Last week and this week, I’ve been undergoing testing to see if the second RAI treatment in June killed what was left of the thyroid tissue. Apparently, it hasn’t killed it all. My blood test results show I still have a stimulated Tg (thyroglobulin) of 16.7 (indicating remaining thyroid tissue), although it’s down from 22 in June before the treatment, and my ultrasound and whole-body scan results are still pending. I meet with my endocrinologist next Tuesday to discuss the results and where to go from here.
This is absolutely a lesson in patience and a lesson in learning to live with shades of gray instead of neat-and-tidy, clear-as-day black-and-white.
I know from all my reading that there is a significant group of us thyroid cancer patients who never achieve an undetectable thyroglobulin despite being unable to locate a source of the Tg. In fact, the American Thyroid Association’s most current guidelines say that “only about 5% of all PTC [papillary thyroid cancer] patients die of their disease, yet 15-20% of low-risk PTC patients are likely to have persistent disease based on persistent measurable Tg with stimulation testing.”
Thursday, December 17, 2009
Tuesday, October 13, 2009
I Miss Brendan
Brendan has not been here for more than 2 months. He has stayed at his dad’s house for 5 weekends when he was supposed to be here. I want Brendan to see a counselor, and my attorney is in the process of trying to make that happen. If dad won’t allow it, we’ll ask a judge to order it.
Three days ago, Brendan turned 16, and he did not return my call that day, acknowledge the gift and card I left on his dad’s front porch that night, after it was clear I wasn’t going to be allowed to see him, or in any other way contact me. That is the first time I haven’t seen my son on his birthday.
Three days ago, Brendan turned 16, and he did not return my call that day, acknowledge the gift and card I left on his dad’s front porch that night, after it was clear I wasn’t going to be allowed to see him, or in any other way contact me. That is the first time I haven’t seen my son on his birthday.
Tuesday, September 1, 2009
Trusting God
It’s been a while since I’ve written—mostly because Jack was out of school for summer, and we were keeping busy having a great time. I am so fortunate to be able to spend time with Jack when he is out of school; I wouldn’t trade this for the world, and I am so thankful that God has put me in a place where I don’t have to work.
On the thyroid cancer front, I had bloodwork a few weeks ago and then saw my endo the following week, and my numbers look good (suppressed Tg still detectible at 0.2 ng/mL, but better than the suppressed 0.8 I had before the second dose of RAI). The real test will be in late November/early December, when I go off my Synthroid and on the low-iodine diet yet again to get a stimulated Tg draw and another WBS to see if the treatment really worked to knock that Tg of 22 down. I’m hoping for the best and expecting the best, too.
As my thyroid cancer and treatment fades into the background of my day-to-day life and another, more challenging trial comes to the forefront, God is proving faithful once again.
As of August 9, Brendan isn’t coming to our house anymore because we won’t give his dad $5,000 to help buy a car for his 16th birthday. Apparently, his dad told him we’d agreed to buy him a car for his birthday, and when I said that wasn’t the case, things blew up and Brendan texted me and said, “Don’t expect to be seeing me anytime soon.” After a string of rather unpleasant e-mails from Brendan (in which he says I am hurtful and unsupportive and only care about Jack), he has let most of my e-mails go unanswered and doesn’t return my calls or text messages. I have not spoken to him since Friday, August 7, when I dropped him off at his dad’s house after we returned from our family vacation in San Diego.
It’s been difficult. While I know we are doing the right thing by not giving in to his spoiled teenager demands and his dad’s continuing psychological manipulation (working harder than ever at completing the alienation process, trying to tear Brendan from me for good), it has not been an easy few weeks. There have been doubts, tears, and sadness. But there has also been confirmation from God that He has His loving hands on the situation. And more importantly, He has given me comfort and hope.
On August 23, in the midst of all this, there was the most amazing thing written in the daily devotional book Diane gave me for my birthday called “Jesus Calling,” by Sarah Young.
Here’s what it said:
“Entrust your loved ones to Me; release them into My protective care. They are much safer with Me than in your clinging hands. If you let a loved one become an idol in your heart, you endanger that one—as well as yourself. Remember the extreme measures I used with Abraham and Isaac. I took Isaac to the very point of death to free Abraham from son-worship. Both Abraham and Isaac suffered terribly because of the father’s undisciplined emotions. I detest idolatry, even in the form of parental love.
“When you release loved ones to Me, you are free to cling to My hand. As you entrust others into My care, I am free to shower blessings on them. My Presence will go with them wherever they go, and I will give them rest. This same Presence stays with you, as you relax and place your trust in Me. Watch to see what I will do.”
(based on Genesis 22:9-12; Ephesians 3:20; and Exodus 33:14)
This was clearly God’s voice meant for me. I can’t believe (why am I surprised?) how appropriate, accurate, comforting, and right on this is. I’m so glad I’m hearing God’s voice through this. So glad. What would I do without Him?
So I guess I am supposed to release Brendan to Him—into His loving hands. I am supposed to trust in God, trust in Him with all my heart and lean not on my own understanding. I’m supposed to acknowledge Him in all my ways, and He will direct my paths. (Of course, I’m paraphrasing here, but Proverb 3:5-6 emerged as my “life verse” back in the days of the custody battle…not so long ago…2004…and it still is my life verse. I know with certainty that I’m never going to not need this verse.)
On the thyroid cancer front, I had bloodwork a few weeks ago and then saw my endo the following week, and my numbers look good (suppressed Tg still detectible at 0.2 ng/mL, but better than the suppressed 0.8 I had before the second dose of RAI). The real test will be in late November/early December, when I go off my Synthroid and on the low-iodine diet yet again to get a stimulated Tg draw and another WBS to see if the treatment really worked to knock that Tg of 22 down. I’m hoping for the best and expecting the best, too.
As my thyroid cancer and treatment fades into the background of my day-to-day life and another, more challenging trial comes to the forefront, God is proving faithful once again.
As of August 9, Brendan isn’t coming to our house anymore because we won’t give his dad $5,000 to help buy a car for his 16th birthday. Apparently, his dad told him we’d agreed to buy him a car for his birthday, and when I said that wasn’t the case, things blew up and Brendan texted me and said, “Don’t expect to be seeing me anytime soon.” After a string of rather unpleasant e-mails from Brendan (in which he says I am hurtful and unsupportive and only care about Jack), he has let most of my e-mails go unanswered and doesn’t return my calls or text messages. I have not spoken to him since Friday, August 7, when I dropped him off at his dad’s house after we returned from our family vacation in San Diego.
It’s been difficult. While I know we are doing the right thing by not giving in to his spoiled teenager demands and his dad’s continuing psychological manipulation (working harder than ever at completing the alienation process, trying to tear Brendan from me for good), it has not been an easy few weeks. There have been doubts, tears, and sadness. But there has also been confirmation from God that He has His loving hands on the situation. And more importantly, He has given me comfort and hope.
On August 23, in the midst of all this, there was the most amazing thing written in the daily devotional book Diane gave me for my birthday called “Jesus Calling,” by Sarah Young.
Here’s what it said:
“Entrust your loved ones to Me; release them into My protective care. They are much safer with Me than in your clinging hands. If you let a loved one become an idol in your heart, you endanger that one—as well as yourself. Remember the extreme measures I used with Abraham and Isaac. I took Isaac to the very point of death to free Abraham from son-worship. Both Abraham and Isaac suffered terribly because of the father’s undisciplined emotions. I detest idolatry, even in the form of parental love.
“When you release loved ones to Me, you are free to cling to My hand. As you entrust others into My care, I am free to shower blessings on them. My Presence will go with them wherever they go, and I will give them rest. This same Presence stays with you, as you relax and place your trust in Me. Watch to see what I will do.”
(based on Genesis 22:9-12; Ephesians 3:20; and Exodus 33:14)
This was clearly God’s voice meant for me. I can’t believe (why am I surprised?) how appropriate, accurate, comforting, and right on this is. I’m so glad I’m hearing God’s voice through this. So glad. What would I do without Him?
So I guess I am supposed to release Brendan to Him—into His loving hands. I am supposed to trust in God, trust in Him with all my heart and lean not on my own understanding. I’m supposed to acknowledge Him in all my ways, and He will direct my paths. (Of course, I’m paraphrasing here, but Proverb 3:5-6 emerged as my “life verse” back in the days of the custody battle…not so long ago…2004…and it still is my life verse. I know with certainty that I’m never going to not need this verse.)
Sunday, June 28, 2009
2 Timothy 3:14-15
At church this morning:
“But continue you in the things which you have learned and have been assured of, knowing of whom you have learned them; And that from a child you have known the holy scriptures, which are able to make you wise to salvation through faith which is in Christ Jesus.”
--2 Timothy 3:14-15, American King James version
“But continue you in the things which you have learned and have been assured of, knowing of whom you have learned them; And that from a child you have known the holy scriptures, which are able to make you wise to salvation through faith which is in Christ Jesus.”
--2 Timothy 3:14-15, American King James version
Sunday, June 21, 2009
Can't Taste My Food
I feel good. Taste buds dull, but can still taste a little bit. Keep asking Poms and Jack “Does this need salt?” at the dinner table.
Energy good. No nap.
Energy good. No nap.
Friday, June 19, 2009
Can't Sleep, Love Ice Cream
Can’t sleep. Thinking about eating a bowl of ice cream. Not the best idea, but…Just realized I can’t eat anything until an hour after I take my Synthroid, so I just threw my Synthroid to the back of my throat and had some water to clear the path for the possibility of breakfast as early as approximately 5:05 am. This cracks me up. Too tired to type anymore. Time to go back to sleep. Nighty-night.
Thursday, June 18, 2009
ThyCa Listserv Help
posted on thyca listserv
Hi, all.
Just wanted to post an update on my journey.
I had my second RAI treatment last Monday and my follow-up WBS today. Although I have requested it in the past, this is the first time the radiologist sat down with me after the scans and went over my pictures with me, for which I was so grateful that I was falling all over myself thanking him. There was one area of uptake in my neck, as expected, and nothing else of note. (YEA!) There was no reason to expect any other uptake, but still, a relief that there's just this little pesky remnant in my neck. The radiologist does not think it is a lymph node or nodes. It took up the iodine. All good.
I feel such a tremendous sense of relief! My gut is telling me there's a very good chance this is the last treatment I'll have to have for this cancer, and that's such a joyous feeling. Even though I don't have my NED badge yet (No Evidence of Disease), I feel strongly that it's coming my way. I have an appt. with my endo next week to discuss when she'll want to do follow-up stimulated Tg and/or WBS testing to see if the treatment knocked the 22 Tg down to undetectible, but for now, I feel like I can breathe easy. As I move away from hypodom (TSH well over 60), I feel my energy coming back more quickly than I ever could have hoped for.
To those of you on a LID right now:
You can do it! Hang in there!
To those of you newly diagnosed:
You can handle this! Hang in there!
To those of you who are hypo as all hell right now:
The end is in sight! Hang in there!
To those of you who just had a RAI treatment:
You will make it through this! Hang in there!
To those of you dealing with recurrences:
You can overcome this! Hang in there!
And to those of you who have helped me along the way (especially my dear Katie), THANK YOU from the bottom of my heart. I couldn't have done it without the support of the compassionate people in this amazing group.
Lynn in Orange County, California
Biopsy on 3 suspicious nodules 1/9/08 inconclusive
2/21/08 TT (age 41)
Dx multifocal papillary carcinoma + 5/5 positive nodes
3/24/08 RAI 150 mCi
12/3/08 MRI clean
4/13/09 stimulated testing: TSH 60.27; Tg 22
4/16/09 WBS: “linear” uptake in neck
6/8/09 RAI 150 mCi
6/18/09 WBS: uptake in neck, not thought to be lymph node(s)
Hoping the second time’s the charm
Hi, all.
Just wanted to post an update on my journey.
I had my second RAI treatment last Monday and my follow-up WBS today. Although I have requested it in the past, this is the first time the radiologist sat down with me after the scans and went over my pictures with me, for which I was so grateful that I was falling all over myself thanking him. There was one area of uptake in my neck, as expected, and nothing else of note. (YEA!) There was no reason to expect any other uptake, but still, a relief that there's just this little pesky remnant in my neck. The radiologist does not think it is a lymph node or nodes. It took up the iodine. All good.
I feel such a tremendous sense of relief! My gut is telling me there's a very good chance this is the last treatment I'll have to have for this cancer, and that's such a joyous feeling. Even though I don't have my NED badge yet (No Evidence of Disease), I feel strongly that it's coming my way. I have an appt. with my endo next week to discuss when she'll want to do follow-up stimulated Tg and/or WBS testing to see if the treatment knocked the 22 Tg down to undetectible, but for now, I feel like I can breathe easy. As I move away from hypodom (TSH well over 60), I feel my energy coming back more quickly than I ever could have hoped for.
To those of you on a LID right now:
You can do it! Hang in there!
To those of you newly diagnosed:
You can handle this! Hang in there!
To those of you who are hypo as all hell right now:
The end is in sight! Hang in there!
To those of you who just had a RAI treatment:
You will make it through this! Hang in there!
To those of you dealing with recurrences:
You can overcome this! Hang in there!
And to those of you who have helped me along the way (especially my dear Katie), THANK YOU from the bottom of my heart. I couldn't have done it without the support of the compassionate people in this amazing group.
Lynn in Orange County, California
Biopsy on 3 suspicious nodules 1/9/08 inconclusive
2/21/08 TT (age 41)
Dx multifocal papillary carcinoma + 5/5 positive nodes
3/24/08 RAI 150 mCi
12/3/08 MRI clean
4/13/09 stimulated testing: TSH 60.27; Tg 22
4/16/09 WBS: “linear” uptake in neck
6/8/09 RAI 150 mCi
6/18/09 WBS: uptake in neck, not thought to be lymph node(s)
Hoping the second time’s the charm
Wednesday, June 17, 2009
Why Would Anyone Eat a Whole Lemon?
I’m on my way to Hoag Hospital to get my whole body scan after my radioactive iodine treatment #2 last Monday, June 8, and I just ate an entire lemon. Something I thought I would never do, and something—to be quite honest, once I took the first bite—I didn’t think I could do. But as I was eating it, and as my salivary glands were getting used to the sourness, all I could think was “People with other cancers endure far worse for their treatments. Far worse. FAR WORSE! I started picturing women--with no hair, bad women, women with wigs, women with bandanas or scarves over their heads--and I instantly got humbled. Nd I ate the rest of the lemon, and by the end of it, it wasn’t that bad.
The whole idea behind eating a whole lemon an hour before your scan is to stimulate your salivary glands and rinse your mouth out with waster every 10 minutes after the lemon to rid your esophagus of a coating of radioactive saliva so there won’t be any sites of uptake on the scan that appear to be thyroid cancer cells but are actually just radioactive saliva pooled in your esophagus. Anyway, it’s a tip from one of the thyroid cancer expert who I’ve located online, and I hope it works.
My prayer right now is “Dear Lord, give me the peace and the ability to breathe in and out, in and out, to get through the scan without getting all worked up and worried, to keep my headache away—because I’ve had a terrible headache sort of a neck ache/headache combo on the right side sort of coming from behind the right side of my neck, up the right side of my neck into the right side of my head. Lord, just let me keep that headache away, and remind me to breathe in and out. Lord, I pray that this scan will be definitive one way or the other—whatever the outcome, I pray that it would be definitive, that there wouldn’t be questions. Lord, I thank you, also, for your faithfulness through this entire thing, for being there for me in the way that only You can be, for basically being m,y everything and being the one thing I know I can lean on and trust and depend on and get comfort from. Thank you, Lord, for everything you do for me. In Jesus’ name, Amen.”
For some reason, as I’m getting closer to Hoag, I’m thinking about the fact that I am trying new things now more impulsively. For instance—and this may be a bizarre example, but it is what it is—I opened up one of my recipe books on Sunday night (something I don’t do very frequently), and I picked out a recipe that calls for white wine, and in the past I would have instantly ruled that out (“I’m not making a recipe with white wine”). I’m not sure exactly why—just a knee-jerk reaction saying I don’;t want to have a bottle of wine around the house. But I know plenty of people who don’t drink and have a bottle of wine around the house for cooking , and it’s not a problem. In the past, I would have said no, I’m not making this recipe., or I would have made it without the white wine. Yesterday I was in the grocery store, and I wound up buying a bottle, and I feel like I;’m stashing some kind of illegal contraband in my house. I put it on a shelf that’s kind of out of reach, laid the bottle down on its side. But anyway, I have this bottle of white wine in my house and I’m planning on making this Rachel Ray pasta carbonara recipe using the wine, but I feel very weird about having it in the house. At the same time, I’m proud of myself for trying something new, going out on a limb, “investing” in a bottle of white wine which was only $8—the cheapest bottle of white wine I could find.
This is a long, drawn-out story to illustrate the point of me doing more stuff, maybe taking more risks, as if buying a bottle of white wine is a risk…I was standing in the store appreciating the cute label, I felt kind of guilty and weird about it and wondered if I was going to get it home and drink it. Not the whole thing, mind you, but I just wondered if I was going to have a glass of wine, and I didn’t want to , but I thought, “Am I going to be able to handle having this around?” Well certainly I am.
After the scan(s):
Cute things happen all the time, and we just forget to think about them. I’m on the 55 Freeway after my scan at Hoag, and a chartreuse Volkswagen Bug just drove by in bumper-to-bumper traffic, and in the passenger seat was a cute little Asian gal wearing white-rimmed sunglasses who had two teeny tiny chihuahuas on her lap, and when I drove by her and I looked out my window and smiled and mouthed the words, “How cute,” she made one of the chihuahuas wave at me with its tiny, delicate left paw. How cute is that? It’s stuff like that that makes life worth living.
The results of my scan was that there was uptake in my neck exactly where we thought there would be, no uptake anywhere else, which is a relief, because I had been in a very paranoid fashion thinking I had felt something in my right lung.
The radiologist sat down with me and looked over the scans with me, and basically gave me the results, and if that’s not God, I don’t know what is. They’ve told me in the past at Hoag that they don’;t do that, so I prayed for that, and it happened, and I am so glad. Now I don’t have to wait a week to find out where there was uptake, and was it normal,. Blah blah blah. Anyway, I’m very relieved and super happy that Dr. Wong took the time to go over my results with me. Another piece of evidence that God is awesome.
Wednesday, June 17, 2009, 9:41 pm
Hi, all.
Just wanted to send an update on my journey.
I had my second radioactive iodine treatment last Monday and my follow-up whole-body scans today, which shows where the iodine was "taken up" and where it is presumably killing thyroid cancer cells. (You go, radioactive iodine!) The radiologist, who is a nuclear medicine doctor, sat down with me after the scans and went over my pictures with me--basically giving me the results of the scans right away. There was one area of uptake in my neck, as expected, and nothing else of note. Good news. It means the radioactive iodine is working on killing the thyroid cells that are left over from the surgery and the first treatment. Kind of like mopping up the floor after sweeping.
I feel a tremendous sense of relief! My gut is telling me there's a very good chance this is the last treatment I'll have to have for this cancer, and that's such a joyous feeling. Even though I don't have my NED badge yet (No Evidence of Disease), I feel strongly that it's coming my way someday soon. There's no "cure" for thyroid cancer, but we thyroid cancer patients hope to hear we're "NED" one day--and then we hope to hang onto the NED label for the rest of our long, wonderful, blessed lives.
I will have some follow-up testing in 4-6 months to see how successful the treatment was. I'll let you know what happens then.
Thank you all for your support and prayers and help and offers of help and for caring.
God is good!
Love,
Lynn
The whole idea behind eating a whole lemon an hour before your scan is to stimulate your salivary glands and rinse your mouth out with waster every 10 minutes after the lemon to rid your esophagus of a coating of radioactive saliva so there won’t be any sites of uptake on the scan that appear to be thyroid cancer cells but are actually just radioactive saliva pooled in your esophagus. Anyway, it’s a tip from one of the thyroid cancer expert who I’ve located online, and I hope it works.
My prayer right now is “Dear Lord, give me the peace and the ability to breathe in and out, in and out, to get through the scan without getting all worked up and worried, to keep my headache away—because I’ve had a terrible headache sort of a neck ache/headache combo on the right side sort of coming from behind the right side of my neck, up the right side of my neck into the right side of my head. Lord, just let me keep that headache away, and remind me to breathe in and out. Lord, I pray that this scan will be definitive one way or the other—whatever the outcome, I pray that it would be definitive, that there wouldn’t be questions. Lord, I thank you, also, for your faithfulness through this entire thing, for being there for me in the way that only You can be, for basically being m,y everything and being the one thing I know I can lean on and trust and depend on and get comfort from. Thank you, Lord, for everything you do for me. In Jesus’ name, Amen.”
For some reason, as I’m getting closer to Hoag, I’m thinking about the fact that I am trying new things now more impulsively. For instance—and this may be a bizarre example, but it is what it is—I opened up one of my recipe books on Sunday night (something I don’t do very frequently), and I picked out a recipe that calls for white wine, and in the past I would have instantly ruled that out (“I’m not making a recipe with white wine”). I’m not sure exactly why—just a knee-jerk reaction saying I don’;t want to have a bottle of wine around the house. But I know plenty of people who don’t drink and have a bottle of wine around the house for cooking , and it’s not a problem. In the past, I would have said no, I’m not making this recipe., or I would have made it without the white wine. Yesterday I was in the grocery store, and I wound up buying a bottle, and I feel like I;’m stashing some kind of illegal contraband in my house. I put it on a shelf that’s kind of out of reach, laid the bottle down on its side. But anyway, I have this bottle of white wine in my house and I’m planning on making this Rachel Ray pasta carbonara recipe using the wine, but I feel very weird about having it in the house. At the same time, I’m proud of myself for trying something new, going out on a limb, “investing” in a bottle of white wine which was only $8—the cheapest bottle of white wine I could find.
This is a long, drawn-out story to illustrate the point of me doing more stuff, maybe taking more risks, as if buying a bottle of white wine is a risk…I was standing in the store appreciating the cute label, I felt kind of guilty and weird about it and wondered if I was going to get it home and drink it. Not the whole thing, mind you, but I just wondered if I was going to have a glass of wine, and I didn’t want to , but I thought, “Am I going to be able to handle having this around?” Well certainly I am.
After the scan(s):
Cute things happen all the time, and we just forget to think about them. I’m on the 55 Freeway after my scan at Hoag, and a chartreuse Volkswagen Bug just drove by in bumper-to-bumper traffic, and in the passenger seat was a cute little Asian gal wearing white-rimmed sunglasses who had two teeny tiny chihuahuas on her lap, and when I drove by her and I looked out my window and smiled and mouthed the words, “How cute,” she made one of the chihuahuas wave at me with its tiny, delicate left paw. How cute is that? It’s stuff like that that makes life worth living.
The results of my scan was that there was uptake in my neck exactly where we thought there would be, no uptake anywhere else, which is a relief, because I had been in a very paranoid fashion thinking I had felt something in my right lung.
The radiologist sat down with me and looked over the scans with me, and basically gave me the results, and if that’s not God, I don’t know what is. They’ve told me in the past at Hoag that they don’;t do that, so I prayed for that, and it happened, and I am so glad. Now I don’t have to wait a week to find out where there was uptake, and was it normal,. Blah blah blah. Anyway, I’m very relieved and super happy that Dr. Wong took the time to go over my results with me. Another piece of evidence that God is awesome.
Wednesday, June 17, 2009, 9:41 pm
Hi, all.
Just wanted to send an update on my journey.
I had my second radioactive iodine treatment last Monday and my follow-up whole-body scans today, which shows where the iodine was "taken up" and where it is presumably killing thyroid cancer cells. (You go, radioactive iodine!) The radiologist, who is a nuclear medicine doctor, sat down with me after the scans and went over my pictures with me--basically giving me the results of the scans right away. There was one area of uptake in my neck, as expected, and nothing else of note. Good news. It means the radioactive iodine is working on killing the thyroid cells that are left over from the surgery and the first treatment. Kind of like mopping up the floor after sweeping.
I feel a tremendous sense of relief! My gut is telling me there's a very good chance this is the last treatment I'll have to have for this cancer, and that's such a joyous feeling. Even though I don't have my NED badge yet (No Evidence of Disease), I feel strongly that it's coming my way someday soon. There's no "cure" for thyroid cancer, but we thyroid cancer patients hope to hear we're "NED" one day--and then we hope to hang onto the NED label for the rest of our long, wonderful, blessed lives.
I will have some follow-up testing in 4-6 months to see how successful the treatment was. I'll let you know what happens then.
Thank you all for your support and prayers and help and offers of help and for caring.
God is good!
Love,
Lynn
Saturday, June 13, 2009
Still Radioactive But OK to Drive Thru McDonald's
Today I'm OK to:
1. go through a drive-through as long as I don't spit or pee on the order taker/food hander-over-er or spit or pee on my hand before I give them the money and grab their hands and arms as they reach out to me and then force them to put their tainted hands and arms in their own mouths... see where I'm going with this?
2. walk by someone as long as I don't linger or sit 3 feet away from them for 3 hours...
3. sit on a couch 6 feet away from someone for a while, etc.
So I'm not sure what I'll/we'll wind up doing tomorrow. Saturday and Sunday should be interesting. We can spend time together as a family, but not completely. It’s a weird situation. Thanks for nothin’, thyroid cancer!
I could theoretically hug Jack loosely for a second on Sunday but can't give him a bear hug (with my neck close to his neck) for another few days. I'm having my scan on Wednesday (sorry if I already said this; I'm probably repeating myself), and after that, they'll see what lights up. I can't wait to find out because I have a theory that the "linear uptake" on the WBS I had in April was radioactive saliva coating my esophagus (I think I was so nervous and afraid to move and ruin the scan that I wasn't swallowing), and didn't truly represent thyca cells, which jibes with the lack of ultrasound findings of any tumor, mass, lesion, etc., when they tried to biopsy something. In other words, it won't surprise me if:
1. there's no uptake in my neck but maybe somewhere else; I'll sound paranoid and like a big fat hypochondriac when I commit this to paper, but on Monday I woke up in the middle of the night, and I swore I felt something happening in my right lung, the upper center of my chest and under my right ear. I had to take Advil for some weird pains.
2. there is uptake in my neck or neck region but it shows up somewhere other than the location of the previous uptake
3. there appears to be no uptake at all. It happens.
It's science, but it's not foolproof. This I've learned from spending hours and hours and hours reading about scans and Tg bloodwork and other thyca patients' experiences with these diagnostic tools.
Speaking of diagnostic tools, I AM ONE! And you can quote me on that. I've become the world's biggest thyroid cancer nerd.
Back to being sprung: It's a process of being sprung. After 14 days, I’m OK to do everything. That’s when life can return to normal.
I’ll write tomorrow to document how this family deals with the fact that I am partially poisonous.
Saturday, June 13, 2009
Well, when you’re partially poisonous, it pays to think of the glass as being half full—of poison, that is.
I just don’t feel right when I leave the bedroom. When Pommy and Jack are gone at school and work or somewhere else, I feel OK about being “OUT,” but otherwise, I feel weird and wrong about being in the other parts of the house. So I spent most of the day in the bedroom again today.
They did go to Boomer’s and Living Spaces for a while, and when they were out I did some laundry and spent a few minutes in the kitchen putting their dishes in the dishwasher, but other than that, I feel a sense of calm when I return to the radioactive area.
Mentally and emotionally, I sort of hit a wall today. By the time they returned from Boomer’s and Living Spaces, I was just so sick of being in this room and being near them but not being able to touch them that I was feeling very frustrated and well, man, like I was going crazy. It got a little “One Flew Over the Cuckoo’s Nest” in my mind tonight.
I went outside where they were playing basketball and I decided that if I took Taco for a walk and she stayed at the end of a 6-foot leash, that was safe, so I got Taco ready to go and then Jack said he wanted to come with us on his bike, so that was a nice little addition. We walked for a while; I tried to go a route that wouldn’t take us near any neighbors we know well enough to say more than “Hi” to. It was a nice walk except for the fact that Jack went through a puddle and fell off his bike and into the puddle and I couldn’t hug him.
I hated that.
When we got home, I returned to the bedroom and cried. But not for long, because the second I started crying, I realized that radioactive tears are just as much of a contaminant as radioactive saliva, mucous, pee and perspiration. Bodily fluids, one and all. So I dried my face and kept the tears confined to several pieces of toilet paper, which I flushed down the toilet. Then I washed my hands. Even crying needs to be carefully controlled when you’re radioactive.
I was also getting pretty nauseous by the time we returned from the short walk, and I felt wiped out in a way that I don’t think I’ve ever felt before. My body just feels so thoroughly weak. I felt out of breath and out of energy. I know I need to hang in there.
My prayer tonight is this: Dear Lord, give me the endurance and the strength to remain positive and upbeat until this is over and I can hug and kiss my family again and have Taco on my lap for hours on end and pet Brandy’s big, beautiful, honey-colored head. Give me the patience to know and accept the fact that it’s going to take time to regain my strength. That it just doesn’t happen overnight. Amen.
1. go through a drive-through as long as I don't spit or pee on the order taker/food hander-over-er or spit or pee on my hand before I give them the money and grab their hands and arms as they reach out to me and then force them to put their tainted hands and arms in their own mouths... see where I'm going with this?
2. walk by someone as long as I don't linger or sit 3 feet away from them for 3 hours...
3. sit on a couch 6 feet away from someone for a while, etc.
So I'm not sure what I'll/we'll wind up doing tomorrow. Saturday and Sunday should be interesting. We can spend time together as a family, but not completely. It’s a weird situation. Thanks for nothin’, thyroid cancer!
I could theoretically hug Jack loosely for a second on Sunday but can't give him a bear hug (with my neck close to his neck) for another few days. I'm having my scan on Wednesday (sorry if I already said this; I'm probably repeating myself), and after that, they'll see what lights up. I can't wait to find out because I have a theory that the "linear uptake" on the WBS I had in April was radioactive saliva coating my esophagus (I think I was so nervous and afraid to move and ruin the scan that I wasn't swallowing), and didn't truly represent thyca cells, which jibes with the lack of ultrasound findings of any tumor, mass, lesion, etc., when they tried to biopsy something. In other words, it won't surprise me if:
1. there's no uptake in my neck but maybe somewhere else; I'll sound paranoid and like a big fat hypochondriac when I commit this to paper, but on Monday I woke up in the middle of the night, and I swore I felt something happening in my right lung, the upper center of my chest and under my right ear. I had to take Advil for some weird pains.
2. there is uptake in my neck or neck region but it shows up somewhere other than the location of the previous uptake
3. there appears to be no uptake at all. It happens.
It's science, but it's not foolproof. This I've learned from spending hours and hours and hours reading about scans and Tg bloodwork and other thyca patients' experiences with these diagnostic tools.
Speaking of diagnostic tools, I AM ONE! And you can quote me on that. I've become the world's biggest thyroid cancer nerd.
Back to being sprung: It's a process of being sprung. After 14 days, I’m OK to do everything. That’s when life can return to normal.
I’ll write tomorrow to document how this family deals with the fact that I am partially poisonous.
Saturday, June 13, 2009
Well, when you’re partially poisonous, it pays to think of the glass as being half full—of poison, that is.
I just don’t feel right when I leave the bedroom. When Pommy and Jack are gone at school and work or somewhere else, I feel OK about being “OUT,” but otherwise, I feel weird and wrong about being in the other parts of the house. So I spent most of the day in the bedroom again today.
They did go to Boomer’s and Living Spaces for a while, and when they were out I did some laundry and spent a few minutes in the kitchen putting their dishes in the dishwasher, but other than that, I feel a sense of calm when I return to the radioactive area.
Mentally and emotionally, I sort of hit a wall today. By the time they returned from Boomer’s and Living Spaces, I was just so sick of being in this room and being near them but not being able to touch them that I was feeling very frustrated and well, man, like I was going crazy. It got a little “One Flew Over the Cuckoo’s Nest” in my mind tonight.
I went outside where they were playing basketball and I decided that if I took Taco for a walk and she stayed at the end of a 6-foot leash, that was safe, so I got Taco ready to go and then Jack said he wanted to come with us on his bike, so that was a nice little addition. We walked for a while; I tried to go a route that wouldn’t take us near any neighbors we know well enough to say more than “Hi” to. It was a nice walk except for the fact that Jack went through a puddle and fell off his bike and into the puddle and I couldn’t hug him.
I hated that.
When we got home, I returned to the bedroom and cried. But not for long, because the second I started crying, I realized that radioactive tears are just as much of a contaminant as radioactive saliva, mucous, pee and perspiration. Bodily fluids, one and all. So I dried my face and kept the tears confined to several pieces of toilet paper, which I flushed down the toilet. Then I washed my hands. Even crying needs to be carefully controlled when you’re radioactive.
I was also getting pretty nauseous by the time we returned from the short walk, and I felt wiped out in a way that I don’t think I’ve ever felt before. My body just feels so thoroughly weak. I felt out of breath and out of energy. I know I need to hang in there.
My prayer tonight is this: Dear Lord, give me the endurance and the strength to remain positive and upbeat until this is over and I can hug and kiss my family again and have Taco on my lap for hours on end and pet Brandy’s big, beautiful, honey-colored head. Give me the patience to know and accept the fact that it’s going to take time to regain my strength. That it just doesn’t happen overnight. Amen.
Friday, June 12, 2009
Buzzing From The Radioactive Iodine
It’s 12:46 am. I woke up at 12:15 am with this low electrical humming or buzzing sound in my ears, a headache, and the same type of buzzing feeling that was radiating (no pun intended) up the back of my neck slightly more on the right side and into the base of my skull, and the pain radiating down through the right side of my neck and up through the area directly behind my right ear. Also, something under my left collarbone hurts. I just took two Advil.
I wonder if the radioactive iodine is working on killing something. I’ve been watching too much “House” this week. Cameron, one of the characters, lost her first husband to thyroid cancer that had metastasized to his brain. So of course this is popping into my head now, along with the weird buzzing feeling and the pain.
Still, some of my first waking thoughts were, “I’m so glad I didn’t lose my sense of taste” and “Thank you, God, for letting me taste the double fudge brownie ice cream and the delicious and very flavorful Subway Italian sandwich I ate last night.”
I think I’ve said this before, but I’ll say it again. It’s the little things.
I wonder if the radioactive iodine is working on killing something. I’ve been watching too much “House” this week. Cameron, one of the characters, lost her first husband to thyroid cancer that had metastasized to his brain. So of course this is popping into my head now, along with the weird buzzing feeling and the pain.
Still, some of my first waking thoughts were, “I’m so glad I didn’t lose my sense of taste” and “Thank you, God, for letting me taste the double fudge brownie ice cream and the delicious and very flavorful Subway Italian sandwich I ate last night.”
I think I’ve said this before, but I’ll say it again. It’s the little things.
Thursday, June 11, 2009
An Odd Shopping List
A list of things I asked Pommy to bring home for me today:
• angel hair pasta
• Diet 7-Up
• bagels
• English muffins
• crowbar for getting out of prison
• carton of cigarettes to trade for shank while I'm in here
• weightlifting gloves and bigger wife beater T-shirts. I'm really bulking up.
• a cake with a file baked inside
I felt very nauseous and extremely tired yesterday and a little less nauseous this morning and a little less tired after a 2-hour nap this afternoon. On Monday and Tuesday I felt so fantastic, it was hard to imagine that I would go from feeling so good to so bad so quickly. But I guess being off my Synthroid for so long (25 days) finally caught up with me, and as for the nausea, I had to remind myself that I felt exactly the same way last time I had this treatment. I re-started my Synthroid this morning. So begins my journey back from hypothyroidism. (At first I typed hypoothyroidism. Some typos are awesome.)
There is good news, though. I still have my sense of taste! As of last night at about 8 pm, I’m off the low-iodine diet, and I could taste the 2 hard-boiled eggs and bagel with cream cheese I ate last night, and I’ve been able to taste everything I’ve eaten today, which has been:
• 3 scrambled eggs
• half a blueberry bagel with butter
• fruit punch juice box (yes, I’m 7 years old)
• cheddar cheese with Club crackers
• an It’s-It, the best ice cream confection in the universe
• half of a Subway “Italian” sandwich and four nacho cheese Doritos
• bowl of double fudge brownie ice cream
Now here’s a total nonsequitir and gross change of subject after listing foods I ate, but…
Brendan dissected a pig in honors bio on Monday, right around the time I was going into the Dosing Room at Hoag. Here’s our exchange about it via e-mail and text messages:
Me:
Brendan!
I'm so sorry I forgot to ask about your dissection on Monday. I was so caught up in my radioactive state that it slipped my mind. How was it? I crave details--where did you cut him open? What organs or tissues or muscles did you see? As you know, I'm fascinated by this stuff. Can't wait to hear the story.
:--)
Love,
Mom
Brendan:
I saw a lot!
Stomach, liver, spleen, lungs, heart, and even the thyroid!
We have a test on it tomorrow where he's gonna lay out a bunch of dissected pigs and ask us what each part of the pig is.
Should be exciting!
Me:
AWESOME. You probably didn't know this, but there's an alternative medication to the Synthroid I take to replace my thyroid. It's called Armour, and it's made of dessicated pigs' thyroid. I kid you not.
So cool you saw Thor's thyroid on Monday. What time of day was it? (can't remember which period you have bio)
Don't get in trouble for texting during class. Answer when you have more time and won't risk getting in trouble.
Love,
Mom
Thor And His Thyroid
A Poem by Lynn Pomije
Thor, O Thor
What a beautiful beast
Not quite a pile of bacon
And certainly not a feast
We worship your beauty
Your liver and spleen
Your stomach so bloated
Yet your legs so lean
Your lungs are so purdy
Your heart stout and brave
Your thyroid is dazzling
[I know, I'm depraved]
Thor, O Thor
With a snout pink and cute
How did you get here?
Or is the point now quite moot?
Whether suffocation or gunshot
Or a mouthful of apple
We thank you for the lesson
Now hand me the scalpel!
Brendan:
That was so funny. I'm actually in honors bio right now.
You must be really bored if u have the time to type up that whole poem
Me: Yeah, it's pretty boring being in isolation. I'm watching “House” right now--one I've probably seen 3 times already, but you gotta do what you gotta do, right? Enjoy bio!!!!! I'm off the low-iodine diet. YES! But I'm nauseous. BOO!
Brendan:
Booooo!! I'm going out to dinner. Hope your feeling better (please excuse the mis-spelling of you're)
Me: I love you, Brendan.
• angel hair pasta
• Diet 7-Up
• bagels
• English muffins
• crowbar for getting out of prison
• carton of cigarettes to trade for shank while I'm in here
• weightlifting gloves and bigger wife beater T-shirts. I'm really bulking up.
• a cake with a file baked inside
I felt very nauseous and extremely tired yesterday and a little less nauseous this morning and a little less tired after a 2-hour nap this afternoon. On Monday and Tuesday I felt so fantastic, it was hard to imagine that I would go from feeling so good to so bad so quickly. But I guess being off my Synthroid for so long (25 days) finally caught up with me, and as for the nausea, I had to remind myself that I felt exactly the same way last time I had this treatment. I re-started my Synthroid this morning. So begins my journey back from hypothyroidism. (At first I typed hypoothyroidism. Some typos are awesome.)
There is good news, though. I still have my sense of taste! As of last night at about 8 pm, I’m off the low-iodine diet, and I could taste the 2 hard-boiled eggs and bagel with cream cheese I ate last night, and I’ve been able to taste everything I’ve eaten today, which has been:
• 3 scrambled eggs
• half a blueberry bagel with butter
• fruit punch juice box (yes, I’m 7 years old)
• cheddar cheese with Club crackers
• an It’s-It, the best ice cream confection in the universe
• half of a Subway “Italian” sandwich and four nacho cheese Doritos
• bowl of double fudge brownie ice cream
Now here’s a total nonsequitir and gross change of subject after listing foods I ate, but…
Brendan dissected a pig in honors bio on Monday, right around the time I was going into the Dosing Room at Hoag. Here’s our exchange about it via e-mail and text messages:
Me:
Brendan!
I'm so sorry I forgot to ask about your dissection on Monday. I was so caught up in my radioactive state that it slipped my mind. How was it? I crave details--where did you cut him open? What organs or tissues or muscles did you see? As you know, I'm fascinated by this stuff. Can't wait to hear the story.
:--)
Love,
Mom
Brendan:
I saw a lot!
Stomach, liver, spleen, lungs, heart, and even the thyroid!
We have a test on it tomorrow where he's gonna lay out a bunch of dissected pigs and ask us what each part of the pig is.
Should be exciting!
Me:
AWESOME. You probably didn't know this, but there's an alternative medication to the Synthroid I take to replace my thyroid. It's called Armour, and it's made of dessicated pigs' thyroid. I kid you not.
So cool you saw Thor's thyroid on Monday. What time of day was it? (can't remember which period you have bio)
Don't get in trouble for texting during class. Answer when you have more time and won't risk getting in trouble.
Love,
Mom
Thor And His Thyroid
A Poem by Lynn Pomije
Thor, O Thor
What a beautiful beast
Not quite a pile of bacon
And certainly not a feast
We worship your beauty
Your liver and spleen
Your stomach so bloated
Yet your legs so lean
Your lungs are so purdy
Your heart stout and brave
Your thyroid is dazzling
[I know, I'm depraved]
Thor, O Thor
With a snout pink and cute
How did you get here?
Or is the point now quite moot?
Whether suffocation or gunshot
Or a mouthful of apple
We thank you for the lesson
Now hand me the scalpel!
Brendan:
That was so funny. I'm actually in honors bio right now.
You must be really bored if u have the time to type up that whole poem
Me: Yeah, it's pretty boring being in isolation. I'm watching “House” right now--one I've probably seen 3 times already, but you gotta do what you gotta do, right? Enjoy bio!!!!! I'm off the low-iodine diet. YES! But I'm nauseous. BOO!
Brendan:
Booooo!! I'm going out to dinner. Hope your feeling better (please excuse the mis-spelling of you're)
Me: I love you, Brendan.
Wednesday, June 10, 2009
Aunt Judy's Support
From: Judy
Subject: You are...
To: "Pomije Lynn"
Date: Wednesday, June 10, 2009, 3:47 PM
I tried emailing you at the beginning of the week but my address book wouldn't open.
So, how are you doing? Is it similar to the last procedure? Easier or harder to live with?
How is the rest of the family coping? Are you keeping busy?...can you use the computer?
When will your life be back to what it was?
I've been thinking about you and hope you are getting by, looking forward to a better life with less worry about your health and future.
xxoo
baj
From: Lynn Pomije
Sent: Jun 10, 2009 4:51 PM
To: Judy
Subject: Re: You are...
Hi, Judy.
First of all, what is baj? I'm used to paj and am not sure who baj is...perhaps beautiful aunt judy? brilliant aunt judy? boxing aficionado judy?
The treatment is much like the last one, with the notable exception that I got to come straight home after taking the dose instead of being admitted to prison...eh, the hospital... afterwards. It's SOOOOO much better to be home and in isolation than it was in the hospital. Since I'd never done it before, last time I was glad to be in the hospital at my most radioactive (even though by the time they discharged me I was going nuts, pacing the hospital room and probably muttering to myself), but now that I know how much more comfortable I am at home, if I ever have to do this again (God willing, I won't), I would want to do it outpatient.
Yes, I can use the computer. Pommy has set me up with a laptop borrowed from work that we can keep here for as long as we want.
Rest of the family seems to be doing fine. Brendan is with his dad all week and weekend and I won't even see him til I'm back to being nonradioactive, so it has no effect on him. Jack and Pommy seem to be doing fine. Friends and my mom and dad have made sure they're set for meals and my mom is picking Jack up 3/5 days this week and keeping him til dinnertime when Pommy picks him up, and a good friend of mine from Jack's school is picking him up the other 2 days and keeping him til dinnertime when Pommy picks him up.
As Pommy said today, this week is more "weird" than "hard." I have to agree. You know how sometimes life feels surreal, and it's uncomfortable because it's surreal, and you crave normalcy? That's how it is.
I felt fantastic all the way up to and including Monday. Plenty of energy and spirits high. Tuesday a little more tired (24 days off Synthroid catching up with me) and today really tired and a little nauseous in the morning, but a little less nauseous this afternoon after a 2.5-hour nap. Wow, I'm sure boring you with a lot of details. Hope you don't mind.
I'm safe to be back among the public next Monday, still taking precautions with my saliva (sounds weird, but that's what I have to do)--in other words, no sharing drinks or mouth kissing (eek! cooties!) and taking precautions with other bodily fluids (not peeing on anybody would be included in this, I suppose). After 14 days everything returns to normal. Yea! I get to go back to peeing on people like Taco does when she's excited to see them!
I realize I'm gross.
How are you doing, Judy? I know you are going on some gamble-a-thon with my mom and her pals next week. But how are you doing? I've also been meaning to ask you how Dale's nephew is doing with his diagnosis and what's been going on with that. Let me know.
Thanks for the e-mail, Judy.
Love you,
rnl
(radioactive niece lynn)
Re: You are...
Thursday, June 11, 2009 5:49 PM
From: "Judy"
To: "Lynn Pomije"
First of all, baj = best aunt judy.
So glad you weren't in the hospital -- bad things can happen there -- just ask Dale!
Weird is O.K., we've been there, done that. And it is only temporary. Hopefully the side affects will disapate and you will get more normal.
Mike's pathology report says no cancer in the lymph nodes and even though he is in pain, he's recovering with hope that removing the prostate will be enough.
I am trying hard and keeping reasonably busy but am frustrated that I do not feel any better. I have a hard time accepting the finality of losing Dale.
I am going gambling with your mom and we will have a good time -- she tries hard to make me feel better. Problem is, no one can bring Dale (my life) back.
I enjoy hearing the details of your situation and life.
Thanks for your response and feel free to feed me all aspects of your life!
Love you,
paj and baj
Subject: You are...
To: "Pomije Lynn"
Date: Wednesday, June 10, 2009, 3:47 PM
I tried emailing you at the beginning of the week but my address book wouldn't open.
So, how are you doing? Is it similar to the last procedure? Easier or harder to live with?
How is the rest of the family coping? Are you keeping busy?...can you use the computer?
When will your life be back to what it was?
I've been thinking about you and hope you are getting by, looking forward to a better life with less worry about your health and future.
xxoo
baj
From: Lynn Pomije
Sent: Jun 10, 2009 4:51 PM
To: Judy
Subject: Re: You are...
Hi, Judy.
First of all, what is baj? I'm used to paj and am not sure who baj is...perhaps beautiful aunt judy? brilliant aunt judy? boxing aficionado judy?
The treatment is much like the last one, with the notable exception that I got to come straight home after taking the dose instead of being admitted to prison...eh, the hospital... afterwards. It's SOOOOO much better to be home and in isolation than it was in the hospital. Since I'd never done it before, last time I was glad to be in the hospital at my most radioactive (even though by the time they discharged me I was going nuts, pacing the hospital room and probably muttering to myself), but now that I know how much more comfortable I am at home, if I ever have to do this again (God willing, I won't), I would want to do it outpatient.
Yes, I can use the computer. Pommy has set me up with a laptop borrowed from work that we can keep here for as long as we want.
Rest of the family seems to be doing fine. Brendan is with his dad all week and weekend and I won't even see him til I'm back to being nonradioactive, so it has no effect on him. Jack and Pommy seem to be doing fine. Friends and my mom and dad have made sure they're set for meals and my mom is picking Jack up 3/5 days this week and keeping him til dinnertime when Pommy picks him up, and a good friend of mine from Jack's school is picking him up the other 2 days and keeping him til dinnertime when Pommy picks him up.
As Pommy said today, this week is more "weird" than "hard." I have to agree. You know how sometimes life feels surreal, and it's uncomfortable because it's surreal, and you crave normalcy? That's how it is.
I felt fantastic all the way up to and including Monday. Plenty of energy and spirits high. Tuesday a little more tired (24 days off Synthroid catching up with me) and today really tired and a little nauseous in the morning, but a little less nauseous this afternoon after a 2.5-hour nap. Wow, I'm sure boring you with a lot of details. Hope you don't mind.
I'm safe to be back among the public next Monday, still taking precautions with my saliva (sounds weird, but that's what I have to do)--in other words, no sharing drinks or mouth kissing (eek! cooties!) and taking precautions with other bodily fluids (not peeing on anybody would be included in this, I suppose). After 14 days everything returns to normal. Yea! I get to go back to peeing on people like Taco does when she's excited to see them!
I realize I'm gross.
How are you doing, Judy? I know you are going on some gamble-a-thon with my mom and her pals next week. But how are you doing? I've also been meaning to ask you how Dale's nephew is doing with his diagnosis and what's been going on with that. Let me know.
Thanks for the e-mail, Judy.
Love you,
rnl
(radioactive niece lynn)
Re: You are...
Thursday, June 11, 2009 5:49 PM
From: "Judy"
To: "Lynn Pomije"
First of all, baj = best aunt judy.
So glad you weren't in the hospital -- bad things can happen there -- just ask Dale!
Weird is O.K., we've been there, done that. And it is only temporary. Hopefully the side affects will disapate and you will get more normal.
Mike's pathology report says no cancer in the lymph nodes and even though he is in pain, he's recovering with hope that removing the prostate will be enough.
I am trying hard and keeping reasonably busy but am frustrated that I do not feel any better. I have a hard time accepting the finality of losing Dale.
I am going gambling with your mom and we will have a good time -- she tries hard to make me feel better. Problem is, no one can bring Dale (my life) back.
I enjoy hearing the details of your situation and life.
Thanks for your response and feel free to feed me all aspects of your life!
Love you,
paj and baj
Tuesday, June 9, 2009
What I Want My Children To Learn From Me
My mother-in-law said in an e-mail to me this morning, “You’re one courageous lady!” That’s sweet, and I appreciate the sentiment, but I’m no hero. It’s easy to keep your sense of humor when you feel perfectly fine, as I do.
I think every day about people with other cancers who have had to go through radiation and chemotherapy and how sick those treatments can make you (do make you—I don’t think it’s a matter of “if”; I think it’s a matter of how sick they make you), and I think every day about the parents whose children are fighting battles with leukemia and other awful diseases (and sometimes losing those battles), and I thank God every day for giving me this cancer, for giving it to me instead of my children, for entrusting me with this challenge. I believe that when God gave me this challenge, He was telling me that He believes in me. He has armed me with the gift of faith (which is available to me whether I choose to accept and embrace it or not), surrounded me with loving, supportive family and equally loving and supportive friends, but most importantly, He has shown me that the nearer I draw to Him, the nearer He draws to me. It’s a win-win in so many ways.
On the thyroid cancer support group listserv on which I frequently read and post, there has been much discussion (and a good bit of outrage) about the unfortunate phrase “the good cancer,” which is so often applied to thyroid cancer by (usually) well-meaning surgeons, endocrinologists and ENTs when delivering the diagnosis to their patients. (As you may recall, my ENT, before there even was a diagnosis in my case, said that if God called him up [he held up a fake phone] and told him He was going to give his mother cancer, and God gave the ENT the chance to choose which one God gave her, he would pick thyroid cancer. I’ve gone back and forth between feeling reassured by this to being mad he said it back around to being reassured by it. I have ended on being reassured, because after my year and a half with this disease, I would pick thyroid cancer over any other cancer if God forced me to choose which one He would give my mother. I’m sorry if that sounds harsh to some, but luckily, our merciful God would never put us in that position. He makes the choices for us on those matters. Why? Because we are ill-equipped to make those choices ourselves.)
There is no such thing as a good cancer.
But I have decided that there may be such a thing as a good cancer treatment. I can’t ignore the fact that the treatment for the type of thyroid cancer I have, with its radioactive magic bullet that knows just where to go once you’ve swallowed the capsule—knows exactly which cells to seek out and destroy once it’s ingested and, in fact, isn’t interested in any other cells—is pretty easy compared to what I’ve heard about people’s miserable experiences with radiation, chemotherapy and other treatments for other diseases that I’m not even addressing here out of my own ignorance, lack of understanding, and lack of life experience.
So I thank God for giving me thyroid cancer, and I praise His name because He is good, He is Holy, He is worthy, He is Wonderful Counselor, King of Kings, Prince of Peace, and He loves me. Little old me!
Thinking of adversity as a gift is not an original thought on my part. I was tangibly introduced to the idea in the book of Philippians, which I read and studied in a women’s bible study at Calvary Chapel, Costa Mesa, in 2003 and 2004, shortly after renewing my faith in God and becoming a practicing Christian. Philippians is also known as the epistle of joy. Jesus’ disciple Peter wrote the praise-filled, grateful letter to the residents of Philippi while he was in prison. When I read Philippians for the first time (it’s short), I was impressed by Paul because he had this awesome knack for seeing (and choosing to focus on) the opportunity his setbacks provided for sharing the gospel. The source of his joy was in being able to serve God during trials, and because of these trials. What a fresh approach to hardship!
This appealed to me because my default personality, or my nature when I’m at my worst, has been to focus on the negative and whine and complain through adversity, or, when I’m at my very best, to endure hardship with some stoicism. In Philippians, Paul does something so revolutionary, so courageous, and so opposite of what I’ve always thought is human nature (or at least my supremely flawed human nature), that I was fascinated and wanted to learn more. It seemed downright weird that Paul would be in prison praising God, who, if He allows all things, presumably was ultimately responsible for landing him there to begin with.
I know I quoted Philippians 1:29 before, but I think it bears repeating. I have lived most of my life being angry or hurt about the things I have suffered, but from this day forward, I want to look at challenges the way Paul did. Also, and profoundly more important to me, I want my kids to see the trials God gives them as opportunities and assurances that God knows they can handle them.
“For to you it has been granted on behalf of Christ, not only to believe in Him, but also to suffer for his sake, having the same conflict which you saw in me and now hear is in me.”
Philippians 1:29-30, New King James version
“But what things were gain to me, these I have counted loss for Christ. Yet indeed I also count all things loss for the excellence of the knowledge of Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them as rubbish, that I may gain Christ and be found in Him, not having my own righteousness, which is from the law, but that which is through faith in Christ, the righteousness which is from God by faith; that I may know Him, and the power of His resurrection, and the fellowship of his sufferings, being conformed to His death, if, by any means, I may attain to the resurrection from the dead.”
--Philippians 3:7-11, New King James version
idea of trials being an opportunity to get closer to god, show his love to others, grow yur testimony share the word—
My Dream
If I had a bucket list, writing a book would be on it. It was my dream when I dared to dream, which was not often. I never thought it would become a reality. I’ve always wanted to write a book, BUT…
1. I have never known what to write about.
2. I’m better at writing things in the first person rather than unbiased, objective third person, and with a few notable exceptions (Catcher in the Rye being one), first-person literature doesn’t bowl them over.
3. I’ve always been stuck inside my own head with my own thoughts, loving to release them on paper but not feeling like I had anything of value to say that anyone would get any benefit from.
never been much of an evangelist, and He wants us to share his word.
Quote a verse saying “Go out and share mt word with the nations”
Even me, God? Yes, even you. Even though I’m uncomfortable doing it? Yes, because you’re uncomfortable doing it.
Sunday inchurch reading about Bible verse Gifts use them use what God gave you we all have something that is uniquelyt our own and we need to use it
So when this whole thyroid cancer thing hit me, it occurred to me that maybe God wanted me to write about Him and my cancer. If this is the case, and I’ve gotten it right, my thyroid cancer is His ultimate gift to me—a subject matter for me to explore and embrace in a format and voice I can write in, a realization of a lifelong dream, and an attempt at spreading His Word. Win-win-win-win.
I have learned a lot.
What I want you to know: Know that God is good. Know that God loves you and doesn’t want you to suffer anymore. Know that He can release you from your shackles, personality defects, old hurts, anger, bitterness, past, weaknesses, demons, dependence on the world for gratification, worship of money, power, or so-called prestige.
Know that he loves endlessly, listens faithfully and lives eternally.
Amen.
I think every day about people with other cancers who have had to go through radiation and chemotherapy and how sick those treatments can make you (do make you—I don’t think it’s a matter of “if”; I think it’s a matter of how sick they make you), and I think every day about the parents whose children are fighting battles with leukemia and other awful diseases (and sometimes losing those battles), and I thank God every day for giving me this cancer, for giving it to me instead of my children, for entrusting me with this challenge. I believe that when God gave me this challenge, He was telling me that He believes in me. He has armed me with the gift of faith (which is available to me whether I choose to accept and embrace it or not), surrounded me with loving, supportive family and equally loving and supportive friends, but most importantly, He has shown me that the nearer I draw to Him, the nearer He draws to me. It’s a win-win in so many ways.
On the thyroid cancer support group listserv on which I frequently read and post, there has been much discussion (and a good bit of outrage) about the unfortunate phrase “the good cancer,” which is so often applied to thyroid cancer by (usually) well-meaning surgeons, endocrinologists and ENTs when delivering the diagnosis to their patients. (As you may recall, my ENT, before there even was a diagnosis in my case, said that if God called him up [he held up a fake phone] and told him He was going to give his mother cancer, and God gave the ENT the chance to choose which one God gave her, he would pick thyroid cancer. I’ve gone back and forth between feeling reassured by this to being mad he said it back around to being reassured by it. I have ended on being reassured, because after my year and a half with this disease, I would pick thyroid cancer over any other cancer if God forced me to choose which one He would give my mother. I’m sorry if that sounds harsh to some, but luckily, our merciful God would never put us in that position. He makes the choices for us on those matters. Why? Because we are ill-equipped to make those choices ourselves.)
There is no such thing as a good cancer.
But I have decided that there may be such a thing as a good cancer treatment. I can’t ignore the fact that the treatment for the type of thyroid cancer I have, with its radioactive magic bullet that knows just where to go once you’ve swallowed the capsule—knows exactly which cells to seek out and destroy once it’s ingested and, in fact, isn’t interested in any other cells—is pretty easy compared to what I’ve heard about people’s miserable experiences with radiation, chemotherapy and other treatments for other diseases that I’m not even addressing here out of my own ignorance, lack of understanding, and lack of life experience.
So I thank God for giving me thyroid cancer, and I praise His name because He is good, He is Holy, He is worthy, He is Wonderful Counselor, King of Kings, Prince of Peace, and He loves me. Little old me!
Thinking of adversity as a gift is not an original thought on my part. I was tangibly introduced to the idea in the book of Philippians, which I read and studied in a women’s bible study at Calvary Chapel, Costa Mesa, in 2003 and 2004, shortly after renewing my faith in God and becoming a practicing Christian. Philippians is also known as the epistle of joy. Jesus’ disciple Peter wrote the praise-filled, grateful letter to the residents of Philippi while he was in prison. When I read Philippians for the first time (it’s short), I was impressed by Paul because he had this awesome knack for seeing (and choosing to focus on) the opportunity his setbacks provided for sharing the gospel. The source of his joy was in being able to serve God during trials, and because of these trials. What a fresh approach to hardship!
This appealed to me because my default personality, or my nature when I’m at my worst, has been to focus on the negative and whine and complain through adversity, or, when I’m at my very best, to endure hardship with some stoicism. In Philippians, Paul does something so revolutionary, so courageous, and so opposite of what I’ve always thought is human nature (or at least my supremely flawed human nature), that I was fascinated and wanted to learn more. It seemed downright weird that Paul would be in prison praising God, who, if He allows all things, presumably was ultimately responsible for landing him there to begin with.
I know I quoted Philippians 1:29 before, but I think it bears repeating. I have lived most of my life being angry or hurt about the things I have suffered, but from this day forward, I want to look at challenges the way Paul did. Also, and profoundly more important to me, I want my kids to see the trials God gives them as opportunities and assurances that God knows they can handle them.
“For to you it has been granted on behalf of Christ, not only to believe in Him, but also to suffer for his sake, having the same conflict which you saw in me and now hear is in me.”
Philippians 1:29-30, New King James version
“But what things were gain to me, these I have counted loss for Christ. Yet indeed I also count all things loss for the excellence of the knowledge of Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them as rubbish, that I may gain Christ and be found in Him, not having my own righteousness, which is from the law, but that which is through faith in Christ, the righteousness which is from God by faith; that I may know Him, and the power of His resurrection, and the fellowship of his sufferings, being conformed to His death, if, by any means, I may attain to the resurrection from the dead.”
--Philippians 3:7-11, New King James version
idea of trials being an opportunity to get closer to god, show his love to others, grow yur testimony share the word—
My Dream
If I had a bucket list, writing a book would be on it. It was my dream when I dared to dream, which was not often. I never thought it would become a reality. I’ve always wanted to write a book, BUT…
1. I have never known what to write about.
2. I’m better at writing things in the first person rather than unbiased, objective third person, and with a few notable exceptions (Catcher in the Rye being one), first-person literature doesn’t bowl them over.
3. I’ve always been stuck inside my own head with my own thoughts, loving to release them on paper but not feeling like I had anything of value to say that anyone would get any benefit from.
never been much of an evangelist, and He wants us to share his word.
Quote a verse saying “Go out and share mt word with the nations”
Even me, God? Yes, even you. Even though I’m uncomfortable doing it? Yes, because you’re uncomfortable doing it.
Sunday inchurch reading about Bible verse Gifts use them use what God gave you we all have something that is uniquelyt our own and we need to use it
So when this whole thyroid cancer thing hit me, it occurred to me that maybe God wanted me to write about Him and my cancer. If this is the case, and I’ve gotten it right, my thyroid cancer is His ultimate gift to me—a subject matter for me to explore and embrace in a format and voice I can write in, a realization of a lifelong dream, and an attempt at spreading His Word. Win-win-win-win.
I have learned a lot.
What I want you to know: Know that God is good. Know that God loves you and doesn’t want you to suffer anymore. Know that He can release you from your shackles, personality defects, old hurts, anger, bitterness, past, weaknesses, demons, dependence on the world for gratification, worship of money, power, or so-called prestige.
Know that he loves endlessly, listens faithfully and lives eternally.
Amen.
Monday, June 8, 2009
I'm Radioactive Today
Just had my first post-dose meal--some leftover low-iodine-prepared steak and a baked potato* with Fleischmann's salt-free "margarine." Yum, believe it or not! I'm hoping not to lose my sense of taste this time like I did last time. I think it set in about two days after the dose last time, so stay tuned.
*When I first typed potato, I typed "pootato," which made me smile before I edited it. Perhaps I should not have changed it. It might have brought a smile to your face, as well. I am very bad at typing on this laptop because I rarely use it. I bet by the end of the week, I'll be ready for the secretarial pool, though.
I will try as best I can to describe the RAI dose-taking adventure. I have all the time in the world right now, and the rest of society is not in the same boat. All this blathering I'm about to do is to satisfy my own narcissistic desire to remember the details of this odd and fascinating experience and to read about it later...after old age and senility completely set in.
First of all, I love that I was on my bluetooth talking to my friend Diane on my cell phone right before entering Hoag's electrical doors, because I got to be so "current" and so "now" and appear (as if anyone had the time or the inclination to notice little old me outside Hoag) so "mover-and-shaker" or at least "busy" or at the very least "on the phone." After we hung up, I went in, registered, and went to the nuclear medicine department. Those in the know informally call it Nuc Med (pronounced like Nuke Med, of course), and for some reason, I really like it when people use that verbal abbreviation in a medical setting.
So I got to Nuc Med, checked in there, waited a little while til they called me (sat in the waiting room with my head resting against the wall and my eyes closed, concentrating on breathing in and out and praying that everything would go smoothly...and just drinking in the experience and trying to rid myself of any nervous energy, which worked). A gal came in, called out "Laura" and something that sounded like "Bomshay," and when nobody responded, she turned around to leave, and right when the door was about to shut after her, I squeaked out, "The last name you said sounded a little bit like mine, but my first name is Lynn. Are you looking for Lynn Pomije?" and she got all embarrassed and apologized a few times, saying she'd forgotten the name as she came down the hall to get me. She took me back to one of their "Dosing Rooms," which is the first cool thing about Nuc Med.
The room has a bright yellow biohazard sign on the outside of the door (first cool thing about dosing rooms), and you can't just waltz in there. There's a keypad outside the door where they have to enter some secret, nuclear code to enter (second cool thing about dosing rooms). The keypad-entry system is cool from the inside because when they leave you alone (and they invariably leave you alone in the dosing room for one reason or another), they have to punch in the code to get back in, and you can hear this from the inside, so when you’re doing something like picking your nose, or taking a picture with your cell phone of the RAI dose in its tungsten cylinder, the delay gives you just enough time to stop picking your nose or slap shut your cell phone and look nonchalant when they reenter (third cool thing about dosing rooms). [T-shirt idea: I (HEART) DOSING ROOMS]. FYI, I did not pick my nose (this time, wink wink), but I did take a photo of the tungsten cylinder and its cute little burgundy harness/purse/carrying thingy.
The gal entered a code, took me into the room, gave me a few forms to fill out* (see Nuc Med footnote below) and left to go find the Nuclear Physicist (the second cool thing about Nuc Med), who for reasons of protocol needed to give me a consultation before “dosing me.” There’s a lot of protocol involved in nuclear medicine, and I’ve learned to appreciate and respect it and not get impatient. The Nuclear Physicist arrived, punched in the code and entered, and although the gal had called him “KJ” when she went to locate him, he looked more like a nuclear physicist and less like a basketball buddy than his name seemed to imply. He was an intelligent, thoughtful light-skinned Middle Eastern man with professorial glasses. He gave me the run-down on precautions (sleep in a separate bed for at least 5 days, yada yada yada) and then he left to go find the Nuclear Medicine Physician, Dr. Taketa, who would administer the dose.
Dr. Taketa came in, gave me a few last-minute precautionary suggestions, and then, when another young man, a nuclear medicine technician, had entered the secret code and joined us, the tech unscrewed the tungsten cylinder, opened the pill bottle inside, and handed it to me with a cup of water, and boom—I tossed it into the back of my throat and took a couple drinks of water—and it was gone.
The third cool thing about Nuc Med is when they bring in the meter stick (I thought it was charming that they called it a meter stick—I woulda called it a yardstick) and the Geiger counter and measure the millirems per hour of radioactivity that are emitting from your throat/neck area after you swallow the dose. My measurement was 33 mrem/hr at 1 meter, which they said was exactly what they expected it to be. Then they booted me and told me not to linger too long in the lobby.
I drove home, tried to take a nap, felt convinced I felt the RAI absorbing into my left maxillary sinus, which has been MRI-proven to have mucoperiosteal thickening, and where I suffer all my sinus infections, but other than that, I feel delightfully, painfully, absurdly the same.
I watched a TiVO’ed episode of “House” and dozed off, but just for a few minutes, tried to watch “Oprah” but got bored, and now I’m writing this, which is far more exciting than any activity I can think of doing.
Oh wait—excitement beckons: A couple hooligans just came to the front door, heard me trip over the doggie gate inside the house and yell at Taco to stop barking, and then, when I didn’t answer the door, went right by my open master bedroom window commenting loudly about how rude people are not to answer their doors. I thought briefly about telling them I was radioactive, but I didn’t want to get into a tangle with them, so I let it slide, Clyde.
Then an old Santa-looking man (except with a very mean face and all the other normal Santa stuff—white beard, fat) drove V-E-R-Y S-L-O-W-L-Y by our house in a long red truck (sleigh?) with a shell, parked in front of our house, walked over to our driveway and up it a few steps, appeared to be looking at our gate, behind which Taco was insanely barking, and then took his keys out of his pocket, turned around and walked S-L-O-W-L-Y back to his truck/sleigh and drove away. Weird and creepy. He was creeping me out so much that I thought about asking “Can I help you?” through the open window, but I knew it would come out of my mouth confrontational-sounding because I was so annoyed at his suspicious behavior, so I decided to keep my mouth shut. No tangles today. Not while I’m at the peak of my radioactivity. Maybe tomorrow.
+++
*NUC MED FOOTNOTE: Here are a few choice phrases from some of the paperwork they made me sign before getting my dose. On the hilariously titled Consent to Use Radioisotopes: “The uncertainties and nature of this treatment and the risks of injury despite precautions have been explained to me. I voluntarily accept the risks involved and agree that the above named physician, his assistants, Hoag Hospital, and its personnel shall assume no responsibility for the results of this treatment or its interpretation.” How awesome is that?
*When I first typed potato, I typed "pootato," which made me smile before I edited it. Perhaps I should not have changed it. It might have brought a smile to your face, as well. I am very bad at typing on this laptop because I rarely use it. I bet by the end of the week, I'll be ready for the secretarial pool, though.
I will try as best I can to describe the RAI dose-taking adventure. I have all the time in the world right now, and the rest of society is not in the same boat. All this blathering I'm about to do is to satisfy my own narcissistic desire to remember the details of this odd and fascinating experience and to read about it later...after old age and senility completely set in.
First of all, I love that I was on my bluetooth talking to my friend Diane on my cell phone right before entering Hoag's electrical doors, because I got to be so "current" and so "now" and appear (as if anyone had the time or the inclination to notice little old me outside Hoag) so "mover-and-shaker" or at least "busy" or at the very least "on the phone." After we hung up, I went in, registered, and went to the nuclear medicine department. Those in the know informally call it Nuc Med (pronounced like Nuke Med, of course), and for some reason, I really like it when people use that verbal abbreviation in a medical setting.
So I got to Nuc Med, checked in there, waited a little while til they called me (sat in the waiting room with my head resting against the wall and my eyes closed, concentrating on breathing in and out and praying that everything would go smoothly...and just drinking in the experience and trying to rid myself of any nervous energy, which worked). A gal came in, called out "Laura" and something that sounded like "Bomshay," and when nobody responded, she turned around to leave, and right when the door was about to shut after her, I squeaked out, "The last name you said sounded a little bit like mine, but my first name is Lynn. Are you looking for Lynn Pomije?" and she got all embarrassed and apologized a few times, saying she'd forgotten the name as she came down the hall to get me. She took me back to one of their "Dosing Rooms," which is the first cool thing about Nuc Med.
The room has a bright yellow biohazard sign on the outside of the door (first cool thing about dosing rooms), and you can't just waltz in there. There's a keypad outside the door where they have to enter some secret, nuclear code to enter (second cool thing about dosing rooms). The keypad-entry system is cool from the inside because when they leave you alone (and they invariably leave you alone in the dosing room for one reason or another), they have to punch in the code to get back in, and you can hear this from the inside, so when you’re doing something like picking your nose, or taking a picture with your cell phone of the RAI dose in its tungsten cylinder, the delay gives you just enough time to stop picking your nose or slap shut your cell phone and look nonchalant when they reenter (third cool thing about dosing rooms). [T-shirt idea: I (HEART) DOSING ROOMS]. FYI, I did not pick my nose (this time, wink wink), but I did take a photo of the tungsten cylinder and its cute little burgundy harness/purse/carrying thingy.
The gal entered a code, took me into the room, gave me a few forms to fill out* (see Nuc Med footnote below) and left to go find the Nuclear Physicist (the second cool thing about Nuc Med), who for reasons of protocol needed to give me a consultation before “dosing me.” There’s a lot of protocol involved in nuclear medicine, and I’ve learned to appreciate and respect it and not get impatient. The Nuclear Physicist arrived, punched in the code and entered, and although the gal had called him “KJ” when she went to locate him, he looked more like a nuclear physicist and less like a basketball buddy than his name seemed to imply. He was an intelligent, thoughtful light-skinned Middle Eastern man with professorial glasses. He gave me the run-down on precautions (sleep in a separate bed for at least 5 days, yada yada yada) and then he left to go find the Nuclear Medicine Physician, Dr. Taketa, who would administer the dose.
Dr. Taketa came in, gave me a few last-minute precautionary suggestions, and then, when another young man, a nuclear medicine technician, had entered the secret code and joined us, the tech unscrewed the tungsten cylinder, opened the pill bottle inside, and handed it to me with a cup of water, and boom—I tossed it into the back of my throat and took a couple drinks of water—and it was gone.
The third cool thing about Nuc Med is when they bring in the meter stick (I thought it was charming that they called it a meter stick—I woulda called it a yardstick) and the Geiger counter and measure the millirems per hour of radioactivity that are emitting from your throat/neck area after you swallow the dose. My measurement was 33 mrem/hr at 1 meter, which they said was exactly what they expected it to be. Then they booted me and told me not to linger too long in the lobby.
I drove home, tried to take a nap, felt convinced I felt the RAI absorbing into my left maxillary sinus, which has been MRI-proven to have mucoperiosteal thickening, and where I suffer all my sinus infections, but other than that, I feel delightfully, painfully, absurdly the same.
I watched a TiVO’ed episode of “House” and dozed off, but just for a few minutes, tried to watch “Oprah” but got bored, and now I’m writing this, which is far more exciting than any activity I can think of doing.
Oh wait—excitement beckons: A couple hooligans just came to the front door, heard me trip over the doggie gate inside the house and yell at Taco to stop barking, and then, when I didn’t answer the door, went right by my open master bedroom window commenting loudly about how rude people are not to answer their doors. I thought briefly about telling them I was radioactive, but I didn’t want to get into a tangle with them, so I let it slide, Clyde.
Then an old Santa-looking man (except with a very mean face and all the other normal Santa stuff—white beard, fat) drove V-E-R-Y S-L-O-W-L-Y by our house in a long red truck (sleigh?) with a shell, parked in front of our house, walked over to our driveway and up it a few steps, appeared to be looking at our gate, behind which Taco was insanely barking, and then took his keys out of his pocket, turned around and walked S-L-O-W-L-Y back to his truck/sleigh and drove away. Weird and creepy. He was creeping me out so much that I thought about asking “Can I help you?” through the open window, but I knew it would come out of my mouth confrontational-sounding because I was so annoyed at his suspicious behavior, so I decided to keep my mouth shut. No tangles today. Not while I’m at the peak of my radioactivity. Maybe tomorrow.
+++
*NUC MED FOOTNOTE: Here are a few choice phrases from some of the paperwork they made me sign before getting my dose. On the hilariously titled Consent to Use Radioisotopes: “The uncertainties and nature of this treatment and the risks of injury despite precautions have been explained to me. I voluntarily accept the risks involved and agree that the above named physician, his assistants, Hoag Hospital, and its personnel shall assume no responsibility for the results of this treatment or its interpretation.” How awesome is that?
Saturday, June 6, 2009
Praising the Lord in a Port-A-Potty
I praised the Lord in a porta-potty this morning. After watching an hour of Brendan’s hour and a half quarterback lesson in the increasing cold (and then itstarted to drizzle), I had to pee and found a porta-potty just in the nick of time. “Praise the Lord,” I said out loud several times while I was in there. (It’s the little things in life that I am most grateful for.) I wondered if God minds receiving praise from locales as unsavory as porta-potties. Probably not. And that’s one more thing that makes Him such a cool God.
Thursday, June 4, 2009
Hypo Hell? Not This Time
I woke up in a really good mood today. I can’t believe the amount of energy I’ve had, despite going off my Synthroid almost three weeks ago. It’ll be three weeks on Sunday. Today is Day 19, and my TSH should be somewhere between 28 and 38. How do I know this? Well, I don’t, but I can make a fairly educated guess because I just made a graph of my TSH levels showing both of the times I’ve gone hypo before this. The graphs look almost identical. For example, on Day 25 the first time, my TSH was 59.78. On Day 25 the second time, my TSH was 60.27. [Note added later: My TSH was 40 that day. My graph was pretty close.]
Anyway, the subject was supposed to be my good mood and how fantastic I have felt during this hypo. I’ve been so lucky. My only side effects this time have been feeling a little hyper during the day, a little gassy, sometimes it feels like a big effort to hold my arms over my head for a few minutes (like when I wash my hair in the shower or comb it afterwards), I dream more and have weirder dreams, and I fall asleep on the couch at night earlier than I used to. Once in a while, I feel like I’m going to faint if I get up too quickly from sitting on the floor, but that happens to me whether I’m off Synthroid or not. Overall, it has been a piece of CAKE (low-iodine, of course).
I got my blood drawn this morning to check my TSH, and I should know the number tomorrow. (I’ll add it to the graph!) At the lab where I always have my blood drawn, the ladies who work there kind of know me by now since I’ve been going every 6 weeks or so for the last year. They are always really nice. The lady who drew my blood this morning said I was brave after she stuck the needle in my arm, which cracked me up. I’m a 42-year-old woman, for goodness sake! I should hope that by now I wouldn’t be a nervous wreck to have my blood drawn. Walking out of the lab, I felt so happy and upbeat, and I had all kinds of energy today all day. I didn’t even have the usual afternoon sleepiness I get in regular life, and I think it’s because I’ve been keeping myself really busy.
I’m continuing to nest. I’ve got the house almost “ready.” I still need to finish vacuuming and dusting the living room and family room, but other than that, it’s pretty much good to go. I’ve got Jack a shirt for his baptism on Sunday, and I have stocked both refrigerators with lots of good food for Pommy and Jack (and Brendan this weekend, when he’s here), and it’s been making me feel very good to get things all stocked up. I feel like I’m preparing for a storm or something—getting all the supplies we’ll need before the thunder starts. Speaking of thunder, it thundered and lightninged (not words, I’m sure) like crazy the other morning at 2 am. It woke me up from a weird dream I was having about a kindergarten teacher at Jack’s school.
But I feel like I’m getting things ready for armageddon or a birth or a transformation. I might be trying to distract myself from thoughts of how much I’m going to miss hugging my family every day for the first few days and how hard it’s going to be not to snuggle with Taco and Brady. Taco sits on my lap every night when I settle down to watch TV, and I’m not going to be able to do that for several days. I don’t know if it’s going to be harder on her or me. (We’re both big babies.)
I feel God’s presence in my life today. I feel peaceful, happy, content. I feel encouraged about the future.
Anyway, the subject was supposed to be my good mood and how fantastic I have felt during this hypo. I’ve been so lucky. My only side effects this time have been feeling a little hyper during the day, a little gassy, sometimes it feels like a big effort to hold my arms over my head for a few minutes (like when I wash my hair in the shower or comb it afterwards), I dream more and have weirder dreams, and I fall asleep on the couch at night earlier than I used to. Once in a while, I feel like I’m going to faint if I get up too quickly from sitting on the floor, but that happens to me whether I’m off Synthroid or not. Overall, it has been a piece of CAKE (low-iodine, of course).
I got my blood drawn this morning to check my TSH, and I should know the number tomorrow. (I’ll add it to the graph!) At the lab where I always have my blood drawn, the ladies who work there kind of know me by now since I’ve been going every 6 weeks or so for the last year. They are always really nice. The lady who drew my blood this morning said I was brave after she stuck the needle in my arm, which cracked me up. I’m a 42-year-old woman, for goodness sake! I should hope that by now I wouldn’t be a nervous wreck to have my blood drawn. Walking out of the lab, I felt so happy and upbeat, and I had all kinds of energy today all day. I didn’t even have the usual afternoon sleepiness I get in regular life, and I think it’s because I’ve been keeping myself really busy.
I’m continuing to nest. I’ve got the house almost “ready.” I still need to finish vacuuming and dusting the living room and family room, but other than that, it’s pretty much good to go. I’ve got Jack a shirt for his baptism on Sunday, and I have stocked both refrigerators with lots of good food for Pommy and Jack (and Brendan this weekend, when he’s here), and it’s been making me feel very good to get things all stocked up. I feel like I’m preparing for a storm or something—getting all the supplies we’ll need before the thunder starts. Speaking of thunder, it thundered and lightninged (not words, I’m sure) like crazy the other morning at 2 am. It woke me up from a weird dream I was having about a kindergarten teacher at Jack’s school.
But I feel like I’m getting things ready for armageddon or a birth or a transformation. I might be trying to distract myself from thoughts of how much I’m going to miss hugging my family every day for the first few days and how hard it’s going to be not to snuggle with Taco and Brady. Taco sits on my lap every night when I settle down to watch TV, and I’m not going to be able to do that for several days. I don’t know if it’s going to be harder on her or me. (We’re both big babies.)
I feel God’s presence in my life today. I feel peaceful, happy, content. I feel encouraged about the future.
Wednesday, June 3, 2009
There's No Such Thing as a Good Cancer
--- In Thyca@yahoogroups.com, "cindylew117"
Hi
Had my first appointment with the surgeon today, my tt will be on June 8th. Now I understand that I have papillary, which I understand is the most curable. (I can't say good cancer there is no good cancer if you ask me, and I hate when people say that) Anyway, the doctor, who I know is very good, and I definitely do want to use him, said that he believes it has spread to my lymphnodes, and he has to remove the infected ones, and biopsy them. Now if this is not an aggresive type, how did it spread to my lymphnodes. This does make me nervous. But he also told me surgery and the RAI will cure me. I guess I was a bit surprised to hear that we went from a 2 hour surgery to a 4-5 hour surgery. Am I being rediculous?
Cindy
Hi, Cindy.
First of all,
:--)
Monday, June 8, the day you have your TT, is the day I have my second RAI treatment of 150 mCi. I'm a year and 4 months past my TT and a year and 3 months past my first ablation, which was also 150 mCi. I have gone down the well-traveled roads of research and prayer and have come from where you are (pre-surgery jitters) through a search for a good endo to where I am now--at peace with having a second RAI treatment. My docs don't consider my elevated Tg a recurrence--rather, persistent disease, which makes sense to me. The surgery and first ablation just didn't get it all the first time around. It happens.
I wanted to tell you a few things from first-hand experience to make you feel better and more hopeful about your journey:
1) My surgery was a breeze. Woke up the next morning full of energy, was driving 3 days later (could turn my head very well), and was back to normal in a very short time. Scar hardly noticeable at all.
2) RAI treatment, for me, wasn't all that eventful--even quite hypo (TSH >60), I only felt a little tired, and after the treatment, I lost my sense of taste for 4-5 weeks, but I hardly had any salivary gland issues at all (a few times I had soreness, which I massaged away). I considered these to be minor inconveniences.
3) You're not being ridiculous at all. This is the perfect place to ask questions and ask for support--no question is a dumb or ridiculous one.
4) I had lymph node spread, too, and having spread to lymph nodes doesn't negatively affect your prognosis.
5) Your surgeon *expecting* to find lymph node spread is actually a good thing--knowing that going into the surgery makes it more likely that your surgeon will be extra "definitive" about lymph node dissection (removal). My surgeon just took out the ones that looked suspicious, and all 5 he took out were malignant. I wish he'd removed more so we could have a better idea of the extent of lymph node spread, but that's not what happened. I've learned to accept this. You have the benefit of an experienced surgeon who is going into the surgery expecting to remove at least some lymph nodes. In my opinion, that's to your advantage.
Hope all this helps. Best of luck to you, Cindy! We're here if you need us!
Sincerely,
Lynn in Orange County, California
Hi
Had my first appointment with the surgeon today, my tt will be on June 8th. Now I understand that I have papillary, which I understand is the most curable. (I can't say good cancer there is no good cancer if you ask me, and I hate when people say that) Anyway, the doctor, who I know is very good, and I definitely do want to use him, said that he believes it has spread to my lymphnodes, and he has to remove the infected ones, and biopsy them. Now if this is not an aggresive type, how did it spread to my lymphnodes. This does make me nervous. But he also told me surgery and the RAI will cure me. I guess I was a bit surprised to hear that we went from a 2 hour surgery to a 4-5 hour surgery. Am I being rediculous?
Cindy
Hi, Cindy.
First of all,
:--)
Monday, June 8, the day you have your TT, is the day I have my second RAI treatment of 150 mCi. I'm a year and 4 months past my TT and a year and 3 months past my first ablation, which was also 150 mCi. I have gone down the well-traveled roads of research and prayer and have come from where you are (pre-surgery jitters) through a search for a good endo to where I am now--at peace with having a second RAI treatment. My docs don't consider my elevated Tg a recurrence--rather, persistent disease, which makes sense to me. The surgery and first ablation just didn't get it all the first time around. It happens.
I wanted to tell you a few things from first-hand experience to make you feel better and more hopeful about your journey:
1) My surgery was a breeze. Woke up the next morning full of energy, was driving 3 days later (could turn my head very well), and was back to normal in a very short time. Scar hardly noticeable at all.
2) RAI treatment, for me, wasn't all that eventful--even quite hypo (TSH >60), I only felt a little tired, and after the treatment, I lost my sense of taste for 4-5 weeks, but I hardly had any salivary gland issues at all (a few times I had soreness, which I massaged away). I considered these to be minor inconveniences.
3) You're not being ridiculous at all. This is the perfect place to ask questions and ask for support--no question is a dumb or ridiculous one.
4) I had lymph node spread, too, and having spread to lymph nodes doesn't negatively affect your prognosis.
5) Your surgeon *expecting* to find lymph node spread is actually a good thing--knowing that going into the surgery makes it more likely that your surgeon will be extra "definitive" about lymph node dissection (removal). My surgeon just took out the ones that looked suspicious, and all 5 he took out were malignant. I wish he'd removed more so we could have a better idea of the extent of lymph node spread, but that's not what happened. I've learned to accept this. You have the benefit of an experienced surgeon who is going into the surgery expecting to remove at least some lymph nodes. In my opinion, that's to your advantage.
Hope all this helps. Best of luck to you, Cindy! We're here if you need us!
Sincerely,
Lynn in Orange County, California
Tuesday, June 2, 2009
Dr. Ain Weighs In
--- On Tue, 5/26/09, lpomije
After a second (empiric) dose of 150 mCi RAI to treat stimulated Tg of
22 (no TgAb) and WBS showing uptake in the neck but negative u/s and
negative MRI, when should the following be done:
-u/s
-suppressed Tg/TgAb
-stimulated Tg/TgAb
-WBS (not the post-treatment WBS, but well after that)
Thank you for your time. Sincerely, Lynn in Orange County, California
.......
4/13/09 TSH 60.27; Tg 22
4/16/09 WBS: "linear" uptake in neck
......
Dear TCH Members,
Often, "linear" uptake in the neck is not coming from thyroid cancer, but rather
from radioactive saliva that is coating the esophagus. I have my patients peel
and eat a large lemon (as if it is an orange) one hour before their scan, then
swish & swallow a mouthful of water every 10 minutes until the scan is started.
This has been effective in reducing the error of mistaking salivary
contamination from actual tumor.
Anytime that an empiric treatment of radioiodine is administered for elevated
thyroglobulin (using a hypothyroid preparation and a low iodine diet), it should
be followed (within 2 to 7 days) by a "post-therapy" whole body scan. If the
scan demonstrates uptake of the radioiodine in a tumor site, then it suggests
possibly effective treatment, if no uptake, it still might have been of benefit.
I restudy the patient with a stimulated thyroglobulin (hypothyroid or Thyrogen)
6 months later. If the thyroglobulin is NOT significantly reduced (accounting
for Thyrogen increasing the thyroglobulin to only one third of the level seen
with hypothyroidism), then it signals that the residual thyroid cancer is no
longer responsive to radioactive iodine.
**************PLEASE BE ADVISED*********************
THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED
FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD
IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY
PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN
PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.
************************************************
Kenneth B. Ain, M.D.
Professor of Medicine & The Carmen L. Buck Chair of Oncology Research
Director, Thyroid Oncology Program
Division of Endocrinology & Molecular Medicine
Department of Internal Medicine, Room MN524
University of Kentucky Medical Center, 800 Rose Street, Lexington, KY
40536-0298
& Director, Thyroid Cancer Research Lab., Veterans Affairs Med. Cntr, Lexington, KY
After a second (empiric) dose of 150 mCi RAI to treat stimulated Tg of
22 (no TgAb) and WBS showing uptake in the neck but negative u/s and
negative MRI, when should the following be done:
-u/s
-suppressed Tg/TgAb
-stimulated Tg/TgAb
-WBS (not the post-treatment WBS, but well after that)
Thank you for your time. Sincerely, Lynn in Orange County, California
.......
4/13/09 TSH 60.27; Tg 22
4/16/09 WBS: "linear" uptake in neck
......
Dear TCH Members,
Often, "linear" uptake in the neck is not coming from thyroid cancer, but rather
from radioactive saliva that is coating the esophagus. I have my patients peel
and eat a large lemon (as if it is an orange) one hour before their scan, then
swish & swallow a mouthful of water every 10 minutes until the scan is started.
This has been effective in reducing the error of mistaking salivary
contamination from actual tumor.
Anytime that an empiric treatment of radioiodine is administered for elevated
thyroglobulin (using a hypothyroid preparation and a low iodine diet), it should
be followed (within 2 to 7 days) by a "post-therapy" whole body scan. If the
scan demonstrates uptake of the radioiodine in a tumor site, then it suggests
possibly effective treatment, if no uptake, it still might have been of benefit.
I restudy the patient with a stimulated thyroglobulin (hypothyroid or Thyrogen)
6 months later. If the thyroglobulin is NOT significantly reduced (accounting
for Thyrogen increasing the thyroglobulin to only one third of the level seen
with hypothyroidism), then it signals that the residual thyroid cancer is no
longer responsive to radioactive iodine.
**************PLEASE BE ADVISED*********************
THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED
FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD
IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY
PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN
PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.
************************************************
Kenneth B. Ain, M.D.
Professor of Medicine & The Carmen L. Buck Chair of Oncology Research
Director, Thyroid Oncology Program
Division of Endocrinology & Molecular Medicine
Department of Internal Medicine, Room MN524
University of Kentucky Medical Center, 800 Rose Street, Lexington, KY
40536-0298
& Director, Thyroid Cancer Research Lab., Veterans Affairs Med. Cntr, Lexington, KY
Sunday, May 31, 2009
26 Good Things About Thyroid Cancer
Today it’s official: Jack is getting baptized next Sunday at the church we’ve been attending for a few years, Salem Lutheran. I am thrilled.
After years of wanting to have him baptized, it was finally perfect timing, and it’s really happening!!! We have Pommy’s blessing, and Jack is OK with it (which is not to say that Jack’s approval is required, but at least he’s not nervous about it anymore. Here is more evidence that God is always working—working on me, on Pommy, on the kids, on everything and everyone at all times. He doesn’t take a day off. It must be exhausting.
26 Good Things About Thyroid Cancer
Actually, there are more than 26
Being grateful it’s not terminal pancreatic cancer
Chemotherapy, as in “none required”
Doing things you’ve always wanted to do because any cancer diagnosis makes you want to live life more fully
Everyday is a blessing (everyday has always been a blessing, but it seems more true now)
Fancy thyroid scar
Gummy bears eaten at 10 am with running friends is OK on low-iodine diet. This alone is cause for celebration!
Hair loss from changes in Synthroid dose minimal and only noticeable to me
It’s easier not to sweat the small stuff now.
Jokes about thyroids open up whole new department in my sense of humor
Kangaroos rarely diagnosed with it
Low-iodine diet results in small amount of weight loss and much healthier eating habits, if only temporarily
MRIs I wouldn’t otherwise have had done rule out other diseases and bad stuff.
New appreciation for the thyroid’s contribution to bodily processes. Very underrated gland.
Opportunity to show my kids how to have faith and be brave through trials
People tell you they love you and show you they care when you get diagnosed, and it feels good to be loved.
Quality of life better now
Radioactive iodine treatment, which for me results in loss of taste for 4-5 weeks afterwards, makes me really appreciate food when the taste buds come back.
Sleeping through dinner perfectly acceptable when hypo for scans or treatment
This list
Undeniable presence of God throughout trials
Vegetables and fruit, allowed on the low-iodine diet, produce delightfully regular stools.
Writing responses to newly diagnosed patients on the thyroid cancer listserv; it feels so good to give back and help others the way others helped me after I was diagnosed.
Xylophone playing allowed—no, encouraged—while in isolation after RAI.
Yodeling also OK while in isolation. (For that matter, anything goes. Who’s going to tell you “no”? After all, you’re radioacive, dude.)
Zapper, bug (I’ve been told I am a bug zapper when I’m radioactive. I’ll have the opportunity to test this theory in 4 days.)
Everything on the timeline of my life has fallen onto one side or the other of my radioactive iodine treatment--sort of like BC and AD. Except it's BRAI and ARAI (Before Radioactive Iodine and After Radioactive Iodine). I can’t think of life as one continuum anymore—the same way I couldn’t fathom it as a continuum when I was about to give birth to both my boys. You know that things will be different afterwards (much more so with a new baby, but…), and you obsessively prepare to try and make the transition easier, but nothing you do really prepares you completely for the new life that waits on the other side of the date, whatever the date may be.
Will I have salivary gland damage? Will I lose my sense of taste again? Will I get teary eyes like I did last time? Will I feel nauseous—even a little queasy? Will I feel like I’m buzzing? Will I sleep a lot? (I didn’t sleep that much last time, but I was in a hospital room for 48 hours after the dose, and this time I’ll be at home in my cozy cocoon.) Will Jack have an easier time with accepting me back after I’m safe to be around? That was hard last year.
I do feel lucky to be going through this. though. My aunt lost her husband, Dale, to prostate cancer in TK, and I imagine that her life now feels to her like it was split into two parts on the day he died. There was Before Dale’s Death and now there’s After Dale’s Death. And there is no smoothing over or filling of the chasm that opened up on the day he went to Heaven.
One of the girls my sister and I run with every Saturday just had her best friend undergo brain surgery for a totally unexpected golfball-sized brain tumor the doctors found on an MRI. The gal is doing well but will need some additional treatment--radiation and/or chemo. Another reason I am lucky to have this.
That's what's so easy about dumb old thyroid cancer. It pales in comparison to what others are going through.
After years of wanting to have him baptized, it was finally perfect timing, and it’s really happening!!! We have Pommy’s blessing, and Jack is OK with it (which is not to say that Jack’s approval is required, but at least he’s not nervous about it anymore. Here is more evidence that God is always working—working on me, on Pommy, on the kids, on everything and everyone at all times. He doesn’t take a day off. It must be exhausting.
26 Good Things About Thyroid Cancer
Actually, there are more than 26
Being grateful it’s not terminal pancreatic cancer
Chemotherapy, as in “none required”
Doing things you’ve always wanted to do because any cancer diagnosis makes you want to live life more fully
Everyday is a blessing (everyday has always been a blessing, but it seems more true now)
Fancy thyroid scar
Gummy bears eaten at 10 am with running friends is OK on low-iodine diet. This alone is cause for celebration!
Hair loss from changes in Synthroid dose minimal and only noticeable to me
It’s easier not to sweat the small stuff now.
Jokes about thyroids open up whole new department in my sense of humor
Kangaroos rarely diagnosed with it
Low-iodine diet results in small amount of weight loss and much healthier eating habits, if only temporarily
MRIs I wouldn’t otherwise have had done rule out other diseases and bad stuff.
New appreciation for the thyroid’s contribution to bodily processes. Very underrated gland.
Opportunity to show my kids how to have faith and be brave through trials
People tell you they love you and show you they care when you get diagnosed, and it feels good to be loved.
Quality of life better now
Radioactive iodine treatment, which for me results in loss of taste for 4-5 weeks afterwards, makes me really appreciate food when the taste buds come back.
Sleeping through dinner perfectly acceptable when hypo for scans or treatment
This list
Undeniable presence of God throughout trials
Vegetables and fruit, allowed on the low-iodine diet, produce delightfully regular stools.
Writing responses to newly diagnosed patients on the thyroid cancer listserv; it feels so good to give back and help others the way others helped me after I was diagnosed.
Xylophone playing allowed—no, encouraged—while in isolation after RAI.
Yodeling also OK while in isolation. (For that matter, anything goes. Who’s going to tell you “no”? After all, you’re radioacive, dude.)
Zapper, bug (I’ve been told I am a bug zapper when I’m radioactive. I’ll have the opportunity to test this theory in 4 days.)
Everything on the timeline of my life has fallen onto one side or the other of my radioactive iodine treatment--sort of like BC and AD. Except it's BRAI and ARAI (Before Radioactive Iodine and After Radioactive Iodine). I can’t think of life as one continuum anymore—the same way I couldn’t fathom it as a continuum when I was about to give birth to both my boys. You know that things will be different afterwards (much more so with a new baby, but…), and you obsessively prepare to try and make the transition easier, but nothing you do really prepares you completely for the new life that waits on the other side of the date, whatever the date may be.
Will I have salivary gland damage? Will I lose my sense of taste again? Will I get teary eyes like I did last time? Will I feel nauseous—even a little queasy? Will I feel like I’m buzzing? Will I sleep a lot? (I didn’t sleep that much last time, but I was in a hospital room for 48 hours after the dose, and this time I’ll be at home in my cozy cocoon.) Will Jack have an easier time with accepting me back after I’m safe to be around? That was hard last year.
I do feel lucky to be going through this. though. My aunt lost her husband, Dale, to prostate cancer in TK, and I imagine that her life now feels to her like it was split into two parts on the day he died. There was Before Dale’s Death and now there’s After Dale’s Death. And there is no smoothing over or filling of the chasm that opened up on the day he went to Heaven.
One of the girls my sister and I run with every Saturday just had her best friend undergo brain surgery for a totally unexpected golfball-sized brain tumor the doctors found on an MRI. The gal is doing well but will need some additional treatment--radiation and/or chemo. Another reason I am lucky to have this.
That's what's so easy about dumb old thyroid cancer. It pales in comparison to what others are going through.
Saturday, May 30, 2009
Second Opinion on Pathology
Today I received the second opinion report in the mail. Here's what it says:
"After speaking with the patient who called my office about her case, I realized that the reason I received only ten blocks and no slides is because the slides had been lost during the process of closing of the initial hospital where the surgery was done and the only thing that remained were the blocks. I therefore had the blocks re-cut here in out laboratory and will indicate to you my opinion on those re-cut slides since the originals are no longer available.
She has what appears to be in the isthmus a cystic papillary carcinoma of usual type which measured 1 cm according to the original pathology report. She has in the right lobe, specimens "three" and "four," multiple foci of papillary microcarcinoma with associated positive lymph nodes with metastatic papillary carcinoma. I do not see extranodal extension. It is difficult for me to assess whether or not there is extraglandular extension by the papilllary carcinoma although in some sections, tumor nodules come very close to an inked cauterized surgical margin. What I do note in several of the blocks from the right lobe are numerous intraglandular psammoma bodies in lymphatics. This correlates well with the fact that she has lymph node metastases.
Since she was under forty-five years old at the time of the diagnosis of this case, she would be a Stage I lesion (that would be T1N1Mx) by the AJCC staging system.
In summary, then, my diagnoses are:
Thyroid gland and lymph nodes:
1) Papillary carcinoma, classic type, multifocal, largest lesion and isthmus, approximately 1 cm; no definitive extraglandular extension identified; numerous intraglandular lymphatic psammoma bodies seen. ICD9 193.0
2) Metastatic papillary carcinoma, classic type, to several perithyroidal lymph nodes; no extranodal extension identified. ICD9 193.0"
So that's it. Not a lot that's more revealing than the original path report, but the original never said anything about extraglandular extension and extranodal extension, so I like that she included some thoughts on that (although not definitive on the extraglandular extension). Oh well. The main thing for me was putting to rest my obsessive fears that I might have been misdiagnoses initially and really had a way more aggressive variant. So it was good to get the opinion to rule that out.
The first time I spoke with Dr. LiVolsi, she didn't ask me anything other than why she only got blocks and not slides, and I explained it to her; the second time I spoke with her, she called me back to let me know that her secretary, Cindy, had faxed the report to my doc's office days earlier. My doc's office hadn't received it. Anyway, it was in that second, very brief, conversation that I started babbling at her (I got all nervous that the doc herself called--even though I'd talked to her once before, I was all star-struck)...and that's when the "queen of thyca path" thing shot out of my mouth. Since it was a compliment, she warmed up more and told me the little story about her colleague having an artist daughter who made her a beautiful piece of very colorful art featuring the thyroid gland, and this person had dubbed her "the high priestess of the butterfly gland."
I've got 6 more days til my RAI and 8 more days of the LID. Yea! You know how pregnant ladies "nest" before they have their babies (I sure did!)...that's how I've been lately. I've been baking LID bread and muffins and trying to get some meals cooked ahead of time for my hubby and sons and just trying to get stocked up on things at the grocery store for when I'm isolated in the master bedroom (which is small and can't really be called a "master bedroom" without air quotes).
"After speaking with the patient who called my office about her case, I realized that the reason I received only ten blocks and no slides is because the slides had been lost during the process of closing of the initial hospital where the surgery was done and the only thing that remained were the blocks. I therefore had the blocks re-cut here in out laboratory and will indicate to you my opinion on those re-cut slides since the originals are no longer available.
She has what appears to be in the isthmus a cystic papillary carcinoma of usual type which measured 1 cm according to the original pathology report. She has in the right lobe, specimens "three" and "four," multiple foci of papillary microcarcinoma with associated positive lymph nodes with metastatic papillary carcinoma. I do not see extranodal extension. It is difficult for me to assess whether or not there is extraglandular extension by the papilllary carcinoma although in some sections, tumor nodules come very close to an inked cauterized surgical margin. What I do note in several of the blocks from the right lobe are numerous intraglandular psammoma bodies in lymphatics. This correlates well with the fact that she has lymph node metastases.
Since she was under forty-five years old at the time of the diagnosis of this case, she would be a Stage I lesion (that would be T1N1Mx) by the AJCC staging system.
In summary, then, my diagnoses are:
Thyroid gland and lymph nodes:
1) Papillary carcinoma, classic type, multifocal, largest lesion and isthmus, approximately 1 cm; no definitive extraglandular extension identified; numerous intraglandular lymphatic psammoma bodies seen. ICD9 193.0
2) Metastatic papillary carcinoma, classic type, to several perithyroidal lymph nodes; no extranodal extension identified. ICD9 193.0"
So that's it. Not a lot that's more revealing than the original path report, but the original never said anything about extraglandular extension and extranodal extension, so I like that she included some thoughts on that (although not definitive on the extraglandular extension). Oh well. The main thing for me was putting to rest my obsessive fears that I might have been misdiagnoses initially and really had a way more aggressive variant. So it was good to get the opinion to rule that out.
The first time I spoke with Dr. LiVolsi, she didn't ask me anything other than why she only got blocks and not slides, and I explained it to her; the second time I spoke with her, she called me back to let me know that her secretary, Cindy, had faxed the report to my doc's office days earlier. My doc's office hadn't received it. Anyway, it was in that second, very brief, conversation that I started babbling at her (I got all nervous that the doc herself called--even though I'd talked to her once before, I was all star-struck)...and that's when the "queen of thyca path" thing shot out of my mouth. Since it was a compliment, she warmed up more and told me the little story about her colleague having an artist daughter who made her a beautiful piece of very colorful art featuring the thyroid gland, and this person had dubbed her "the high priestess of the butterfly gland."
I've got 6 more days til my RAI and 8 more days of the LID. Yea! You know how pregnant ladies "nest" before they have their babies (I sure did!)...that's how I've been lately. I've been baking LID bread and muffins and trying to get some meals cooked ahead of time for my hubby and sons and just trying to get stocked up on things at the grocery store for when I'm isolated in the master bedroom (which is small and can't really be called a "master bedroom" without air quotes).
Wednesday, May 20, 2009
Split Personality: Brave or Lazy and Scared?
I have at least two personalities. One personality is the way I am when I’m home alone—prone to taking naps and delaying emptying the dishwasher if I can get away with it. The other personality is the way I portray myself in public, via e-mail, and on my thyroid cancer support listserv. Look how peppy I am online:
Date: May 20, 2009
Subject: Update—2nd RAI tx looming, hypo + LID again—OH JOY!
Hi, everybody!
You guys have been so awesome and helpful throughout my journey, and I just
wanted to check in and report on my status.
As most of you know, I recently had my 1-year testing. My WBS showed uptake in
the neck, and my stimulated Tg (no TgAB) is at 22, but ultrasound failed to show
any mass or lesion or node or anything surgically resectable in my neck.
After weeks of pondering and research, I've decided to go ahead with the 2nd
(empiric) RAI treatment my endo recommends. (It would have been nice if I'd been
able to go straight into the treatment 4 weeks ago, when I was good n' hypo for
the scan and Tg draw, but I wasn't prepared for it then, and I needed to do some
research, soul-searching and praying to get to this place.)
So I'm off my Synthroid since last Sunday, starting LID Tuesday, May 26, and am
scheduled to take the outpatient RAI dose (not sure how much yet) June 8. I'm
one of the lucky ones who does pretty well with hypo and I can't tolerate
Cytomel, so I just go the cold-turkey route to get my TSH up there.
I'm also waiting for a second opinion on my original pathology just to have
peace of mind about the original straight papillary diagnosis.
I wish the following for everybody out there who is dealing with thyca: clean
scans, undetectable Tg and no TgAB, definitive answers, lots of support from
family and friends, lots of laughter, and naps as often as possible!
:--)
Hang in there, fellow thycans!
Sincerely,
Lynn in Orange County, California
Biopsy on 3 suspicious nodules 1/9/08 inconclusive
2/21/08 TT (age 41)
Dx multifocal papillary carcinoma + 5/5 positive nodes
3/24/08 RAI 150 mCi
8/08 Rising suppressed Tg
11/19/08 U/S shows suspicious tissue measuring 2.2 x .7 x .4 cm
12/3/08 MRI clean
3/20/09 off Synthroid; on LID
4/13/09 TSH 60.27; Tg 22
4/16/09 WBS: “linear” uptake in neck
4/30/09 FNA scheduled; ultrasound fails to reveal any thyroid tissue; FNA
cancelled
Second RAI tx scheduled for 6/8/09
Awaiting 2nd opinion on original pathology
***
I like helping people, and I hope when I die they will be able to say about me that I had a positive effect on at least a few people’s lives. One of the ways I like to “give back” is by posting replies to people who are struggling with issues on the thyroid cancer listserv. It makes me feel good to offer a little encouragement or suggestions or perspective to others at different stages of treatment.
Here’s something I posted in response to someone else today:
Re: Help Dealing with Fatigue-->Sherri
--- In Thyca@yahoogroups.com, "laguera1963"
"clean", my Tg is elevated (70 when I went off my synthroid) So the cancer is
back. But this still has nothing to do with being tired?
Sherri, if you have recently been off your Synthroid for stimulated Tg testing
and WBS, you, of course, have been hypo and are probably still hypo. This is the
perfect recipe for fatigue. Do you know what your TSH was the day they did your
Tg blood draw? Just curious.
Don't let anyone else tell you (or imply) you're being lazy--especially those
who have never been through thyca and all its fatigue-inducing testing! Sounds
like you have a lot on your plate, and I feel for you. Sometimes reaching out
here (or at a local thyca support group) helps so much, just to remind you that
others have been in your shoes.
Like you, I have elevated Tg one year after TT and RAI and am preparing for my
2nd RAI treatment.
What do your docs plan to do about your scan-negative, Tg-positive status? What
part of CA are you in? I'm in Orange County.
Hang in there, and let us know if we can offer you anything else in the way of
encouragement.
Sincerely,
Lynn in Orange County, California
Here are two posts I wrote yesterday:
Re: Post-op 1 year-->Libby
--- In Thyca@yahoogroups.com, "libbyobrien56"
Tg/ Tg antibodies, negative. The problem IS......US showed an "ovoid" mass
(don't have the measurements, but not palpable by the endo). Since I didn't
have a post surgery US, who knows when it "showed up"....
now, I'll go HYPO ( no insurance for thyrogen) for 4 weeks and do blood work
then for the next step........! Scan dose radium?, biopsy, NOTHING...........I
hope!!??!! Any thoughts from all you fellow Thycans out there???? (Yes, I'll
do the LID! - thank god red wine is LID compatible!)
Hi, Libby.
Just wanted to say you're not alone!!! (see my siggy below)
I'll be on the LID in a few days, too, so we can lose a few pounds together and
go hypo together. Sweet!
:--)
P.S. I didn't have a post-surgery U/S until 9 months after TT, and it showed
something, too, but nobody can find it since then. (Go figure.) Hang in there
and keep your sense of humor.
Lynn in Orange County, California
+++
Re: ultrasound? MRI? as part of 1 year post-TT follow up Christina
--- In Thyca@yahoogroups.com, "Christina Sunley"
first WBS and will be going the thyrogen route. My endo has not mentioned doing
US or MRI.
Question: Is it common to also have ultrasound or MRI as part of the one-year
follow up? (I had papillary cancer in thyroid and lymph nodes.) Or are
ultrasounds/MRIs only done if something shows up on my WBS, scheduled in a
couple of weeks?
Thanks so much,
Christina
Hi, Christina,
Even if your endo doesn't usually order U/S at this point, I'd push for it if I
were you. The NCCN (National Comprehensive Cancer Network) and ATA (American
Thyroid Association) both recommend routine ultrasound as part of follow-up for
thyroid cancer. The WBS test is great, the stimulated Tg test is great, but U/S
rounds out the picture and gives you and your doc a third source of information
to rely on when assessing whether you are one of the lucky ones who will get a
NED (no evidence of disease) a year after your surgery and RAI. Plus, simply
put, U/S is the only testing method that will actually look inside your neck in
real time and give you an idea what's going on in there (hopefully nothing!).
Here is the reference in the ATA guidlines:
http://www.thyroid.org/professionals/publications/documents/Guidelinesthy2006.pd\
f
on page 17:
Cervical ultrasonography. Cervical ultrasonography is
highly sensitive in the detection of cervical metastases in patients
with differentiated thyroid cancer (208). Cervical
metastases occasionally may be detected by neck ultrasonography
even when TSH-stimulated serum thyroglobulin
levels remain undetectable (200).
R48. After surgery, cervical ultrasound to evaluate the thyroid
bed and central and lateral cervical nodal compartments
should be performed at 6 and 12 months and then annually
for at least 3–5 years, depending on the patients' risk for recurrent
disease and thyroglobulin status—Recommendation B
Best of luck to you!
Lynn in Orange County, California
I’m totally tooting my own horn here, aren’t I? Yep. It’s kind of annoying to me that I will take a situation like my being diagnosed with thyroid cancer and try to make it into a “look how great and helpful and therefore lovable I am” kind if thing. They say that at depression’s roots, there is much narcissism, and that makes sense to me. When you’re a kid and you’re hurting, you become so in tune to your own feelings that when you’re an adult, you’re so used to focusing on how you feel that you become self-centered, in every sense of the phrase. Centered on self, totally focused on your self. This is something that I guess I’d like to change about myself (really? You sound pretty complacent to me—“I guess I’d like to change”), and I’ve asked God to help change me, but I sincerely don’t think I’ve made andy progress. I have to bite my tongue sometimes not to start talking about myself when they are telling me something that’s bothering them or something that’s going on in their lives. I know the Bible advises against this in so many direct and indirect ways. Here’s one:
“Let nothing be done through strife or vainglory; but in lowliness of mind let each esteem other better than themselves. Look not every man on his own things, but every man also on the things of others.”
--Philippians 2:3-4, American King James version
By the way, have we talked about how awesome the book of Philippians is? The basic premise is that you gotta hang tough in tough times, and you gotta keep praising God during trials and tribulations.
How beautiful is this?
“But I would you should understand, brothers, that the things which happened to me have fallen out rather to the furtherance of the gospel; So that my bonds in Christ are manifest in all the palace, and in all other places; And many of the brothers in the Lord, waxing confident by my bonds, are much more bold to speak the word without fear. Some indeed preach Christ even of envy and strife; and some also of good will: The one preach Christ of contention, not sincerely, supposing to add affliction to my bonds: But the other of love, knowing that I am set for the defense of the gospel. What then? notwithstanding, every way, whether in pretense, or in truth, Christ is preached; and I therein do rejoice, yes, and will rejoice. For I know that this shall turn to my salvation through your prayer, and the supply of the Spirit of Jesus Christ, According to my earnest expectation and my hope, that in nothing I shall be ashamed, but that with all boldness, as always, so now also Christ shall be magnified in my body, whether it be by life, or by death.”
--Philippiamns 1:12-20, American King James version
When I read that, I know with certainty that I am nothing more than a vehicle for faith and for spreading faith. That I am nothing more than a possibility of furthering God’s kingdom. I can be in my flesh all the time and be totally unspiritual and stay away fromGod or I can hang close to Him through thick and thin Life feels easy when in the “thick,” and this is usually when I think I don’t need God; “thin” is when I usually go to God, and that’s where I should be all the time.
When I read Philippians 1: 12-20, I also know that I can choose to be God’s servant or I can choose not to back up and look at the big picture. I can choose to let God be glorified (magnified) through me and my actions and my faith and my behavior, or I can choose to do this whole thing (life) by myself, and if there is any (flimsy, thin) glory, take it all for myself.
“Christ shall be magnified in my body,” thyroid cancer cells or not.
Also, here’s an idea of why I got thyroid cancer:
“For to you it is given in the behalf of Christ, not only to believe on him, but also to suffer for his sake.”
--Philippians 1: 29, American King James version
Date: May 20, 2009
Subject: Update—2nd RAI tx looming, hypo + LID again—OH JOY!
Hi, everybody!
You guys have been so awesome and helpful throughout my journey, and I just
wanted to check in and report on my status.
As most of you know, I recently had my 1-year testing. My WBS showed uptake in
the neck, and my stimulated Tg (no TgAB) is at 22, but ultrasound failed to show
any mass or lesion or node or anything surgically resectable in my neck.
After weeks of pondering and research, I've decided to go ahead with the 2nd
(empiric) RAI treatment my endo recommends. (It would have been nice if I'd been
able to go straight into the treatment 4 weeks ago, when I was good n' hypo for
the scan and Tg draw, but I wasn't prepared for it then, and I needed to do some
research, soul-searching and praying to get to this place.)
So I'm off my Synthroid since last Sunday, starting LID Tuesday, May 26, and am
scheduled to take the outpatient RAI dose (not sure how much yet) June 8. I'm
one of the lucky ones who does pretty well with hypo and I can't tolerate
Cytomel, so I just go the cold-turkey route to get my TSH up there.
I'm also waiting for a second opinion on my original pathology just to have
peace of mind about the original straight papillary diagnosis.
I wish the following for everybody out there who is dealing with thyca: clean
scans, undetectable Tg and no TgAB, definitive answers, lots of support from
family and friends, lots of laughter, and naps as often as possible!
:--)
Hang in there, fellow thycans!
Sincerely,
Lynn in Orange County, California
Biopsy on 3 suspicious nodules 1/9/08 inconclusive
2/21/08 TT (age 41)
Dx multifocal papillary carcinoma + 5/5 positive nodes
3/24/08 RAI 150 mCi
8/08 Rising suppressed Tg
11/19/08 U/S shows suspicious tissue measuring 2.2 x .7 x .4 cm
12/3/08 MRI clean
3/20/09 off Synthroid; on LID
4/13/09 TSH 60.27; Tg 22
4/16/09 WBS: “linear” uptake in neck
4/30/09 FNA scheduled; ultrasound fails to reveal any thyroid tissue; FNA
cancelled
Second RAI tx scheduled for 6/8/09
Awaiting 2nd opinion on original pathology
***
I like helping people, and I hope when I die they will be able to say about me that I had a positive effect on at least a few people’s lives. One of the ways I like to “give back” is by posting replies to people who are struggling with issues on the thyroid cancer listserv. It makes me feel good to offer a little encouragement or suggestions or perspective to others at different stages of treatment.
Here’s something I posted in response to someone else today:
Re: Help Dealing with Fatigue-->Sherri
--- In Thyca@yahoogroups.com, "laguera1963"
"clean", my Tg is elevated (70 when I went off my synthroid) So the cancer is
back. But this still has nothing to do with being tired?
Sherri, if you have recently been off your Synthroid for stimulated Tg testing
and WBS, you, of course, have been hypo and are probably still hypo. This is the
perfect recipe for fatigue. Do you know what your TSH was the day they did your
Tg blood draw? Just curious.
Don't let anyone else tell you (or imply) you're being lazy--especially those
who have never been through thyca and all its fatigue-inducing testing! Sounds
like you have a lot on your plate, and I feel for you. Sometimes reaching out
here (or at a local thyca support group) helps so much, just to remind you that
others have been in your shoes.
Like you, I have elevated Tg one year after TT and RAI and am preparing for my
2nd RAI treatment.
What do your docs plan to do about your scan-negative, Tg-positive status? What
part of CA are you in? I'm in Orange County.
Hang in there, and let us know if we can offer you anything else in the way of
encouragement.
Sincerely,
Lynn in Orange County, California
Here are two posts I wrote yesterday:
Re: Post-op 1 year-->Libby
--- In Thyca@yahoogroups.com, "libbyobrien56"
Tg/ Tg antibodies, negative. The problem IS......US showed an "ovoid" mass
(don't have the measurements, but not palpable by the endo). Since I didn't
have a post surgery US, who knows when it "showed up"....
now, I'll go HYPO ( no insurance for thyrogen) for 4 weeks and do blood work
then for the next step........! Scan dose radium?, biopsy, NOTHING...........I
hope!!??!! Any thoughts from all you fellow Thycans out there???? (Yes, I'll
do the LID! - thank god red wine is LID compatible!)
Hi, Libby.
Just wanted to say you're not alone!!! (see my siggy below)
I'll be on the LID in a few days, too, so we can lose a few pounds together and
go hypo together. Sweet!
:--)
P.S. I didn't have a post-surgery U/S until 9 months after TT, and it showed
something, too, but nobody can find it since then. (Go figure.) Hang in there
and keep your sense of humor.
Lynn in Orange County, California
+++
Re: ultrasound? MRI? as part of 1 year post-TT follow up Christina
--- In Thyca@yahoogroups.com, "Christina Sunley"
first WBS and will be going the thyrogen route. My endo has not mentioned doing
US or MRI.
Question: Is it common to also have ultrasound or MRI as part of the one-year
follow up? (I had papillary cancer in thyroid and lymph nodes.) Or are
ultrasounds/MRIs only done if something shows up on my WBS, scheduled in a
couple of weeks?
Thanks so much,
Christina
Hi, Christina,
Even if your endo doesn't usually order U/S at this point, I'd push for it if I
were you. The NCCN (National Comprehensive Cancer Network) and ATA (American
Thyroid Association) both recommend routine ultrasound as part of follow-up for
thyroid cancer. The WBS test is great, the stimulated Tg test is great, but U/S
rounds out the picture and gives you and your doc a third source of information
to rely on when assessing whether you are one of the lucky ones who will get a
NED (no evidence of disease) a year after your surgery and RAI. Plus, simply
put, U/S is the only testing method that will actually look inside your neck in
real time and give you an idea what's going on in there (hopefully nothing!).
Here is the reference in the ATA guidlines:
http://www.thyroid.org/professionals/publications/documents/Guidelinesthy2006.pd\
f
on page 17:
Cervical ultrasonography. Cervical ultrasonography is
highly sensitive in the detection of cervical metastases in patients
with differentiated thyroid cancer (208). Cervical
metastases occasionally may be detected by neck ultrasonography
even when TSH-stimulated serum thyroglobulin
levels remain undetectable (200).
R48. After surgery, cervical ultrasound to evaluate the thyroid
bed and central and lateral cervical nodal compartments
should be performed at 6 and 12 months and then annually
for at least 3–5 years, depending on the patients' risk for recurrent
disease and thyroglobulin status—Recommendation B
Best of luck to you!
Lynn in Orange County, California
I’m totally tooting my own horn here, aren’t I? Yep. It’s kind of annoying to me that I will take a situation like my being diagnosed with thyroid cancer and try to make it into a “look how great and helpful and therefore lovable I am” kind if thing. They say that at depression’s roots, there is much narcissism, and that makes sense to me. When you’re a kid and you’re hurting, you become so in tune to your own feelings that when you’re an adult, you’re so used to focusing on how you feel that you become self-centered, in every sense of the phrase. Centered on self, totally focused on your self. This is something that I guess I’d like to change about myself (really? You sound pretty complacent to me—“I guess I’d like to change”), and I’ve asked God to help change me, but I sincerely don’t think I’ve made andy progress. I have to bite my tongue sometimes not to start talking about myself when they are telling me something that’s bothering them or something that’s going on in their lives. I know the Bible advises against this in so many direct and indirect ways. Here’s one:
“Let nothing be done through strife or vainglory; but in lowliness of mind let each esteem other better than themselves. Look not every man on his own things, but every man also on the things of others.”
--Philippians 2:3-4, American King James version
By the way, have we talked about how awesome the book of Philippians is? The basic premise is that you gotta hang tough in tough times, and you gotta keep praising God during trials and tribulations.
How beautiful is this?
“But I would you should understand, brothers, that the things which happened to me have fallen out rather to the furtherance of the gospel; So that my bonds in Christ are manifest in all the palace, and in all other places; And many of the brothers in the Lord, waxing confident by my bonds, are much more bold to speak the word without fear. Some indeed preach Christ even of envy and strife; and some also of good will: The one preach Christ of contention, not sincerely, supposing to add affliction to my bonds: But the other of love, knowing that I am set for the defense of the gospel. What then? notwithstanding, every way, whether in pretense, or in truth, Christ is preached; and I therein do rejoice, yes, and will rejoice. For I know that this shall turn to my salvation through your prayer, and the supply of the Spirit of Jesus Christ, According to my earnest expectation and my hope, that in nothing I shall be ashamed, but that with all boldness, as always, so now also Christ shall be magnified in my body, whether it be by life, or by death.”
--Philippiamns 1:12-20, American King James version
When I read that, I know with certainty that I am nothing more than a vehicle for faith and for spreading faith. That I am nothing more than a possibility of furthering God’s kingdom. I can be in my flesh all the time and be totally unspiritual and stay away fromGod or I can hang close to Him through thick and thin Life feels easy when in the “thick,” and this is usually when I think I don’t need God; “thin” is when I usually go to God, and that’s where I should be all the time.
When I read Philippians 1: 12-20, I also know that I can choose to be God’s servant or I can choose not to back up and look at the big picture. I can choose to let God be glorified (magnified) through me and my actions and my faith and my behavior, or I can choose to do this whole thing (life) by myself, and if there is any (flimsy, thin) glory, take it all for myself.
“Christ shall be magnified in my body,” thyroid cancer cells or not.
Also, here’s an idea of why I got thyroid cancer:
“For to you it is given in the behalf of Christ, not only to believe on him, but also to suffer for his sake.”
--Philippians 1: 29, American King James version
Tuesday, May 19, 2009
Going Off Synthroid for Testing and Treatment
I’ve been off Synthroid for two days. That’s all. And here come the weird symptoms—shaky and hyper in the morning; bad, weird dreams; night sweats. It’s a blast, I gotta tell ya! I just made the appointment to receive my second treatment dose of RAI. I made the appointment for Monday, June 8. I hope my TSH is high enough by then. I think it will be.
I was thinking today how strange it is that my thyroid is all the way across the country in Philadelphia, PA, being analyzed by a pathologist, and I’ve never even been there. My thyroid is more well-traveled than I am!
I’ve been very hyper today, which I’ll take over being lethargic and/or depressed any day. I am in a good mood, and I have a ton of energy, much like several weeks ago when I was off my Synthroid for 30 days. As Pommy said tonight after dinner, “I guess I’ll enjoy it while it lasts.” Yup. Me too.
I was thinking today how strange it is that my thyroid is all the way across the country in Philadelphia, PA, being analyzed by a pathologist, and I’ve never even been there. My thyroid is more well-traveled than I am!
I’ve been very hyper today, which I’ll take over being lethargic and/or depressed any day. I am in a good mood, and I have a ton of energy, much like several weeks ago when I was off my Synthroid for 30 days. As Pommy said tonight after dinner, “I guess I’ll enjoy it while it lasts.” Yup. Me too.
Monday, May 18, 2009
Virginia!
Today the pathologist at the University of Pennsylvania who will be analyzing my cancerous thyroid tissue called me on my cell phone while I was on my way to Costco. How weird is that? There I was, doing my stay-at-home mom stuff (we needed milk and bread and a few other things!), and a well-known thyroid cancer pathologist who has written books about endocrine cancer pathology was calling me on my cell phone. I talked to her with my Bluetooth thingy in my ear. Surreal.
Dr. Virginia LiVolsi was one of those East-Coast-accent-having women who sound realy gruff but who aren’t that different from any normal person, they just sound kind of harsh because of their “accent.” She called to tell me that she needed my slides to complete the pathology report. I explained to her that the slides went missing after Irvine Regional Hospital closed and shipped all their pathology stuff to a warehouse. I told her that the samples I sent her were all that was left of my thyroid tissue after my surgery. She told me it would take a few more days to complete the pathology report (because she would have to have new slides made), and she said her second opinion report would probably be faxed to my doctor’s office Friday or Monday.
While I was fairly productive and got my laundry and Costco shopping done today, I also managed to find time to research Non-Hodgkin’s Lymphoma (NHL), which I think I have. I know that at 42 years old, I may be perimenopausal and might start getting night sweats more and more frequently as I age and get closer to real menopause. Since I also have a swollen area in my right armpit (have had it since November 2008—6 months now), I made the (probably) ridiculous leap to the conclusion that I have NHL.
Here are some facts about me:
1. I’m kind of a hypochondriac in the sense that I’m very sensitive to my body’s every change and feeling.
2. But I have real symptoms sometimes. (!!!)
3. Once in a while, I have a real illness or disease. Thyroid cancer is a good example.
4. I like the attention I get when I’m sick or diagnosed with cancer.
5. This makes me more susceptible to thinking I have a major illness, such as Non-Hodgkin’s Lymphoma. I’m not sure why I chose NHL instead of Hodgkin’s Lymphoma (HL)—quite possibly because it shares an acronym with the National Hockey League (NHL), of which my husband is a big fan these days.
I know this is a bizarre nonsequitur, but…
Here are some things that made today enjoyable:
1. An old lady in Costco was wearing an awesome outfit: a heavily starched long-sleeved blue button-down man shirt tucked into a charcoal gray ankle-length cotton skirt, with cuffed jeans underneath, black canvas China-doll shoes with embroidered flowers on top, and a red lanyard around her neck.
2. I went to Quest Diagnostics this morning to have my blood drawn (checking TSH and free T4). I happened to sit next to a gal who looked to be in her late 20s or early 30s, very professionally dressed, nicely made up, and I got to chatting with her after she sighed deeply when other people got called in before her. I suggested she make an appointment next time because I had found that cuts the wait time in half. She was basically a funny, not-too-bitter person who just happened to be a little pissed off that she had to wait so long to get her blood drawn. But the comical part was that she said, “Son of a bitch!” pretty loudly twice in our conversation. One time was when she was describing how her veins “disappear” when the phlebotomist tries to pin them down for blood, and I can’t remember what the context of the second “son of a bitch” was, but it was pretty loud, and it was pretty stinkin funny coming out of this professional-looking, otherwise soft-spoken woman.
Dr. Virginia LiVolsi was one of those East-Coast-accent-having women who sound realy gruff but who aren’t that different from any normal person, they just sound kind of harsh because of their “accent.” She called to tell me that she needed my slides to complete the pathology report. I explained to her that the slides went missing after Irvine Regional Hospital closed and shipped all their pathology stuff to a warehouse. I told her that the samples I sent her were all that was left of my thyroid tissue after my surgery. She told me it would take a few more days to complete the pathology report (because she would have to have new slides made), and she said her second opinion report would probably be faxed to my doctor’s office Friday or Monday.
While I was fairly productive and got my laundry and Costco shopping done today, I also managed to find time to research Non-Hodgkin’s Lymphoma (NHL), which I think I have. I know that at 42 years old, I may be perimenopausal and might start getting night sweats more and more frequently as I age and get closer to real menopause. Since I also have a swollen area in my right armpit (have had it since November 2008—6 months now), I made the (probably) ridiculous leap to the conclusion that I have NHL.
Here are some facts about me:
1. I’m kind of a hypochondriac in the sense that I’m very sensitive to my body’s every change and feeling.
2. But I have real symptoms sometimes. (!!!)
3. Once in a while, I have a real illness or disease. Thyroid cancer is a good example.
4. I like the attention I get when I’m sick or diagnosed with cancer.
5. This makes me more susceptible to thinking I have a major illness, such as Non-Hodgkin’s Lymphoma. I’m not sure why I chose NHL instead of Hodgkin’s Lymphoma (HL)—quite possibly because it shares an acronym with the National Hockey League (NHL), of which my husband is a big fan these days.
I know this is a bizarre nonsequitur, but…
Here are some things that made today enjoyable:
1. An old lady in Costco was wearing an awesome outfit: a heavily starched long-sleeved blue button-down man shirt tucked into a charcoal gray ankle-length cotton skirt, with cuffed jeans underneath, black canvas China-doll shoes with embroidered flowers on top, and a red lanyard around her neck.
2. I went to Quest Diagnostics this morning to have my blood drawn (checking TSH and free T4). I happened to sit next to a gal who looked to be in her late 20s or early 30s, very professionally dressed, nicely made up, and I got to chatting with her after she sighed deeply when other people got called in before her. I suggested she make an appointment next time because I had found that cuts the wait time in half. She was basically a funny, not-too-bitter person who just happened to be a little pissed off that she had to wait so long to get her blood drawn. But the comical part was that she said, “Son of a bitch!” pretty loudly twice in our conversation. One time was when she was describing how her veins “disappear” when the phlebotomist tries to pin them down for blood, and I can’t remember what the context of the second “son of a bitch” was, but it was pretty loud, and it was pretty stinkin funny coming out of this professional-looking, otherwise soft-spoken woman.
Sunday, May 17, 2009
Feelin' Poorly
I’ve been in a bad mood all day today. I can’t stand myself! Gone is the feeling of peace. Gone is the feeling that God is here for me. I feel empty and alone and back to my former hair-trigger-temper, irrational self. But I will say that this absolutely sucks.
Where am I on this thyroid cancer rollercoaster? I’m waiting for the second opinion on my original pathology report. It wasn’t done as of Friday, so I’m expecting it to be done next week. After that, I’ll probably get another radioactive iodine treatment dose. So in preparation for that, I stopped taking my Synthroid this morning. In order to get the RAI tx (this is shorthand for “treatment”) before Jack is out of school for summer, I’d need to get the dose the week of June 8. This would put me in isolation June 8-15-ish and sorta back to normal by June 18, which is Jack’s last day of school. I don’t really know how it would work to have to do the RAI while Jack is out of school for summer. He’d have to be somewhere else during the day--not here at home, where a radioactive me will be holed up in the master bedroom. And that would be a bummer, so I want to get ’er done before school’s out.
Everything has been different since I went back on my Synthroid and it started to build up in my system again. I was only on it for 4 weeks, but it had already gotten me back to that familiar hyperthyroid irritability I hate so much. I’m glad I went off it today, because I miss that calm feeling I had while I was hypo. Hopefully it will kick back in soon. The bummer is I can’t be hypo for long. I have to be kept hyperthyroid as part of my thyca recurrence prevention plan.
Where am I on this thyroid cancer rollercoaster? I’m waiting for the second opinion on my original pathology report. It wasn’t done as of Friday, so I’m expecting it to be done next week. After that, I’ll probably get another radioactive iodine treatment dose. So in preparation for that, I stopped taking my Synthroid this morning. In order to get the RAI tx (this is shorthand for “treatment”) before Jack is out of school for summer, I’d need to get the dose the week of June 8. This would put me in isolation June 8-15-ish and sorta back to normal by June 18, which is Jack’s last day of school. I don’t really know how it would work to have to do the RAI while Jack is out of school for summer. He’d have to be somewhere else during the day--not here at home, where a radioactive me will be holed up in the master bedroom. And that would be a bummer, so I want to get ’er done before school’s out.
Everything has been different since I went back on my Synthroid and it started to build up in my system again. I was only on it for 4 weeks, but it had already gotten me back to that familiar hyperthyroid irritability I hate so much. I’m glad I went off it today, because I miss that calm feeling I had while I was hypo. Hopefully it will kick back in soon. The bummer is I can’t be hypo for long. I have to be kept hyperthyroid as part of my thyca recurrence prevention plan.
Monday, May 11, 2009
Hypo To Hyper
Yesterday was Mother’s Day.
I felt different yesterday—like there was a shift in gears on my trip from hypo to hyper. I was more agitated, less calm, less easy-going, hotter, sweatier, more anxious, more tense, and more stressed. I think all the great side effects of being slightly hypo are starting to disappear, and that sucks! And it’s extra disconcerting to feel a major change from one day to the next.
I went to church yesterday morning with Jack and Brendan, and the pastor read John 15:1-8.
“I am the true vine, and my Father is the farmer. Every branch in me that bears not fruit he takes away: and every branch that bears fruit, he purges it, that it may bring forth more fruit. Now you are clean through the word which I have spoken to you. Abide in me, and I in you. As the branch cannot bear fruit of itself, except it abide in the vine; no more can you, except you abide in me. I am the vine, you are the branches: He that stays in me, and I in him, the same brings forth much fruit: for without me you can do nothing. If a man abide not in me, he is cast forth as a branch, and is withered; and men gather them, and cast them into the fire, and they are burned. If you abide in me, and my words abide in you, you shall ask what you will, and it shall be done to you. Herein is my Father glorified, that you bear much fruit; so shall you be my disciples.”
--John 15: 1-8, American King James version
Today, a day later, I can’t remember exactly what in that spoke to me yesterday. Something about that passage got to me. I can’t remember what, though. I have a headache today and feel very tired. I took a nap before I picked up Jack at school this afternoon. Pommy is home sick today with a cold. Jack had a cold last Thursday, so maybe I’m just fighting off a little virus.
I felt different yesterday—like there was a shift in gears on my trip from hypo to hyper. I was more agitated, less calm, less easy-going, hotter, sweatier, more anxious, more tense, and more stressed. I think all the great side effects of being slightly hypo are starting to disappear, and that sucks! And it’s extra disconcerting to feel a major change from one day to the next.
I went to church yesterday morning with Jack and Brendan, and the pastor read John 15:1-8.
“I am the true vine, and my Father is the farmer. Every branch in me that bears not fruit he takes away: and every branch that bears fruit, he purges it, that it may bring forth more fruit. Now you are clean through the word which I have spoken to you. Abide in me, and I in you. As the branch cannot bear fruit of itself, except it abide in the vine; no more can you, except you abide in me. I am the vine, you are the branches: He that stays in me, and I in him, the same brings forth much fruit: for without me you can do nothing. If a man abide not in me, he is cast forth as a branch, and is withered; and men gather them, and cast them into the fire, and they are burned. If you abide in me, and my words abide in you, you shall ask what you will, and it shall be done to you. Herein is my Father glorified, that you bear much fruit; so shall you be my disciples.”
--John 15: 1-8, American King James version
Today, a day later, I can’t remember exactly what in that spoke to me yesterday. Something about that passage got to me. I can’t remember what, though. I have a headache today and feel very tired. I took a nap before I picked up Jack at school this afternoon. Pommy is home sick today with a cold. Jack had a cold last Thursday, so maybe I’m just fighting off a little virus.
Tuesday, May 5, 2009
Ouch
Today is my third day in a row with a migraine. I gave myself one shot of Imitrex Sunday, two shots yesterday and one shot so far today. My paranoid side wonders if it has to do with cancer growth in my neck because the migraine seems to be emanating from there. Although I have great faith in God and know He is here for me, I have had a lot of thoughts lately about the “what if”s. (What if I have more extensive cancer than is known? What if I have metastases to my lungs? They are often inoperable. What if I have non-Hodgkin’s lymphoma? I don’t know why I wonder this, but since I noticed a slight, sometimes-uncomfortable swelling in my right armpit last November [2008], I’ve wondered about some kind of lymphoma. I don’t even know why this entered my mind—I have no idea what the symptoms are, and I don’t think I’ve been anal enough to research it on the Internet yet, but it has been in my mind.) All the what ifs are probably a normal response to knowing that I have persistent cancer at this very moment. People probably typically feel this way if they get a cancer diagnosis—or are reminded of their fallibility with a “persistent cancer” re-diagnosis.
That’s the weird thing, though, and something I want to share with people: Knowing I have an active cancer right now has resulted in tons of positive changes. That knowledge has had the following effects on me:
1. I care more about people and my relationships with them. Really, that’s the most important thing in life. All the other stuff is irrelevant.
2. I want to do more nice things for the people who mean the most to me.
3. I don’t want to waste time doing things that are not truly necessary or that do not contribute to the world being a better place.
4. I want to write this book and leave it for my kids…to show them how God has proved His existence to me, changed me, changed our family and had a positive effect on all our lives…all due to thyroid cancer.
5. I want to invest more time in relationships with people who really have my back.
6. I’m listening to music more.
7. I’m living life more fully.
8. I’m trying to have a softer personality. I’m getting along much better with Pommy, the kids, and everybody.
9. I’m trying harder not to sweat the small stuff.
10. I’m talking to people more when I’m out—cashiers, other customers in Costco, just the faces you pass on a day-to-day basis and which are so easy to ignore, but life feels so much richer when you take the time to talk to people.
11. I’m living life more fearlessly.
12. I speak my mind more (probably to the chagrin of some).
13. I’m not being so self-conscious; I don’t care so much (or at all) what people think of me.
14. I feel forgiven and deserving.
The last thing—feeling forgiven and deserving—is huge for me. Since I came to the Lord in 2003, I have known that He forgives me for everything, but I finally feel worthy of being forgiven…like I can let myself off the hook, stop punishing myself for all the wrongs I’ve done in this life, and once and for all accept His forgiveness because:
• He shed his blood on the cross for me and my sins
• I’m not so bad after all.
For years and years, I have shortchanged myself in so many little and big ways. Here are a few examples, ranging from the minuscule to the monstrous: I wanted a wooden spoon for years, and I would pick one up in Target, look at it, ponder the less-than-$5 price, and think “I don’t need this,” and put it back, only to do the same thing the next time I was in Target. Finally, one of my best girlfriends gave me a slew of cooking and baking equipment for my wedding, and among the things she included was a green-handled wooden spoon. I love that thing and I still use it today, almost 10 years later. (When it wears out or breaks, I will replace it. Why? Because I, Lynn Pomije, deserve to own a wooden spoon.)
For years, in restaurants, I have robbed myself of beverages. I’ll let the kids order drinks, Pommy gets a drink, and I think “Lynn, just have water,” and most of the time, I settle for the water. It’s a money-saving thing (Really? Saving $1 to $2 is that important?), and it’s a “deserving” thing. Everybody else deserves a drink, but I don’t. So dumb. Lately God has been reminding me that I matter, that I count, and that translates into me deserving a Diet Coke with dinner! And a wooden spoon for cooking!
That’s the weird thing, though, and something I want to share with people: Knowing I have an active cancer right now has resulted in tons of positive changes. That knowledge has had the following effects on me:
1. I care more about people and my relationships with them. Really, that’s the most important thing in life. All the other stuff is irrelevant.
2. I want to do more nice things for the people who mean the most to me.
3. I don’t want to waste time doing things that are not truly necessary or that do not contribute to the world being a better place.
4. I want to write this book and leave it for my kids…to show them how God has proved His existence to me, changed me, changed our family and had a positive effect on all our lives…all due to thyroid cancer.
5. I want to invest more time in relationships with people who really have my back.
6. I’m listening to music more.
7. I’m living life more fully.
8. I’m trying to have a softer personality. I’m getting along much better with Pommy, the kids, and everybody.
9. I’m trying harder not to sweat the small stuff.
10. I’m talking to people more when I’m out—cashiers, other customers in Costco, just the faces you pass on a day-to-day basis and which are so easy to ignore, but life feels so much richer when you take the time to talk to people.
11. I’m living life more fearlessly.
12. I speak my mind more (probably to the chagrin of some).
13. I’m not being so self-conscious; I don’t care so much (or at all) what people think of me.
14. I feel forgiven and deserving.
The last thing—feeling forgiven and deserving—is huge for me. Since I came to the Lord in 2003, I have known that He forgives me for everything, but I finally feel worthy of being forgiven…like I can let myself off the hook, stop punishing myself for all the wrongs I’ve done in this life, and once and for all accept His forgiveness because:
• He shed his blood on the cross for me and my sins
• I’m not so bad after all.
For years and years, I have shortchanged myself in so many little and big ways. Here are a few examples, ranging from the minuscule to the monstrous: I wanted a wooden spoon for years, and I would pick one up in Target, look at it, ponder the less-than-$5 price, and think “I don’t need this,” and put it back, only to do the same thing the next time I was in Target. Finally, one of my best girlfriends gave me a slew of cooking and baking equipment for my wedding, and among the things she included was a green-handled wooden spoon. I love that thing and I still use it today, almost 10 years later. (When it wears out or breaks, I will replace it. Why? Because I, Lynn Pomije, deserve to own a wooden spoon.)
For years, in restaurants, I have robbed myself of beverages. I’ll let the kids order drinks, Pommy gets a drink, and I think “Lynn, just have water,” and most of the time, I settle for the water. It’s a money-saving thing (Really? Saving $1 to $2 is that important?), and it’s a “deserving” thing. Everybody else deserves a drink, but I don’t. So dumb. Lately God has been reminding me that I matter, that I count, and that translates into me deserving a Diet Coke with dinner! And a wooden spoon for cooking!
Monday, May 4, 2009
Another Radioactive Iodine Treatment?
I saw my endo today. She won't order PET/CT to look further for the source of the Tg (she's pretty insistent about this, which is annoying, because I'm under the impression that's the most logical next step).
My endo is pro-another radioactive iodine treatment dose (the kind where I'm isolated for 7 days), but without knowing exactly where the Tg-making tissue is and having an idea of its dimensions, I feel uncomfortable moving forward with another round of RAI. I had 5 lymph nodes removed last Feb. in initial surgery, and all 5 were malignant. So chances are there are more malignant lymph nodes, although none are currently showing themselves to be enlarged and/or suspicious. Humpf.
Endo is referring me to a general surgeon for consultation, but it's not the
expert thyroid surgeon I want (I'm on HMO and endo says she cannot refer me to
the awesome USC out-of-network surgeon since she has referred pts. to this in-network general surgeon for same type of surgery--endo says asking her to refer me to
out-of-network surgeon is asking her to do the impossible), and in the end, my
endo thinks I should just have another RAI treatment, anyway, and I'm sure she's
expecting me to meet with the surgeon, decide to do RAI and come back to her
(endo) for RAI.
Incidentally, while all this has been going on, I am paying out of pocket to get an
expert second opinion on my original pathology so I can know for sure whether my original diagnosis of papillary carcinoma (no variant) was accurate and move forward with treatment more confidently. It will probably take several weeks to get the second opinion (just FedEx'd the package with my tissue samples today...it’s going to Dr. Virginia LiVolsi, an expert in thyroid cancer pathology, at the Hospital of the University of Pennsylvania).
My endo is pro-another radioactive iodine treatment dose (the kind where I'm isolated for 7 days), but without knowing exactly where the Tg-making tissue is and having an idea of its dimensions, I feel uncomfortable moving forward with another round of RAI. I had 5 lymph nodes removed last Feb. in initial surgery, and all 5 were malignant. So chances are there are more malignant lymph nodes, although none are currently showing themselves to be enlarged and/or suspicious. Humpf.
Endo is referring me to a general surgeon for consultation, but it's not the
expert thyroid surgeon I want (I'm on HMO and endo says she cannot refer me to
the awesome USC out-of-network surgeon since she has referred pts. to this in-network general surgeon for same type of surgery--endo says asking her to refer me to
out-of-network surgeon is asking her to do the impossible), and in the end, my
endo thinks I should just have another RAI treatment, anyway, and I'm sure she's
expecting me to meet with the surgeon, decide to do RAI and come back to her
(endo) for RAI.
Incidentally, while all this has been going on, I am paying out of pocket to get an
expert second opinion on my original pathology so I can know for sure whether my original diagnosis of papillary carcinoma (no variant) was accurate and move forward with treatment more confidently. It will probably take several weeks to get the second opinion (just FedEx'd the package with my tissue samples today...it’s going to Dr. Virginia LiVolsi, an expert in thyroid cancer pathology, at the Hospital of the University of Pennsylvania).
Sunday, May 3, 2009
Cancer is a Systemic Disease
--- On Thu, 4/30/09, lpomije
22--what next?
To: thyroidcancerhelp@yahoogroups.com
Date: Thursday, April 30, 2009, 3:06 PM
Dear Dr. Ain,
My stats:-Nov. 2007 neck ultrasound reveals 3 nodules with
calcifications -Jan. 2008 FNA inconclusive but suspicious for follicular
neoplasm -Near-total thyroidectomy Feb. 2008 due to intraoperative
papillary thyca diagnosis -5/5 lymph nodes removed positive for
papillary thyca -150 mCi RAI March 2008 -April 2009 with a TSH of 60.27,
Tg is 22, no Tg antibodies -I-123 full-hypo and LID prep WBS April 2009
shows linear area of uptake in right surgical thyroid bed, measuring
about 2 cm long -FNA was scheduled for this morning but was cancelled
after pre-FNA ultrasound failed to show any thyroid tissue or enlarged
nodes or anything suspicious whatsoever to biopsy. What now? Chest CT?
PET scan? Empiric RAI tx? Surgery?
I've read all the ATA guidelines and NCCN guidelines and would like to
know what your approach to a situation like this would be.
Thank you, Dr. Ain. With great respect, Lynn in California
Subject: Persistent thyroglobulin equals persistent tumor
Dear TCH Members,
Sometimes physicians have "tunnel vision". They forget that thyroid cancer is a
systemic disease (involving the entire body). They focus on the neck and avoid
evaluating the remainder of the body for metastatic tumor. Elevated
thyroglobulin levels mean that a thyroid cancer patient (after previous
thyroidectomy and radioiodine therapy) has persistent or metastatic disease.
Such tumor is either microscopic (in deposits too small to be detected by
diagnostic studies) or sufficiently macroscopic to be able to be detected. This
can only be determined by a conscientious and comprehensive effort to search for
tumor (PET scans, CT scans, ultrasounds, etc.). Sometimes, if iodine-non-avid
disease has not been established as present, an empiric radioiodine therapy
(with excellent hypothyroid and low iodine diet preparation) is warranted to see
if the post-therapy whole body scan is positive and the thyroglobulin diminishes
in response. If such an approach
proves unfruitful, then it is important to pursue evidence for macroscopic
tumor.
**************PLEASE BE ADVISED*********************
THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED
FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD
IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY
PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN
PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.
************************************************
Kenneth B. Ain, M.D.
Professor of Medicine & The Carmen L. Buck Chair of Oncology Research
Director, Thyroid Oncology Program
Division of Endocrinology & Molecular Medicine
Department of Internal Medicine, Room MN524
University of Kentucky Medical Center, 800 Rose Street, Lexington, KY
40536-0298
& Director, Thyroid Cancer Research Lab., Veterans Affairs Med. Cntr, Lexington,
KY
22--what next?
To: thyroidcancerhelp@yahoogroups.com
Date: Thursday, April 30, 2009, 3:06 PM
Dear Dr. Ain,
My stats:-Nov. 2007 neck ultrasound reveals 3 nodules with
calcifications -Jan. 2008 FNA inconclusive but suspicious for follicular
neoplasm -Near-total thyroidectomy Feb. 2008 due to intraoperative
papillary thyca diagnosis -5/5 lymph nodes removed positive for
papillary thyca -150 mCi RAI March 2008 -April 2009 with a TSH of 60.27,
Tg is 22, no Tg antibodies -I-123 full-hypo and LID prep WBS April 2009
shows linear area of uptake in right surgical thyroid bed, measuring
about 2 cm long -FNA was scheduled for this morning but was cancelled
after pre-FNA ultrasound failed to show any thyroid tissue or enlarged
nodes or anything suspicious whatsoever to biopsy. What now? Chest CT?
PET scan? Empiric RAI tx? Surgery?
I've read all the ATA guidelines and NCCN guidelines and would like to
know what your approach to a situation like this would be.
Thank you, Dr. Ain. With great respect, Lynn in California
Subject: Persistent thyroglobulin equals persistent tumor
Dear TCH Members,
Sometimes physicians have "tunnel vision". They forget that thyroid cancer is a
systemic disease (involving the entire body). They focus on the neck and avoid
evaluating the remainder of the body for metastatic tumor. Elevated
thyroglobulin levels mean that a thyroid cancer patient (after previous
thyroidectomy and radioiodine therapy) has persistent or metastatic disease.
Such tumor is either microscopic (in deposits too small to be detected by
diagnostic studies) or sufficiently macroscopic to be able to be detected. This
can only be determined by a conscientious and comprehensive effort to search for
tumor (PET scans, CT scans, ultrasounds, etc.). Sometimes, if iodine-non-avid
disease has not been established as present, an empiric radioiodine therapy
(with excellent hypothyroid and low iodine diet preparation) is warranted to see
if the post-therapy whole body scan is positive and the thyroglobulin diminishes
in response. If such an approach
proves unfruitful, then it is important to pursue evidence for macroscopic
tumor.
**************PLEASE BE ADVISED*********************
THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED
FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD
IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY
PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN
PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.
************************************************
Kenneth B. Ain, M.D.
Professor of Medicine & The Carmen L. Buck Chair of Oncology Research
Director, Thyroid Oncology Program
Division of Endocrinology & Molecular Medicine
Department of Internal Medicine, Room MN524
University of Kentucky Medical Center, 800 Rose Street, Lexington, KY
40536-0298
& Director, Thyroid Cancer Research Lab., Veterans Affairs Med. Cntr, Lexington,
KY
Saturday, May 2, 2009
Proverbs 3: 5-6
I keep waking up in the middle of the night—a holdover symptom of being hypothyroid for a month that I can’t seem to shake, even now that I’ve been back on Synthroid for 2 weeks now. Sometimes I watch an episode of “House” or the third period of the Ducks game from the night before or something that’s been Tivo-d. Last night I watched an entire movie I’ve always wanted to see—“50 First Dates” with Adam Sandler and Drew Barrymore. A few nights ago—once again, in the middle of the night, when I woke up and couldn’t get back to sleep--I discovered this gospel music channel and I saw a video of a song called “Held” by Natalie Grant, and I just downloaded it from iTunes because it is so beautiful. Here are the lyrics:
Held
Performed by Natalie Grant
Written by Christa Nichole Wells
Lyrics © Warner/Chappell Music, Inc.
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair.
Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
I cannot help but think that God is preparing me for the future—that He is growing my faith during this relatively small trial in preparation for some much larger sorrow in the future. Because I have a long history of being dramatic, loving the dramatic, inviting chaos into my life or, failing that, creating it, I wonder if this suspicion is me—my flesh—being overly dramatic or whether God is preparing me for the future.
Whatever He’s doing, it’s all for His glory. I know that now.
I went to lunch today with 5 other gals from the alto section of the choir at church, and for the first time in a long time, I didn’t get nervous and self-conscious and weird about meeting with a group of ladies. Don’t ask me why—I don’t know why!—but that kind of thing has always made me SOOOO anxious and tense, even if I liked all the ladies. I feel different now. I feel God changing me. I feel God working in my life. I feel God working on my personality. I feel more free. I feel more open to His will. I feel more open in general.
I feel happier.
Several years ago, when I was going through what was then the most heart-wrenching emotional time I’d yet experienced with my then-11-year-old son and his dad, my ex-husband, I relied on this verse every day:
“Trust in the Lord with all your heart; and lean not to your own understanding.
In all your ways acknowledge him, and he shall direct your paths.”
--Proverbs 3: 5-6, American King James version
The verse didn’t fail me then, and it isn’t failing me now. The more I trust in the Lord, the more He directs my paths. The less I try to control things, and consequently the more I let Him control things, the easier everything gets.
In church this morning:
“Therefore I will look to the LORD; I will wait for the God of my salvation: my God will hear me.”
--Micah 7:7, American King James version
Held
Performed by Natalie Grant
Written by Christa Nichole Wells
Lyrics © Warner/Chappell Music, Inc.
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair.
Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
I cannot help but think that God is preparing me for the future—that He is growing my faith during this relatively small trial in preparation for some much larger sorrow in the future. Because I have a long history of being dramatic, loving the dramatic, inviting chaos into my life or, failing that, creating it, I wonder if this suspicion is me—my flesh—being overly dramatic or whether God is preparing me for the future.
Whatever He’s doing, it’s all for His glory. I know that now.
I went to lunch today with 5 other gals from the alto section of the choir at church, and for the first time in a long time, I didn’t get nervous and self-conscious and weird about meeting with a group of ladies. Don’t ask me why—I don’t know why!—but that kind of thing has always made me SOOOO anxious and tense, even if I liked all the ladies. I feel different now. I feel God changing me. I feel God working in my life. I feel God working on my personality. I feel more free. I feel more open to His will. I feel more open in general.
I feel happier.
Several years ago, when I was going through what was then the most heart-wrenching emotional time I’d yet experienced with my then-11-year-old son and his dad, my ex-husband, I relied on this verse every day:
“Trust in the Lord with all your heart; and lean not to your own understanding.
In all your ways acknowledge him, and he shall direct your paths.”
--Proverbs 3: 5-6, American King James version
The verse didn’t fail me then, and it isn’t failing me now. The more I trust in the Lord, the more He directs my paths. The less I try to control things, and consequently the more I let Him control things, the easier everything gets.
In church this morning:
“Therefore I will look to the LORD; I will wait for the God of my salvation: my God will hear me.”
--Micah 7:7, American King James version
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