How does my neck look? 4/30/11

It has been a while since I've done one of these, so I thought I should do one, especially since I'm coming up on my one year anniversary for my first thyroid surgery in just a few days.

I have been rushing around the whole week, and I have been tired the whole week. Today is no exception, and I seemed to be even more so in need of a nap today than I was the whole week. Maybe I am still recovering from the drive up to Sacramento last week? Maybe I'm just a bit stressed over leaving for vacation this week? I am a little less stressed about the welfare of my Frankie since he is in good hands with Viv. I don't know. Several times at work this past week I really needed a nap. It was so bad that I was actually falling asleep at my desk! That tired. Luckily I didn't fall asleep while I was out and about today. I wanted to nap, but I resisted since I was driving at the time. I did, however, fall asleep while I was getting my haircut and while getting my mani/pedi. I probably just need the rest, the time off from....every thing. I really hope my meds do not need to be changed again.

Anyway, last weekend when I was in Sacramento, I had the perfect photo op with my sister Viv and my mom. We did a 'How do our necks look' photo. So what do you think? - How do our necks look?

Haircut and low-lights day....maybe mani/pedi day as well, we'll see.

Last weekend in review - April 23-24, 2011

Frankie crashed out in the back of my car

Where did last weekend go? On Thursday I took Frankie to see Tess one last time, then he had one last massage on Friday afternoon. Then, one minute I'm driving up to Sacramento, the next minute I am driving back. It was hurried, but I got the job done. We left at 2am on Saturday morning, then turned around at 12pm Sunday afternoon. Frankie is now in the comfort of Viv's home in Sacramento. No more worrying that he may slip on our tile floors trying to get to the garage, front door, or to his food bowl. He is definitely in a very comfy environment now.

Viv found a holistic vet in Sacramento and set up his first appt for Saturday afternoon. He got acupuncture for his arthritis and allergies. She uses wet needles (I believe she called it something like aqua-pressure) because instead of using the regular dry needles, she uses a syringe filled with saline solution; the injected liquid moves around and stimulates the injection site instead of the point of the dry needle doing all the work and the needle itself being shifted about to stimulate the points. He did Ok with the full round of shots. She also prescribed him some chinese herbs for his arthritis and allergies.

Frankie in Viv's driveway

He seems to be doing Ok with everything. He wasn't very hungry for any of his food. He was a bit fidgety while we were there. Just adjusting to his new environment. I kept on telling him that he is on vacation for a couple of weeks, and that I'd be back to get him. I didn't know when, but I'd be back for him. I really miss him, but I think the acupuncture will work even better than the massages did. I am very hopeful. I'm also really glad that Viv gets to spend some time with him.

The drive back home was painfully long. First of all, once we passed the 580 going south on the 5, I realized exactly why I always drove SF to SD late at night or very early in the morning - because complete idiots drive during daylight. We really need to impose German Autobahn rules on all two lane highways: Left lane is for passing only, all other times you should be in the right lane. It was ridiculous! Even going up the mountains in the Grapevine area - there I was going 70-80mph on the right lane reserved for slow trucks, while everyone in the fast lane was going 50-60 up the hill. Where did these people learn to drive?, have they never heard of cruise control?!? ARGH!!!

Right around Magic Mountain my 'check engine' warning light went on. Then right at the OC/SD county line, it was stop-n-go traffic for a solid hour. WTF. We didn't get home until 10pm!

Anyway, Frankie is where he needs to be, my car is Ok (thermostat housing was sticking), and I'm back to work.

Getting ready to drive back to San Diego. I didn't say "Good bye" to Frankie because I don't want him to feel abandoned. He's in good hands.

On the way to Sacramento, along the 5, somewhere in the middle. Tired.

WTF! - Woke up this morning with the green eye goo coming out of my left eye, AGAIN. It was very watery yesterday, especially at the gym last night. This sucks!

I can't put my dog down. Viv, his other mom, wants to take care of him for awhile. So I'm taking him up to Sacramento this weekend. I'm going to miss him.

Ok, I'm exhausted and need a nap! Not sure if it is truly my energy level being low (lack of caffeine?) or the boring subject matter?

How does my neck look? 4/17/11

Wow, where did the weekend go? It is already Sunday night.

I was taking notes on my energy level this weekend since I think I am over caffeinated. I have been drinking several cups of coffee in the mornings at work since....since I returned to work, it seems. So when my ENDO asked me about my energy level a few days ago, I knew I couldn't give him a straight answer because I know in the back of my mind I've been depending on caffeine to keep me going during the work week. This is probably why I end up really tired on the weekends in the afternoon - because I don't pump myself up with several cups of coffee on Saturday and Sunday mornings. Well, if I go out to breakfast, then yes, I would be loading up on the coffee, decaf, but I don't do that that often either. So both days, I needed a nap. For the past weekends it has been pretty much the same thing. Well, not last weekend since I was sick. I think I better cut down on my morning coffee consumption - go back to decaf, and just one cup, er tumbler since I drink out of a 12 oz tumbler at work, not a cup/mug.

Now the dog thing...I have been in contact with a vet that will come to my house and 'take care' of Frankie for me. I'm still having a problem going through with this. He still has problems getting up on his own a lot of the time, but when he is up and happy, he literally skips and jumps around, like there is nothing wrong with his lower back/hips. I think the massage sessions have been working wonders on him. I took him to Noah's for a bath yesterday and Hannah and Megan both think he looks better than ever, even walking around. I told them it was going to happen next weekend or the weekend after. I still can't get myself to tell the vet which date. Isn't there another option for this situation? Argh!!! But we did want him to go out  strong, with dignity, not in pain and completely miserable. He seems really happy most of the time, so in a way, he is where we wanted him to be when it was time. Now if I could just follow up on my end...

So, how does my neck and my Frankie look?

First morning since I started taking the antibiotic eye drops that I didn't wake up with green goo coming out of or had crusties around my left eye. Yay!

Green eye goo

So, the Urgent Care doc told me I have pink eye (although it is listed on my discharge paper work and prescription paper work as conjunctivitis/bacterial eye infection). I asked how fast it takes for it to manifest itself. He said within a couple of hours to 48hrs. I had mentioned that I was climbing the night before, and that was when the green stuff started to come out this time. He said he never thought of that, because he climbs sometimes. Then I mentioned that I have blocked tear ducts, etc., so he said he'd give me a very strong antibiotic to make sure it kills all the bugs in there. Great. I picked up the antibiotics which are in eye drop form, and some saline solution he said to get to flush out my eyes.

It is highly contagious, so I decided against going to my chiro for my shoulder pain. I did mention it when I checked in to Urgent Care, but it was not addressed, only the green eye goo was. So, I guess I'll have to see how it feels tomorrow, maybe put some mineral ice or liniment oil on it before I go to bed.

Was I the only one that thought I could use my contact lens cleaning solution, since it is a saline solution, to wash out my eyes? I was at Target looking for a small bottle, but all the boxes specified cleaning or whatever, and nothing about using it to flush out your eyes. So I consulted Serena, who confirmed that no, contact lens cleaning solution should not be poured into your eyes, and recommend I look for Bausch & Lomb Sensitive Eyes. Sure enough the boxes indicate that this saline solution is not used for disinfecting contact lenses, but merely to rinse and store soft contact lenses. Oddly enough, most places only have it in the value pack, with two bottles. I don't need two bottles.

So far, my eyes are watering a lot less, and no more green goo is coming out of my left eye. He said things should clear up pretty fast, but to make sure I finish the five day course of treatment. I'll be so happy on day six. And having to go through this experience, I think I better have an eye doc, maybe Serena, try to flush out whatever is pooling up in my tear ducts so this doesn't happen again. Still not so keen on a procedure (DCR) that may not completely clear things up, but I really don't want to get pink eye again. Hopefully I can find a happy medium somewhere in there.

ENDO says - part 8

Yesterday I had a follow up visit with my ENDO. I had some questions for him that I emailed to him in advance. Below are the answers to my questions as well as other things covered in my appt:

1. My radioactive iodine dose and WBS were scheduled for Monday 6/13 and Wednesday 6/15 respectively. Isn't the usual protocol to do Thyrogen shots on Monday and Tuesday, scan dose on Wednesday, then WBS and Tg blood draw on Friday? Wouldn't a scan dose on a Monday put my Thyrogen shots on a Saturday and Sunday? This is the protocol that we have been using for several years, due to availability of nurses during the week, so the shots are administered on the weekend. We are working on changing the procedure. If you want to have the shots done on a different day…. No, not a problem. I can stick to the current schedule, but where do I go for the shots on a weekend? Urgent Care. Ok. Didn’t even think about that, but that makes sense. We’ll give you a handout on the Thyrogen procedure before you leave today.

2. Were my ultrasounds in December & January 'extensive or careful' neck ultrasounds, where all levels, including 2-6 on both sides, were checked? If not, can I have one done this year, and could it be part of my follow-up plan going forward? I am confident in the skill of our ultrasound technicians, that they would be checking all areas that need to be looked at. If you want, you can ask them if they are looking at levels 2 through 3 (what about 4-6?) during your next ultrasound. I think ultrasounds uncover more insignificant lymph nodes; the stimulated Tg is the more important test.

3. My FT4 is finally in range. Did the addition of T3 bring down my FT4 levels, or did that happen on its own? Now that I am taking T3, should my blood work also include either T3 or FT3? Your FT4 is finally in range because we lowered your medication. T3 is very potent. But my TSH is lower than before, it is <.01. TSH should be undetected. It is not much lower than before, but we want it to be low and suppressed. We should stay with your current meds. Great, because I need to get a refill, but wasn’t sure if I should my current prescription or not.

4. If I lose a significant amount of weight (20+ lbs), will my meds needs to be changed? He didn’t answer this question.

Other stuff he said:

-I mentioned before that your prognosis is good. You are “Stage I” because you are under the age of 45. Your Tg and TgAB are both undetectable. I predict that your WBS in June will most likely be clear. If you feel that confident about your prediction, who do you think will win the Super Bowl next year because I’d like to put money on that……(hahaha)

 -For your WBS, Thyrogen shots on Saturday & Sunday, scan dose on Monday, WBS on Wednesday. Make sure you get the stimulated Tg blood draw after your WBS – tell them you only need the Tg drawn. So Tg blood draw on Wednesday 6/15? Yes. Tg only. We will call you at the end of June with the WBS and Tg results. A stimulated Tg level at <2 is good.

-July follow up ultrasound with a visit the following week. Let’s confirm that appt with Gwen. Before your July appt, let’s do another Thyroid panel. You have standing orders for these, but let’s update those, add Total T3 for your July blood draw. We may change your meds, but will do so after your WBS. Your blood draw in July, with the Total T3, will help me to determine which way I need to change your meds, if necessary.

-What will my follow treatment be going forward? Blood work, maybe another follow up ultrasound in 6 months. Then yearly blood draws for TSH and Tg. If your WBS is negative, no more scans. If stimulated Tg is <2, we probably won’t repeat it.

-How are you feeling with the addition of T3? It was added to help with some mental (I’m thinking to myself at this point ‘hold up buddy, when did I call them mental issues? I was just having problems remembering words/things/my point when I am talking!’) issues, fatigue. Things were going pretty well the first month. But at the end of last month I was in San Francisco for a meeting and I couldn’t complete my sentences. I don’t know if it had anything to do with the stress of the day – wet, rainy SF day, big meeting – or if it was the meds not working. Tiredness….I’ve always had a problem with that, so I don’t think it would change with the added T3. I’ve been sick the past week, so it is hard to compare how I’ve been feeling recently. I guess it is working. I feel good otherwise. How are your periods? Are they consistent now? It was coming every 4 weeks, but last month it was only 3 weeks. I think it is probably going to stay around the 3-4 week cycle.

So, it was a good appt. I think I’m a lot less anxious at my ENDO appts now. Even if I still have questions about things, I am not as worried about them now as I have been in the past. I’m sure this makes me a more relaxed patient to have to deal with.

Well, green stuff coming out of my eye again. Viral infection possible, so says my optometrist friend. Also tweaked my left shoulder climbing last night. Argh!

ENDO appt went well. He was running late, but that didn't change the fact that I didn't get any bad news. Yay!

How does my neck look? 4/9/11

I thought I'd never see the day when my FT4 was within range, but today is the day! My blood draw was Tuesday afternoon. I've been sick since Thursday, so I haven't been checking to see if my ENDO posted my levels online until now. So unless my labs got mixed up with someone else's who has ThyCa (because my TSH is lower than usual), my FT4 is 1.0 (range 0.7 - 1.5), but my TSH is <.01 (range for ThyCans 0.1 - 0.5). To celebrate, I thought I'd post a neck photo so you can tell me how the neck of someone who's FT4 is finally in range looks like!

 

In case you were wondering what my FT4 and TSH levels have been, since my surgeries and RAI last year, here's my blood draw history:

04/05/11              Free T4 1.0 ng/dl0.7-1.5                  TSH <0.01 uIU/ml0.35-5.50

02/07/11              Free T4 1.7 ng/dl0.7-1.5                  TSH 0.01 uIU/ml0.35-5.50

12/03/10              Free T4 1.8 ng/dl0.7-1.5                  TSH 0.01 uIU/ml0.35-5.50

11/05/10              Free T4 1.9 ng/dl0.7-1.5                  TSH <0.01 uIU/ml0.35-5.50

10/05/10              Free T4 1.6 ng/dl0.7-1.5                  TSH 0.01 uIU/ml0.35-5.50

08/10/10              Free T4 1.63 ng/dl0.51-1.20           TSH 0.25 uIU/ml0.34-4.82

06/29/10              TSH 67.44 uIU/ml0.34-4.82 (Taken before RAI, to make sure it was over 30)

*NOTE: TSH for ThyCans has to be below 1.0, as the goal is to suppress the TSH so we are borderline hyperthyroid, making it hard for any thyroid cells, cancerous or not, to create Tg, which is the thyroid cancer tumor marker.

Just got call from NucMed to schedule my 1 yr WBS. Monday, June 13 scan dose; Wednesday June 15 WBS. Said my ENDO will schedule my Thyrogen shots accordingly.

Is the T3 working?

Is it? I'm sure this is a question my ENDO will be asking me at my appt next week. I don't think I have an answer to that. I just don't know. It seemed to be working when I started taking it mid-February. But skip forward a month, I'm in San Francisco to brainstorm with my 'clients' (really, they were my co-workers that have a stake in the database I am charged with creating) on my main project. I couldn't talk. A few times I caught myself pausing because I couldn't finish my thought or sentence, and I had to say, 'brain not working.' I haven't had to say that in a month, and there I was, in an important meeting and not able to formulate a sentence. Crap.

"Was it the meds, were they not working?" I have no idea. So, I started to review my daily routine - is it something I am doing that is making this happen again? My observations are as follows:
-I've been drinking a lot more coffee, daily. Not Peet's strength coffee, but coffee nonetheless.
-I've been getting a lot less sleep for about a month now. I think it is mostly work stress, but more recently it has been pet stress.
-I've had a few days where I felt like I was going to fall asleep driving home.
-For the first time today (actually, yesterday 4/6), I felt sleepy at work.
So, I am thinking and hoping that this is just from lack of sleep, not that the new med is not working.

I did have my 6wk blood draw yesterday, to see what my levels are with the lower T4 and the added T3 dosage change from February. Just in time for my ENDO appt next week. I'm trying to put together some questions for my ENDO. He always asks me what questions I have after he has gone over all of his stuff with me, but sometimes I'm still processing what he just told me, so I'm not even sure what to ask. One time my question didn't even make sense to me, and all I remember him saying was, "I think you are asking about....." LOL - must've been that thyroid brain fog. Once or twice I did go to my appt with questions in hand, but I think it would be nice to give him my questions ahead of time so he knows what my concerns are going into my appt. So far, I only have two questions for him:
1. Will the Genzyme Thyrogen shortage affect when my WBS is scheduled in June?
2. Was my ultrasound in December a 'careful neck ultrasound', where all levels are checked? If it wasn't, I want one.

ThyCa group meeting - Apr 5, 2011

Another good meeting last night. Well, gee, how could any of our meetings be bad when we are amongst others in the same boat?!? As usual, there were a lot of questions from our two newest members. I had to add my two cents on something that was not really a question, but I felt it needed to be said. I was in her shoes not too long ago, so I know the feeling, and in that moment, when I was listening to her say, "but I'm thinking of applying for a job, but what if I have to go through another round of RAI or surgery?..." I was sitting right next to her so I looked her in the eye and said,

"I think you should do whatever you want to do. We can't let our cancer dictate our lives. I was there not too long ago (this is where I started to get choked up a bit). I was lucky to be able to take off four months from work. When I returned last September, my boss was already telling me what my goals and projects were for the rest of the year and this year, and all I could think to myself was 'but what if I have to get another round of RAI or a surgery?!?' I couldn't look past what I had just gone through. But you can't put your life on hold because you are afraid that you may have to go back for more treatment."

Just recently, I realized that I was at that place where I was able to look beyond my cancer. I was almost there during Christmas when during a heated argument with Viv, I had said, "After everything I had to go through this past year, I think I should be able to do anything I want to do, regardless of how reckless or irresponsible it is." At the time, I was half believing it, because I was still worried about the mystery tissue that was uncovered by my ultrasound earlier that month, that I was going to need surgery to remove it if it was thyroid tissue. Then at the start of this year, I had to layout my projects and goals for the year. I couldn't even give myself any due dates because all I could think of was 'but I might need surgery for my mystery tissue, then I have my 1-yr anniversary WBS in May and I'll have to go hypo....' I know, what kind of thinking was that? All I was focusing on was the what if this or what if that scenarios. Everyone around me is telling me to think positive, to not worry. That is so easy to say when you are not the one who is dealing with it. But when you are that person who is living it, it is a completely different story.

It wasn't until my appt with my 2nd opinion ENDO last month that I started to believe that things really are going to be Ok, that I don't have anything to worry about...that it is Ok to make future plans, but most importantly that it is Ok to live my life. Now, I'm not cancer free yet, and I'm not saying that I will never have anything to worry about again, because that would be foolish. But I was finally there, at the point where I wasn't worried about what was going to happen to me with my cancer.

I want to thank my family, friends, co-workers, pretty much everyone for allowing me to get to that point on my own terms. I'm sure there are some of us, cancer patient or not, that can get to that point fairly easily, but I am not one of those people. I am that person that needs to see it to believe it. But I believe it now. I am no longer letting my cancer dictate my life.

How does my neck look? 4/3/11

I've been a little too preoccupied thinking about what to do about my dog, Frankie. It seemed pretty clear until his vet appt this past Thursday (3/31) that we should put him down because he is having a hard time getting up. We get to the vet and he is happy, has a good attitude, no scratching.....he was a bit of a different dog. The vet said he wasn't even going to talk about euthanasia since he looked like he had at least a few more weeks if not months. Wow. They took samples from the areas where he has been licking/chewing a lot, lately, and took some blood. The vet said he'd let me know what combination of meds would be cost effective, yet keep him as comfortable as possible - less itchiness, able to get up on his own.

Saturday, after Tess worked on his nails, she called me back to sit with and talk about Frankie. She said she couldn't get him to get up. Then she started to cry and told me that this should be his last month because his mind is there, but his body cannot keep up with his brain - he wants to get up, but he doesn't know why his back legs are not working. She also said that as long as I am around to help him get up, he can keep on going forever, but I'm really just dragging things out for him. We talked about a local vet that goes to your house to put your pet down. Tess had used her before. She also mentioned another client that takes her dogs to a place for pet acupuncture. Later that evening, I got a call from Terry who told me about the Animal Healing Center.

Viv and I think we should try everything so that his last couple of weeks are good ones, no itchies, no problems getting up on his own. So while we were ready to give him meds, we are hoping that either acupuncture or chiropractic adjustment will work. It'll be more expensive than the meds route, but we want to try everything. Hopefully I can get an appt for him this week.

As for myself, I think I have been doing Ok. Dealing with work stuff. Dealing with the dog issue. I think the added T3 med has been working. Well, actually, in the last couple of weeks I have noticed the brain fog during conversations again. I really noticed it when I was in SF for my project meeting. Not the best place for this to happen. I'm supposed to have my blood drawn this week, to make sure my current meds have stabilized, and my levels are good. Not sure if my T3 or FT3 also needs to be checked. Also this week is my ThyCa meeting. I am looking forward to seeing how everyone in my group is doing, and how the newest members are dealing with things.

Anyway, how does my neck look?