A time for honesty...

When I first started my blog I never thought there would be any interest.  I wanted to share my story and hoped that I would be able to help others.  I also needed a place to vent and come to terms with everything that has happened.  I honestly never dreamed that so many people would be interested in what I had to say, how I felt, or could relate with what I have been going through.  Honestly, I'm not all that interesting of a person.  So, if I end up repeating myself...please just bear with me.

You know how you buy a car and all the sudden you see that type of car everywhere?  That is how I felt when I had my thyroid removed.  All the sudden I noticed many people with the same type of scar on my neck.  Apparently it is more common than I thought.  I know my oncologist told me it was one of the fastest growing types of cancer, but wow.  It seemed like I was seeing the scar everywhere.

In the beginning I felt like I was being pushed in every direction.  Between all the doctors visits (and them not being on the same page), working, church, family, holidays, ect...I was struggling with my faith.  I think I might have talked about this before, however it has come up again.  A few weeks ago, I ran into a couple from my church while Paul and I were at lunch.  He had asked me how I was doing and I told him okay.  I mentioned how frustrated I was with everything that was going on...and he understood.  He was dealing with his own medical stuff.

I also told him...and I don't know why, but I said that I was having a lot of trouble trusting God.  Now, don't get me wrong I have faith in God and I totally trust him...but at that point in time I was struggling.  Actually to some degree I still am.  He said he understood and that he was praying for me.  Unfortunately all I could think was great, someone else praying...a lot of good that has done.  I sound like a great Christian don't I?  But of course I told him thanks I appreciate it and went back to eating.

During the past couple of weeks I have gone back to thinking how I dealt with the first diagnosis.  I really questioned God.  Why me?  What I have done to deserve cancer?  I'm sure everyone has those thoughts.  Come on be honest....you know you have.  It doesn't matter if you were diagnosed with cancer or something else, or maybe you have felt like you every time it has rained it poured.  See, that is the part I have been dealing with.  I feel like it's still raining and pouring.

I was so excited when I was told I was cancer free.  In my mind I was thinking, great now I get to start counting the years.  The goal is to get to where you are go through and get tested once every five years.  I have yet to be able to do that.  I have been test every year for three years now.  I know it doesn't seem like much but if you are a thyroid cancer patient you know what I'm talking about.  The low iodine diet, the shots, the tracer dose, ect...it's a pain.  Again it doesn't sound like much...unless you are going through it.

Now that it is almost four years after the second surgery and I'm still dealing with "stuff".  My right arm, nerve issues, abnormal lymph nodes...all this "stuff".  It's so irritating.  I guess you could say this is where I start to question my faith.  Once I was declared cancer free I thought that it would be smooth sailing.  But no, I'm still dealing.  In my heart I know God is in control however in my mind I wonder at times if he is still with me.  I keep telling myself that it is natural to feel this way and that I have to keep my faith...but it is hard.  The times that it's the hardest is when I feel close to God and when things are going good...wham something happens. 

This year I have also dealt with survivors guilt for the first time.  I had to have a friend who was in the first war in Iraq explain to me what it is.  See, a few months ago I had a friend of mine tell me she is ate up with cancer.  They had to stop chemo because it's not working anymore.  I felt crushed.  I haven't seen my friend in a while and we had just got back in contact with each other.  This is the news I was expecting.  Why...why her?  Why not me?  I just don't understand.  It's just like my awesome aunt who I loved so much...why was it her time.  We all have so much to live for.  Why did I get off so easy.  WAIT!  This has been far from easy, but still....why.

When you go through this you are informed of all residual stuff.  Just because you are cancer free doesn't always mean there won't be any other issues.  For example the problems with my right side, all the tests, scares that it's back, abnormal lymph nodes, ect....the list can go on and on.

And through it all...I have to keep reminding myself that God is still in control.  I might not always feel him.  I may slip, go on a rant and fall to my knees apologizing for not trusting him...but I really do know, down deep that he is still there.  Down deep I also know that it's not because what I may or may not have done, I know it has nothing to do with my past...it just happens.  Nobody knows why.  I'm not saying this is the path God wanted me to have.  You know why I know...I have been able to help so many other people.  I have been able to share my unfinished story as a testimony.  Yes, I get frustrated, yes I get mad, depressed, and want to punch holes in the walls.  However, I know that God is carrying me and with each speed bump, it's another lesson to learn.

Don't get me wrong...I feel like I have learned more than enough lessons.  Evidently there is more that I need to learn. 

Physical therapy and medicine adjustments.....

I know I have mentioned before, my pain management doctor put me in physical therapy.  I really wish I would have been in before now.  The difference that pt has made has been awesome.  Thank you Dr Claflin for suggesting it.  I have almost gained full mobility of my head and neck.  I know that must sound strange but for the past two plus years I have only been able to turn my head to the right part way.  I would have to move my whole upper body to look at something that is placed to the right.  It got to where I would try to sit to the left of the tv, somebody or something that way it would be easier to look to the left.  Does that make any since?  I hope so because I'm not sure how to word it otherwise. 

Okay, moving on.  So I'm able to move and turn my head more and I feel like I have more strength in my right arm.  My physical therapist did a progress evaluation and when he retested how many pounds I can squeeze (that dumb bell looking thing that you squeeze and it measure pounds) I was able to squeeze 9 more pounds.  So in my right arm I have gone from 32-33 to 41-42 pounds.  I almost feel like I'm somewhat back to normal...well almost.  Truthfully, this is the best I have felt in some time.  I can look up, down, turn my head...it is so awesome.  I still have some trouble looking up or down for long periods of time.  But, considering where I started...I'm so excited to be where I am.

I'm still dealing with some numbness and tingling in my pinkie and I still get a sharp pain in the side of my neck.  When I do some exercises it flares up.  It has confused my physical therapist.  He has pretty well come to the conclusion that the nerve that runs under my clavicle (which was the nerve moved during my 2nd cancer surgery).  Now the question is...what does it have to do with the nerve that runs to my pinkie.  I trust my pt guy and I know they will get it figured out.  Actually I have a physical therapist who is a guy and one who is a girl.  I love them both!  I'm a work in progress but I'm getting better and I'm excited.

So, in the title I mentioned medication change.  When I got a call from my new doctors nurse about my TSH level, they lowered my Synthroid.  I was on .175 mg and now I'm on .125.  It's only been about a week since the change, so I guess I'm feeling okay.  I'm pretty tired but I believe that it's because things have been really busy.  The day my medication was changed I was asked if I would be interested in working the high school championship games.  Wow, crazy.  My dad offered to help so of course I asked if he could.  It's fun working with him.  So we worked until late Friday night, all day Saturday and we are doing it again this weekend.  Actually it's really fun.  Been sometime since I have watched high school football.  I'm sure that has a lot to do with me being tired.  I never realized I needed a medication change.  Normally I know the signs but this time I didn't.  I did notice my hair kinda falling out but it is season change, like I said I have been tired and my husband says that I have been moody.  I guess lol.  I have blood work done in December so I guess only time will tell.

All this fun while we are in the holiday season.  Of course...why not.  When all this first started we were entering the holiday season (diagnosed with cancer November 2008), and we had a cancer scare last year...in December (2012) so why change this year.  Gotta keep things interesting. 

Stay tuned...never know what will happen next!

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.