Monday, October 24, 2011
Sunday, October 23, 2011
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.
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.
Thursday, October 20, 2011
Wednesday, October 19, 2011
Sunday, October 16, 2011
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!
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.
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.
Friday, October 14, 2011
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.
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.
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.
Saturday, October 8, 2011
Thursday, October 6, 2011
Wednesday, October 5, 2011
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.
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.
Monday, October 3, 2011
Saturday, October 1, 2011
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.
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.
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