Exhausted weekend

When I got back from San Francisco Friday night, we went to Extraordinary Desserts for....desserts! The next morning, my brother and nephews started their half day journey back to their desert town in New Mexico. I thought I was going to get a lot of things done on Saturday, but I ended up in my PJ's the whole day, sleeping, watching TV, and falling asleep watching TV. I just was not motivated to do anything. I have not had one of those Saturdays since before my thyroid surgeries last May, so I am not so sure why I was having one of those days now, with all the meds I am currently on. Now it is Sunday night, or technically early Monday morning. I guess I need to get ready for the week.

I am not ready for this week. I am not ready to take my dog, Frankie, to the vet. I am not ready to let him go. But I also can't bear to hear him whine and struggle when he can't get up on his own. I still think of him as that happy puppy, having a good time in Golden Gate park on a lazy Sunday afternoon....on long walks at Fiesta Island.....eating food off Vivienne's fork while sitting outside of Crepevine.... how did that dog I remember turn into this dog that can't get up on his own? I think it may have started last year, around this time. I think I was projecting my own health issues on him. I didn't realize it until the pet communicator said he had a thyroid issue. When I had my surgeries in May, the poor thing had the runs, the whole month. He hasn't gotten better since last year. Have I done this to my own dog? Probably not, but it sure feels like it.

Flight back to San Diego delayed 30mins. I have a headache - either I am getting sick again, or I am PMS-ing.

Once again, opted out of body scan thing @ the airport. This time was asked why, so told them "I had radiation for cancer last year, and I don't need anymore."

Late start on our brainstorming meeting, but it was very productive. On the 23rd floor of my hotel. Just had dinner w KT. It is cold, but it isn't raining.

Thank you, rain delay @ SFO. I am now 25 mins late for my meeting.

Elizabeth Taylor passed away this morning. She was 79.

Spring break, for some

This evening my brother and four nephews arrived, for Spring Break. They can be a rowdy bunch, my nephews, but they were pretty calm when I got home from work. I'm looking forward to spending time with them. My nephew, Dario, turns 12 tomorrow (3/22), so the plan is to take them climbing tomorrow evening. The other three waiver on whether or not they want to try it, but Dario is pretty sure he wants to try it. So, unless they are all tired from their activities tomorrow, I will be literally showing them the ropes tomorrow night. I doubt I'll get in any climbing myself, not unless my brother feels confident enough to belay me, or I guess if I feel confident enough for him to belay me???.......

My brother also requested a mocha-mocha cake from one of the local Filipino bakeries (the bakery from our childhood, Betsy's, is no longer around). I haven't had one of those cakes since we were little. I probably shouldn't have a piece of that cake, but.....I just might. Not a big piece, just a small one. This is kinda a critical week for me, weight-wise as I have a few challenges - my high metabolism nephews and my trip to SF on Thursday and Friday. Just when was starting to feel a little slim. I got my hair cut this past weekend, and I must say that it was the first time in several years that I didn't look fat with the cape wrapped around my neck and shoulders - I actually looked Ok. I'm still at only 15% weight loss, so hopefully I won't stumble too badly this week.

Just heard someone sneeze in the back. I hope he wasn't the one who prepared my soyrizo burrito - can't afford to be sick when I have to fly to SF on Thursday.

Finally got my haircut. Nothing drastic, just the same old A-line bob. Most of my peek-a-boo highlights are gone. She did a good job.
At the vegan place for lunch.

How does my neck look? 3/17/11

Happy St Patrick's Day! I don't have any green on in my neck photo for today, but I was indeed wearing green.....underwear today! Hope everyone  had a fun and safe time, no matter how you celebrated the day.

After pilates class this evening, I tried out the new running shoes on the treadmill. Not bad. I'm still not sure if they are a tad too small or not. My knees are a little sore right now, so that could be a sign they are. Hopefully I can get a run in this weekend, try them out on the road, see how things feel after that. TBC.

My neck and shoulders are still not at 100%. I really need to have my chiro work this area tomorrow. I can't go through another week like this, not when I've got to travel for work on Thursday and Friday next week - that is sure to tweak things even more dragging my luggage around. Argh!

Anyway, despite the neck and shoulder issues, how does my neck look?

Catch up

One of my oldest friends, Demetra, was in town for a couple of days, and I was so happy to get to spend some time with her. I think the last time we saw each other was six or seven years ago, after I moved back to SD. She lives out of state, so that makes visits a little hard. We have one of those friendships where we could not see each other for years, and then see each other and it'd be like it was just yesterday when we last saw each other.

She was one of the first people I opened up to about my thyroid cancer last year. Since she is a doctor, I try not to bother her with medical issues, but this one I really needed expert advice on, not just as a doctor, but as my friend. I had so many questions for her: Did she have any patients with thyroid cancer? What about HCC? Is the prognosis really that good? Can I trust my ENDO? How will I get through this? It was a lot to cover, but I just threw it all at her. I felt bad doing that to her, but I just needed a different point of view, which is a little hard to get from an ENDO that had only seen me once before or my family that was trying to figure out what to do with my dad's medical condition and now my cancer. I am very lucky to have a good friend like her.

We talked about people from high school and college, she gave me updates from our 20-year high school reunion a few years back (because no, I don't go to those), and we filled in the gaps with whatever else is going on in our lives. It was a good time. She'll be back in June for the Rock n' Roll marathon, so if I'm not radioactive from my 1-yr WBS when she's in town, then hopefully we'll get to do less catching up and more hanging out with her.

After run club this evening we talked a little about the new Nike SportWatch that is supposed to drop on April 1st. Like many others, I have been salivating over this watch since it was announced at CES 2011 the first week of this year. But before I get that watch, I needed to get new running shoes, so I stopped by RoadRunner Sports, to actually get my gait evaluated. I ended up not only getting a new pair of customized insoles, I also bought a new pair of running shoes! Like last year, I was surprised to see that I actually do  have an arch. My left ankle rolls in a little, so I'm out of the stability shoe and into a neutral shoe. So instead of getting the Nike Zoom Structure Triax+ 14, I ended up with the Nike Zoom Vomero+ 5's. The Vomero 6's just came out, at least on the RRS website, so I may have to go back and exchange the 5's for the 6's, but we'll see how these feel. And, if all goes well, I just may be running with the new Nike SportWatch  in 2 1/2 weeks!

Genzyme Corp announced today that they expect global shortages of Thyrogen again this year, the supplies in the US being affected mid-April to mid-June. My 1-yr WBS is supposed to be in June, with Thyrogen shots instead of going off my meds.

More neck issues

My left shoulder and neck have been bothering me for a couple of weeks now. This past week, every night I would put a couple of strips of Salonpas on my left shoulder and neck before going to sleep. The last two nights I have also put a strip along my right shoulder. During my climbing session this morning, the back of my neck was in a lot of  pain. Normally when I climb, my shoulders and neck get sore from watching my climbing partners scale the routes. It is a lot worse when I am belaying since not only am I cranking my neck back so I watch and guide them to a hold that is 'on', but at times I may have to brake a bit, to keep them in place while they figure out their next move. Anyway, somewhere in there, the neck pain was the worst I have ever had while climbing. Normally pushing my shoulders down can relieve the tension, but that was not working today. I had to bend my head forward and look down in order to relieve the pain, but sometimes that made it feel even worse. It also hurt a little when I was climbing.

When I got home, I lay down to relax a bit, but found it very hard to find a comfortable position for my neck. Even right now it still feels stiff, and painful when I move my head in a certain direction or angle. WTF! Just trying to think about what could have caused this pain. I read, I think on the Salonpas box that people over 50 should not sleep with Salonpas - something about sensitivity to the heat from the patches. Well, I'm just over 40, so while that could be the problem, I doubt it. Was I straining too much looking up at my climbing partners? I don't think so. Well, I don't know for sure. But the pain is not like what I would expect if this were the case, so I can't say for sure.

So this evening, I going to try a 'heating pad', well, actually a sock with rice warmed up in the microwave. And, I will not be using the Salonpas this time. Maybe BenGay or mineral ice? If I make it to pilates tomorrow morning, and it still hurts, I may stop by Urgent Care on the way home. If it still hurts Monday morning, then I'm going to try and get an appointment with my chiropractor Monday afternoon. Something has got to work.

In other news, I've been thinking of asking Serena if there is a way to clean out the fluid that is stuck in my left tear duct. A few weekends ago I noticed some white stuff coming out of the corner of my left eye that was clouding my vision and making my eye water. This happened a few times that weekend. Since then I have not been able to look at my eye when it was watering (not anywhere close to a mirror). She said there is a way to do it, and she could probably do it at one of her offices. So, I'm going to ask her a little more about it before I have her work on - just want to make sure my health insurance will cover it, she said something about my VSP insurance covering it, but that isn't what covered it for my other two appointments for the same issue. Anyway, it would be nice, for once, to have someone I know do this for me instead of having some stranger jab my tear ducts.

Japan earthquake yesterday (Friday 3/11/11 in Japan) has created a Tsunami watch south of Santa Barbara, warning north of Santa Barbara.

The neck thing

The right side of my neck continued to feel....weird the whole day. When I woke up, it was a sore feeling, like the tightness/soreness I've been feeling on my left shoulder/neck for a while now. At work, it turned from a sore feeling to a....tugging feeling. Amalia let me use some of her Aspercreme on it, but that didn't seem to help. Every time I went to the bathroom, I'd look at my neck, message it a bit, try to see if I could feel anything bulging out, like a lymph node, or anything else. I noticed that my right collar bone area does not feel or look as....boney....as my left collar bone area. The only time I didn't really feel the tugging sensation was when I was at run club. Hopefully it won't feel this way tomorrow.

My left shoulder and neck have been sore for two weeks now despite chiro visits. This morning, right side of my neck is also sore. I can't win.

How does my neck look? 3/7/11

I finally had time to catch up with my brother this past weekend. We talked a little about my second opinion appt. On the listserv and with several ThyCans from my support group, there has been a lot of talk about where the best ThyCa doctors in the US are. Several on the listserv have ended up at Mayo Clinic (Rochester) or MD Anderson (Houston), including a local ThyCan with HCC. Suzanna, one of the local group members, has been looking into going to either one of these places. Although I am happy that my ENDO seems to be doing everything right, I still want to make sure everything really is....Ok.

My second opinion ENDO did say that the first 18 months are critical, that there is a higher rate of recurrence during this time. So I feel like I have to make sure that I am completely satisfied that everything has been checked, everything. The docs at Mayo seem to find more malignant  lymph nodes, etc. than anyone else. I don't even know for sure if a full (extensive, careful, etc.) neck ultrasound has been done on my neck, including the two in the past couple of months. So, I had mentioned to my brother that since my deductible and out-of-pocket max are a lot lower than last year, and I seem to be blowing through my deductible already, if I manage to blow through my out-of-pocket max before the last quarter of the year, I just might go to Mayo or MD, for good measure, see if they can find anything.

Anyway, how does my neck look?

Wow, I some how managed to read all of my listserv emails! It feels good. For awhile I couldn't catch up with my reading, but I was persistent. Yay!

Membership

I finally did it. I finally became a member at the rock gym. It was either that or buy a new pair of running shoes, but I ended up going climbing before going shopping. I've been putting it off for so long, so it was about time. So I am now an official member at Solid Rock. With bruises to prove it!

This time I ended up with four bruises, all but one was on my left leg. I still don't know how I do it. I don't remember hitting any holds on the way up or down any of the routes, but sure enough, half way through the session, on one of the routes I'm still having problems on, my knees kept on hurting as I was trying different approaches to get higher up the wall. It wasn't the 'Crap!...I think I pulled something' pain, it was definitely the 'Crap!...I have a bruise there...and there....' pain. No, I didn't put any ice on it last night when I got home. But I did stop by PinkBerry to treat myself to some froyo.  

2nd Opinion ENDO says

The main reason I went back to my second opinion ENDO is to make sure my ENDO is doing everything he needs to be doing to manage my treatment and care. At my second opinion appt with her last April, she said if my Hurthle Cell neoplasm (HCN) was found to be HCC after my first surgery, then my treatment would be aggressive, including taking the right side out. With that in mind, I wanted to know if my treatment thus far and what is planned for this year is similar to how she'd be managing my treatment. She was able to answer most of my questions.

My questions and her answers:
1. Is it standard protocol for a completion surgery for HCC to not check lymph nodes before completion surgery? According to the ATA guidelines an anterior neck dissection should have been done. This would be the area right above the thyroid. Why do you think they didn't do this? Probably just the preference of the surgeon.

2. RAI dosage of 148.6 - was this adequate for the type and size of my main tumor? That was a pretty big dose of radiation. I would have done 100miC, so 148.6 was adequate. I thought I read that when thyroid cancer spreads to lymph nodes, that it is not effective. That is normally for metastases or recurrence.

3. WBS results post RAI: uptake areas in neck vs 6 mos ultrasound. I know RAI can take up to a year to finish its work on cancer cells, but would this show up on an ultrasound 6 months later, or are the findings from the ultrasound in Dec/Jan something new? Uptake in neck area means that the radiation is killing thyroid and cancer cells, so it should not show up 6 or 12 months later.

4. WBS results post RAI: Lymphadenopathy?
Have you seen this in another ThyCa patient before? Yes, it is a typical finding in thyroid cancer patients.
Should I be worried? No.

5. TSH and FT4 levels:
Isn't .01 too low for TSH? Good for HCC. First year, yes. Second year, don't go above .5  What about bone loss issues brought on by being too suppressed? Bone loss is only an issue if you are at .01 for a long time.
What range do you think would be ideal for me? Don't go below .01; .1, or closer to this.
My Levoxyl dosage has been decreased from 175mcg to 125mcg, so why isn't my FT4 going down? (We didn't cover this question)
I am a little surprised my Levoxyl dosage was reduced from 175mcg to 125mcg; I thought I'd be around 150mcg. Didn't you lose a lot of weight? I did, but that was before the surgeries. Yes, your current weight calculates to 150mcg. Last month he changed my dosage so he could add in some T3, so I went down to 88mcg Levoxyl and 12.5 mcg T3, is that correct dosing? Yes, it brings the total amount close to 125mcg, total. You could probably be dropped down to 75mcg, but if you feel Ok on 88/12.5, then I'd have you finish out the year that way.

6. Mystery tissue issue - what would be your course of action? This is most likely scar tissue because it is not vascular. If it was, I would biopsy it right away.

7. Year one WBS, or monitor with ultrasound and stimulated Tg/TgAB testing, and TSH, FT4 tests? Most Endocrinologists are moving away from the WBS because it is not as sensitive as doing an ultrasound and stimulated Tg/TgAB testing. An unstimulated Tg/TgAB test should be done before the stimulated testing. I'd do a 6 month ultrasound with stimulated Tg/TgAB, another at 18 months; after the third year, you could be tested every 24 months.

Other things she said:

-The first 18 months are critical as this is when the highest rate of recurrence occurs, then at 5 years, and at 20 years.

-Even with a 3.2cm tumor, since you are under 45 years old, you are stage 1. If you were over 45 years old, then you'd be at stage 2. If your tumor was over 4cm, you'd be stage 3. But even at stage 3, the prognosis is still 80% after 20 years post diagnosis and treatment.

-Ultrasounds should be extensive, covering levels 2-6 on both sides, as this is where metastases shows up first. This should be done every six months.

-Tumor size: The sizes noted were all different. 2.1, 2.7, and 3.2cm. I thought I read that FNAs could actually make it... spread? there is no real evidence of this. If it did grow, that would affect your prognosis.

So, overall, my second opinion ENDO was very reassuring, and was able to confirm that my ENDO is not a clown. Yay!!! I feel so much better now about my care and treatments thus far, and my overall outlook.

Wow. Stuck in traffic on N Torrent Pines Rd for over 30mins now. I've only gone about a mile. WTF. UCSD traffic? So much for getting any work done before pilates.

It took me 45 minutes to get home!
Correction: It took me an hour and a half to get home. 

2nd opinion ENDO appt was encouraging. She said she would be managing my case the same way as my ENDO. Mystery tissue most likely scar since it is not vascular.

Run club...turns out the reason why I end up with twigs and assorted rocks in my shoes after a run is because I shuffle my feet! LOL.

ThyCa group meeting - March 1, 2011

Can't believe it is already March! At our meeting this evening, we had two new members - a 21 year old and a 73 year old (who also has bladder and prostrate cancer). We tried to answer all of their questions and let them know a little about our own experiences. It sucks that we have to welcome new members, but at the same time, I am so glad we are there for them. They were at both ends of the spectrum - a young lady that just had her TT and RAI treatment, and an older man that is preparing for his surgery.

I can't imagine what my life would be like if I had to go through everything I did last year at their ages. At 21, I was in my last quarter in college, I had my whole life in front of me. At 73, I will hopefully be retired, and had lived a full and exciting life. But I'm right in the middle...in the middle of my life.

I don't think I told any of my fellow ThyCans that I have my second opinion appt on Thursday. Maybe that is a good thing because I may have to reschedule it (again) if they tell me they still have not received copies of my medical records. The records were sent over on February 18th, so they should have gotten there by now. Anyway, I hope she can tell me something else.....different.....from what my current ENDO has been telling me. Something perhaps a little more reassuring.

I work with clowns. I'm not paid well enough to have to work with clowns. Why am I working with CLOWNS?!?

T3 dosage - so far so good

Despite the fact that I was completely exhausted due to lack of sleep and a busy schedule toward the end of last week, I think the addition of T3 to my daily T4 dosage seems to be working. Well, I think at least as far as the brain fog is concerned. Or, maybe I just have not been in a lot of conversations lately?

I have been on T3 since February 13, so it has only been 15 days. Too soon to see a change? I don't know. But, I can tell you one thing that has changed a lot over the past couple of months....my PMS symptoms. Pretty much the only thing that is the same each month is the fact that I am ravenous, so I eat, and eat, and eat - so not good for keeping on track with the WeightWatchers Points Plus program. Is this normal? I've been reading on my ThyCa listserv that some women are experiencing early menopause, like at age 40. I would settle for PMS I could count on and a 28-day cycle over early menopause.

Anyway, hoping the T3 has solved my brain fog and tiredness issues.