Vacation+Fiesta Bowl+Low-Iodine Diet=Ugh

Time to head to AZ for the Fiesta Bowl.  So excited!!!  Oklahoma State finally won our first Big 12 Championship and we are headed to our first BCS game and I get to go! Coming home wont be fun, but hey...sometimes you have to pay a price.

Paul and I got to AZ.  It is beautiful!!!  We met up with my unlce and I was kidding with him that it took a football game to finally visit.  While we were there the weather was perfect and we never had any problems with allergies.  We had a great time.  We stayed in Scottsdale which seemed to be the hub for everything.  Shopping, eating, you name it...they had it.  We ate a lot of Mexican food and did try to see some sites.  My uncle also drove us around and showed us where the Suns and the Diamondbacks play.  He also showed us how to get from the hotel to the Arizona Cardinals stadium.  We didn't have to fight traffic!! 

On the day of the game hubby and I went looking for health food stores.  I needed to get stocked up for the trip home because I wouldn't be able to stop and eat being on the low-iodine diet.  We finally found a big health food store and I told Paul that I wished we had a store like that in Stillwater.  We dropped off the food (fruit, nuts, rice cakes, Sierra Mist, water, ect..), got dressed and headed to the game. 

We got to the stadium, looked around and then went to find our seats and guess who I saw....my new boss.  He was sitting a few rows behind Paul and I.  So, I went to say hi and decided to tell him about the cancer and that there is a chance it was back.  I apologized for not saying anything about it during the interview but I wasn't sure if it was proper or not to bring it up at that time.  He told me he already knew and it wasn't a problem.  Health and family come first.  What a relief.  I was so scared it would end up being a problem.  I mentioned when the dates were and that most everything would be over before I started the job.  I would need time off to get my results but that was all.

Side note:  what a great game.  Oklahoma State won it's first BCS Championship....yes I am very proud of my Alma Mater!

Sometimes the truth hurts....

It was late when we got back to the hotel and we knew it was going to be hard to get to sleep.  We had to because we planned to get up early for that long drive ahead of us, but we were still too excited from the win.  Considering I had to start the diet on the way home we made the decision to drive straight through.  The only stops would be for gas and to use the restroom.  Paul decided to be on the diet with me that way he wouldn't be eating "regular food" in front of me.  He is so awesome. 

The time came to start making the trips back and forth to OKC.  Blood work, Thyrogen injections, tracer dose then the scan.  I think I made four trips back and forth in one week.  I got to talking to the tech guy that gave me the injections and I told him I was excited Mercy had the Thyrogen.  He told me that they had the largest Thyroid Cancer popultion in state of Oklahoma.  I wish I knew that when all this started.  He went on to say they did there best to always have it in stock and they already had a protocol in place for situations where medications were in shortage.  After hearing that, I was so thankful I was turned over to my new doctor.

I loved doing the scan at Mercy it was so much better than doing it at Stillwater Medical Center.  Not that the bed you lay on for a scan is comfortable but at Mercy I wasn't strapped in like at Stillwater Medical Center.  It was so much more comfortable and they played music.  They didn't at SMC.  The overall expericence at Mercy compared to SMC was just better.  So now that the scan was done we sit and wait for the results and start my new job.

Starting the job helped me get my mind off the possibilty that the cancer had returned.  Going home was hard....I would sit and think.  I just couldn't imagine that the cancer had returned.  Considering everything I went through finding out I had cancer I started making plans in case I had to have surgery or go through treatment again.  I wouldn't be able to stay at the apartment if treatment was the choice.  We now live in a one bedroom apartment and there would be no way for Paul to stay away from me.  He also wouldn't be able to stay anywhere because it was basketball and wrestling season and he would have to work.  I thought that since I'm now under the care of Mercy I felt I would be able to be in the hospital during treatment...if need be.  I quickly learned to expect the worse and hope for the best.

Well, time to make another trip to the city to get the results...

Thyrogen, Thyrogen...where art thou?

After my one year scan, we scheduled another scan for the following year during the summer.  During the summer of 2011 we were planning another trip to Maine to see Paul's family so I had called the Stillwater Cancer Care Center to see when my scan was going to be.  They were wanting to do it while I was on vacation, I didn't want to be on the low-iodine while in Maine.  Well, come to find out they were out of the Thyrogen and they weren't sure when more would be delivered...so my appointment was going to be moved to the early part fall.  Perfect...I will be back from vacation by then.  But there was a down side...there was going to be a chance that I will be on the low-iodine diet during football.  UGH, terrible...on that diet during football...looks like I have no choice.  Gotta do what you gotta do...right?

Paul and I went on vacation and of course had a great time.  Saw some new things that we missed on the year before and we spent more time in Boston.  I have really fallen in love with that city.  I don't want to live there but I do love visiting. 

When we got home (easier than last year) I recieved a call from the Stillwater Cancer Care Center...they still don't have any Thyrogen.  You have got to be kidding me.  My nurse said that it had something to do with it being on back order.  My poor mom kept trying to blame the Cancer Care Center, but they weren't at fault.  It was the manufacture company.  My nurse wasn't sure what all was going on and neither did the customer rep, so I decided to google Thyrogen and the company that makes it.  Apparently the FDA shut down delivery because the medicine was contaminated and the manufacturer had to clean things up before more could be made and delivered.  What type of contamination, where, ect., the company did not have to disclose that information according to the FDA website.  Just one more thing I didn't understand about all this cancer stuff.  So, we continue to wait.

I finally got a call in October to come in and talk to my doctor.  It was yet another doctor...I really don't think I ever saw my original Oncologist after the first year.  The Cancer Care Center was changing protocol and those of us who are/were considered stable patients were going to be released and refered to another doctor.  They had no idea when more Thyrogen would be delivered and if a patient comes in with a diagnosis of Thyroide Cancer they would have top priority on the medicine.  I totally understood that.  I then got refered to an Endocrinologist within the Mercy Health Care System.

My appointment was scheduled for December.  WhooHooo I didn't have to go through football on the low-iodine diet.  The new doctor did some blood work and scheduled an ultra-sound of my neck.  I went back in around the middle to end of December to get the results.  That is when my heart sank.  My blood work showed that the cancer was coming back.  My tumor level was higher than the doctor liked.  Now, the problem was the doctor didn't know if that was normal for me, or to high...nothing.  He asked if I knew what I had been showing and of course I didn't.  I asked what my paperwork said and he said according to my file the Cancer Care Center never did blood work.  Well I knew that wasn't true.  I have had blood drawn a number of times....why didn't they get my whole file?  Yet another question.  Seems like I have more questions than answers.

Well, this wasn't the news I wanted to hear right before Christmas.  So, I was going to have to go through the scan....again  I was so scared I would have to go off the Synthroid.  The doctor said not to worry about that just yet.  He was going to have his nurse call and see if Mercy had the Thyrogen before we went any further and that I would get a call with an answer and we get things scheduled at that time.

Now, while all this was going on I had recieved a call for a job interview.  Yep, I was looking for a new job.  I had decided  not to say anything to my potential new boss until I had dates confirmed and wanted to wait until I knew if I had the job or not.  The "C" word is such a tricky thing.  You never really know when to mention it when it comes to interviews and possible new jobs.  So I decided to wait until I heard from my new nurse.  I went to my interview and a couple of days later I accepted the position. 

Good news...Mercy has Thyrogen!!!  Yes, I can stay on the Synthroid.  Bad news...my new doctor wanted me on the low-iodine diet after Christmas and I have a new job.  Wait, how am I going to go to the Fiesta Bowl AND be on the diet.  That is not going to work.  I have never been to Arizona and this is a BCS bowl.  I want to be able to have a good time.  I told Paul I didn't know what to do.  We talked back and forth on what to do...we had the tickets, hotel booked and paid...Ugh.  So I asked my dad if he wanted to go in my place and he said no.  I also had to decide how I was going to tell my new boss about the Thyroid Cancer and that there was a chance it had come back.  Oh boy...what do I do.

I ended up calling  the nurse back and asked...if I promise to start the diet on my way home from the game can we still do the scan with the dates she gave me.  The dates I had would be perfect.  I would have everything over but getting the results before I started my new job.  She called back and the doctor said if I promised to start the diet on the way home we could leave the dates alone and not change anything.  Yes, I was able to wait.  Nice, I can be done with the scan before I start my new job and I can start the diet on my way back from AZ.  Praise the Lord!!!!

Tests results, Synthroid adjustments, Thyrogen....Oh the fun

Now that I have gone on my little rant, I guess I better get back to my story.

After the first two surgeries I was on .150 of the Synthroid. Then it was .175 and finally .200. In the beginning I felt like I was being bounced all over the place. One dose to another....One day I would feel great and within a couple of days I would feel horrible. Once I was on the .200 dose, I was doing much better. The biggest issue I had was sweating. Oh my, I would sweat at the drop of a hat. Cleaning, walking, it didn't matter what I was doing I would sweat. At least my hair finally stopped falling out.

About a week or so after the first Whole Body Scan, I got the results back.  It still showed some cancer still in the bed of the thyroid.  The doctor said that was normal and in six months I will go through the scan again and he feels that it will all be gone.

The six month scan was so much better than when I went off my Synthroid for treatment and the first scan.  They finally have this awesome drug called Thyrogen (http://www.thyrogen.com/home/thy_home.asp).  Now I get to stay on my medication and still have the scan.  Praise the Lord!!!  I will now have two Thryrogen injections a couple of days before the scan and that will push my TSH levels up to where they need to be in order to have the whole body scan.  It has made things so much better...however I did end up with a reaction to the medicine. Who knew Thyrogen had side effects, then I googled it...So my nurse and I came to the conclusion that I had an allergic reaction and next time I would have to take some meds that would off set the side effects.

I went in for the six month scan and the results came back clean.  In September 2009 I was declared cancer free.  Those were/are the most awesome words I could have ever heard.  The doctor said once the one year scan came back clean I could start counting the years in between scans.  Eventually I would only have to be scanned once every five years.  Yes!!!  I get to start counting the years.

In the summer of 2010, Paul and I went on vacation to see his dad and Aunt in Maine.  When we got back I would be on the low-iodine diet for my one year scan.  Getting to Maine was so frustrating...Our flight leaving Tulsa was delayed, we were delayed getting out of Chicago Ohare...then we finally got to our destination.  Had a great time.  It was my first time up in that part of the country and I saw some amazing things.  However, getting home took forever...We got to the airport and was informed that our flight was cancelled.  Thanks United for the heads up.  Being delayed wouldn't have been so bad if I had enough Synthroid.  Everyone kept telling me I would be fine.  I had been on the Synthroid for about two years and everyone said that was long enough and I wouldn't have any problems.  They were wrong.  So very wrong.

Trying to get home was a journey.  We got back to the airport and once again our flight was delayed (don't fly in and out of Ohare).  I was okay at the beginning of trip, but by the time we got to Chicago Ohare...I was a mess.  I was tired, weepy and just wanted home.  Paul kept saying, don't cry....don't cry.  I did my best...I was just so tired and not feeling all that great.  I was done with traveling, being at airports...I just wanted home in my bed.  We didn't get to Tulsa until about 7:00/7:30 pm that evening and didn't get to Stillwater until around 9:00 pm and then finally took my Synthroid.  Never go without your Synthroid unless you have to especially when traveling...that was terrible.  I now take my pill bottle no matter where I go.  Even if it is an over night trip.  You never know what could happen.  I would say it took a couple of days to get back to "normal", whatever that is.

We finally got back home and it was time to go back on the low-iodine diet for my one year scan.  But this time there was a change.  I already knew I would be able to take the Thyrogen shots but this time around I also had to be on a clear liquid diet and drink that stuff that cleans you out the day before. Went in to have the scan done, got the results and I was still cancer free.  WhooHoo!!!  However, the doctor (who wasn't my original oncologist) said we will we redo the scan in a year once again.  WAIT, what?  In a year....Why?  The doctor said that considering cancer cells were found in the lympth nodes, we needed to do it again in a year.  I said okay (even though I wanted to wait two years), I have been aggressive this far, what's another year.

Oh, the joy of trying to get the next scan done.  It deserves it's own post...

Rant/Frustrations/Random Thoughts:

For a couple of days now I have been trying to write about the scans, mediciation adjustments, ect...and I haven't been able to come up with the words.  So, I decided to take a break from all that and decided to free write how I honestly felt going through all this cancer stuff.   I'm going to go on a little rant before I continue on....I will try my best not to repeat anything already written, but I can't promise anything.  Also, I will apologize now if I seem all over the place.  Hopefully it won't be to confusing.

I hate the word Cancer.  Cancer sucks and that is the only way I can describe it.  I also hate that I was diagnosed with it.  You never think it could happen to you, but it can and sometimes it does.  For the past couple of years I have felt like nothing but a number....a statistic.  Between the tests, scans, blood work, rotating doctors, and the issues I have had since the second surgery (actually can't tell if it's from the surgery or car wreck)...I really am nothing but a number.  Cancer is THAT six letter word.

If I am going to be totally and completely honest, that is how I feel about myself at times....nothing but a number.  Those feelings usually come when I feel depressed, start feeling sorry for myself, or like this past weekend when I feel broken.  I have mentioned before that I still have problems from the second surgery.  My neck and right shoulder still bother me.  Alot.  When or if I use my right arm to much, the weather changes, sleep wrong...the right side acts up like crazy.  When it happens, my arm will burn, ache, hurt, throb...there are times I can't turn my head, my neck feels twice it's size or at other times I feel like there is a rod stuck in my neck.  Just all sorts of crazy issues. 

I will never forget the day I was told they found cancer...I was feeling so many different emotions.  Since we are being honest, the main question I kept asking was why.  Why me, why now, what have I done wrong?  I remember wondering if I was that bad of a person or if my past had come back to haunt me, was I so bad that I deserved cancer?  I also...even blamed God....a little.  Even though I was leaning on God, my faith, my Pastor and church family, friends and family there was that small part of me that blamed God.  I got really good at putting up a front, everytime I was asked if I was okay, I always...without fail put on a smile and said I was great.  I never heard anything different, so  I always presummed they believed me.

I remember the first time I was asked why I still believed in God and why I thought he would heal me.  That person also told me that it was God who caused me to get cancer.  I disputed with that person, almost got into a knock out drag out fight (okay, it really was a war with words).  Then I had to stop, look within myself and admit that it wasn't God's fault, I need to stop blaming him.  It's one of those things that happen and I would be able to turn this horrible thing into a wonderful and tremendous testimony. In my heart I always knew it wasn't his fault, but in my head, I had to blame someone.

Another thing I remember that drove me crazy was being told over and over again that if I was to get cancer, Thyroid cancer was the best to get.  It's easy to get rid of and manage.  All you have to do is take a pill a day...not that big of a deal.  Oh, if only it was that easy.  Just a pill a day.  Well, come to find out it's not just a pill a day.  When I don't take it or if the dosage is off I feel horrible, my hair falls out, I'm weepy, fatigue, emotionally up and down, you name it and more than likely I have felt it or gone through it.  It drives my poor husband crazy.  I told him a few times he could leave.  He didn't sign up to deal with cancer.  As always, he would tell me to shut up and that everything would be okay.  Don't tell him, but he was right.

I do have one of the most dependable support systems.  My friends and family are awesome and it was so hard to tell them, especially my husband that I had cancer.  As I have mentioned before, my dad was with me when I got the news...but telling my mom and the rest of the family was devastating.  It has got to be one of the hardest times in my life.  I really think what made it harder was a couple of years prior, we had Aunt Sharon to breast cancer and I was so scared that it would also happen to me.  No matter how many times I was told that Thyroid Cancer is the easiest to control and manage, I was still so scared.  It was still cancer after all.

My dad kept trying to reassure me that everything will be fine.  He told me he was praying one night and the Lord told him that we are to never forget that cancer was in the nodule on the thyroid, not in the thryroid itself.  I kept telling him I know and understood but it was still so hard.  Like I said, I knew in my heart everything was fine but getting my mind to understand was another story.  The mental battle that goes on with dealing with cancer is tiring in itself.  Not to mention the physical battle of trying to heal from two surgeries and treatment.  Ugh, treatment...after I went through that I was sick all the time.  It's so easy to tell someone the cliche words/phrases.  It will be okay, God won't make you carry a load that is heavier than you can handle, this to shall pass (one of my mom's favorites).  However, when it's you going through the storm...it is so hard to take your own advise.

The most frustrating part of all the cancer stuff was the rotating doctors at the Cancer Care Center.  Dealing with cancer itself it a struggle, but when you have different oncologist each time you go to the Cancer Care Center is so mind blowing.  The first year I had the same doctor.  After that I had someone different.  Even when I was discharged I had a different doctor.  Each one had there own thoughts and opinions on how things should be done.  The real kicker was my last doctor there...the one who discharged me,  I don't think she ever read my chart/file.  All she said was, well your stable so we are releasing you....bye.  Okay, maybe not those words but I think you get my point.  If only I would have known what I know now...again, another great cliche.

I think one of the best decisions I made was going on "happy pills".  That actually started when I was trying to get my dosage of Synthroid changed.  My primary doctor during all the cancer stuff tried to put me on it, but I refused, now I wish I would have.  You never realize how much your thryroid controls until you don't have one.  It also took some time for me to realize how much I actually needed the pills.  The other issue I had to get over was...It was okay to be on them.  There are so many Christians that have this idea that going on this type of medication is wrong.  We are to trust and rely on God.  He is our joy, comfort, peace....ect.  But you know, there are times that we need doctors and different medications.  God gave us doctors for a reason.  God knows our heart.  Just because I'm on the meds doesn't mean I don't believe that I will and can be fully healed. 

One of the main things I had to learn and remember through all this was...God is always there.  It was hard for me to see that as I was going through this particular storm in my life.  Just because I didn't see or understand what is going on doesn't mean I had been abandoned, even though at times it felt like it.  There were times I felt like I was on a ledge and ready to jump.  I had no idea where I was going to land.  I had to decide if it was going to be in God's loving hands or to never never land.  When I was ready to throw my hands up and finally jump...I know I jumped into God's loving hands.  Even though I could see God and even though I felt so alone...I finally cleared my head and heart enough to hear God telling me...My child, I am carrying you.  You may see only one set of foot prints...remember it's mine and I'm carrying you.

There were many times I felt alone even with so many great people around me, but I always knew...deep in my heart...that God was carrying me.

Radioactive Iodine......Treatment, finally

Two surgeries, Thanksgiving, Christmas, New Years and the Cotton Bowl is over.  Time to get ready for treatment.  The appointment was made to meet with my oncologist...I went in and he checked the scar, went over the paperwork and said I could get things started.  Finally!!!

I went and met with my oncologist to get the process started.  I did blood work and got my list to follow.  First step was to be taken off my Synthroid.  Ugh, never do this unless you have to.  I had to in order to get my TSH  levels where they needed to be for treatment.  The side effects of going off Synthroid are crazy...headaches, fatigue, emotional, lack of appetite, ect.  I was told the symptoms are similar to being pregnant and it was horrible.  I was off my medication for about three or four weeks and those were the longest three or four weeks of my life.  It was so hard working, going to church, being with friends and family.  I would take short naps at lunch, would get off work go home and take a nap before bed.  I also went in weekly to have blood work done to see if my levels were high enough yet.

My bosses at the time was awesome (I have since changed jobs).  I don't think I could have worked with and for better people.  They were so understanding...I missed so much work because of the surgries and what trying to get ready for treatment.  Things got so hard while I was off the Synthroid...it got to where I was having a hard time getting out of bed for work and couldn't wait to get home so I could get some sleep.  I would cry at the drop at a hat and then turn around and be mad.  My husband threatened to start sleeping in the car.  He said he he never knew what to expect from me from minute to minute.  There wasn't much of a difference between work and home...nobody knew what to expect from me.

I finally went and talked to my direct supervisor and our Director about changing my hours until I was finally able to have treatment and go back on my medication.  Getting up and working eight hours a day was getting so hard.  Just as we set up my new schedule I got the call from the Cancer Center.  My TSH levels were finally high enough.  I was finally able to have treatment.  Time for the low-iodine diet and treatment.

Awe yes, the low-iodine diet...no salt, sea salt, iodine, red dye, six ounces of meat a day, nothing processed, no dairy, no soy, ect...UGH.  I quickly learned how to read the labels on food and over the counter medicines.  Yep, I even had to change some of my medications.  Had to change my allergy medication, vitamins, ect.  I'm tell you...it was so much fun (total sarcasm).  Actually, you don't realize what all has iodine, red dye, salt, ect.  It was eye opening.

I was going to be in complete isolation for a week while going through treatment.  I also had to "treatment proof" the house.  I had to saran wrap the key board, house phone and cell phone.  Put the remote controls in baggies, buy paper products so I could throw away my plates, spoons, forks, ect.  I was told to flush the toilet twice after I used the restroom, wash out the shower after I showered and at the end of the week I had to wash my clothes and bedding three times.....Paul also had to leave the house for the first four days.  We had to make sure he wasn't exposed to the iodine radiation and that everything was decontaminated when he did return, we didn't want to take a chance in ruining his good thryoid.

Treatment was scheduled for February 13th.  Yep, totally messed up Valentine's Day.  My Pastor and Charlie came by before I left for the hospital to pray with me.  You know, I couldn't have asked for a better support system through all this.  Pastor was at each surgery, pre-treatment, my church family was awesome, family and friends.  I love each and everyone one of them.  Pastor and Charlie left, I got Paul up so he could get ready, pack his bag and then I left for the hospital.  Paul had decided to go to Norman for a few day to stay with a buddy of his, since he couldn't stay at home.

I checked in at the hospital, registered and went to the waiting room.  My name was called and I went back and met with the doctor who gave me the pills.  I took the two pills and was quickly escorted out of the hospital.  I called Paul to let him know that I was on my way home and he asked me to drive around and waste some time.  I had no idea why but I did.  He called and told me I could come on home.  When I got there I found a single red rose and a huge teddy bear with a card waiting for me.  Even though Paul couldn't be there for Valentine's Day he wanted to make sure I had something special.  I fell in love with him all over again.  Before he left, my parents had shown up.  I sat in the dining room and my parents and hubby were in the living room.  We chit chatted for a few minutes and they all left.  I was home alone in complete isolation.

That was such a lonely time.  I hated it.  My Aunt Kim did stop by...she bought me a card, called me and had me come to the door so she could show me.  Then she took off with the card...don't ask why, I have no idea.  There was another night that I was on facebook and feeling pretty down.  I got to chatting with my cousin Cheryl.  She really helped me so much.  It was getting late and I told her we could talk later and she wouldn't let me go until I was better.  She said that a friend needed her more at that time....I realized she was talking abou me.  I really feel that during that time my cousin and I really bonded and became closer.

The first day wasn't so bad.  The second day was horrible.  I woke up that morning and couldn't get out of bed.  It took so much energy to get up out, go to the restroom then to the couch.  I basically lived on the couch for two days.  I didn't even want to fix me anything to eat and I really didn't want to shower either (I know, tmi)  Paul and my mom called (no not at the sametime), and I couldn't talk, had no voice.  Paul said I sounded like I had been to multiple football games and lost my voice.  So, on top of having no energy, not hungry....I couldn't talk and felt horrible.  After two days alone and with how sick I was, Paul decided to break the rules and came home.  He felt it was wrong for me to be by myself...how would anyone know if something bad happen?  He came right home.  He slept on the couch and I was in the bedroom.  He sat one side of the house, I was on the other.  When I showered, I washed it out after like I was suppose to and he would clean it again before he would shower...just like he would clean the toilet before he would use it.  We couldn't take any chances.

The end of the week couldn't come soon enough.  And it came with drama.  I had to do a whole body scan (http://www.webmd.com/a-to-z-guides/thyroid-scan) and after I could finally eat some real food.  I got to the hospital and recieved a call that my grandpa was being taken to the ER.  I met and waited with the family until my appointment.  When it was time for my scan, I left and after the scan was over I found out they were in the process of moving grandpa to ICU.  I was also starving, so I called Paul and he brought me Subway.  I have to say, that is one of the few times I felt bad eating in front of people.

The scan is over...now we wait for the test results and pray that grandpa would get better.

Surgery #2:

At some point between the first surgery and meeting with the new doctor, I ended up seeing my primary care doctor.  I told her about my frustrations with the whole cancer thing and she suggested putting my on some anti anxiety medicine.  I of course turned her down.  I didn't need it....I have a great family, great church family and awesome friends.  I didn't feel that I needed to be medicated...I was just fine.  Looking back, I wish I would have.

It's around the first of December and I'm meeting with my new doctor to get the ultra sound results...and again the test was fine.  I was once again given two options...either drive back and forth every three to six months for testing or have a second surgery to remove the lymph nodes.  Ugh, what a decision.  I didn't want to go through another surgery, but I didn't want to drive back and forth having tests ran....after awhile, you start to feel like a test dummy.  The doctor didn't feel that I needed a right neck dissection but the oncologist wouldn't let me go through treatment unless I had the surgery.  Ugh, this was so frustrating.  What was the right decision?  Surgery or no surgery.

My poor husband was so tired.  Like I said earlier, he works nights and I'm on days.  He got up early to go see the doctor with me.  At start of the appointment we were excited that I didn't have to have the surgery, then came the crushing blow.  My doctor went and called the oncologist to let him know about the results and that he didn't feel I needed surgery....well, the oncologist said NO.  I had to have the right neck dissection or no treatment.

Paul kept telling me to hurry and make up my mind.  He even went as far to say I wanted the surgery so just do it.  All he cared about was getting back home and get some sleep before he had to go back to work.  I understood...I really did.  He was tired and had a long night ahead of him, but I couldn't make up my mind.  We sat and talked, debated, discussed and weighed our options for about three or four hours.  It was crazy.  I was so thankful for having doctor willing to take that kind of time with me.

Everytime I thought about being tested every few months....it just never felt right.  There was this uneasy feeling I had...I guess you could say that I knew what I needed to do but I just didn't want to admit it.  I tried to explain that to Paul, but he just wanted to leave.  My poor doctor did everything possible to convince the oncologist that surgery wasn't needed, like I said he wouldn't cave.  Then my doctor came up with a third option...leave the Stillwater Cancer Care Center and transfer all my paperwork to OU Medical Center and basically start over.  We seriously considered that...but considering what winter can be like in Oklahoma, I felt driving back and forth could be trouble. 

Then came the more details on what kind of surgery I was facing.  The doctor would re open part of the old scar and make it longer.  He will take out the lymph nodes on the right side of the neck down part of the shoulder.  He would also have to move the major nerve in order to get to the lymph nodes in the shoulder area and then move the nerve back.  He was not able to guarantee that I wouldn't have any problems with my right side.  He said I could have some numbness, pain and have a hard time with my right arm for a little while....or it could never get better.  Each patient is different.  I looked at Paul, I asked what he thought...he said it was up to me.  I looked at the doctor and said...lets do it.

We were able to schedule the surgery for December 15th.  First, I was shocked it would be that soon.  Second, I wouldn't  have to burn to much leave since I will be off during part of Christmas break and campus closes for about a week.  Since we were already in the City, I was able to go and have some of the pre-op stuff done.  Did the paperwork, blood work, some xrays...next time we are in the City will be surgery day.

Surgery was scheduled for 7:00/7:30 am and I had to be there around 6:00 am.  Hubby and I decided it would be best if we stayed the night before that way we wouldn't have to get up to early to drive to OU Medical Center.  We got to the City and hooked up with his sister Cathy for dinner, went back to the room to chill.  I really think I was more nervous about this surgery than the first one.  Oh well, nothing I can do about it now.

Morning came, got up and headed to the hospital.  Got checked in and in walks my mom, dad and sister.  I went back to my room, got changed for surgery, iv started and the door started rotating.  Next thing I knew my awesome Pastor and his wife came in.  We prayed and back Paul and I went.  I'm not sure what to call this but first I was in the room I changed in, then Paul and I went to a pre-surgery type room (happy shot time)...we gave each other a kiss and I was rolled into another surgery.

 Next thing I knew I was being woke up in recovery and I wasn't feeling well.  I had a headache, I was hot, just not feeling great at all.  The nurse took my temp and it was 102.  I was in recovery for a while...they were trying to get my temp down.  I finally left recovery and went to my room, not to long after the doctor came in and said I could go home.  Considering I wasn't feeling great I decided to stay in the hospital overnight.  Why not, it was already paid.

My sister and parents left and I was finally sent to a room and slept.  At some point Paul had left go see a buddy.  I woke up and was hungry so I ordered some food then I noticed this drain coming out of my neck with a ball on the end.  What on earth is this...about that time I had a friend come see me and my food was delievered.  I felt bad eating in front of my friend but I was hungry,  I went to take a bit and couldn't open my mouth....it was so crazy.  Trying to chew my food was fun and talking was some work out.  Did I mention it was also hard to lift my arm?  The doctor said I could have some trouble but I wasn't expecting this.  It was such an insane night.

It was around 7:00 or 8:00 that evening and the doctor came in.  He asked how I was feeling and I said better then he told me he got the pathology report back.  He said I made the right decision on having the surgery.  Out of 29 lymph nodes that were removed they found cancer cells in eight.  So out of two surgeries I had 30 lymph nodes removed, cancer was found in one and cancer cells were found in eight.  Hmm, and all the tests came back saying things were fine.  You can't tell me that God wasn't directing me in what to do. 

I got to go home that next morning.  The fever was gone and I was feeling better and we were trying to get back to Stillwater before the ice hit.  We got home just in time.  Paul dropped me off at home and he once again went to get my perscriptions filled and pick dinner.  I wanted to shower but had to wait for him to get back.  Once he did he had to help me get undressed, I got in the shower and then tried to figure out what to do with the drain.  I couldn't hold it, couldn't set it anywhere to set it so I put it in my mouth.  Yes, I clinched it with my teeth so I could shower.  Have you ever had to shower with one arm?  It is one of the most difficult things to do.  Then I tried to wash my hair, that wasn't any easier.  I got out, Paul helped me put on a tee shirt and he had to help dry my hair.  I thought my sister helping me after surgery number one was funny, you should have seen Paul.  Then I asked the impossible...I asked him to help brush it AND put it in a pony tail.  Trust me, I was ready for my arm to heal.  It really was funny.

We went back to get the stiches out and the drain removed.  I finally could wear a shirt without a pocket to put the drain in.  Getting the stiches out wasn't that big of a deal.  The drain on the other hand was.  The doctor cut the stiches and said, on the count of three I'm going to pull it out.  Are you ready?  I said yes, one...two....three and he pulled and pulled and pulled.  Paul's eyes kept getting bigger and bigger and that is when I started to freak.  After the doctor was finished Paul asked...how did all that fit?  The tube was long.  I got up, we started walking out and I got light headed and felt like I was going to pass out.  I sat down for a few minutes and then we left.

Now that the second surgery is over, I can finally go through treatment.  I had a couple of more trips to the City just to make sure everything was healing okay.  I was ready to move on and get this cancer stuff over with.  The past few months have been crazy, I'm done and over it.  I was feeling like my life was on hold and there was nothing I could do about it.  What's worse...I love Christmas.  It's my favorite holiday but I didn't even care....but my husband did.  He knew I loved putting out all the decorations, a tree and shopping for my family.  He pushed me that year.  I didn't want to get a tree or put out the decorations but he made me.  I really love that man.  He took me to church so I could attend Christmas service...we both knew it would be to soon but I wanted to go.  My family was also willing to wait to have Christmas after I felt better, but I didn't want to wait.  It's Christmas and I didn't want everything put on hold because of me.  Paul and I also decided to go ahead and go to the bowl game.  Oklahoma State played Ole Miss in the Cotton Bowl.  Like I said, I didn't want everything to be put on hold.

The next step was treatment and the fun of the low-iodine diet.

Stillwater Cancer Care Center......a second surgery?

So, the staples are out.  I have gone back to work and now it's time to start seeing my oncologist.  Paul and I really weren't all that sure what to expect.  We knew I would have to go through treatment but that was all and it seemed rather obvious.  Most generally cancer=treatment.

We got to the Cancer Care Center and met my oncologist.  I loved my nurse.  She was absolutely wonderful.  Now my doctor on the other hand...he was nice, but odd.  Paul and I figured to have a specialty like and oncology, they must all be that way.  At first I didn't have that great of a first impression, but the more I got use to him the more I liked him. 

The doctor looked at my scar and said it was healing nicely.  Apparently the scar had to be healed in order to do treatment.  He then looked at my chart and suddenly had a puzzled look on his face.  I asked him what was wrong and he asked...so the surgeon only removed the thyroid and one lymph  node?  I told him from what I understood, yes.  He proceeded to say that wasn't acceptable and that I would have to have a right neck disection before I could go through treatment.

I think he could tell by the look on my husband's and my face that we were in shock...based off the look on  his face, he was not happy at all.  He then went on to explain that considering cancer was found in the lymph node that the surgeon should have removed all of them from the right side of my neck.  If they aren't he would have to give me more of the Radioactive Iodine (RAI or I-131:  http://www.cancer.org/Cancer/ThyroidCancer/DetailedGuide/thyroid-cancer-treating-radioactive-iodine) and if he did that I would be at risk of developing Leukemia.  Well, I don't want that...dealing with cancer is enough, I didn't need to add leukemia to the list, but I didn't want another surgery either.  Even though I wasn't able to go through treatment just yet, there were other things I was able to accomplish...like having a PET Scan (http://www.petscaninfo.com/zportal/portals/pat/cancer), a Body Scan, blood work, ect.  I was also told about the Low-Iodine diet (http://thyca.org/rai.htm) I will have to go on once I was able to go through treatment.  But first, I had to have the right neck disection...which meant I had to go back to the ENT and I didn't want to do that.

Side note/rant...okay, so I'm not happy that I'm facing a second surgery.  My family and I have talked about this several times and it has brought up several questions.  Why isn't there some type of protocol to follow when it come to Thyroid Cancer or cancer surgery in general?  There is no way or reason as to why I'm facing a second surgery.  Is it because the nodule was missed during the biopsy?  Is the communication between surgeons and the Cancer Care Center lacking?  Just what is the issue....okay, rant over (for now).

The body scan, PET Scan and the appointment with the ENT got scheduled.  The two scans weren't all that bad.  Meeting with the ENT was...I went to my appointment and was informed that (ugh, still frustrates me) he will not do the second surgery.  He told me that the technology in Stillwater and his skills are not advanced enough to the the right neck disection.  So, he will be sending me to a doctor in the OKC.  Great, not only am I under the care of two ot three doctors in Stillwater, now I get to make trips back and forth to Oklahoma City.  This just keeps getting better.  While speaking with my ENT, I had made mention that Paul and I were talking about going to the bowl game.  I was wondering if it would be possible this could all be done before hand.  At the time we weren't sure which bowl we would be going to, but I would love to be able to go if possible.  Yep, should have seen the look on his face.  You would have thought I had asked the impossible and I was putting him out.  I'm so glad I'm no longer under his care.

Another side note:  I bet you all are thinking I have forgotten that I had made mention I was going through fertility treatment because of PCOS....I haven't.  It was during this time there was a couple of news stories linking fertility treatments to Thyroid Cancer (http://infertility.about.com/od/infertilitytreatments/i/drugrisk_cancer_2.htm, http://thestir.cafemom.com/pregnancy/7284/Do_Fertility_Drugs_Increase_Thyroid).  I actually asked my oncologist and his nurse if this was possible and they said anything is possible when it comes to Thyroid Cancer.  There is no definate known cause (http://www.cancer.org/Cancer/ThyroidCancer/DetailedGuide/thyroid-cancer-what-causes) and it is the fastest growing type of cancer (http://www.examiner.com/article/thyca-groups-provide-support-for-fastest-growing-cancer-u-s).

I finally got a call from OU Medical Center...I have an appointment with my new doctor.  This was either right before or right after Thanksgiving, I really can't remember.  I LOVE this doctor.  He talks with you and not at or down to you.  Boy, I sure wish I had gone to him from the beginning of all this mess.  I had to have another ultra sound.  He wanted to know how things look since the first surgery and see if a second one is really needed.  He also took a picture of my scar because they (he and his research students) are trying to figure out a way to make the scars from Thyroid surgeries smaller.

We scheduled the test and made an appointment to get the results.