Anxious?

The biggest question I have gotten the past few days is "Are you anxious about surgery?"

Very simply put - no, I am not.

I feel I will be in very capable hands and I have a few hundred or so people praying... so what is there to be anxious or nervous about? I can say that i'm dreading the stupid IV in my hand because that isn't very pleasant but i'm not worried about the pain of my surgery site. I'm also not looking forward to being hooked up everywhere so it takes 20 minutes to get unhooked just to go to the bathroom but I became a pro at that the last time around and can cut 10 minutes from that time! ;o) The next week or two will not be very fun that's for sure but I know I will be surrounded by friends and family so the time will pass quickly.

So what did I do tonight to get prepared? I kept busy by finishing up cleaning my house. Everything is put away, dusted, vacuumed... when my house is clean and things are tidy, I feel calmer so it was important to have this done before surgery. I have the dishes scheduled to wash overnight, I took out the trash, I packed a bag to bring to the hospital and laid out my clothes (ok that may sound dumb but i'm getting up at 4:30am). I firmed up plans with my mom about the pickup time tomorrow morning and learned a private room has my name on it (thanks AP!).

So right now i'm finishing up some email, writing in my blog, eating a frozen strawberry fruit bar, and drinking some water. I have 2 more hours to eat/drink all I like before not eating solids again until Wed so I may have to find another snack! After I log off, i'm planning on reading a little of My Sister's Keeper and then trying to fall asleep early.

Tomorrow morning my alarm will ring at 4:30a and i'm sure I will hit snooze a few times before getting into the shower. Then getting the last minute things in my bag, feeding the cats, making my bed, pulling some reports for work and then heading to the hospital at 6:20am. I have to be there by 6:55am and surgery is at 8:55am (weird times i know!). Then its off to lala land while they take out the rest of my thyroid and then a lovely stay overnight at the hospital. I will be back home Wed sometime and will hopefully post an update then... don't plan on an update the day of surgery because i'm not confident in my writing ability while on morphine!

That's about it... chat at ya in a couple days!

Fight Like A Girl

Good Day

Today was a good day :) Time flew by at work, there was no phone call from the mammo peeps, i've given my prearrival info to the nurses and have a surgery time of 8:55am on Tuesday, we had a yummy potluck at work (with super yummy brownies!), and I got my good luck/get well soon gift from the department! The girls had gotten together and decided a handmade quilt would be better than flowers and they were SO right! Various people worked on it and it is absolutely beautiful! While I go hypo i'm sure I will be cold as my body functions slow so now I have a warm and beautiful quilt to wrap up in! I am so blessed to have such wonderful friends and coworkers!

Quick Update

Still waiting on results of the mammo. If i get a phone call today or tomorrow that is not good news... if I get a letter in the mail by sometime next week, that means all is normal. I'm hoping I get the letter before my completion surgery on Tuesday so I have at least a little time to enjoy the negative films!

Other than that... trying to get things wrapped up at work and taken care of at home before being off for the next 6 weeks or so.

Work has been absolutely crazy lately because we've been working through a "shared service" arrangement with our downtown group. Basically this means integrating my department with downtown's coding department. It was a loooong period of discussion where I wanted to make sure that we would all have jobs and that the transition would be mostly smooth for everyone. I was sure that my girls would all have jobs but was actually more concerned they would cut out my management position for a while! Talk about anxiety... going through cancer treatments and worrying about loss of income and benefits! Thankfully we are all keeping our jobs and I will not be transitioning until after I get back from my surgical leave so it doesn't disrupt any of my benefit coverage. Again thankful that I work for a great company with wonderful people! We have our full info/paperwork meeting this Friday so it will be interesting to see the new compensation packages offered... Then during all of this we have 2 audits going on - barf! These are the least favorite part of my job! I hate having to defend WHY we coded a patient a certain way because sometimes things are subjective and always there are thousands of rules to remember. I'm getting things done before I go so I don't worry while i'm off and i'm trying to set up my girls with a solid plan so they aren't so disrupted by my absence. Right now there aren't enough hours in the work day and i can't stay over because of the hours i need to use in my personal day! I'm excited for the surprise potluck the girls have planned for tomorrow to wish me good luck...at least i think it was supposed to be a surprise! Oops! LOL

So on to everything else i need to get done... I did laundry this past weekend (had to after not doing it for 3 wks!) but I still have to put it away - UGH! I need to unload/load/run the dishwasher, clean out the fridge, dust, vac, and just put everything away. If I don't get this done before surgery it won't be the end of the world but it will drive me nuts when i can do nothing but sit and stare at it all day! I also want to make a list of the books I have to read and decide what order i'm going to read them in... i think i have 20 or so in the lineup. I need to get my pics printed from 3 Day 2008 so I can work on my scrapbook when i'm bored or can't concentrate to read. I need to find some LID compatible recipes for bread and pasta sauces so I can find people to make me some ;) Oh and I have to get a water filter, yoga DVD (know any easy ones?), and thermometer! I will probably have some paperwork for the merger mentioned above to complete. Oh and this weekend I have a meeting at Gilda's Club, a wedding shower out of town, church... Monday i'm actually working but may decide to work from home so I can cut out my hour drive and work on my to do list instead. Everyone thinks i'm nuts for working on Monday but if my first day of my surgery leave is the day I stay overnight in the hospital, I don't have to use 40hrs of my PTO before my leave pay kicks in - crazy!

So that's basically the peek into my mind at the moment... i'm a bit scattered so i'm sure this post reads that way too! Any suggestions/thoughts/comments on any of the above?

If Anyone Is Out There...

Tomorrow I have to go for a second mammogram... wait, what?! Yup you read that right - second mammogram. I got my first one ever last week to serve as a baseline because of my increased risk factors and on Thursday I got a call back saying I needed to come back for some more views of the right side.

So if anyone is out there tonight and tomorrow morning...please pray that they find nothing and that's its only because the first films were of bad quality. Not sure how I would deal right now if I found out things were going the other way...

Decisions

Something has been on the back of my mind since this whole mess started. The RAI that I have to get could potentially kick me into menopause - not likely but still a possibility. What does that mean, well you all know what menopause is [i think?] but being I have no children at this point in my life, it could also potentially mean that having children would no longer be an option.

I've been trying not to really think about it much because who likes to focus on the negatives? This past weekend at the 3 Day, my Aunt was working on the medical crew with some Oncology nurses who told her to tell me to freeze my eggs ASAP.

I did some reading on this when I first heard of this as a possible side effect. I found that it is very expensive [about $10,000] to harvest the eggs and then you have to pay to keep them frozen as well as pay for the implantation procedures. Also, there is only a 2-4% chance that a frozen egg will result in a live birth. If you freeze a fertilized egg the percentage is much greater, but then there is that little problem of not having a someone around to fertilize the egg... Yes, I could use an anonymous donor or ask a friend to do the honors but that just feels wrong to me. If I was engaged or in a serious relationship talking about marriage, then maybe it would be a discussion to have. If I was married it would be an obvious discussion to have. Being single, its my decision alone to make.

My decision when I first did some research and even now after the well meaning warnings from the oncology nurses is to let go of this worry and put it in God's hands. If i'm meant to be a biological mother, I will be. If that is not possible, adoption is always an option. If i'm not meant to be a mother in any way, then there must be another mission for me out there...

I'm at peace with this decision and am not worried about what the future may or may not bring.

Comments

So i've heard some of you are new to the blogosphere and aren't really sure how to comment on a post! :) Here are the simple instructions:

1. At the bottom of each post it says "Posted by Christina at (time) (#) Comments"
2. If you want to comment on a post, just click the word "Comments"
3. You should then see "Post a Comment" and a little white text box at the bottom of the post.
4. Type your comment in the white text box.
5. Then pick a "comment as" option from the drop down box. If you don't have a blog, Google, AIM account, pick the NAME/URL option and enter your name in the top box and click continue and it will add your name to your comment. If you don't want anyone to know you posted, then choose the Anonymous option.
6. Then just click on "Post Comment" and you are done!

I hope that clears up any confusion :)

Go With The Flow

Had another doctor's appointment today with my surgeon. He's a cool guy so basically he came into the room and said "So... yeah, you already know what to expect so i don't have much to tell you!" LOL I have had this surgery before (left side) so I know what to expect pain/recovery wise after surgery. I know I will be hooked up to an IV with fluids until I can eat solids and that nurses will come into my room at 3am to make me hit my cheeks. (muscles there will twitch if my parathyroids were damaged causing my calcium levels to plunge) I also know to avoid Vicodin completely. He said he will be making my scar more symmetrical (oh thanks!) and that he will actually cut away the current scar tissue in order to have a cleaner, new scar. He did feel my neck again and then decided to do another ultrasound to make sure things looked the same. He said the right lobe still looks disease free (no nodules) but that there could still be microcarcinomas that don't show up on tests.... so basically we decided to proceed as originally planned. (anticlimactic, I know)

So I asked him some questions... I always have questions! My TSH was drawn on Friday and he said that turned out to be 0.34 suppressed which is right where I should be (0.3-0.5) so my daily thyroid hormone dosage is good. I asked him if the lymph nodes appeared to be fine and he said we won't know for sure until after my scans but they aren't concerning at the moment. Then I asked him if I would have a nuclear medicine or radiation oncology doctor do my RAI and he said it would be a nuc med Dr and that I would have a consult with him a few days before my scans/RAI. I told him i've been reading the research and it says I have an increased risk of breast cancer, couple that with my family history, I wanted to know if it would be a good idea to get scheduled for a baseline mammogram - he said yes, that would be a good idea... I asked him a few more questions and I believe I have a good estimate of a timeline...

The Flow:

• Pre Surgery - Call my PCP to get a Mammo ordered and performed (yay fun)
• September 1st 8:30am - completion thyroidectomy performed, stop all thyroid meds
• September 2nd - go home still off all thyroid meds, this time with no thyroid at all
• September 2-October 2 (approx) - be off thyroid hormones to go hypo, currently my TSH is at 0.34 (which is almost hyperthyroid for normal people) and I need it to get to 50.00 (10 times more hypothyroid than the almost hypothyroid normal people). This takes approximately 4-6 weeks and you feel like total h-e-l-l as all your body functions slow to a crawl.
• September 8th - post-surgery appointment & stitches removed
• September 20th - start the LID, hopefully this only lasts 2 weeks but this again depends on my TSH levels.
• October 4ish - Hopefully levels will be high enough to meet with the Nuc Med doctor and schedule my tracer WBS for a couple days later (low dose of RAI)
• October 6ish - tracer dose WBS to check for thyroid cells still in the body - this will be the first time we will be able to find out if the cancer spread to lymph nodes or elsewhere
• October 8ish - get 100-150 mCi dose of I-131 (radioactive iodine) - unsure at this point if I will have to stay overnight to protect the safety of the public from my radioactive cuteness. No seriously, I will be emitting gamma rays sorta like X-Rays at not so safe levels.
• October 8-15ish - the isolation period. I can't be anywhere near children or pregnant people and have to be at least 3-6ft away from all others and only for very short periods of time. I have to suck on lemon drops for the 1st 24-48hrs to keep the radiation from burning my salivary glands. I have to pee every hour for the first 24-48hrs to prevent it collecting in my kidneys and I have to flush twice after each use. If I vomit they have to call the hazmat team!
• October 10ish - get a post-RAI WBS. This one should show what the 1st WBS did, except the very high dose of RAI will make it much more sensitive in showing any possible mets.
• October 11ish - I can start taking my thyroid meds again - YAY!
• November 22ish - check TSH levels. Goal: 0.3-0.5. Continue checking levels every 4-6 weeks if not in the goal range. It can take months after going so hypo to get your levels back to the goal range.

So that's my life for the next couple months in a nutshell - any questions?

Gratitude

I am grateful that my place finally sold and that the buyers wanted to me to be out quickly, causing me to move when I did.
I am grateful that I had to move into an apartment where the grass gets mowed, repairs are done for free, and I won't have to shovel in a few short months.
I am grateful for the aching muscles that came from hauling things out, up, and in.
I am grateful that when trying to rub out a kink in those aching muscles, I noticed a lump at the base of my neck.
I am grateful for a doctor who came in on his day off to see me after the urgent care said I needed follow-up within a couple days.
I am grateful for the referral to an experienced surgeon who said the lump needed to come out because it was pressing on my carotid, esophagus, and trachea - even though he thought everything looked benign.
I am grateful for his skilled hands that did the biopsy painlessly and removed the lump very carefully from my neck and recurrent laryngeal nerve because he knew my voice was important to me.
I am grateful for the experienced eyes of the pathologist who recognized that something just wasn't right about the cells under the scope.
I am grateful for the experts who were able to confirm what the pathologist discovered.
I am grateful for doctors who listen to my fears and recognize the fact that I can indeed be an active participant in my healthcare plan.
I am grateful for the various support systems, websites, books out there available to young adults dealing with cancer.
I am grateful for my parents and my friends who have listened to (& read!) my thoughts, fears, and triumphs because they are making this easier to deal with.

Hello Blister, I've Missed You!

Went walking for the first time in months with Lindsay, Vanessa, & Heidi. My trusty blister "squirt" decided to show up for the occasion too!

I don't know how to express how good it felt to finally have a day where my energy level felt like it was back to normal! It has been so frustrating wanting to do what used to be no big deal, to plan on doing it, only to find that by 3pm I can hardly think straight because the extreme exhaustion has set in. Most nights I drive home from work and pass out on the couch while trying to muster up enough energy to get up and check things off my to-do list...

I'm sure friends are sick of my backing out at the last minute but I hope they understand that I just can't do it. I really want to be out there with them doing things that were normal for me once upon a time. I hope that in 6mos my energy returns and training next year will be no big deal...

Guinea Pig

I was reading about advances in thyroid cancer treatments and really, there have been few to no changes since the 1950's! Apparently, the scientific community found something that worked pretty well so they figured why fix it. Well, with the emergence of more aggressive thyroid cancers and RAI resistant strains, there are more and more research projects out there. Most of them deal with advanced (with distant mets) or non-RAI avid (doesn't uptake the radioactive iodine) types but there is currently ONE clinical trial out there for stage 1&2 papillary thyroid cancer. There are 2 locations running this trial - Bethesda, MD and Washington DC and both are currently accepting participants.

So why am I thinking about this? After all, its basically like being a human guinea pig or donating your body to science before you are gone, right?

Well, let me tell you some small details of this trial. They are doing RAI therapy in small doses (30mCi instead of standard 100-200 mCi) given with small doses of Lithium. I know that the RAI is "safe" and I know that the Lithium is "safe" and of course the placebo pill is safe. So this isn't involving some new, crazy drug. Apparently, the docs believe that the Lithium increases the uptake time and sensitivity of the RAI so the body isn't exposed to so much radiation. The lower dose of radiation has less risk of side effects...and if the small dose doesn't kill off the cancer, you can get another dose.

So it seems there are a lot of good points to this one and I could be helping future thyroid cancer patients. Anyone have thoughts to ponder on this?

The LID

As my completion surgery date approaches, i've been thinking a lot about the recovery period and the prep for my WBS and RAI. One part of that involves going hypo for the scan as well as being on the LID. (that lingo post should be coming in handy right about now!) There are a few things that worry me about this period...being ridiculously tired, not being able to drive, losing hair (not as bad as chemo, tG!)... will I be able to function enough to make all my meals from scratch? So far all I have pre-prepped is a few containers of broccoli frozen into single serves and homemade fruit sorbet. Pretty much everything in my pantry currently will be off limits as well as the little bit I have in the fridge.

Here are the "rules" of the diet... if anyone has recipe suggestions please post em!

Avoid Completely:

• Iodized salt & Sea salt
• Seafood & sea products (this includes seaweed, kelp...goodbye sushi!)
• Sea based additives - carrageenan, agar-agar, algin, alginate, nori
• Dairy products in all forms (butter, whey, ice cream, milk, cheese...)
• Egg yolks or foods containing whole eggs
• Commercial bakery products
• Red Dye #3 (basically avoid any brown, red, orange processed foods)
• Chocolate (for its milk content, cocoa powder and some very dark chocolate is ok)
• Molasses - sulfur or blackstrap kinds, also brown sugar containing molasses
• Soybeans and most soy products (soy oil and lecithin are ok)
• Beans: red, kidney, lima, navy, pinto, and cow peas (all others are ok)
• Rhubarb and potato skins
• Iodine containing medicines, vitamins, & food supplements
• Restaurant, Fast, Manufactured & Processed foods - take a look at your labels, nearly everything contains salt and you can't guarantee it was non-iodized

Limit:

• Fresh Meats/Poultry - 5oz per day - make sure not injected with broths
• Grains & Cereals - 4servings per day
• Rices - iodine content varies widely depending on the region where it was grown. Basmati rice is best for LID.

A-OK:

• Fresh fruits and fruit juices
• Vegetables - preferably raw, fresh cooked or frozen (not canned)
• Unsalted nuts and nut butters - no JIF for me :(
• Grain/Cereal in moderate amounts
• Meats & Poultry in moderate amounts
• Sugar, jelly, honey, maple syrup, & unsulfured molasses
• Black pepper and fresh or dried herbs
• All vegetable oils. Salad dressings if they have only allowed ingredients
• Homemade foods
• Cola, diet cola, lemonade, sodas (with no red dye #3), non-instant coffee, tea, beer, wine, & other alcohol.

Ok, so do you have ideas? I'd love to hear them!!