The plan....

Right on cue, Dr. Vasan came up with a plan. As if I should have ever doubted him. He asked me to make some calls and get the films and reports sent to him. He asked me if I had and endocrinologist, and I said no. I explained to him that my endo got a fancy job at the Mayo Clinic.  How could you really pass up that kind of job?  You know.  He said that was the first thing we were going to do...he is referring me to one at OU Med. He said second, we need to do some lab work.  Check my TSH, tumor marker and my Thyroglobulin. He did ask when was the last time all this was checks, I told him I haven't had any done since the beginning of the year. Finally, he wanted my appointment rescheduled for after December 7th. That I didn't understand, but okay.

Here is where my appointment took a change for the better. His nurse came in to let me know it would be a few minutes. He was dictating his notes from our appointment then they would be printed so that I could have a copy.  That's something new. I looked at Paul and the nurse asked if everything was okay. I told her I felt frustrated and felt like the trip was a waste of time. I even felt like when I was first diagnosed with cancer and was being sent to this doctor, to that doctor, then back to another. It was crazy.  She then looked at me and said...actually your appointment is at a great time.  Of course I looked at her all confused.

She explained...the reason he wants my appointment after December 7th is because on that day the tumor board meets.  The what?  The tumor board consists of my doctor, and endocrinologist, oncologist, and some other people.  They sit together and discuss each case.  They take a patients file and look through it...this is what the blood work says, this is what the films and reports say, this is how I feel we should treat this patient, this is what I think, ect...that way everyone is on the same page.  Wow, what a concept.  Having all my doctors on the same page.  I don't know if I know what to do with that.  She went on to explain, even if I had my paperwork he would more than likely have me do blood work anyway and would still meet with the board first before we made any type of plans.  Ugh, that kinda upset me.  I went to the appointment expecting answers....not more questions.

I went a little further in explaining more of my frustrations.  I told her that I have decided that I want all my doctors at OU Med.  My endo, oncologist if needed, ect...just have everything in one place.  She completely understood and said that was fine.  I asked her what I needed to do to make that happen.  She said to call the Stillwater Cancer Care Center and have them send my file(s)/paperwork and since I was already having films sent just request all of them.  His nurse also asked when was the last time I had a PET scan done and I told her that one hasn't been done since I was first diagnosed with Thyroid Cancer.  That answer seemed to have surprised her.  I did tell her I just had the whole body scan done in January.  Tina (Dr. Vasan's nurse) said...asked again about a PET scan and I said no, just the whole body scan, it was like she was surprised that it had been so long since I had one.  Wish I would have thought to ask if at some point I should have had another one.

So, we went over the notes from the appointment with Dr. Vasan, made another appointment for December 10th and I wend to the 2nd floor for the blood work.  After that was over I went to the car still frustrated but not as much.  I was excited we had a game plan and I loved the fact there was a committee that met twice a month.  Again, how refreshing that the doctors work together.  Wish that would have happened in the beginning of all this.  But at least I have it now and I am very confident that I will be very well taken care of.

That next day was crazy.  I had physical therapy and several phone calls to make.  I had to call Servant Imaging, Stillwater Medical Center, Stillwater Cancer Care Center and Mercy.  For the most part everyone was pretty easy to talk to...once I was directed to the proper departments.  A couple of the places required my signature but they were willing to fax me the forms and I could fax them back.  Like I said, it was easy....I honestly expected it to take forever (between working and making calls), however it only took half the day.  Now all I have to do is keep my fingers crossed that they receive everything by the 7th of December. 

On Thursday (November 27th) I received an interesting phone call.  It was from my doctors office.  Apparently they have received some of my blood test results.  Apparently my TSH levels are to low (I had no clue...it does explain a lot) and they are adjusting my Synthroid.  I was once again asked when I had it checked last and I told them back in January.  They asked for my pharmacy number and told me to start it tomorrow (Friday) and that I need to come back in 10 weeks to have it rechecked.  I of course asked if I could do it here in Stillwater and the nurse asked....is there anyone there you trust?  Good point, I will come to OU Med.

Then on Monday (December 3rd) I had another phone call.  Another nurse called to confirm the last two tests I have had done.  The MRI and Ultra Sound and confirmed the locations.  I said yes and asked if they had received everything and she said yes.  Praise the Lord, they got everything they needed by the 7th. 

Now all I have to do is wait for my appointment on the 10th to find out what will happen next.

The Doctor didn't what?????

So my doctors office called and told me that my appointment was scheduled for November 26th at OU Medical at 3:00 pm.  I then turned and called my hubby to let him know.  We were both really impressed that I got in so quickly.  I had to make a few phone calls to change a couple of appointments and then we were set.

One of the pluses of having a doctors appointment in OKC is that hubby and I stop by Ted's Mexican.  Love there food.  So we took off the afternoon, stopped for lunch and then went to OU Medical Center.  Actually we went to Peggy and Charles Stephenson Cancer Center.  It's on the OU Medical Center Campus.  Great facility.  You walk in and it's nice, bright, cheery.  Well, as happy as one can be when dealing with cancer and other medical issues.  It took a while to find Dr. Vasan's office.  All I was told was where to go and when, I wasn't told a room or floor number...but we found it.  With help from an OK State fan by the way...yep had to throw that in.

 

So I got checked in, filled out some paper work and just as I sat down the nurse came out and got us (hubby and I).  Had my temp taken, blood pressure , weighed (I asked if I could skip it considering I just ate Mexican food...didn't work) and then back to our room.  We only had to wait a couple of minutes if that.  Then came in Dr. Vasan.

It was nice to see him again, of course I wish it would have been under different circumstances.  We briefly chit chatted.  I told him I was now in physical therapy because of some of the problems I'm still having with my arm and his wasn't surprised.  He said with the surgery I had it was to be expected.  We chit chatted a little more, then he looked at my scar and was pleased with the way it has healed and then we got down to business.

His first question was...so what brings you in today.  I looked at him funny and then looked at Paul.  All I could think was............you tell me.  So I explained to him what has happened over the past several weeks.  I had a MRI done because of the pain I was in, told him about the fluid that was detected, explained to him about the Ultra Sound, and then he looked at me and said...you didn't by any chance bring any films or reports did you?  I looked at Paul and then at Dr Vasan and said....no, it should have been sent with the referral.  Then the boom happened....I was told that it wasn't.

Wait, what?  They didn't send the report(s) with the referral?  How do you forget to do something like that?  Now I'm feeling crushed and like the appointment was a waste of time.  Why did we drive to the City for nothing.  Dr. Vasan can't do anything without the report or running his own tests.  Good Lord, now what am I going to do?  I felt completely crushed.  I really felt like I did when I was first diagnosed with cancer.  I went from this doctor to that doctor back to this doctor.  I felt like nobody knew what they were doing.  Almost like I was falling through the cracks...ugh!!!  The frustration!!!

Physical Therapy...new meds....more tests...oh the joy:

So I started physical therapy on November 6th.  Having four knee surgeries I had a pretty good idea what to expect.  I walked in and saw Joe (he was my therapist for one of the knee surgeries).  We chit chatted for a few minutes to get caught up and then the evaluation started.  He informed me that I was pretty tight (duh) and asked why I haven't done therapy before now.  I told him nobody suggested it and I didn't know I needed it.  I told him that my doctor who did the right neck dissection said I would have some problems but I didn't realize it would last this long or have this many problems. 

Joe did some tests and said that I have definitely lost some strength in my right arm.  He had me squeeze this dumb bell looking thing that measure the pounds your able to lift/squeeze, whatever it was.  On the left side I measured 52-54 pounds and on the right I measured 32-33 pounds.  Big difference.  So Joe said...we have some work to do.

My first real appointment was interesting.  Almost everything Joe tried to do hurt...he could hardly touch me.  At the time, I was glad that I was on the Lyrica three times a day.  It helped dull the pain a little, and by the time I got home from work I would be taking my pain meds.  There have been times I have gone back to work from therapy with a major headache and wishing I could just go home and go to sleep.  It has been such a slow process...well in my opinion.  I want a quick fix, I think we all do. 

Between the therapy and the Lyrica (new med) I was having a tough couple of weeks.  I'm almost embarrassed to admit this but I was at our WVU/OK State game and I was watching the pregame warm ups.  I was commenting on how I didn't like the the uniforms.  Then I realized my team was wearing the ugly unis.  I about fell over.  The person I was talking to about fell over laughing.  I couldn't believe that I didn't realize it was our team.  Well then we had a penalty called and I turned to my dad and said.....wait, better not post it.  Don't want to get bashed for not being "politically correct".  Just know it was funny.  I would go home from work and sleep...I almost fell asleep at my desk.  I was moody, confused, easily distracted (no comments needed)....it was just horrible.

I woke up one Sunday morning and told Paul (in tears) that I didn't want to take the pills anymore.  I didn't like the way they made me feel.  He said then stop taking them...I did.  I started taking them at night only just until I ran out.  I never refilled the prescription (plus my copay was $50 for them.  WOW).

So I have had eight physical therapy appointments and I can now turn my head to the right side and I have sleeping on my right side.  I haven't been able to do that since December 2008.  I am feeling so much better...until yesterday.  Boy, did Joe hurt me.  There are still some issues I'm having.  I still get this sharp pain in my neck that goes down my arm and three of my fingers still go numb.  Now the good news is that we seem to have been able to pin point what is causing it.  It is the nerve that had to be moved during the right neck dissection.  Now we have to figure out a way to fix it.

I know its been a couple of weeks since my last post.  So I'm not sure if you remember or not, but I had mentioned that the MRI detected some fluid in my saliva gland.  I went to my regular doctor and he ordered an Ultra Sound.  I had the test done on November 20th and for the most part it went well. 

The technician's student came to get me and asked if it would be alright if she could check my neck.  She informed me that the radiologist would be in and he would double check her work.  Of course I didn't mind, we all have to learn at some point.  He came in and then they started checking things.  First they checked the right side and she would identify what she was seeing, she took pictures, measurements, ect...then they started looking at the gland.  The gland itself looked great, then they looked at the ducts (I really hope I'm saying that right).  As they were looking they found a cyst in on of the ducts.  That would be the fluid that the MRI detected.  Then the technician decided to check the left side just to compare the two, well and so the student could learn more.

All the sudden it got quiet.  That's when I knew something was wrong.  As they were looking they discovered a couple of abnormal lymph nodes.  Apparently one lymph node is about two to three centimeters big.  They said with my history I need to have it checked.  NOT what I wanted to hear and of course with everything I have been through....I cried.  Going back to work after that was fun.  Everyone was asking how did it go, did they say anything, what did they find, ect...I would start to explain and cry.  All I could think was how frustrated I was.  It never seems to end.

You know, when I was first diagnosed all I heard was if you were to get cancer, Thyroid Cancer is the best to have.  It's the easiest to manage and cure.  Right now, in my experience it might be the best to manage but it seems to be the most frustrating.  When you first go through it your not told about all the post-cancer stuff.  I'm sure all cancer patients go through it but right now this is how I feel.

As soon as I got back to work I immediately called my doctors office and asked to be referred to either St Francis in Tulsa or OU medical in the city.  Thankfully I got in with Dr. Vasan at OU Medical.  He did the right neck dissection and I know he will take good care of me.

Happy Birthday to me:

Nothing like meeting a new doctor on my birthday (October 29th).  Good thing I ended up liking the guy....he is a pain management doctor from Rehabilitation Physicians of Oklahoma.  Real nice.  I wasn't sure what all to expect from him when we first met.  I called my dad earlier that day asking all kinds of questions.  What to expect, what is the doctor going to do, what will happen with the first appointment, ect...

The appointment went the way dad said.  A lot of questions, poking, examining, more questions and then finally my MRI results (finally!).  According to the doctor my MRI wasn't all that bad.  It looks like I have arthritis in my neck (to be expected), fluid in a gland(s) and not sure why, and I have a tear on a disk.  He said according to the MRI I don't have anything pressing on a nerve (in the neck area).  He did a couple of tests and then told me that I have lost use in my right arm (duh).

He went a head and increased a couple of my meds and added a new one....Lyrica (http://lyrica.com).  After the car wreck I remember being put on Lyrica and it seems to me that I really didn't care for it back then.  However, at this point, I don't care...just fix me.  So far it hasn't been all that bad.  Last night was a bad night, but I'm sure that is to be expected with a new pill.  The doctor told me to start taking it at night and gradually get to where I'm taking it three times a day.  I took it that first night and woke up the next morning feeling wonderful.  Haven't felt that good in a long time.  So, I took one that morning and night.  The next day...not so good.  So far today...things are better.  I don't think I'm going to up it to three times a day until the weekend.  That way I can sleep if needed.

The next thing the doctor has added is physical therapy.  You should see the list of things he wants me to work on...crazy.  I'm to go 2-3 times a week for 4-6 weeks.  I have not problem with that.  I knew I had lost some use, just not sure how much.

I  had my physical therapy evaluation this morning (November 6th) and of course I cried.  You know, it was an eval, you shouldn't cry while being evaluated before you actually start the physical therapy.  Wrong, wrong, wrong, of course you cry lol.  You are being poked, stuck, pulled, turned, all sorts of things are happening so that the therapist can see what needs to be worked on.

I felt so good and comforted after my appointment (total sarcasm by the way).  Nothing like being told that one's neck is jacked up and my therapist doesn't know how on earth I have been able to go as long as I have.  He also didn't understand why I haven't been put in physical therapy before now.  I asked him if I should have been in therapy after my 2nd surgery and he said considering the problems I had post-op...yes.  He went on to say that it's easier to say that now.

I think the most frustrating thing for me is I have learned so much more since the 2 surgeries and treatment than what I was taught while going thru it.  Looks like I will learn even more after my doctors appointment on the 15th.  Gotta know what gland has fluid in it and why.

Stay tuned!

Another new doctor....or two:

As I mentioned in my last post I'm looking for a new endocrinologist (http://www.hormone.org/Public/endocrinologist.cfm) and I'm now under the care of a pain management doctor.

Why a pain management doctor you ask?  Great question and I will tell you.

When I first started my blog I had made mention that I was rear ended in 2006 and that I had a right neck dissection in 2008 (second cancer surgery).  I believe I also mentioned that since I have the right neck dissection that I have been in pretty consistent pain and have been having problems with my right side.  Well, the issues aren't going away and it's getting to the point that the medication I have been on isn't working.

Well, part of my family has been trying to tell me that they feel the issues is from the car wreck.  I don't discount that isn't a part of the problem, however I feel it's caused from the 2nd surgery.  My doctor who did the second surgery told me he would have to move a nerve that goes from my neck through my shoulder in order to get all the lymph nodes that needed to be removed.

Now my wonderful husband keeps telling me...remember the doctor that did the nerve burn did say that it's possible those nerves could grow back.  That was after the wreck.  I do remember the doctor saying that but I don't remember hurting then like I do now.  That's not to say the issues I'm having now aren't being caused by both.

However, I have been a member of a wonderful Thyroid Cancer Support Group on Facebook and have asked if any other Thyroid Cancer survivors/patients have had the same issue...I quickly found that I'm not alone.  I'm not sure how common or what all the side effects are.  All I know is I'm in pain...a lot and I'm not sleep and can't get comfortable at night.  I haven't been able to sleep on my right side for two years now, I'm getting headaches, I feel that I have lost strength in my right arm and I have tingling and numbness.  When there are weather changes and it's cold is when the problems are worse (arm burns, feels twice it's size and when the wind blows and hits the back of my neck it hurts). 

My my, I sound like a baby.  I'm not, I'm just tired of hurting.

I remember after the second surgery (might have already mentioned), I couldn't lift my right arm and it was hard to open my mouth to eat or talk.  Well, two plus years later I'm still having problems.  I honestly don't remember my doctor saying the problems/issues would be life long.  I thought it would be a temporary issue and would heal on it's own.  It hasn't.

I'm still numb from my jaw down my neck....has yet to return.  And the pain...well, lets just say there is pain.

Time for honesty.  My husband for the longest time didn't believe me when I said there were still certain areas the feeling hadn't returned.  I finally had to let him pinch me in the areas that are numb for him to believe me.  It was rather funny.  I also need to admit, at my previous job I freaked out a couple of student by doing the same thing to them.  Hey, they wouldn't believe me.  Okay, time to move on.

With all this, at my last doctors appointment I finally told my doctor that I have had enough.  Now that my meds aren't touching the pain it's time to do something.  So an MRI was ordered on done, they got the results, they referred me and sent my paperwork to the pain management doctor and I have an appointment on the 29th.  The 29th can't get here fast enough!  I'm hopeing and praying I get some answers and this doctor will be able to help me.

Grand...another doctor and I still have yet to find an endocrinologist.

Not sure what else to say.  I keep thinking that cancer is the gift that keeps giving.  I hate cancer.

Stress....what stress?

I know it's been a while since I have last posted...so let me try to get you caught up.

July 16th, 2012 my mom had a heart cath done.  We (my dad and I) have been discussing for sometime that we knew something was right with mom.  We just wasn't all that sure what.  In March 2012 (actually March 11th), my dad and I took mom to the doctor.  At that time she was told she had bronchitis.  She was put on meds and was on her way to feeling better.  She did improve some but not alot.  Then the coughing started back up.  No other symptoms, just coughing.  She finally made an appointment with her primary care doctor and he immediately started a battery of tests.  He thought she was going into congestive heart failure.

More test were ordered, she was sent to a cardiologist and he said....your having a heart cath done Monday.  And that was that.  She went in and come to find out she had three arteries clogged.  Two of them they were able to balloon and the third they had to put a stint in.  The difference was night and day.  When mom came out she looked happier, her skin was brighter...she was just better.  She had to stay in the hospital over night and was able to go home the next day.

Got her home, ran some errands for her and dad...then I finally went home.  Around 7:30/8:00 that evening my hubby comes home for lunch.  He didn't look right.  I was trying to have a conversation with him but I felt like he was holding three at the same time.  I finally asked him to stop and when he looked at me I felt like I was looking into space.  There was no emotion and his eyes were vacant.  I told him we were going to the ER.  He said why and I told him I thought he had heat exhaustion.  After making some calls and after his shower (yep, he wanted to shower before we went) we were out the door. 

Side note:  Did I mention I was also in the process of throwing my parents a surprise anniversary party?  Yep, started planning around March however now the party is less than a month away and now mom has had a heart cath and I have hubby in the ER.  Ugh...

As expected...Paul had heat exhaustion AND dehydration (not expected).  They hooked him up to an IV, ran some tested and then we were able to go.  The rest of that week for hubby was crazy.  Between trying to get better and the drama that unfolded for his job...you would have thought the end of the world was near.

So now I'm dealing with trying to get hubby better, his work drama, making sure mom is doing okay and finishing up with the party.  But wait, it gets better (keep following, I promise it will tie together)...I'm not sure where you all are however in Oklahoma we haven't been getting a lot of rain.  Lack of rain causes droughts...droughts cause fires.  So, on top of everything else, fires break out here in Oklahoma and one of the fires isnt' all that far from my sisters house.  A week before our parents 40th Surprise Anniversary Party....oh joy.

Finally the weekend of mom and dad's party.  It was awesome.  I was so happy and proud of my parents.  With everthing that has happened over the past few years they deserved to be celebrated.

Happy 40th Mom and Dad!!!!

I couldn't have been more proud or happie with the way my parents party turned out.  With all the work that myself, my sister and Sister Laureene (friend of the family) put in it...including up to the last minute it was wonderful.

Now for the truth...I couldn't have been more happy that everything was finally over.  By the end of my parents party, mom haveing the heart cath, my hubby ending up in the er and his work drama...I was wore out.  I use to be able to deal with this type of stress and not be bothered by it.  Now, I get wiped out...sick...hurt, you name it and more than likely I deal with it.  Ugh, it's so frustrateing.  After mom and dads party I went home and slept for a couple of hours.  Went to church the next day, came home and slept a couple of more.

Oh...did I mention the day before mom and dad's party I got a letter from my endocrinologist informing his patients that he got a job at the Mayo Clinic in Minnesota?  Don't get me wrong, I'm happy for him but at the same time I'm so sad.  Loved my doctor...for the first time since all this started I felt like I finally had someone who understood me and what I was saying.  Now I get to find someone new.  Oh Joy (as my dad would say).

Three Years Cancer Free:

It was towards the end of September 2009.  Paul and I were heading back to the Stillwater Cancer Care Center to get my six month test results.  We were about to find out if I was cancer free or not.

Thankfully football was in full force and I was able to stay busy enough to where I was thinking about it to much.  Wait, that's a lie...no matter how busy one is you always think about.  Awake, asleep, it doesn't matter.  Whether or not you are cancer free will always be on your mind.

Paul and I had talked several times what we would do if the cancer was still there.  The scan I had after treatment still showed cancer.  My oncologist at the time said that was normal and that more than likely the residual cancer that is still there would be gone by the time I did the six month scan.

Have I ever mentioned that I'm not all that patient of a person and that I hate waiting?  One thing I have totally learned from this whole cancer thing is that you hurry and wait.  Not matter what it is.  Blood work, CT Scans, Ultra Sounds, Whole Body Scans...all you do is wait and I'm not that good at it.  Worry comes with waiting and all I did is worry.  Football games help distract me but I still went crazy.

For some reason I don't remember the exact day I got my results.  I remember the dates of both surgeries and treatment but I don't remember the date I got my scan results.  One would think I would but, oh well.

It's time for my appointment and I was as nervous as could be.  We got there, checked in, paid my co-pay and we waited.  Finally it was my turn.  I went back into the examining room, my nurse checked my blood pressure, temp, went over my medication list and said that the doctor will be in.  So we waited some more.  My doctor came in.

Now I don't remember what all he said.  Truthfully I don't have a clue.  The only words I remember is....there was no cancer found.  After he said that I was cancer free he did go on to explain that our goal was to get me to being scanned once every five years.  So far I have been scanned every year.

Earlier this year I decided to celebrate being cancer free early.  As you know back in December we had a scare that the cancer was back.  So in April I got a tatoo stating that I'm a cancer survivor.  Maybe I should have waited, but I figure....I have a scar I don't want, had a scare that the cancer returned, so I'm getting some ink.  Oh, and since I'm not a 100% percent sure what day I was told I'm cancer free.....I'm celebrating all month long.

Don't forget that September is Thyroid Cancer Awareness Month.  Don't forget to check your neck!