Tuesday, November 18, 2008

References to more info on Thyroid cancer

In case you are interested, here are some links we've used to learn more about thyroid cancer:
www.thyca.org - great for getting recipes for low iodine diet
Various Wikipedia articles: papillary thyroid cancer, follicular thyroid cancer, thyroid, iodine 131, tsh, etc.
The Thyroid Blog - thyroid.blogspot.com
www.cancernetwork.com
http://www.cancer.org/docroot/cri/content/cri_2_4_5x_what_should_you_ask_your_physician_about_thyroid_cancer_43.asp
www.endocrineweb.com
www.thyroidcancer.com

Honestly, sometimes I wonder what I did before the Internet...

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Update on Pam

I really haven't been as diligent in keeping up with this as I should have, so I'm just going to skip to now.

I am on the way to work (on Trax) after Pam's radiation treatment. They gave her 100 (whatever the unit is, I can't remember) dosage of radioactive Iodine, a pretty standard dosage. The doctor that spoke with us was actually very optimistic about how things were looking. She said the surgeon did a very good job of removing the thyroid tissue, that there was very little remaining. She told us that in reality the surgery cured Pam, the radiation was just a little bit of cleanup - just a precaution. She also painted a more optimistic picture about Pam's radiation levels and duration - she said Pam would really be fine after 72 hours to be around people. Realistically, if she did not sleep in the same bed with anyone and used her own bathroom, she could really be around people after 24 hours. Even if Pam were to be around people immediately and constantly for the next three days, the level of radiation someone else would receive would only be about equivalent of getting a chest x-ray. That took a lot of stress off Pam - she's really been worried about the effect she will have on others.

We are going to see if Pam can shorten her hotel stay to come home Thursday instead of Friday. The way she put it, two days is like a vacation, three days starts to get depressing. Pam is staying at a hotel here in Salt Lake, not too far from where I work, so I can get her anything she might need pretty much anytime. Pam needs to do the standard things like stay away from people for the most part, flush the toilet twice (and go often), etc. but the doctor was not concerned about her bedding being laundered along with others. Pam was going to ask them to launder her bedding separately but the doctor said not to even worry about it. There really shouldn't be any side effects to the treatment - perhaps a little nausea, maybe some soreness in the salivary glands, but it shouldn't be to bad. I think the hardest thing she'll face will be boredom in the hotel, so it'll be a good thing if she can come home a day earlier.

The doctor told us that Pam was right on the border of being a low-risk or a standard risk. Given the size of the nodules found, she would be a low-risk (.7 cm and .35 cm). However, because some of the suspect tissue extended to the positive margin, or close to the area of surgical removal, that would move her more to a standard risk, because there would be a small chance that cancerous tissue had extended beyond the thyroid.

Some other really great news was that she can go off the low iodine diet by lunch Wednesday. I am going to bring her one of her favorite things ever for lunch Wednesday to celebrate - a sweet pork salad from Costa Vida. She is DEFINITELY looking forward to that. Not knowing when she'd be off the diet and how long she'd have to stay in the hotel for sure, she packed plenty of iodine-free food that she won't need now. She was very encouraged by finding out she was at such a low risk of affecting anyone else and could actually come home sooner.

The doctor recommended that she drink lots of water to flush her system, and chew lots of gum or sour candy to keep saliva moving. On the way out of the hospital I stopped at the gift shop to get her some gum and sour candy and was going to leave it in the car for her (I drove her to the hospital, then she was going to keep the car and drive to the hotel and have me take Trax back to work). It took so little time for her to get the treatment (she just drinks some water with the radioactive Iodine in it) that by the time I was done in the gift shop we actually met in the hall on our way out. That was kind of weird. We walked on opposite sides of the hall. When we had to part ways I handed her the gum and candy and couldn't help but sneak a very quick kiss on the forehead.

Pam is able to start on Thyroid hormone pills tomorrow. We hadn't gotten the prescription for that yet so Pam is going to have her doctor call that in and I will take it to her tomorrow morning. Pam was also encouraged when the doctor stated that she would be more or less back to normal energy levels within a week or week and a half. After that there would be fluctuations as everything kind of evens out and her body adjusts, but she should at least expect to have her energy and metabolism at near normal within a week and a half. The doctor told me that I would then have my wife back. The kind of made me wonder - where did she go? Pam has handled this whole thing wonderfully since the surgery, I've thought. Sure she's been a little tired and has had muscle fatigue and just moved a little slower in general, but it's not like she was a completely different person. But both Pam and I are very excited for her to get her energy back.

We have wonderful family, friends and neighbors that have helped in major ways that have taken so many burdens from us. Bringing meals, watching kids, arranging (and even funding...Thanks Matt!!!) hotel stays, picking up and dropping off kids at school/dance/scouts, raking our leaves, making special bread or other food for Pam, taking over church assignments, helping remodel our bedroom, getting Pam movies and books to watch in the hotel, the list goes on and on, and I know I am probably forgetting a lot. I don't believe I (or our family for that matter) have ever been recipients of so much service. It is a real testimony to me of service in action, of the power of community. It's reminded me that this is what the gospel is all about - serving others. Sometimes I get too caught up in just going to all my meetings, doing my duty, doing all the things I feel like I am supposed to do as an active member of the church, getting caught up in the administration of it all, and forget what it truly is all about. I know that all those that have rendered service in our behalf have done it with a true spirit of Christ-like love - no strings attached, no expectation of anything in return, just a true motivation to make life easier for us. Having said that, I do fully expect and hope to be able to return so much of the service; partly, I admit, because of a little guilt and the fact that I feel in debt to people, but also just so that I can help make others burdens lighter as our burdens have been made lighter. So to all those reading this that have helped our family, a great big sincere Thank You!

There have been so many others that have wanted to help, and either because of distance, or because I'm just not good at communicating what we need, or because we have already had so many of our needs met, they did not get an opportunity to help perhaps as much as they would have liked. But we have felt their prayers in our behalf, and that has truly been appreciated.

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Sunday, November 09, 2008

random stuff

For those of you wanting to know what's up - I'm going in for the radiation stuff next week - the 17th and 18th. Josh will post more details later. My TSH levels have shot up so high that I am exhausted and emotional and having to do this frustrating diet where I really can't eat anything, so I don't like to think about it all or it makes me cry. I have to be really good about the diet or the radiation won't work as well and then I have to do surgery and radiation again. I'm not going to do that. The struggle right now is to not let my TSH levels get any higher than they are, but get through the two weeks on the low iodine diet.

Anyway, the kids realize that mom is a little off and have been pretty clingy lately. James is so cute though. He was singing a song the other day from Sid the Science Kid. He was telling me about Sid and how Sid loved his mom and thought his mom was cool. So I asked him, do you love your mom? He smiled and said yes. Then I said, and you think your mom is cool too huh.... He said no, my mom is cute, my dad is cool and awesome. I thought it was pretty cute.

I've also lost weight with everything so Andrew was asking me the other day why I am a little mom now. He said he is going to be able to be bigger than me faster now. He was pretty excited about that. I'm finally about the same size I was before I had James, which is great, but not the way I planned on getting back into my fun clothes. Before James I was exercising all the time, I was going to a Body Pump class at the gym (I LOVE that class)...I was in good shape. Then James came and I wasn't sleeping much, cause he didn't, ended up in the hospital with pneumonia and everything has just seemed to go downhill from there. Now five surgeries later, I'm hoping that I won't have any more and I can start getting back to my same old healthy self. That's the plan. Anyway, I've been resting a lot. Just walking up the stairs right now makes my legs shaky and I have to lay down. Josh will post technical details later, cause he does that kind of thing.

Josh has been totally spoiling me though. It's been so nice to have such a nice room put together with love from my incredible friends and an amazing husband who spoils me. There's nothing like a little bump in your life to let you know that you have lots of friends that love you and an amazing family. I'm very very grateful for all of you.

I need to post pics of our halloween. We had a Halloween party with Josh's family early Oct, which was great. Josh was a vampire, I was a vampiress, Connor was a rockstar, Emmalee a witch, Andrew a football player, and James was the big bad wolf. They were all so cute. Halloween night I really didn't feel too good, so I didn't dress up. It made me sad, but I just didn't have enough energy to be in costume. I dressed in my cozy clothes and sat on the steps to hand out candy. I was glad it was a warmer night because all of this thyroid stuff makes me freezing cold all the time. I just pray that they will be able to kill all the cancer with the radiation stuff and not have to do surgery and radiation again. This isn't my favorite thing. I even missed two parties this last week. I hate missing parties. I tell people that I'm always good for a party, but not this time. There will be more parties. When I really feel yucky I just imagine myself being in St George for Thanksgiving, warm, relaxing by the pool, sitting in a nice condo cleaned by someone else. :) If the timing of all of this works out (which I'm planning on) I will totally be there!

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Saturday, November 08, 2008

Latest status on Pam 11/8/2008

[I started this yesterday and haven't finished it yet...in the meantime Pam posted her last blog, so some of this might be repetitive]

We haven't gotten around to updating this for a few days. On the 4th we went to the endocrinologist. He explained what we mostly already knew from the pathology report, that there was papillary cancer found, and that it had extended to the edge of the thyroid. He didn't seem nearly as concerned as the surgeon about the cancer having spread to the edge of the thyroid - he was quite optimistic. The primary nodule was about .7cm, which is relatively small, but there were others found. He said that with just one nodule only .7cm that some doctors may not even pursue the radiation, but where there were multiple nodules and it extended to the edge, radiation was going to be necessary, which we were already expecting.

The Low Iodine Diet


And so the fun begins. The thyroid is a unique organism in the body in that it is the only thing that processes iodine. This means that instead of needing chemotherapy or other more drastic cancer treatments, you can ingest radioactive iodine. They thyroid, or any remaining thyroid cells rather, will suck up the iodine and be killed. To make this treatment effective, your body needs to be depleted of iodine to insure that the thyroid cells are deficient and readily "suck up" any iodine introduced into the body. This means a low iodine diet for two weeks before they will do radiation treatment. At first this didn't sound so bad, until we realized just how limited this diet was going to be. No dairy. No egg yolks. No iodized salt (non-iodized is easy enough to find, but regular salt is used in just about everything). No seafood. No commercial bakery products, chocolate, red #3, soy, potato skins, and a bunch of other stuff. This was turning into a real pain, but as of today (the 9th) I'm more inclined to say that now that we've got it figured out it's not so bad. One of our neighbors has been making us a special bread that uses no eggs or milk. That has been a life saver for Pam. There is a "Good Earth" store off Riverdale Rd. that has tortilla chips, and that has also been really nice. Another neighbor has brought us over plenty of meat that is straight from the butcher with no added preservatives, seasonings, etc. Actually I was a little jealous of Pam's steak she made for herself the other day...Pam's also been eating lots of fruit and vegetables, fruit juices, and unsalted almonds and cashews.

So many people have provided so much for us. We have wonderful family, neighbors and friends. There is no way I could list all the things people have done for us the past few weeks, and have offered to do for us in the next few weeks. I have to go but I don't want to end up not posting this for another day so I'm posting what I have...more later.

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