved Gary more than I got to in the short time I knew him. During the mass, as always at funerals and the like, I wonder what will be remembered about me. What impact did I make on others? Was it even close to what was being summarized of the lives of those who have gone on before me? In the past four or so years, I've been to two funerals for co-workers, a cousin, now a friend, and a handful of relatives. This one is a bit bittersweet for me because at a time when I can breathe easily because I am cancer free, how can I be happy about it when someone I know died from it? What is there to be happy about? That I got the year-pass and someone else didn't? Well, I just hope that when I go, it isn't because of thyroid cancer, and I hope that everyone that comes to my celebration of life get together has a good time - whether they bitch about me or fondly remember me, the food better be good, and people better be enjoying themselves! Just like at Gary's.

So, I didn't get a lot of running in this weekend. Friday night was climbing, Saturday was Gary's thing (so only my stomach got a workout), Sunday the usual pilates class, but I ran in the evening instead of on the treadmill at the gym. My Nike SportWatch is getting better tracking my runs, kind of. I still want to try at least one more run at the lake and somewhere completely different to see if there was any improvement in the GPS tracking before I take it back.

So, now it is 1 AM in the morning, I still have a million things to do before I go to bed. It is going to be a bit of a crazy day since I have a follow up ENDO appt, then right after that I have my annual eye exam. Hopefully I will be climbing this evening as well. Then Tuesday morning I have to get up really early to drive to LA for a meeting on my big project. If there is going to be a time during the next two days that I could count on falling asleep, it would be while I am driving back from LA Tuesday afternoon or evening. I emailed my ENDO to see if possibly taking my T3 med twice daily would help with my afternoon exhaustion. I'll find out at my appt later today if we go that route or not. I'm thinking that I will really need it Tuesday afternoon if I want to make it home in one piece.

Ultrasound follow up appt - Jul 6, 2011

Today was my six month follow up ultrasound appt to check on the mystery tissue that was found on the right side of my thyroid bed last December. My ultrasound tech said she did my ultrasound earlier this year. She asked if I had some blood work done recently. I told her I did yesterday, but had not seen the results online yet, and that the results from my 1-yr scan (clear) and my unsuppressed Tg/TgAB labs (undetectable) probably mean that my mystery tissue is most likely just scar tissue. I asked her if she does a 'careful neck ultrasound', or checks all the levels around my neck and thyroid. She said for normal thryoid studies, no, but if you have a history of thyroid issues like thyroid cancer, then she checks all your lymph nodes. Great, confirmation I needed to hear for myself.

She started by having me turn my head to the left, away from the monitor of the ultrasound machine, so she could look at the right side of my neck. I don't remember having to do this back in January. As she was taking pictures, she asked my about my surgery - when did I have my TT. I said, left lobe on May 3rd of last year, then the right side on May 17th, also of last year. She asked why they didn't get it all the first time. I had to tell her, 'because they found cancer on the left side'. I still have to pause when I say that to people. While she did the left side, I watched the monitor as she selected odd shaped dark areas and put some sort of colorization on the screen or zoomed in on the area, then saved the picture. I think the blue and red colors represent blood flow going either in or out of that area, something like that. I fell asleep during the last part of my ultrasound, when she had me turn my head to the left again. When she was done, I waited in the exam room while the x-ray doc reviewed my ultrasounds. She said everything looked Ok, my ENDO would have the results in the morning, and I was free to go. Sounded good to me.

Yesterday, before my ThyCa meeting, I had my blood draw so my ENDO can decide if my meds still need to be tweaked or not. I think my ENDO said my Total T3 was going to be drawn as well, since I am now on T3 meds, but I didn't see it on the paper work. My phlebotomist is the manager for the lab. I told her about my experience last month, when the tech couldn't seem to find any of my veins for my unsuppressed Tg/TgAB labs. She told me if I ever feel uncomfortable with a tech, it is Ok to tell them that you want someone else to draw your blood. Good to know because I have always waited for the tech to admit they were doing a bad job of making me look like a heroin addict and offer to have someone else poke my veins. Now I know I don't have to suffer longer than necessary. Thank goodness!

Anyway, my lab results still have not been posted online by my ENDO. I think as part of the questions that I will be sending to him for my appt next week, I should ask about my failing energy levels in the afternoons and my speech issues - yes, they are back. I now think one reason why I am exhausted in the afternoons could be from the fact that I increased the number of days I run each week, but I still wonder if being over caffeinated throughout the day during the work week may also have something to do with it.

Happy 4th of July!

I remember at this time last year I was worried about being out in public because it was just my third/fourth day after taking my RAI ablation dose, and I was still supposed to steer clear of pregnant women and small children. How do you do that at a 4th of July picnic? I remember feeling good and bad about telling people they needed to stay at least three feet away from me - bad because I knew a lot of people wanted to talk to me, see how I was doing which was very awkward having conversations standing 3-5 feet apart from them. But good because that meant I could eat in peace, I had a fair amount of room around me at the picnic table. This year, can tell everyone I am officially cancer free. I can enjoy the picnic and the company better. And, I don't have to stand by myself when we are watching the fireworks.

I hope everyone has a fun and safe 4th of July. Happy Independence Day!

Cancer is....expensive - part 2

Most of the billing for my 1-yr scan and blood work has been processed by my health insurance. Wow, those Thyrogen shots were really expensive. My insurance was billed $2137.00 for each shot. In addition to each shot, my Urgent Care 'visits' were added on top of the shots. My portion of the bill is about $120 for each shot. Thank goodness I reached my deductible a few months back, or I'd be paying a lot more than that.

My share of the lab work (pregnancy test before RAI scan/diagnostic dose, and Tg/TgAB blood draw) is less than $6. The WBS was $705, my share is $59. Not sure if that also includes my RAI pill (scan dose), but I'd really like to know what the 5mCi of radioactive iodine cost. I'm almost half way on my maxium out of pocket expense for the year, but I doubt I will get close to hitting the maximum amount because I don't have too many other appts scheduled for the rest of the year. And sadly, I can't even count my dental appts and expenses on my health insurance. My meds don't count toward my out of pocket max either. I am so glad I have a job and health insurance to cover these things.

On to the new EVO...

Unexpectedly, when I was in the Sprint store this evening to get my phone fixed, I was offered an upgrade to the new HTC EVO 3D smartphone. Huh?!? Right, that is exactly what I said too! I could either wait two hours for a tech to look at my phone, and figure out why Gingerbread made my phone suck (decreased battery life, restarting itself by itself, always opening Footprints whenever I unlock my phone, etc.), or I could use my upgrade which expired today, and get the phone for $50 if I sold back my current EVO 4G. How could anyone turn that offer down? So, I now have the new HTC EVO 3D.

So far, I don't really care for the 3D photos/video. How good is it if you have to have an EVO 3D to see the video or photos in 3D? But, it came with the Green Hornet movie in 3D, and I think there may actually be an Angry Birds 3D version, so for entertainment purposes, I guess it would be Ok. I already miss my 8mp camera, and the fact that all the apps fit the screen - a lot of things don't seem to fill the screen. It's the same size screen (4.3"), the phone itself is just a tad bit narrower than my previous phone, so not quite sure what the deal is. The graphics are superb, but kills the battery. Still have a lot to get used to with my new phone.

Spoils of the fair - 2011

Today, we went to the Del Mar, er, San Diego County Fair. One of the only things I really wanted to see at the fair this year was the flash mob that was going to dance to "Thriller". Two performances were scheduled, one around 2pm, the other around 8pm. Since I didn't plan on staying at the fair the entire day, I was hoping to see the 2pm performance. I kinda knew the area where it was supposed to happen (the area along the food vendors heading to the funzone), so I hurried through lunch so I see it. But I completely missed it! ARGH! Oh well.

We did hit most of the vendor exhibit halls. I picked up different spoils this year. I got some Flea Treats for Angelo (Advantix doesn't seem to be working for him, so hopefully this does), I got my  mom to 'pick a pearl' - a 6 1/2 mm gray pearl!, Ovation cell therapy for my dad (so he'll stop asking about 'Men's hair club' and 'Bosely'), and some cool kitchen slicers for me!

And what about all the new fried and/or unhealthy food choices at the fair this year? Well, I was hoping to be good this year, we even brought a fruit salad to eat before taking on some of the bad stuff, but it didn't happen as planned. First of all, we were supposed to eat the fruit salad first. Not quite. We got some chicken and beef kabob combos with fries and half a pita. At least I had a diet pepsi to wash it down. But I really should've nixed the fries and pita. Of the new fried goodies available this year, I wanted to try the Totally Fried Kool-Aid and the chocolate dipped corn-dog. I couldn't find the chocolate corn-dog thing, so I settled with the fried Kool-Aid. Not bad. Not too much sugar, on the outside, at least. It kinda tasted like a dough nut.

I was hoping to get a run in this evening after eating all of that stuff, but by the time we left, my body was worn out from walking around the whole day. We didn't even make it to the Arts & Crafts exhibits, how could I be so exhausted? I think it could have been because I was not as caffineated as I usually am during the work week, so it was a good thing I didn't fall asleep driving home.

How does my neck look? 6/21/11

It is still sinking in, I am still getting used to saying "I am a thyroid cancer survivor." I am a thyroid cancer survivor.

So what is next? I have a follow up ultrasound, blood work, and an appt with my ENDO next month. Since my Tg and TgAB are undetectable, I assume the mystery tissue that was found on the right side of my thyroid bed last December will be categorized as scar tissue, but I think it will still be reassuring to know that it did not change over the last six months. Then there is my meds. I think they still need to be tweaked a bit since I have been having problems with my energy level in the afternoons for the past two months. I even feel tired driving to work some mornings. Today, my 'mental issues', as my ENDO likes to call them, were plentiful. I guess I'll have to see what my blood work reveals.

At my last ENDO appt, he said if my WBS was clean and my Tg/TgAB was undetectable, then my follow up would be annual blood work to insure my TSH and FT4 (and Total T3, if I stay on Cytomel) are at the appropriate levels, no need for another stimulated Tg/TgAB blood draw, no ultrasound. To me it sounds like not enough is going to be done to monitor me. I don't really know what the proper follow up protocol should be for HCC, but I want to make sure that my ENDO's follow up plan is similar if not the same.

I know, I need to balance out the fear at the back of my head that it can come back, at any time, with my goal of not letting cancer dictate my life. So, while I am trying to figure that all out, let me know how the neck of a thyroid cancer survivor looks.

Niko

Niko was my Mom's dog. We put her down this morning. She just turned 13 years old last month. She was an interesting dog. I didn't really understand her until I took her to the pet communicator last year.

At that session, we learned that she was deaf in one ear. I think she grew to be completely deaf since then. She could hear a whistle and feel the vibrations when someone banged on a door or a nearby object. I also found out why on earth she always had to get one lick in, even if it was the tip of my pinky finger. Oh that annoyed me so much, until I learned why - she was just checking in, to see how we were doing, to let us know she missed us the whole day, so the pet communicator told us. Now I can't remember the last time she did that.

She was several months younger than Frankie, and she too had really bad arthritis in her hips. The difference between her and Frankie is that she never complained about her hips. She would always try to get up on her own, and she always managed to do so. Frankie would have a hard time getting up and would start whining for help. Niko never asked for assistance. She was a pretty low-key, low-maintenance of sorts type of dog. On the other hand, she was a bit of a 'bull in an antique shop' type of dog too - when she was younger, she'd bowl you or whatever over whenever she came into the house.

Sometimes I think it would be best if your beloved pet passed in its sleep. But I also think we need to be able to say goodbye and send them off, just like we do for our friends and family if we have the opportunity to do so. We sent her on her way, me and my mom. As the vet gave her the second shot, we petted her and told her we loved her, that she was a good dog, that we would miss her, and the last thing I said to her was 'guard the house'. She always did. Oh, the life of a dog.....

New medical issue?: I found a lump on my left leg, close to the inner edge of my shin. It is hard, feels oblong, but small. Felt it a few wks ago, after a run.

Tg/TgAB results: Holy crap! I wasn't expecting to hear anything until next week. Relieved it wasn't my ENDO who called because he only delivers bad news. Both are undetectable! Yay!


My ENDO says this is a good sign of remission. I don't know if this also means I am now in the 'no evidence of disease' (NED) category or not, but I will ask at my appt next month.

I think now I can safely say that I have survived thyroid cancer. I rejoice, but I still wonder if this is something I really want to say, that "I survived it" when I know it can come back. You survive car accidents or horrible disasters, but you don't expect the same exact accident or disaster to happen to you again. All cancers can come back, and they normally come back with a vengeance. For now, I feel good knowing that a year later, I made the right decision to have my left thyroid lobe removed and that the subsequent treatments were successful. Yay!!!
 

Half way there...

WBS results: Negative for thyroid cancer. But, still waiting on results from my stimulated Tg/TgAB test, which may take a few days. They need to be undetectable.

Missed a call from my ENDOs PA. She was gone when I called back, so I have to wait until tomorrow. Holy crap! - either it is good news or it isn't.

And, the first one couldn't get any blood out of either arm. Thank goodness the second one did.

1-yr WBs

WBS completed. Waiting to have my Thyroglobulin (Tg/TgAB) blood draw. The NucMed tech let me see what was taken on the last of the 3 scans. Clear thyroid bed!

 The scan:

"Gamma machine" - used for my 1-yr WBS

I wasn't as late this morning as I was Monday morning, thank goodness! They had me empty my bladder 'real good' before I was taken into the room with the machine. I was slightly swaddled on the moveable bed of the machine so that my clothing and body parts would not interfere with and stop the machine during the first scan (the one, like last year, where it felt like little people were carrying me through the machine). Then I was told to hold still for the entire scan.

I was told the first scan would last about 25mins, the bed would slowly place me in position for both 'pictures' that needed to be taken for the WBS. That would be followed by two 10min scans that would focus on my thyroid bed.

I drifted in and out of sleep for the first scan, but somewhere during the second picture, I had a tickle at the back of my throat. How was I supposed to deal with that if I am supposed to remain as still as possible? Well, luckily my torso was scanned first, so I coughed as carefully as possible. Before the second set of pictures, the tech placed a marker on my neck so he could properly focus on my thyroid bed. Both of these scans went very quickly.

After the scan, I asked if I could see the scans. He could only show me the last one that was taken. I saw uptake (black dots) in my salivary glands, which he said was normal. There were some other random black spots in what looked like my chest area. He said everything looked clear. Sounds good, but I know that the NucMed doc and my ENDO both have to review and confer on the scan results, so even if it sounds like my scans are clean, I need to hear it from my ENDO.

RAI diagnostic dose - 6/13/2011

Interesting. I think I just saw my RAI scan dose being delivered to the docs. On the delivery guys' dolly was a nice little "radioactive warning" sticker.


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Around 9:45am, the Nuclear Medicine doctor finally called me from the waiting room (so I guess I am not pregnant!) and I was lead back into a small office. I didn't get her name, but she had a slight Russian accent. In the tiny back room, she told me I was getting a diagnostic scan dose, I have to come back Wednesday morning at 7am for my WBS, and that I had to remember to get my Tg/TgAB blood draw right after my scan because the insurance companies will not pay for a second round of Thyrogen shots since they are so expensive. Ok, good to know.

I asked about isolation - Ok to be around pregnant women, small children, or small pets? Wait a couple of days to be around pregnant women, but no worries being around small pets or kids. I still want to avoid any kind of unintentional radiation exposure to anyone, so I took a sick day from work, and tried to keep my distance from Angelo and Misty. I also asked about working out - Ok to go to the gym? She said some radiation will come out with my perspiration, but it is minimal. I still have no control over whether or not pregnant women could be anywhere close to me at the gym or even at the store, so I decided to skip yoga this evening and climbing tomorrow. For the climbing, I am more worried about my radiated sweat getting on all the holds or ropes that I touch.

When I was ready, she placed the 5mCi pill in my left hand. It was a pretty dark teal color, same color as last year, just not as sparkly as I remember the two pills I had last year. This one was perfectly formed too. Then it was down the hatch, and I was sent on my way, radioactive and all.

The rest of the day I spent taking little naps here and there. More than ever I was wanting to eat a burger or pizza, maybe some grilled fish, but no, not just yet. All I know is that I'm heading to Chipotle after work tomorrow evening!

Not sure if this could be a delayed reaction to the Thyrogen shots or not, but I have been feeling nauseous since I got up this morning. And ravenous. PMS?

Here we go. Have to get a pregnancy test first. Once that is in, they call me and I get "the pill", 4-5mCi. I really have to stop being late for these things.

Thyrogen shot #2

But the shot nurse was very knowledgeable. She has been administering Thyrogen shots for 10yrs, since they changed the procedure so it was only done at one location for the medical group. She also told me each vial is worth $1000.00 and they keep a supply on hand, noting that I was the second person she heard mention the global Thyrogen shortage, which they obviously were not affected by. Then she went on to say that they normally have two Thyrogen patients each weekend, but I was the first one since February. That means there were many thyroid cancer patients before me, at least at my medical group.

Before she gave me the shot, I asked if I could take a picture of the syringe. She did better than that - she let me keep the empty Thyrogen vial, and let me have the paperwork for the orders for my shot.

She administered the shot a little differently. I was standing this time, she said she would pinch the skin before administering the shot, so it would be less painful. She was right - didn't feel it at all. I didn't have to wait for 15mins this time since I didn't have any adverse reactions to the first shot yesterday. Weird thing is about 30mins later the injection site felt a little sore.

I am still feeling Ok, just a little tired. So, RAI diagnostic scan dose tomorrow morning, at 8am.

Yeah, I am alone in this. From speaking to the doctor that came in, no one here really has any idea what the protocol is for ThyCa or treatment. At least I do.

He wanted to know if I had any questions, so I asked him if I would have any hypo symptoms from the two shots; if so, should I even be driving?Although, I guess can't exactly expect an UrgentCare doc to know a whole lot about ThyCa management and treatments. But I'm thinking that if he is going to see patients that are getting Thyrogen shots on his watch, shouldn't he know something about it? That is what I get for asking questions. 

Waiting for Thyrogen shot #2. It is slower here today, so despite the fact that I arrived later than yesterday, I think my shot will come around the same time.

Am I hypo yet?

My first Thyrogen shot was pretty uneventful - slight stick at the top of my right cheek, no allergic reactions, and thank goodness no weird side effects! I don't even remember feeling hypo at all during the day. Somewhere in there I started to wonder if I should even be driving around. Maybe after my shot tomorrow I might feel it?

Good thing I was not feeling hypo because it was a pretty full day for me. I got my haircut (a little too short, but I'll live). Then I went to the SPCA to check out some puppies to replace my mom's dog. I took Angelo to his appt (his ears are clear of infection, and he got his rabbies shot). I made my lunch, and some polenta. Did more puppy research online. I did a test run in my replacement running shoes. Got some LID supplies from Trader Joe's. Picked up a refill of my T4/T3 prescription. Picked up some stuff from Target (including a container for almond milk). Made my own almond milk (water, almonds, pitted dates, all whirled together in the VitaMix). And last but not least, I made dinner and ate it. I am tired now, but only, I am thinking, because it is already 1am.

Not sure what I will do after my shot in the morning. I'll be downtown with anywhere from an hour and a half to two hours before my pilates class. I have not taken photos with my DSLR in awhile, so that would be something to fill the time. But, then what do I do with my camera when I am in pilates and working out? I am not too crazy about leaving my camera in my car, especially if it turns out to be a hot day. Something I'll figure out when I get there, I guess.

So anyway, Thyrogen shot #2 in a few hours....24 hours later, my RAI scan dose.

Thyrogen shot #1

The nurse said it is fine so long as the #2 shot isn't at 12pm tomorrow, then she said the shot nurse should be in shortly. Do I get to choose which butt cheek the shot goes in?!?

I ended up choosing the right side. The nurse said I could choose the other one tomorrow, if I wanted. The shot was placed high on my right butt cheek as I lay on my left side. I had to wait for 15 mins so they could make sure I didn't have an allergic reaction to the Thyrogen. Not bad. 

I guess I am always just worried something isn't going to work, like my TSH not going up high enough for the scan dose to work, or, the worst situation is that my LID was not effective, and the scan is useless. I worry, so what else is new?

Here I am, late for my Thyrogen shot. Not sure that I had to get the shot at 8am exactly, or what. Wonder if this messes up my schedule (shot #2, RAI) now.

Running shoes....Thank you, ShoeDog, for 90-day shoe trials! Went from Nike Vomero's back to a pair of Nike Equalons, but a half size bigger than previous pair.

So I am not going crazy: my ENDO really did tell me that I didn't have to do LID for my 1-yr scan. His receptionist confirmed. So, taking myself off it on Tue.

ThyCa group meeting - June 7, 2011

We had a few new people last night. That's a good 'Yay!' but also a bad 'Yay!' because that means that more people in San Diego are being diagnosed with thyroid cancer and getting thyroidectomies. Two of the three ladies recently had their TTs done, the other had hers done a couple of years ago. Also, the two new members from last month's meeting (the one I missed since I was on vacation) were also in attendance. One of those ladies also had HCC. It is just so amazing to me how we all have one form or another of thyroid cancer, but for everything that we experience in common, there are just as many that some of us experience that is very uncommon.

It was another long meeting - 2 hours! Our meetings are only supposed to be an hour long, but we always manage to go over by at least 30mins each meeting. I think I was considered to be the main facilitator this time, which I don't mind, but I have a hard time keeping the meeting moving so everyone has a chance to speak. How do you effectively cut someone off when they've been talking for over 10 minutes, and they don't seem to be winding things down?!? So, I am trying to figure out a better way to run the meetings when we have new members. I think a good idea is to have one of the facilitators tell their ThyCa story first, then have the new members tell theirs. That way, they are able to introduce themselves to the group, tell their story, and then ask about any questions or concerns they may have. In addition to the sign-in sheet, we should also have a sheet where members/guests can write down any questions or concerns they may have. Hopefully we can cover everyone's questions before the end of the meeting.

Now the big question is how should I deal with members who go way off topic? There was one person that was all over the place - she started talking about her other health issues, then what happened before she had ThyCa, where she used to work, what else she is attributing her current symptoms to.....I was lost just trying to follow what she was saying. I kept on thinking to myself, "what is a nice thing to say to her so she'll stick to her ThyCa issues, or how do I effectively let her know that we need to move on to the next person without sounding bitchy?"

So, I have a few things to work on before the next meeting. Hopefully I can put something together and share it with the other facilitators, see what they think. Anyway, despite the meeting feeling like it was getting out of hand, it was still nice to be able to meet with others on the ThyCa journey with me.