I must be nuts!

Call me a bit nutty for doing it - but I just signed up to walk in my 3rd Susan G. Komen 3.Day for a Cure in 2010!!

For those of you not familiar with the 3.Day, participants fundraise a minimum of $2,300 and train for months to walk 60 miles over the course of 3 days!

After my recent diagnosis with thyroid cancer I feel it is more important than ever to keep on fundraising so no one has to battle cancer ever again!

Why choose this event? Because of the amazing journey and the even more amazing amounts of money rasied for cancer research! Yes, it goes to breast cancer research (which is very dear to my heart) but out of breast cancer research has come many life saving treatements for other cancers too!

This will be my 3rd time walking in the 3.Day and my first time walking after my own cancer diagnosis. I'm still undergoing surgery and treatments and i'm not sure where the energy for 60 miles will come from... but I know it will come... and I know I have to do something! There are so many people that choose not to do anything or who don't ever get the chance... I do have the chance and I will push myself to take it!

The journey of the 3.Day is completely amazing and indescribable! I can't wait to walk again in 2010!

And in case you want to donate... CLICK HERE! ;o)

Are you kidding me?!

Ok so I stumbled across an article from the NY Times (July 17th - front page) when I was reading posts in one of my online cancer support groups. The more I read, the angrier I got! All I keep thinking is "Are you kidding me?!" Since when is it cost effective or beneficial to treat someone with advanced cancer rather than catching it in its early stages because of careful and dilligent screening? Maybe they are trying to promote that the better choice is to ignore screening guidelines and signs from our bodies so that by the time we do get checked, the cancer is too far advanced to do anything but get our affairs in order. I guess this could save the insurance companies millions because they would be off the hook for the very costly chemo treatments... of course then the pharmeceutical companies are out their cut of the deal...

Our current healthcare system is skewed, only paying when there is a major problem but not doing anything to help patients prevent the problem in the first place. Many plans [including Medicare] currently do not pay for annual physical exams, screening exams, alternative/complementary medicine [ie: chiropractors, massage therapy, nutritionists] but they have no problem shelling out thousands for an ER visit w/several imaging studies & labs, surgery & inpatient hospital stay, chemotherapy & radiation treatments... all for an advanced cancer found too late because of lack of regular monitoring/screening.

As a self-proclaimed cancer activist and awareness diva, I am appalled by the accusation that these current awareness campaigns are all about making money and driving fear into our hearts. I have experienced, firsthand, how routine screenings can save the lives of people I love...

Take my dad for example... he went to our fabulous Dr and got his routine PSA screening [a simple and low cost blood test]. The numbers were up from the previous test and had climbed higher than they should so he was sent to the Urologist. They determined he had prostate cancer and my dad was given options for treatment. [surgical removal or radioactive seed placement] Generally, prostate cancer is a slow-growing cancer and the seeds work well in killing off cancer cells. Well, my mom and dad opted for the surgery, deciding that any chance of a cancer cell growing in his body would be too much cancer for them! [I agree!] When my dad's final path report came back, it was discovered that he had a very aggressive form of prostate cancer. If he hadn't had doctors that promoted screenings and presented options, I firmly believe my dad would not be here today.

And then there's my case... no, my cancer was not found through a routine screening. I found "Bob" myself because I was trying to rub away what I thought was muscle strain after moving. The second I felt it in my neck, I knew something wasn't right but I waited a couple days for it to go away before calling the fabulous Dr. Within 3 days I had all the standard screening tests and biopsies that showed that it wasn't cancer. I was given options to have surgery right away [only because it was crushing my carotid, esophagus, & trachea] or to wait a bit until it caused me more problems or went away. I don't like anything growing in my body that isn't supposed to be there so I opted for the surgery! Of course you know the end of that story... "Bob" was sent to Mayo and they confirmed that I have a rare type of papillary thyroid cancer. Again I have been given a choice, have surgery to remove the remaining half of my thyroid or watch&wait to see if medication will supress any cancer cells left because my kind of cancer is a "slow-growing" cancer. My research has told me I have an 80% chance that there is more cancer on the other side and a 50% chance that there is cancer in my local lymph nodes. Also, my kind of cancer has a tendency to mutate over time into anaplastic thyroid cancer which is one of the most aggressive cancers out there and usually has a prognosis of less than 1yr to live. I am opting for the surgery and RAI to increase my chances of getting all the stupid cancer cells out! In addition to the monitoring I will have for the rest of my life for thyroid cancer, I will be proactive about getting my routine screening exams for breast cancer as well as doing my monthly self exams. The fun present that my thyroid cancer has given me [especially since i am aged 30-34yrs old] is that I now have a risk of breast cancer 1.9 times higher than the general population. Couple that with my family [on both sides] history of breast cancer...

So I will continue to be an advocate and promote awareness for cancer. I will continue to hand out self breast exam cards at fundraising events. I will continue to wear my "pink gear" out and about and answer questions from curious people. I will buy a "new & improved: now with more radiation!" shirt. And I may just make a shirt that says "check your neck" just for good measure.

If I make just one person more aware of their own body and health I will be happy.

Remember: Early detection is the best protection!

Overwhelmed

Sometimes all the information, symptoms, appointments, medications, what ifs... it just becomes too much. Having cancer is sometimes like having a second job. You make spreadsheets to keep track of your bloodwork, you need an extra planner to keep track of all your "meetings", and you have to schedule people to help you get everything done... of course all this has to be done while keeping up the "normal" life too. You lose control over your life because you are on cancer's schedule. So how can you regain some control in those moments where you are overwhelmed? Hit up the office supply store! Oh and grab your current favorite uplifting book! :)

Reboot

So reading over my posts it seems i've been putting out a negative tone lately. I guess its easy to get lost in those moments of fear, anxiety, sadness. Sometimes they take over and make projecting to a better time difficult. I don't want anyone to worry that i'm sinking into a bad place because I feel far from it. Its just the myriad of emotions that happen and i'm letting them happen. If I try to keep everything inside it would be disaster. I wish I just had some time off to go somewhere remote, quiet, and beautiful so I could renew my spirit... I also wish I had the money to do that! At the moment i'm saving both PTO and cash for my next leave because both will be in short supply when that comes around. Anyone have a free cottage I can escape to?

Sweet Dreams!

The new bed arrived and is set up! Now the only thing I need is a bigger comforter! :)


Sweet dreams!

Top 15 Things NOT to Say to a Cancer Patient

We know that people mean well, but more often than not it becomes open mouth, insert foot. Don't try to think of the "right" thing to say, just try to be normal. In my case, my cancer is about all I can think about and I am more than willing to talk about it and answer any questions... but this isn't true for everyone. If you know someone going through this just be open, we appreciate that! If you have said one of these things below, don't worry, we forgive you! And remember, this list is supposed to be humerous :)

1. "Other than that, how are things?" [uhm....]
2. "Oh, my aunt/cousin/grandfather died of that same cancer!" [i was having a good day]
3. "My (fill in blank here) had (fill in type here) cancer and that was (fill in number) years ago. You'll be fine!" [all cancer is not created equal]
4. "Just think of all the money you'll save on shampoo!" [yeah it will really help with the $10,000 I just dropped on my chemo bill for the week!]
5. "You just have to stay positive" [ok, i'm positive i want to give this cancer back]
6. "You'll be fine" or "So, your fine now... right?" [if fine means i'm not dying, then yes]
7. "God gives you only what you can handle" [i wish i had known that sooner, i would have worked harder on being a weaker person]
8. "Every cloud has a silver lining" [oh yeah, well my radiation therapy room is lead lined!]
9. "Its just a bump in the road" [living with a cancer diagnosis, having multiple surgeries, gaining weight, ingesting radioactive iodine for scans, insomnia, being depressed and anxious, being hypo, going on the LID, being isolated, ingesting really high doses of radioactive iodine for radioablative therapy, lifelong daily replacement TSH, labwork, yearly follow-up labs and scans...its more like a long and winding mountain road!]
10. "Don't worry" [be happy.. don't worry, be happy now...do dodo dodo dodododo dododo...sorry must be the lack of concentration symptom shining through]
11. "Lance beat cancer" [uhm do i look like a 40yr old MAN?]
12. "At least you got a good kind of cancer" [yeah, i was going for prostate cancer but this one is WAY better!]
13. "You'll be fine, you have a great attitude" or "If anyone can beat it, it's you" [I don't have cancer, I don't have cancer, I don't have cancer...ah the power of positive thinking!]
14. "Don't worry, your hair will grow back" or "You look good bald!" [Its the newest fashion, let's do your hair next!]
15. "If there's anything I can do..." [ok so this one isn't really something not to say, just make sure that you really would do anything. Better yet, don't wait for them to ask (most of us are used to taking care of others, not being the ones taken care of) - send flowers, cards, visit, make a meal without being asked because its always welcome!]

Calling All Knitters & Crocheters

Looking for a new project? Want to make something that will be loved and may bring a tear to someone's eye?

Have you ever thought of making a "prayer shawl" or "chemo cap"?

I went to Gilda's Club today and they have a group there that makes prayer shawls for new members and what an amazing gift they are! The one I recieved is a soft yarn in sage green with a darker green border and is a very basic pattern but it is absolutely wonderful. [fyi - the color green is a symbol for healing, hope, renewal & health] Hospitals can be very chilly places - especially when you are in a stupid open air gown! Requirements are: use soft yarn, you say a prayer for health for the person who will recieve the shawl, and you never ask for money in return for your gift. My mom has the pattern if you are interested in making these as gifts for cancer patients! You can read more about this project and get additional patterns here: http://www.shawlministry.com/


Also needed are "chemo caps" for women [and men i guess] who have lost their hair through treatments. This can be an amazingly devastating loss and these women deserve to have something soft and pretty to keep warm while getting their treatments. Requirements are: use the softest yarns possible, make them fun and pretty - be creative! You can read more about this wonderful project and get patterns here: http://joyceschemocaps.blogspot.com/


Ask your friends to knit or crochet a few too! If we can collect enough I am going to see if we can't put boxes with these freebies in the Lemmon Holton Cancer Pavillion and the United Memorial Cancer Center so we can share these with those right in the midst of their treatment rooms :)

PS - if you don't knit or crochet you can always help out with a donation of yarn!

Shopping Therapy

So I decided a few days ago that if I was going to spend 1.5-2months in bed it had better be a nice one! I'm still sleeping on my bed from college with a cheap frame and a cheap mattress that are perfectly ok, just not an "adult" bed that is so comfortable you never want to leave. I guess I was waiting to purchase that with my someone who has decided not to show up yet and i'm tired of waiting on him!

So today I went out looking for a new bed and found a beautiful queen sized cherry sleigh bed - with a short, straight footboard and a slightly curved headboard. Its very unfussy, very classic with a modern twist, very beautiful dark cherry color, and very me. I found it tucked behind a huge ugly dresser in the clearance area marked down $500! Of course then I had to find a new mattress set [i currently have a full] and found those to be on a great sale too! In total I paid the same for the mattress set and the bed as you would normally pay for just the mattress set! :) I can't wait until they are delivered on Tuesday!

Next project - finding the perfect chair for the balcony so I can sit outside and feel like i'm somewhere else instead of being trapped in my house all the time.

Abandonment

The word "cancer" is synonymous with the words death and dying in our culture. You can imagine then, when you are told you have cancer it can play a number on your head even if your prognosis is good. You are suddenly forced to stop and really consider the what ifs... Being 30yrs you are usually thinking about your career, family, friends... not facing a deadly serious illness. You lose control of your life not matter how hard you try to stay in control because cancer takes the forefront, filling your life with appointments, labwork, scans, treatments, naps... Suddenly you aren't making plans around your schedule, you are making plans around cancer's schedule.

But what happens when you really need to take a mental break from it all? Who can you talk to openly and honestly without feeling like you have to constantly be strong and positive? Who can really understand and know where you are coming from? Can your friends handle hearing it all without telling you to stay positive? Because sometimes you just need to get it out there without the added pressure of pretending things are completely fine.

What about those people in your life who just can't seem to deal with your illness at all? The ones that ignore the topic or change the subject when you bring it up. The ones who can't be around you, making you feel even more isolated. The ones who cut off all contact completely... Can you continue to make room for them in your life or truly call someone a friend after that? It doesn't matter what you have been there to support them through, they can't or don't want to deal with helping you through your illness.

Amazingly, you become abandoned by some of the people you cared about the most.

Get Hip To The Lingo

So most of you know I love, love, love to abbreviate things that I talk about all the time so I thought i would share some lingo that may be helpful when reading my posts and helpful for me so I don't have to remember to type out the whole thing!

1. PT - partial thyroidectomy, lobectomy, hemithyroidectomy - this is the surgery where they take half the thyroid, usually reserved for very small tumors and benign nodules. Having a PT usually means you are on a low dose of thyroid hormone medication to keep the remaning side from working too hard and making more nodules/tumors.
2. TT - totaly thyroidectomy - this is where they take out the whole thyroid gland and sometimes the parathyroids. Having a PT means you must be on thyroid hormone medication for the rest of your life because your body will [should] produce none. This is usually reserved for more serious thyroid disease and larger and/or multifocal tumors.
3. WBS - whole body scans - done with a small amount of radioactive iodine, this scan can show areas of thyroid cancer metastasis (spread).
4. Mets - metastasis - means the cancer has spread
5. Pap - papillary cancer - this is a well differentiated type of thyroid cancer that is considered more treateable than some of the other types such as medullary & anaplastic.
6. Levo - levothyroxine - the generic name for the thyroid hormone medication taken daily
7. Hypo - hypothyroid - this means you have extremely low amounts of thyroid hormone working in your body so your thyroid isn't working or you aren't on enough meds. There are lots of unpleasant side effects to this such as: hair loss, extreme fatigue, extreme sensitivity to cold, pale complexion, dry skin, low pulse, pain & stiffness in your muscles and joints, depression...oh yeah and the ever popular weight gain! Basically ALL your body processes slow waaaaaaaay down.
8. Going Hypo - going hypothyroid...on purpose - thyroid cancer patients must "go hypo" before getting a WBS to check for METS [like how i started the lingo talk already?]. This means you need to be off all meds for 4-6 weeks to become extremely hypothyroid so that the radioactive iodine used in the scan will uptake better in the thyroid/cancerous cells.
9. LID - Low Iodine Diet - in addition to "going hypo" thyroid cancer patients will be treated to the LID for scans and radiation therapy prep. On the LID you can have no: Dairy, shellfish & anything from the sea including sea salt, seaweed..., eggs, red dye #33, just about all pre-packaged foods, soy based items, molasses, some beans, potato skins, rhubarb and.... chocolate! This diet is pure torture made even worse by the fact that you will be experiencing all the effects that being hypo can cause.
10. RAI - Radioactive Iodine Therapy - this is pretty much what it sounds like. Thyroid cancer patients are unique in that we usually don't get the standard types of chemo or radiation - we get this combo of a chemical that is radioactive. We either swallow a pill or drink of a large dose of radioactive iodine. This makes us literally radioactive for about 7-10days. Because of this radioactivity we must be isolated from people and animals - sometimes in the hospital where even the doctors and nurses can't come in the room until the guy with the geiger counter comes and says you are no longer a danger to the general public. During this isolation time, you must wash your sheets & clothes every 24hrs, eat off disposable utensils, flush 3 times after "going", spit into the toilet, shower 3 times a day, oh and suck on lemon drops hourly for the first 24-48 hrs among other things.

I think that's a good start - now study! There will be a quiz! :)

On The Books...

So after trying to figure out my schedule this fall and speculating on surgery, hypo, and radiation dates, I talked with mom and she said it would be a good idea to call the Surgeon's office and get my surgery on the books now. [She schedules the patients in her office all the time and knows how hard it can be to get appointments] So we called and talked with the surgery scheduler there and asked what she thought. She said it couldn't hurt to get it scheduled and that we could always change it later if we needed. Sooo I'm scheduled to have my completion thyroidectomy on Tuesday September 1st. I should know more about times and such after my next appointment with Surgeon on August 10th.

Pancakes Make Everything Better

My mom and I went to my big doctor's appointment today.

For those of you out of the loop a bit - it was my first appointment since finding out I have cancer and the appointment at which we would discuss further actions.

In the nearly 3 weeks since getting my diagnosis by phone call, I have been researching thyroid cancer and in the week since I got copies of my path reports, i've been researching my specific type of thyroid cancer. So I walked in with my notebook of information and my list of 20 or so questions to ask. The doctor started out by telling us his thoughts and assesment on things and then let me ask my questions...

The biggest question I had was "what size was my tumor?" The path report does not mention a size which is slightly odd [but all of this has been] and so he called the pathologist who was miraculously on duty right before the holiday. She said they couldn't define a size really - I could have had cancer first and a cyst grew around it which spread the cells out or the cyst grew first and the cancer cells developed all over the lining. Either way she didn't think if you put all the cancerous cells together that it would be much more than 1/2cm. He asked her if she thought they got it all and what she would do if it was her body they were talking about and she said "I would want the rest of the thyroid out."

He then said to us that yes, with me being 30 and having a very long time for a chance of any remaining cancer cells growing and spreading that he thinks taking the other half out was a good idea but the decision was ultimately up to me. With everything I've read [estimated 80% have cancer in both lobes of the thyroid], I knew going into the appointment that I wanted to do everything to get it all out.

I need 3-6mos to heal from my prior surgery so we are looking at early September for the thyroidectomy completion. Four weeks after that I will have a whole body scan with a small amount of radioactive iodine to check for remaining thyroid cells in my body. And a few weeks after that we are planning on a large dose of radioactive iodine to kill off any remaining thyroid cells. I will have to be in "isolation" for a week because I will be radioactive and will leave traces of radiation on whatever I touch. Isolation means total isolation for 24-48hrs where no one is allowed in the room, then pretty much total isolation for about a week to ten days after that with minimal contact with adults and still no contact with children. Well I have 2 cats and have heard horror stories of pets getting radiation poisoning from their owners so i'm considering a hotel for the week if i can scrounge up the money! After that I will need blood tests and scans periodically to check for recurrence. Starting tomorrow I will be on thyroid hormone medication for the rest of my life to supress recurrence and keep my body functioning.

If all goes well, by Christmas of this year I should be able to say that I'm "cured". [correction: in remission, "cured" means no trace of the disease for 5yrs]

After all that news, mom and I went out for pancakes.