"Nucular" Woman

Okey dokey! So now I am emitting little invisible doses of radiation. Or "nucular" as G.W.B. was famous for saying. I took my radioactive iodine pill yesterday at the hospital and now all I have to do is lay low for a few days and no kissing with the hubby. :( No, i dont feel any different. I only need one dose and it doesnt make me feel sick. The best kind of cancer treatment! I am sleeping in the spare bedroom and I have to make sure and wipe down anything that is potentially contaminated. My toilet has never been so clean! It gets a regular wiping down several times a day! Drink, pee, drink, pee, repeat.

Good news is I finally get started on my synthroid now and I got my first dose today. Yay! I may as yet get back to feeling normal again, sometime........whatever normal was. At least I know where the bottom is and I survived. My goal now is one year from now to be stronger and leaner.

 True Joy when children choose to live good lives. 

 My cute daughter Kari went to the Temple for her Endowments yesterday. (you can find more info on Temples at www.mormon.org) So pleased at her commitments to keep on the right path. Gina was her surrogate mom for me. Thanks sweetheart. I love you both. Kari and Jonathan will be doing their sealing in about a month and I will look forward to being there with them for that.

 My cute son Evan submitted the first part of his mission papers this last week. He will make an awesome missionary! It's hard to believe that my little boy is already at this step. How did this happen so fast? I'm so excited for him.

 Gina and BJ have a happy little family that is blooming. Kenley is a chatty 2 yr old. Can't wait to give her lots of gramma hugs in a few weeks.

 Chris and Kari working hard and loving each other. They have plans and goals they are working to accomplish. (chris....you got a true angel wife) I am such a lucky mom to have been blessed with the privilege to be a part of these lives.

I love you all so much.

"Hypo Hell" and Yes, I feel crappy.

Time for an update. I haven’t checked in for a while and there are a few who have been asking about me and how things are going, especially since I have been AWOL from church a bit lately. You, my friends and family have been so sweet and caring. Thank you again.

I’m at a stalled point right now in my treatment and I have some questions that haven’t been answered to my satisfaction as yet by my endocrinologist right now. I have been going in for periodic blood draws to check my TSH level. It is supposed to rise to a point where the radioactive Iodine treatment will be most effective. My doctor wants it between 80 – 100. The first few weeks I was rising at a regular pace....30....60....then a slowed.....66.....then last week it went in the wrong direction to 64. What the heck?! For most people this process takes around four to six weeks and then the “Rai” treatment is done.  I’m about 8 weeks post surgery now and still waiting to have my radiation treatment and be able to get on medication that will level out my body chemistry back to a more normal state.

Meanwhile, yes, I feel pretty darn crappy as I sit in my hypothyroid state. Please excuse me for taking the opportunity to publicly whine for a bit but it might help give anyone else who may have to go through this an idea of what happens. All the support blogs call this state “hypo hell” and although I could very much be worse it is not very fun. Here is a description of what it has done to me:

 I have zero energy. By this I mean that doing the dishes I have to take a break in the middle to sit and rest a bit. Carrying a load of laundry up the stairs leaves me winded. My face is all puffy and swollen. I don’t as yet look like a complete freak, it still makes me self conscious to be seen as my eyes are so puffy and it extends down to making my neck really swollen. My hands are swelling so I am unable to wear my rings right now. My knee joints are getting swollen and ache. I have odd muscle spasms and cramps. My feet are cold. Loud noises like my dogs barking send me through the roof. My brain and thought process is very muddled and foggy so that I have a hard time searching for the right words. My taste is off a bit and things that should be sweet are slightly bitter. Most of the day I have this yearning to just lay in bed and either sleep or watch TV. Reading sometimes is even too much effort as I have to struggle to comprehend what I just read. My mood is hanging in there, but depression is a common element with this. I have my moments, but I don’t sit and weep. Mother’s Day was a bit hard for me to deal with being alone and away from all my family and my children.

So for those of you wondering how I am doing, you can stop here with this paragraph. Yes, I am surviving and enduring, but I feel like crap. I can still function and get around and do the minimum of what is needed for daily life. Beyond that I have to just put on hold anything that isn’t necessary. It’s all going to just take time to get back to normal.

For those who are interested in treatment details, feel free to plod on through the rest of this.

What my doctor has recommended is a new ra thyroid scan on Monday to see what remaining thyroid tissue is there and if this is interfering with my TSH rising adequately.

This is where my questions come into play. I’ll be seeing him on Tuesday so hopefully will have some more answers then.
I am told that there is always some tissue left after surgery as it is impossible to completely get it all, so won’t that show up anyway on the scans?
If there is tissue left, won’t the Rai treatment destroy that anyway?
What would change in my treatment plan if there is more tissue than you expected showing up on the new scan?
Would you want another surgery to remove that also?
There are protocols that I am studying that find a TSH above 30 is all that is needed for Rai, why do you feel that it would be beneficial have a level of 80 – 100?
There is also a synthetic TSH (Thyrogen) that can be given by injection that many others say works as well, but at our first appointment you indicated it doesn't work the same, but would my case warrant this?
How long can I go in this hypo state without endangering me going into a myxedema state and or coma?

I have recently found a forum for Thyroid cancer friends which has been very helpful and it’s nice to be able to help others and get some advice for me in return.  If you are reading this because you are going through the same thing, you can find it here:

http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/discussions/

I hope that this post is coherent enough for you to understand. Again, I hate to come across as whining. If you made it this point and are still reading, I give you kudos for enduring through this long post.

I have had some really incredible personally touching experiences. I will one day put out my post on those. They are things that came to me very unexpectedly and are a bit tender for me to write about as yet. I do want you to know that I feel so wonderfully blessed by my Heavenly Father directly and indirectly through your love and support as well. He is real. He listens to your prayers and is waiting for you to ask for His help in whatever you might need. Jesus Christ truly did come to this earth as God’s son to take upon Him our weaknesses and make it possible for us to progress.

Be happy today. It’s your choice. No one can take that from you.

Now, it's time for a nap. zzzzzzz.......

Super Powers!

   

I had my appointment with the endocrinologist today. He was an older doctor....I know what is "older" these days? :) . Probably in his mid sixties and seemed very nice. He spent a lot of time going over things with me and didn't rush me through the visit.  I'll try to give you a snap shot of what he suggested. If you want more details, although now reading again here I've pretty much written a book,  I'd be glad to explain further. He did give me some options of more conservative ways to go but felt it would be a good idea to have the radioactive iodine treatment, or RAI.  Because the tumor was not large, and it was encapsulated, and I am not that old, he felt that my long term outlook for a cure was above 95%. I'll be around for several more years to be a PIA to all around me.  Yay! So this is the process:

What the RAI treatment does is kill off any remaining thyroid tissues/cells that are remaining from the surgery, and thus improving the chances that no stray cancer cells are remaining. Even in an ideal surgery, the surgeon is never able to remove everything completely. Because thyroid tissue is distinctly able to draw in iodine so well it is used as the trojan horse for the radioactivity. In order for the iodine to be most effective I must go on a low iodine diet for a while and also become very hypothyroid.  This will raise my TSH level from my pituitary as it tries to encourage the thyroid which is now gone, to do its job.  As my T3, T4 levels drop and my TSH rise they will do weekly blood draws till I am at a level that will be the most effective at making those now hungry cells suck up some incoming iodine.

Unfortunately this does mean that I will most likely have a few bad symptoms like no energy, mood problems, memory, constipation...So....pretty much normal anyway, haha, but worse. As I was already low before surgery and no thyroid after surgery this process is already underway and he felt it won't be more than a few weeks, 6 weeks tops, but I hope 2 to 4. As soon as my lab values are where he wants them I will be given a quick first class reservation for the presidential suite at the Charleston hospital which can handle the RAI.  They put me in a special isolation room which has lead lined walls and coverings over most surfaces to contain my glowing personality. (so right now the isolation chamber scene from RocketMan is flowing through my head "John Jacob jingle heimer Schmidt")

They give me a pill from a lead chalice and leave me to cocoon for 24 to 48 hours while my super powers develop. Reading material suggestions anyone?  Every so often they will check my Geiger count levels. (I know...haha....seriously!) He will start me on replacement thyroid medicine right away in the hospital so I can start to feel normal (whatever that is) as soon as possible again.  Hoping my new super powers are cool ones and not lame like being able to do math equations in my head or something.

As soon as I drop below a safe level, I will get to go home. I will still have quite a bit of residual to shed so I have to be careful at home and stay away from people for a week, wash everything really well, use disposable utensils, double flush, not do any heavy necking with hubby, etc. At 10 or 11 days my "glow" will be faded enough that they can do a full body scan. The remaining activity will show them if the cancer cells have spread anywhere else on the body and give a good view of what was left in my neck. (No jokes about checking to see if I have a brain left.)  After that it just takes time for the targeted cells to die off. It may take up to 6 months before they will check again and see if it did its job.  There is no rush to do another treatment. He likes to give it time to work and not to do anything to expose me to more unnecessarily.

The treatment doesn't hurt, or make your hair fall out or make you sick, although some people do get a little nausea for a bit that's all. It will probably be just this one time, it works very well, and I am overall a healthy person, so really the only other issue will be getting my replacement thyroid medicine adjusted to a good level. This is a slow process and adjustments are counted in months, not days or weeks.

One more other thing to watch is my scar healing. There was a small section that looks like it might not heal as flat as it could. If not, Dr. White will make a quick snip and repair which is just a ten minute office visit. Hoping he might be talked into a little turkey gobbler tuck at the same time.  I'm kicking myself for not asking about it when I had the first and second one done. Just kidding.

Thank you everyone for the love, support, prayers, words of concern, dinners, flowers, cards. I feel very spoiled and can't wait to start paying it forward. I'm feeling pretty good at this point except for the low energy. It gives me an excuse to not vacuum and sit on Twitter all day. Seriously that thing is so addicting!

The C word

Today was the day to get my stitches out of my zipper neck. That was the easy part. Then Dr. White came in, moved my purse off of a chair and sat down. That's not usually a good sign when that happens. He had just gotten my formal lab report back today and happened to be able to have a minute or two between patients right before I came for my appointment.

Follicular Carcinoma.....The C word.

POOO!!!

It was small though. Only 1.4cm and they didn't find any vascular invasion. This means that it probably has not spread anywhere else. This type of thyroid cancer is less common (only 15%) but is more aggressive. I tried to remember what I had read a few weeks ago when I was researching this stuff. This type will spread through the blood system instead of the lymph system so in bad cases it can go to lungs and bones. Ok, so now I need the rest of the thyroid removed. Next is tests to see if they can find cancer anywhere else. Then they use iodine to target some radiation and kill anything that is remaining.

My intuition had told me to expect this diagnosis. After the surgery and they said it looked good I thought we had dodged the bullet. My intuition has usually been right through out my life on many occasions. I guess it's my Heavenly Fathers way to let me know that he is not far away.

Back to the hospital on Monday for a do-over on the surgery.

POOOOOO!!!!!!!