What a Difference a Week Makes…..

Sorry for the delay in posting.  After my last appointment I had every intention of writing about it, but then the tragedy in Charleston happened and my mind immediately went to trying to comprehend how something so tragic could have happened.  Continued prayers for the family of the 9 victims, they were killed in that church, and then went to be with God.  He is protecting them now.

I had the “follow-up to the follow-up” appointment today.  After last week’s appointment when my doctor didn’t think I would need the radioactive iodine (RAI) treatment, however he did let me know he would have to consult with the medical team. I should have known not to get too happy, just saying!!

I was literally so excited because I thought I was almost at the end of the “major” treatment and would only need to make sure the thyroid hormone was the right amount for me, and then start working out again, because I am been eating entirely too much!!  I had a list of questions and one was can I have a glass of wine!!    FYI, the answer was yes!!

To be honest I actually feel like the “everything that can go wrong, that wasn’t supposed to” type of patient, seriously I do!!

  • When initially found to have an enlarged thyroid my doctor had no idea to suspect I had thyroid cancer
  • My initial surgeon had no idea to suspect he would find cancer, hell the biopsy was benign
  • My 2nd surgeon had no idea I would need the RAI treatment, my surgery looked to have gotten all of the cancer

Anyway today I was told I would need RAI, and I have to be honest I don’t want to do it.

  • I don’t want to go to another doctor – I now have to see an endocrinologist, at least he’s in the same building as my surgeon and my surgeon says he’s great, so that some peace of mind!
  • I don’t want to have to worry about when I can do this so I don’t miss any more work after missing days off work for 2 surgeries in 2 months – I have only been at this job 5 months!
  • I don’t want to have to worry about when I will do the treatment so that I won’t be around people for a few days – y’all know I like to be around people!
  • I don’t want to have to worry about what to do with my dogs for the few days I am radioactive – I have to protect my babies, they are old and can’t be exposed to all this!
  • I don’t want to have to worry about long term effects of this – didn’t I tell myself to stay off the internet because you will see that this treatment could cause you to develop other cancers later
  • I just don’t want to deal with this anymore – can you tell I am just ready for this to be OVER!

But I guess if I look at the glass half full, I am thankful to have all of these to even worry!!  I can be treated, there are many out there with various forms of cancer that can’t, so I need to be thankful, and trust me I am.  There is a light at the end of this tunnel and I can see it, I really can.  But I know you can tell I am very frustrated.

I have to wrap this by saying, yes I am frustrated, and hate that I have to go through all of this, but God doesn’t make any mistakes and He knows I can handle this.  He prepared me, and now I have to realize it’s time for me to stop crying and keep it moving!!

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Preparing for the Follow-Up Appointment

Today is my follow-up visit with my surgeon and did I mention a tropical storm hit the Dallas area?!?! Yes, seriously and it’s raining like crazy, but no worries!!  Oh and I realized I lost about $100, I assume it was when I got my prescriptions filled last week and it fell out of my purse as I was paying!! Yes you would assume correctly if you thought, “Has she not left the house in a week to notice it before now?”  I never have cash on me and the one time I did this happens!!  I guess God knew whoever found it needed it at that moment, and knew He would replace it to me in other ways.  Yes, I try to be a glass half full person, because life is too short not to be. But please know its hard sometimes, IJS!! 🙂

When I posted the first piece I really didn’t know how it would be received, I kept reading over it and deciding whether I wanted to even share the details of it all.  If you are familiar with StrengthsFinder, one of my top 5 is Maximizer, meaning something might be fine, but I will fret over it and change or update it and strive for perfection, even though it might have been fine to begin with. Yes I am guilty of over analyzing, but at least I know it, right! Anyway after posting and sharing the response has been great. I had people tell me they cried or almost cried reading it.  Hey, no crying, OK!!  Unless they are tears of joy, because I cried already and then when God told me “I got this” I stopped crying and began to look forward to getting this behind me!   I look at it like this, God put it on my heart to help someone and if this is how I am able to do that, then mission accomplished.  I heard from one person that committed to me that she would schedule an appointment to get her thyroid checked because, like me, she has the nodules.  I talked to another person that has been having ultrasounds and biopsies, but hasn’t decided if she will get the nodules removed.  I totally understand both because had I not had the annual exam I probably wouldn’t have done anything either.

As I prepare for the appointment I started writing questions, and it seems these questions just pop into my mind!  I have actually come to the realization I can’t remember it all, so I type them on my phone so I will have them handy at my appointment!

  • What is the next step in treatment, or am I done?
  • Am I going to be cured or have I been cured?
  • When can I go back to work? – I want to ASAP, so I need my energy level back ASAP!
  • Is the dose of the thyroid hormone
  • When will I feel “normal” again – if you know me, you know I stay on the move and I just haven’t been able to go like I normally would
  • Can I walk the dogs? – we normally do about 3 miles a day and so I need to know when we can start up again
  • Can I ride my bike? – I just got a bicycle and I really want to enjoy it!!
  • When can I start working out again? – very important because this food is literally jumping on my body and I need it off NOW!!
  • Can I have a glass of wine? – yes this is an important one 🙂

OK, let me get ready to get out in this rain and head to my appointment! Thanks again for reading and sharing this blog, I really appreciate it.

Hugs to you all!!

Kim

“What Are We Going to do About Your Thyroid?”

“What are we going to do about your thyroid?”  – a statement my primary care doctor said to me on March 30, 2015 and the statement that totally changed my life!  The past 10 weeks I have been through a lot, but I am glad to say I am going to be ok and I will get past this! My faith is strong and I know God will take care of me; I just have to lean on Him and continue to trust in Him!

My primary care doctor asked me about my thyroid and I was like, “what are you talking about”. She said she felt a lump in my neck and that an ultrasound was recommended.  I let her know that I would be going home to research this and she offered to give me some material to read on the thyroid. She let me know then that there is no need to automatically assume the worse.  So a couple of days later I got an ultrasound on the same day I got a mammogram.  And in case you are wondering the mammogram was perfectly fine!   A few days later I got an email that she wanted to discuss the ultrasound, I still didn’t think anything about it because after all I read that thyroid nodules were common and cancer never once crossed my mind!  When I did talk to her she recommended a biopsy because of the ultrasound results.  I then went to an ENT doctor and had a biopsy.  Again, I still didn’t think it was anything major.  I ended up having the biopsy and waiting about a week for the results.  Again, I didn’t think it was anything major.  I went back to the doc and he explained the biopsy was benign and that I had nodules that were fairly large and he recommended removal.  OK, cool, let’s get them removed and I will be fine, or so I thought!  I had the surgery, I removed the right lobe of my thyroid and I thought great I will be back to 100% in a short while and life will be good.

Friday May 22, 2015 everything changed, EVERYTHING!

I went to the doctor to have my stitches removed and I was in good spirits, I was on a work conference call and got off briefly just to have the stitches removed.  Once he took them out I casually asked if he had gotten the pathology report back, knowing that even if he did he had already told me everything looked good and he would be shocked if it came back as cancer.  Well guess what, it was cancer!!  Everything he said to me was truly a blur, other than the words papillary thyroid cancer and I needed surgery.  That drive home was LONG!!  But I knew I had to not think about it because I had a call in an hour with my boss for work that I needed to focus!  I kept saying; let me get through this call without breaking down!  I don’t know how I did it, but I did! That Friday night Deep Eddy and I got to know each other pretty well!!

Thyroid cancer is one of the most treatable forms of cancer, but please know it is still CANCER! – When some people find out I have thyroid cancer the look on their face is comical really, the “is that all you have” look; you know that look!  Some of the comments I’ve heard are:

  • “Oh, it’s thyroid cancer?” – As if it’s not really a cancer.
  • “Well it’s not that bad, it can be treated” – yes it is one of the most treatable but it still isn’t “good”
  • “Oh” – as if because its thyroid cancer it makes it “better”

I have been very positive about all of this because I know this can be treated, but at the end of the day, I have cancer.  But please let me tell you about this “treatable thyroid cancer”, how its impacted me and what I have faced and continue to face;  this is not everything,  trust me:

Let’s start with the 1st surgery – removal of the right side of my thyroid/nodules

  • The initial shock of the cost of the surgery alone bought me to tears, and I have insurance!
  • The amount I have spent on medical bills I am still paying is humbling.
  • I had to wait in the waiting room at the hospital alone for about 2 hours because the doctor’s office gave me the wrong time to arrive for the surgery and my friend that was with me left because I thought I was being called back to surgery soon.
  • The IV was done in my arm and I had to keep that arm outstretched until I was wheeled back to surgery, trust me this is not a normal position of your arm for an extended period of time.
  • As the doctor is going through the risks of the surgery, your life flashes before your eyes
  • When you wake up and can’t talk, you worry if the risk factor of losing your voice is happening
  • You have a drainage tube extending from your body that requires you to drain and measure what is coming out of the wound.
  • You are in pain and the pain killers won’t work fast enough.
  • You get released from the hospital when you aren’t fully coherent and still in pain.
  • When you get home you wonder if you will be able to sleep through the night and wake up if you did sleep.
  • You worry that if you don’t keep the compression stockings on you will get a blood clot and die.
  • When you get the drainage tube removed, you feel it being removed and it’s not a pleasant feeling.

After being told you have thyroid cancer –

  • You begin crying as the doctor is explaining it to you, only to realize you need to focus because there is no one there to help remember everything being told you.
  • Getting in the car and on the drive home realizing your life is changed forever.
  • Calling your aunt, who’s like a mother and telling her, to be greeted with silence because she just doesn’t know what to say?
  • Scared to tell your boss at a job you have had 4 months, and thinking how you can have the surgery and be back at work in a couple of days , worrying you will be let go for having to take off again for this to realize my job has been and continues to be amazingly supportive!
  • Not knowing what the next steps are, other than surgery, because the doctor didn’t take the time to fully explain and answer questions – not that I had any but not even offering to answer ones he thought I might have.
  • Having to tell you daughter that you have thyroid cancer and having to say everything will be ok, not fully knowing if everything will be ok.
  • Using the internet as your doctor because you just don’t have the answers from the doctor that gave you the diagnosis.
  • Trying to get your medical records sent to another doctor for a 2nd opinion only to become frustrated and break down in tears.
  • Asking for a pathology report so you can take it to the doctor with you only to be sent 1 page of a 2 page report not realizing it.
  • Being told you should see an oncologist but not knowing of one, and then when you decide where you want to go being asked do you want a medical or surgical oncologist – how would I know???
  • Because you are less than 3 weeks out of the last surgery, your energy level is so low by the end of the day all you want to do when you get home is sleep.
  • Not having the energy to work out and afraid you will regain all the weight you have lost over the past 2 years.
  • Having to put on a brave and strong front when having to tell people, but deep down you are a little scared.

The 2nd surgery – removal of remainder of my thyroid with the new surgeon

  • The drainage tube – again
  • Arriving at 1pm for a surgery that didn’t start before 7pm due to another surgery running over, but only having 8oz of water the past 18+ hours.
  • Because I was so dehydrated by the time they started the IV it hurt so bad it felt like pins were sticking in the top of my hand.
  • Spending 2 nights in the hospital.
  • Not being able to breathe and gasping for oxygen when I woke up from surgery and having to use oxygen overnight to breathe.
  • The IV was positioned in a way that if I moved my hand the monitor went off – this happened VERY often.
  • Having to have bloodwork done every 6 hours to check my calcium levels to ensure my parathyroid was functioning.
  • A resting heartrate of below 60 that kept setting off monitors, requiring additional nurses to visit me to ensure I was OK.

After the 2nd surgery –

  • Unknown – I am still trying to get more information, so it’s truly an unknown at this point
  • Radioactive iodine therapy
  • Recurrence
  • Regular blood work
  • Thyroid hormone daily
  • Regular follow-up appointments

I am still learning about thyroid cancer and have found that not everything on the internet is probably the best information!  I am also happy to say I have the best support system!  The love and support from my family, friends, coworkers, sorority sisters, church members, everyone, etc. has been unbelievable.   From being there when I waited to go into surgery, there when I was wheeled to surgery, there when I came out of surgery and there to visit me at the hospital and at home, I was bought to tears!  Some have asked why I shared and continue to share this on social media and the reason is that being able to share is my way of coping, and possibly helping someone else!

I will chronicle my journey which allows me to share my experience and possibly help someone else going through this.  Please feel free to reach out to me!