thegladwinfive

I now know the reason why my doctor wants me to be in “arms reach.”  Of course I did not want to return to the Mayo Clinic on my first full day of being out of the hospital, but apparently deep down inside I began missing it and my body started to show me physical signs.   My incision started to swell, burn and become very irritated.

A little back story, after all of my hospital stays with having my children I would get this horrific rash on my back, so bad that I need to use a bleaching cream to get rid of the coloring when the rash dried out.  No one could figure out what it was from, but assumed it was a combination of a reaction to the spinal taps and hormones.  On my last day at the Mayo Clinic, a rash was forming again on my back and very little along the hospital gown line around my neck.

Of course as I was relaxing while being out of the hospital my neck began to get worse: burning more, getting deeper red in color, extremely itchy and swollen.  The fear of getting an infection swirled around in my head, so off to the Mayo Clinic we went.

  
The doctor told me it clearly looks like an allergic reaction!  I’ve never been more happy to have a rash in my life! Basically, we concluded it was an allergic reaction to the hospital linens (sheets/gown).  They told me they have seen it before, but it is NOT common. (Go figure!)  The wonderful news is the next time I need to stay in the hospital, I need to ask if they have hypoallergenic sheets/gowns OR bring my own!

The incision may look really nasty now, but it’s not infected!!!!

 

 

 

You would think being in a hospital would be absolutely horrible, but my stay at the Mayo Clinic has been great. I am so fortunate that the nurses here have been wonderful and have made sure I have had the best care.  

Today is day 5 in the hospital and I am waiting to be released. The doctors and nurses  have really worked on figuring out the best pain medication for me, moved me  from critical care rooms to a room with a window and have made me feel as comfortable as possible.  The doctor tells me I am progressing very well, which is very hard to believe considering the amount of pain I have, the concentration it takes to breathe and swallow and the amount of effort it takes to talk.  Sleeping has also been a challenge because I can’t seem to stay asleep. Since I had surgery on my airway there isn’t anything I can take to help keep me asleep, it’s just going to take some time.  The doctor told me to plan on staying in the area at least through the end of next week. 

Being released from the hospital is a huge step! Rob has been completely  amazing being by my side, helping and encouraging me every step of the way. I know these next few days are going to continue being challenging, but I’m going to keep putting one foot in front of the other. 

It’s been one crazy road since I went into surgery. After speaking to the doctor on 1/6, it was mentioned that the operating room was reserved for 4 hours. The morning of surgery the OR was reserved for 4.5 hours. Of course he told us that it would take as long as it needed to but 7 hours and 15 minutes was not the expectation.  I was also warned that I may need a feeding tube, but chances of that happening were very slim. Of course I woke up with one. 

I’m sure you can imagine the fear Rob and my mom had. They explained to me that the waiting room was full. At the 4 hour mark their anxiety was very high. Then 4.5 hours hit and still no update. Rob and my mom just watched as  all these other doctors were coming to speak to family members in the waiting room. No one was coming to them. No updates were given. The time was nearly at a stand still. After over 7 hours they were called to go to a private room. They explained their hearts dropped. All the other doctors talked to the families in the waiting room, but they were called into a separate room.  As you can imagine their hearts sunk even more.  Rob said he blacked out and he doesn’t even remember the walk to the room. It was in the room the doctor explained how he felt complete success in the surgery. He feels he was able to remove ALL of the cancer. My mom told me she embarrassed me because she hugged the doctor so tight! I do NOT care, I would of too!! 

When I meet with the doctor prior to surgery I was full of hope that he was going to remove all margins and then potentially in the future I would be able to have other surgeries in which they could fill in part of my larynx to assist with my voice quality. I was really excited about that. To find out after surgery that I had a complete partial voice box removal in addition to all the cartilage removed has really made me upset. First, it’s scary that the cartilage was removed because the cancer wasn’t supposed to be there. The doctor explained that the cancer was adhering to the cartilage so he didn’t want to chance leaving it there and having it return.  Now, since the cartilage is removed there isn’t any room for fillers to be placed on the larynx to assist with my voice quality. Of course I’m estatic the cancer is gone, it’s just still a lot to digest after this major surgery.  In addition to the particle voice box removal, I also had a neck dissection in which 30 lymph nodes were removed from the left side of my neck. 

  
Needless to say, the past two days spent in the hospital have been very draining physically and emotionally for myself and all of my loved ones. I have been in a trance between the pain meds and just everything going. I know I’m at the beginning of this journey, but I know in the grand scheme of things I’ll be ok. It’s going to be a new way of life but I’m going to live and be with my babies! 

The morning has come. The anticipation is at an ultimate high. The dark drive to the Mayo Clinic went by rather quickly as I was able to FaceTime with my three children and was able to capture this beautiful face.   

I…

…believe I am in the best hands with my medical team. 

…pray the cancer is completely gone when I wake up from surgery. 

…hope to heal quickly with being able to breathe, swallow and talk. 

…miss my babies. 

My first day in Scottsdale, AZ is full of hope.  After spending over 5 hours at the Mayo Clinic going from appointment to appointment, Rob, my mom and I left with tears of happiness!

Every person I encountered at the Mayo clinic could not express enough how great my doctor is.  He was described from multiple people as a pioneer to the procedure I will be having.

The doctor was able to put some of our negative emotions to ease.  We came to Scottsdale with so much fear.  The doctor was very nice, spent a lot of time with us, explained everything and answered many of our questions.  There were questions he was unable to answer as it depends on how the surgery goes, but we remain hopeful.

The procedure I will be having is called Transoral Laser Microsurgery (allows surgeons to remove tumors from the voice box with no external incisions) and selective lymph node removal.

The doctor explained this is my fourth surgery so there is no time to mess around. The cancer needs to be gone!  The surgery will take as long as it needs to (about 4 hours) and it is successful 9 out of 10 times.   He feels surgery is the best option for me and I will not need both surgery and radiation.   (Tears of happiness!!!)   I will NOT have the same voice after surgery…ever… but I will be alive.  He explained that I will speak softly and “breathy.”  (This is very scary as to what I am going to sound like.)  It will be difficult to hold long conversations because it will be very hard to get air, which can cause hyper ventilating.  I will not be able to yell at my kids…or my husband!  (Lucky them!) In the beginning, I will have to really concentrate with eating and drinking, but I WILL be able to swallow and breathe normally.  I will be going to speech therapy (duration/frequency is unknown).  I will most likely have webbing on my vocal cords, which will affect my speech.  In addition, due to the inflammation that will occur on the vocal cord, a granuloma will most likely form.  The granuloma will need to be surgically removed, which will require me to travel back to Scottsdale.  (Granuloma – a mass of granulation tissue, typically produced in response to infection, inflammation, or the presence of a foreign substance.)

As for the selective lymph node removal, there will be a large scar on my neck. (Oh well!)  The doctor will test each lymph node while in surgery to make sure the cancer is completely removed.  I will be able to lift my babies much sooner than we anticipated!

This is a lot of information and there are still so many questions that remain, however I feel I am in the BEST hands.

Prayers are being answered.

Today the journey to Scottsdale, AZ officially started with Rob and my mom by my side. (Well, mom almost got left at the airport after being searched going through security but they let her go!)

Right now, if you name the emotion I feel it, times a million. Here’s just a few:

Happy – surgery is an option.

Hopeful – that this is going to work and I’m going to beat this.

Confident -traveling across the country to be in the best hands.

Fear -the unknowns, the details, the recovery.

Devastation – leaving my children for an extended period of time.

Grateful – the tremendous amount of support that has helped me and my family so far.

Sad – was this morning the last time I will be able to breast feed Natalie?

Scared – what’s going to happen?

Anxious – when will I be able to talk? What will I sound like? When will I be able to eat? When will I be able to hold my children?

Proud – for how sweet my son is. When I was giving Bobby a hug good-bye my dad told Bobby to give me a bear hug. Bobby turned and said “No, I can’t. I be careful. I don’t want to hurt Mommy’s boo-boo.”

As our drive started and I began to cry leaving my children, Rob turns to me and says “I’m excited.” I gave him one of my famous looks and nearly wanted to reach across the car and strangle him until he explained. Rob told me “I’m  excited to get this started, over with and put behind us.” Well, he sure is my rock right now because I couldn’t agree more with him.

So, I guess I can add excitement to my list of emotions too!

No sooner did he say this and a new song started on the radio. As we began to listen we heard:

“Don’t worry about a thing ‘Cause every little thing gonna be alright.” – Bob Marley

It was in this moment Rob and I knew a message was being sent to us.

(My last snuggle with the kids.)

It’s New Year’s day, which is the start of new beginnings, a fresh outlook, a positive start to the new year.  The topic of many conversations at the beginning of a new year often circle around resolutions.  You know, the gym gets extremely crowded with people who are sure to be avid gym goers for the entire year.  People claim they will quit some horrible habit, promise to eat completely healthy, save more money, spend more time doing something and then within a matter of a few weeks it’s amazing how the resolution is forgotten or the lack of focus and effort towards a once so desired goal is gone.

My resolution this year will not fail as I am about to start on the most difficult journey of my life.  I need to stay focused and never give up.

Part of staying focused causes anxiety, but I can’t help that right now the fear I have is rapidly growing.

Questions continue to spiral in my head.  It’s the unknown right now that is so hard. Will the surgery work?  What is recovery going to be like?  When will I be able to hold my children?  What will my voice sound like?  When will I have a voice?

It’s the racing thoughts in my head that are causing anxiety.  Meeting with the doctor on Wednesday is very scary.  It is at this appointment I will hear answers to so many questions whether I like the answer or not. The thought of leaving my babies on Tuesday makes me sick to my stomach.   The thought that Natalie will be in a different size of clothes when I return hurts my heart.  The high possibility that I will no longer be breast feeding when I come home (due to stress depleting my supply) makes me so angry. The fact that I will not be able to pick up my daughter to even change her diaper makes me feel like an unfit mother. I KNOW that is not the case, but I can’t help that’s how I feel.    I understand that in the grand scheme of things these are not that big of a deal, but to me they are a very big deal right now.  This is my last baby so letting go of all of this is extremely difficult.

For me, 2016 isn’t starting out as a healthy year, however the results from my thyroid biopsy came back as benign. Phew.  Can this be a sign of how things are going to start moving up?  For now, I am taking things one day at a time so I will continue to hope, pray and remain positive that I NEED to beat this cancer.

 

 

I’m that person that is the outlier to laryngeal cancer data.

I’m that person that doesn’t fit the mold…EVER.

Today, I continued to be that person. After going through a CT scan and ultrasound last week I was told I needed to get a biopsy of my thyroid because who knows I may have cancer there too! So many people told me not to worry about the biopsy because it’s “no big deal.”

Well guess what! I’m that person that HATES needles.  Actually, needles are one of my biggest fears.  I get myself all worked up prior to getting a shot or having blood taken, so the thought of having a needle in my neck just made me queasy from the time I set up the appointment.  Through the years, I have learned some coping skills to get through my hate relationship with needles such as walking into the room and closing my eyes instantly so I don’t see anything, doing breathing exercises to put me in a different place (the beach), requesting to lay down on the table rather than sitting in a chair or talking a lot to the nurse about anything as a way to distract my mind.  I know, I had 3 babies so you would think I was a professional by now, but I am far from it.

Prior to the biopsy, the radiologist came in a private room to talk to Rob and I about the procedure and what’s going to happen.  The radiologist described what everyone else told me and then told me “most cases it is only 2 needles, sometimes 3 needles and in very rare cases we need to do 4 needles to get enough.”  Originally, I thought I was going for 1 needle and I was very nervous about that and now the radiologist is telling me definitely 2 needles, it could be 3 needles and a rare chance there could be 4!  WHAT?!?!   I thought to myself, “of course I will be that person.”

Well, guess what?  I’m was that person in those rare cases that needed a needle poked in my neck 4 times!

Okay, I admit it didn’t hurt that bad since they used a numbing spray, but it was very uncomfortable, extremely awkward and the worst part was listening to the radiologist explain EVERYTHING in detail to the residents who were in the room.  The thought of it still makes my stomach turn and in the scheme of everything else going on, this was very minimal.   Right now, I am just hoping the pathology report comes back benign because honestly at this point how much can one person handle?

…

I just need to keep reminding myself…

I will be THAT person who beats cancer!

Waking up on Christmas eve to my three happy children, the most supportive husband, a beautifully decorated home (luckily we did the decorating prior to my 12/10 surgery), a day full of plans of attending church and being with family instead of sitting in doctors offices or being poked through countless medical tests, I am truly blessed.

I need to start taking this journey one day at a time (recently it’s been one hour at a time) and enjoy the moments as they come.

As for an update on the most recent news I have received regarding my necessary travel. My journey to the Mayo Clinic will begin on 1/5/16 as Rob and I fly to Scottsdale.  The morning of 1/6/16 I will have my consultation with the doctor who will be performing surgery and per the doctors request I will be leaving the afternoon open in case I need to go through any more testing prior to my surgery on 1/8/16.  On 1/7/16, Rob and I will plan something fun to do to distract our minds waiting for surgery day.  I am going to make sure I eat whatever I want this day since I am not going to be able to eat much more than liquids for a while.  (Milkshakes, yogurt, smoothies, pudding, soup get pretty old rather quickly!)

My surgery is scheduled for 1/8/16 with a hospital stay of approximately 3-5 days.  After being discharged from the hospital I will need to stay within “arms reach” of my doctor for approximately 10-14 days.   So, best case scenario the shortest my stay will be is 17 days. That’s 17 days away from my babies.  Although I will not let this cancer kill me; being away from my babies that long just may.

Now Rob and I need to take the next steps to figure out travel arrangements, flights, rental car, hotel accommodations and all the logistics with childcare!  Thank goodness for my wonderful support team in helping with all of this!!!

But for now, Christmas Eve and Christmas Day I am going to try my absolute hardest to think and believe it’s the hap-happiest season of all.  The reality of it is, I am blessed!

 
Merry Christmas!!

It’s working! The power of prayer is working!

When I went through being diagnosed with cancer the first time, I only shared what I was going through with my close family and friends. At first, I was in denial and by the time I wrapped my head around having cancer, I went through my surgeries and it was gone. Well, we (the doctor and I) thought it was gone…

The night of December 9, 2015 (the night prior to my surgery that found the cancer) something hit me. I needed to share what I was going through. So, I posted a Facebook status:

Dear Cancer,

Tomorrow will be surgery #3, but you won’t win. I’m stronger than you think. My babies need me.

Sincerely,
Determined Mom

I’m not the type of person to share a lot of personal things on a social media site, (other than pictures of my beautiful babies) but I got a feeling that I needed to. I am so glad I shared this initial post, because I received SO many encouraging words that made me feel very confident going into my surgery.

It’s been one hell of a journey so far and it’s just the beginning. My head constantly feels like it’s going to explode. Call X person, keep a record of X, look into information on X, schedule X, arrange childcare, breast feed Natalie/pump enough to feed her, remember to bring X, don’t eat before this test, the list goes on and on.

What I am really realizing is that I am SO glad I have opened up and started to share my story. By sharing this information I have received an overwhelming amount of support through prayers, positive thoughts, the sweetest words of encouragement from countless people, surprise gifts in the mail and monetary gifts from over 200 people that all BELIEVE with me!

On December 22, 2015 I received a wonderful call. One of our prayers was answered!  A doctor at the Mayo Clinic in Scottsdale, AZ is going to take me as his patient!!! This phone call alone tells me there is hope!

THANK YOU to my entire support system all over the country. Thank you for:

• Praying with ME!
• Encouraging ME!
• Supporting ME!
• Believing in ME!

God is listening to us!