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...

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.

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!

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.

Appt with Endocrinologist

So I was able to schedule an appointment with the endocrinologist for Nov 4th, next Tuesday - which I called my surgeon and he said that is perfectly fine to wait a week. He said if it was two weeks he would push to get it closer for me, but one week will be fine. I'm sure we will come up with an action plan next week then.

Pam's Surgery

Pam went in for surgery at 10:00 am this morning to have the rest of her thyroid removed. The surgeon just came and spoke with me at about 11:50 am to say that everything went well. She is currently in recovery, and will be in her room in about 20 minutes. We're planning on her being here overnight, but depending on how things go, she may come home tonight. I'll post more later.

8:20 pm
Pam is recovering well, she will be coming home tomorrow (probably late morning or afternoon). Unfortunately I had to run home to transfer kids when the doctor came in to explain how everything went. But according to Pam, he didn't really say much. He said that the surgery all went well and that they removed any tissue that would have had any cancer in it. I had assumed they were going to biopsy what they removed right during the surgery (they had said this was one reason for the surgery taking a little longer than normal) but the doctor didn't really say anything about what they found. He said he wanted to wait until they got the lab results back because he wasn't entirely sure of what exactly he was dealing with yet, and I guess he just didn't want to say something and be wrong. So we are now waiting until Oct. 27th when has her next appointment where the doctor will go over the results with her. I am assuming that we will learn at that time if any radiation treatment is necessary, but I kind of got the impression that the doctor was thinking it wouldn't be necessary. Unfortunately I don't have a lot of definite answers yet. If I have any more clarifications, I'll write more.

Pam has a very small drainage tube in her neck that will come home with her. It will be removed Monday. She really is doing quite well. She has a sore throat for some reason though. Of course, they've got her on pretty heavy morphine right now, so we'll see how things go when she gets ready to come home.

On a side note, things have been pretty crazy. For Pam's birthday she decided that she wanted to redecorate our bedroom. We have a lady in our ward that is quite the interior decorator and really wanted to help Pam with this project. She has jumped in with both feet and, holy cow, the scope has certainly gone beyond a few pictures and decor to go on the wall that Pam initially envisioned. So far we have a new bed frame to lift the bed higher off the floor, we tiled our bathroom and put beadboard up on the walls, as well as quite a bit of molding and new paint. We have all new paint in our bedroom - the fancy-shmancy kind that is all textured and, well, kinda cloudy looking - I am not a designer, I don't know what you call it, but it looks VERY nice. I'll have to post a picture when it's done. The lady doing all this wants before and after pictures to kind of get her started doing this as a business, so I'll have pictures. She has pulled all kinds of strings - a dresser from the classifieds for $50 that she completely refinished and looks VERY nice - two nightstands that she had (and says she wasn't going to use, but I'm not so sure) that she refinished and put a really cool distressed look on - they look like they are out of an antique store. We got a new ceiling fan, new light fixtures in the bathroom, a new armoire. It turned in to quite the project - and it has been on an accelerated time frame so that Pam would be able to come home and enjoy her new bedroom/bathroom while recovering from surgery. The lady (she's even had her mom over helping, along with several of her kids) has been working day and night on this project. Man, do I owe some people big time!

In the middle of this, our water heater has started leaking. Well, it's been leaking for awhile, but it's getting worse. The bottom is all rusted out. It's going to give any day now. I called a guy in our ward who sells plumbing supplies to ask him some questions about getting a new one. He indicated that I could get a good deal going through him, and he could even have it delivered. I talked to him yesterday and was going to call him today to work out the details. Well, I never got to it, then I show up at about 6:00 pm back home from the hospital and there is a new water heater in my garage. Sweet. Two people from our ward have offered to help me install it - I don't think it will be too difficult, I just need to get some time somewhere in the next few days before our basement gets flooded.

When I came home from the hospital for a few minutes this afternoon our garage was off the track, and the tension cable was completely unwound and in a big mess. So I had that lovely project to deal with too. It took me about an hour of unsuccessful attempts to rewind the cable and get it hooked back up. I finally figured out the trick and once I did it the right way it only took me a few minutes to get it back on. Of course, earlier the kids had tried to force the garage down and with the spring only attached on one side it didn't come down straight, and the rails were all bent, one wheel was off, and the holder for that wheel was all bent. All that didn't take too long to fix though. Luckily Pam was just sleeping for most of the time I was gone.

All this after a really intense week or two of football video that had to be done for a banquet, a wedding video to finish up, a big slide scanning order (which I am scanning as I write this), coaching soccer, a video for our regional special needs primary, tons of stuff going on at work, a baptism video (which was my pleasure to do, Sandy - I've got it down now and I was able to crank that out pretty quickly), lots of church stuff, and a million other things. I literally have not had 10 minutes of downtime and way too many late nights. I keep thinking of that movie "Castaway" and what it must be like to be stranded on an island with nothing but time on your hands... I am SO looking forward to our Thanksgiving vacation in St. George. We'll just relax, have Thanksgiving dinner with my sister's family at Cracker Barrel, and just hang out. I think it's going to take a day or two just for my head to stop spinning... It was actually kind of nice to just sit with Pam in the hospital room for awhile (well, not so nice for Pam I am sure!) and not do anything but feed Pam ice chips and get out of the nurses way occasionally (and order food from the cafeteria "for Pam" which I promptly scarfed down - she certainly didn't want it, just ice chips and an occasional bit of yogurt.)

Well, this is turning into War and Peace so I am going to sign off - after all, our interior decorator is slaving away and probably giving me dirty looks behind my back as I sit at the computer...I'm off to paint/unpack a water heater/mount a jewelry cabinet/clean up/try to actually get the kids some late dinner/move furniture/who knows what else.