thegladwinfive

I’ve been making great strides.  The weather is getting much nicer, which makes an automatic state of euphoria even though nothing is easy right now.  My weeks have been jammed packed with various appointments and therapies along with many hours in the car getting to where I need to be.

About two weeks ago I went for a PET scan so I could review the results with my doctor at my scheduled appointment last week.  Other than scopes that are performed at my doctor appointments, this was the first test I’ve had since my surgery.  Once my results were available they were posted online.  The great thing about getting to see my results online is that I can see them without needing to talk to the doctor, that is as long as it comes back how I hoped.  Unfortunately, that was not the case and I read the report two days prior to my doctor appointment, which means restless days and nights.  Now I know there are many things in the report that I don’t understand and google can be a scary thing, but what I have learned is that I need to be my own advocate because no one else will be.  Prior to my appointment I did some research so I knew what questions I wanted to ask.  I was not going to be okay with hearing  “it doesn’t look like cancer.”

Anyway, my PET scan report showed two lymph nodes, now on the right side, that did not appear normal.  (Everything has only been on the left side up to this point.) So sure, take with a grain of salt that PET scans show false positives fairly often, but when comparing to my previous reports this was not there.  At first my doctor told me that he wasn’t alarmed by it and was going to wait and order another PET scan in 3 months.  This was NOT okay with me.  He can’t tell me to wait 3 more months because “it doesn’t look like cancer.”  To me, there is now something there that wasn’t there before.  I told him there has to be another test so he ended up ordering an ultrasound, but informed me that most likely nothing will show up.  He told me we will at least have this done in order to use it as a baseline for the future.  So, I got the ultrasound done two days later.  The ultrasound technician informed me prior to starting the ultrasound that sometimes the radiologists wants to come in and see for themselves, so I shouldn’t be alarmed if it happens.  Next thing I know, the radiologists is comes in the room, looks for herself and tells me that she is suggesting a biopsy because it doesn’t appear normal.  She said “it’s not screaming cancer….but it’s also not saying it’s not.”

So here I am, after a jammed packed weekend of fun, going to a birthday party and having a fourth birthday party for Bobby contemplating if I even want to go to bed.  I’m physically and emotionally exhausted, but am I really ready for this week?  I don’t even have the biopsy scheduled yet since the ultrasound was Friday afternoon, but the waiting is so difficult.  I am hoping to get the biopsy done this week but then it’s the waiting all over again for the results.

I am trying to stay positive but there is still so much fear.

The good news at my latest doctor appointment was that I am still cancer free and my larynx appears to be healing nicely! I brought to the doctors attention an issue I am having when I eat anything, regardless of the consistency – I get excruciating pain shooting in my jaw and up through my ear for the first 7-10 chews. My doctor suggested I see another specialist that deals with cancer rehabilitation since it sounded like a rare side effect from having a neck dissection. After seeing the new doctor, she confirmed that I have First Bite Syndrome, which is related to nerve impairment after the neck dissection. So, the bad news is that I have this other rare issue to deal with, however the good thing is that I can get Botox injections every 3-6 months which will take the pain away. The doctor mentioned that each person is different so for some people the injections can last a little longer, but she anticipates this will be a lifelong issue. I am just holding onto hope that this is just another bump in the road and hopefully my nerves will get better so I won’t need Botox injections forever. The new specialist will also give me Botox injections in my head to relieve a constant headache I’ve had, which is another surgery side effect. 
In addition, I will be spending more time in the car traveling to therapy, which stinks. I need to start going to the University of Penn’s therapist in order to start lymphedema therapy prior to having the injections. At least I can go to a satellite campus instead of driving into the city each therapy day.  
I am continuing to put all of my effort into getting better each day and will do whatever is recommended by my doctors. Without the tremendous support of my husband, mom, family and friends I wouldn’t be where I am right now. My children light up my life each day and they are the reason I keep pushing extra hard each and every day. They have really taught me that life goes on regardless of what is going on. I mean seriously, look at how much they have grown!

Today marks day 50 of being cancer free. Busy. Determined. Hard work. Strength. Focused. Structure. Thankful. This has been my life to the extreme since having my last surgery. I’ve had so much support and encouragement since this all began and I wouldn’t be where I am today without it all. 
I always knew life with three kids would be busy always tending to their needs. My plan was never to put so much energy into myself, but lately I’ve had to. 
I am now in a routine of swallowing, speech and physical therapy, which has been extremely challenging, tiring and time consuming. I am working my hardest to maximize what is left of my vocal cord. I am also finally cleared to exercise so I’m working on building up my breathing to improve the airway. It’s going to be a long road but each day I only get more determined and focused. 
I try not to look too far in the future because the unknown is really scary. I’m starting to take life one day at a time and enjoy each small victory as it comes. These past 50 days I have really realized how blessed I am to be cancer free and that I am able to watch my children grow. 

Anyone that knows me, knows that I’m a creature of habit and routine. My life is very structured, which at times can be positive and other times negative.  Being diagnosed with cancer has been the scariest time of my life.  I have never been more scatter brained. I’ve lost focus on a lot of things, but this past week I have really started to zoom in. 

Having majority of my vocal cords removed has been a HUGE adjustment.  It feels like I lost a piece of me…my voice. No one will recognize my new voice, I sound like I’m really sick.  Strangers cringe and tell me “oh boy, you don’t sound good.” Gee thanks! 

I’m trying to take life day by day, which is challenging for me, since I am such a planner. This past week I feel that I have made progress to help me live life day by day right now. I’m trying to slow down and be patient in letting my body heal from having three major surgeries in three months. I have  arranged a schedule for swallowing/speech/physical therapy and set up all my doctor appointments and follow up tests. (Except for my return to the Mayo Clinic for most likely another surgery.) I feel a little sense of relief that I have the start of a plan even though there are still so many unknowns. 

I’ve cried more this past month than I ever have. I have had some really, really difficult times but I have learned that I’m not alone in this fight.  Each day, I know I’m very blessed because I have the best support system ever! Right now, I am completely focused on doing what I need to do in order to  learn to accept my new normal. 

The struggle is real. The frustration is higher than ever. The tears of joy being with my children quickly turn to tears of anger, frustration and helplessness. 

Coming home from Arizona was so exciting. I didn’t see my babies for 16 days and the feeling of excitement to see them far surpassed any feeling I have ever had. Being snowed in over the weekend with my family was amazing and horrible all at the same time. 

All I want to do is spend time with my kids, but each day new challenges arise.  I had this ideal vision in my head that my maternity leave from work was going to be spending time with my children, taking them fun places, playing games, breaking out my creative side of teaching letters, numbers, colors and holding/snuggling with my newborn.  I guess that was a false hope!

My emotions are so scrambled lately. The kids can barely hear me unless I am directly next to or in front of them. So you know those times you’re in another room and a kid yells “Mommy! Mommy!!” Well guess what?! I can’t yell back. This happened many times with Bobby and then he gets mad and yells “Mommy, why you no talk to me?” That breaks my heart!

There are times we are playing and I can’t even talk to any of the kids across the room because it’s too far away, or how about if there is any other sound involved such as the TV, music, random toy having a mind of its own or a kid crying…my voice is WAY too low to even be heard. So, I have to wait….and wait…for the sound to stop. Ugh! The frustration builds. 

Then since I’ve been home I have started to realize that when Bobby and Brody start to fight or argue, which they are so good at doing,  I can’t do anything about it. I can’t say “stop” because they can’t hear me. I can’t settle the tears because the crying and screaming is too loud for me to even be heard. 

Bedtime is another example that poses extreme frustration too. Reading bedtime stories is challenging as I get lightheaded talking too much and I can’t make intonation with my voice. We have all heard someone read that is monotone and it’s the most boring thing in the world! Children’s books are filled with onomatopoeias (animal noices, vehicle sounds, etc.) and I can’t make those sounds! Reading to my children used to be soooo much fun and now it’s just frustrating! Last night, Bobby and I were laying in his bed having a conversation. He then reached and got a little blanket with a monkey on it and starts saying “oo-oo-ah-ah.”  Bobby turns and tells me it’s my turn….and I tried but I COULD NOT do it! He got so mad and yelled louder “NO MOMMY! Not like that, do this. Oo-oo-ah-ah!” Ugh, I couldn’t! I tried to explain to him why I couldn’t, but he’s 3.5 years old and doesn’t understand! I tried holding back the tears as best as I could but as soon as I left his room, the tears just started flowing. 

Right now, it’s the little things that are causing so much frustration. I know I’m so blessed that the surgery was successful and that I am here. I’m not losing sight of that, BUT the frustration is incredible. 

I WILL get through this. I WILL remain positive. I think it’s okay to cry and it’s okay to be frustrated and angry. I’m not losing sight of all the positives, but right now it is just very, very challenging. 

After a  total of 13 hours, door to door travel from Phoenix to home, my mom and I made it home just in time for the snow.  We took a red eye home with a connection in Boston all so I could be home as soon as possible to see my babies and to be safe in avoiding the blizzard. We are so lucky we did that because airports have been closed and most flights majorly delayed because of the blizzard of 2016. I would of been so mad if I was stuck in an airport and couldn’t make it home!  (Yes, I am wearing an Arizona sweatshirt…that place saved my life!)

Being snowed in with my family for the weekend was the best.  Rob did all the shoveling and snow blowing and he did such a good job!  (I can’t even pick up Natalie so never mind being able to shovel.)  I got to play with my boys outside in the snow and watch the excitement in their eyes!  Bobby loved it from the first time he went out even with the harsh winds blowing in his face.  Brody on the other hand, HATED the cold wind blowing in his face, but once that stopped he loved it too!  After nearly 2 hours, the typical boys needed to be bribed to come inside!

Natalie is the lucky one that gets to stay inside and play!

Looking at these pictures and all the memories made this weekend makes me realize, I’m the lucky one!

(Opps I thought I posted this…)

Taking everything day by day has been very difficult for me. I am a planner and planning my return flight was not something I could do in advance since I did not know when the doctor was going to allow me to leave Arizona. When I found out that I was allowed to go home Thursday 1/21/16 I was ecstatic!  This means I am going home 1 day earlier then what I originally thought my minimum stay would be. I was away for 16 days, 16 LONG days. One day does not seem like a lot, but being able to see my babies 1 day sooner makes me soooo happy!

So, since the doctor said I can go home Thursday, I booked my flight home for midnight!  I never really thought I would be excited to leave 70 degrees and sunny weather to go home to a huge snow storm but I can’t wait!!! I am getting home as soon as possible.  I am not about to get stuck in an airport because of the snow.  Right now, I am actually looking forward to the snow and I hope we get a lot of it! I hope I get snowed in with my family where we cozy up by the fireplace, play outside in the snow, drink some warm hot chocolate and snuggle!

Ekkkk I can’t wait to be home!

Keep the prayers coming!

This has really been a very horrible situation, but it sure is moving along as smoothly as it possibly can.  I strongly believe it is because I have opened up to share my story; which has created so much love, prayer and positive energy to make this life changing event move along with as few bumps as possible.

Today, I went to visit my surgeon for the first time after leaving the hospital.  He feels I am doing a really good job with the healing process.  It is completely normal for the left side of my face to be numb, excruciating ear pain, difficulty moving my left arm and feeling exhausted from talking and swallowing all the time.  The scar is healing as it should be (minus the stupid allergic reaction).

Then, the really good news came.  My doctor still believes after getting all pathology reports back that the cancer is GONE!  He also plans to meet with a team of doctors, nurses and social workers tomorrow morning to review my case to determine if any additional treatments are needed at this time (radiation/chemotherapy).  Although the meeting did not happen yet, he feels very strongly that I will NOT need radiation/chemotherapy.  <insert a big happy dance!>

Here is a diagram of what the vocal cord looks like.  The black portion is what was removed from mine, so as you can tell majority was removed on the left side, however the cancer did spread and crossed over the midline so a little was also removed on the right side.

Needless to say, a lot was removed which does not give me much to work with in terms of getting a loud voice back.  I will work my hardest at getting back whatever I can.

In addition, the large scar on my neck is from a modified left neck dissection in which 23 lymph nodes were removed from sections II, III, IV of my neck.  (Lymph nodes in the neck are categorized from I-VI).  One lymph node was cancerous and the rest were not.  Since this ended up being a modified neck dissection (instead of a selective neck dissection, which is what was anticipated) I will be in physical therapy for some time in order to gain back the strength in my left arm, to build muscles in my neck and to help with the nerve damage.

With all of this, I am able to leave the state of Arizona and return home to my babies (and Rob) the end of the week!

When I return back to PA, I will be seeing my ENT at the University of Penn on a weekly basis for a few weeks, attending physical therapy and speech therapy (number of weekly sessions to be determined by therapists) and I will not be able to pick up my children for about 2-3 weeks.  (I can however snuggle with them in my lap and I can’t wait!)

My journey is far from over and I know going back home is going to introduce so many challenging situations.  I plan to continue taking this journey in baby steps.  For now, I am going to enjoy the 70 degree weather and each day of positive news as it comes.

The past few days have been relaxing and exhausting at the same time.  I have been staying busy with practicing breathing, swallowing, eating and drinking.  I have been in communication with close family and friends that have all been asking similar questions, so I am sure there are a lot of other people that are following my journey that are thinking the same questions.  Here’s a little frequently asked questions with responses.

How’s the place I am staying at?                                                                                                           When looking into places to stay for an extended period of time we first looked into hotel rooms and extended stay hotel places since we would be here a minimum of 17 days.  We then looked at renting a house through Air B & B, which ended up being almost $40/night cheaper than a hotel/extended stay and it’s a full beautiful house!  It’s newly remodeled with an outside patio, full kitchen that includes everything (even a large ninja blender to blend/puree my food.)

What’s the weather like?                                                                                                                       The few days we were here prior to surgery were rainy and cold (40 degrees) all day long. Rob and I planned a 3.5 hour dune buggy tour the day before surgery and it ended up getting cancelled because of all the rain that ran off the mountains.  We were very bummed.

How do I feel?                                                                                                                                              Physically–  I’m at the point now that each day is starting to get better.  Sleeping at night is still difficult and I take each day hour by hour since the pain varies throughout the day. I have been napping during the day as I get exhausted very easily.  Talking, drinking and eating take A LOT of effort and concentration.  The pain in my throat is really bad and my neck is extremely sore.  I ended up having an allergic reaction to petroleum jelly  (what I was putting on my scar to help it heal) so now I have a steroid cream to help with the allergic reaction.  The whole left side of my face, ear and neck are very numb and swollen.  I have the worst pain inside my ear too.                                                                    Emotionally- This has been a very challenging experience so far and it is only going to continue for a long time.  I have never been in this much pain, I have never missed like I am missing my children and I have never been more scared for my future than I am right now.                                                                                                                                                   Mentally– I am very grateful.  Grateful that the doctor feels the cancer is gone, grateful I have the most supportive  husband, family and friends that have been by my side every step of the way and grateful that I am alive.  Too many times young peoples lives are cut short for various reasons and I feel very fortunate that I am going to continue living my life.  Of course I get upset at times as this is going to be a major life adjustment, but I am not willing to let this bring me down.

What am I eating?                                                                                                                                       Eating and drinking is a really big challenge for me because it is VERY difficult to swallow.  I can eat soft foods and purees right now and I can drink anything I want.  Eating and drinking thicker liquids (smoothies, pureed juices) is much easier to swallow than drinking water, tea, coffee.  Milkshakes are not good for me because I have a lot of congestion and the milk increases that.  This morning I ate a bowl of really creamy oatmeal and that took 55 minutes.  Needless to say all of my meals take about that long because it is so much work/effort/energy to swallow and then I am exhausted!

When do I start therapy?                                                                                                                          I saw a speech therapist at the Mayo Clinic on Thursday.  My session lasted about 1.5 hours.  For about 45 minutes of the session, she had a scope up my nose and down my throat watching how my vocal cords moved making various sounds, watching me breathe, swallow, drink water, drink a thicker juice, eat apple sauce and even take 1 bite of an oreo cookie.  I struggled getting some of those things down and when it doesn’t go down correctly, I cough.  The speech therapist told me that’s good news that I cough because that means my reflex is very good that I won’t let fluid go down the wrong way. Since some things are going down the wrong way, causing me to cough, I now need to learn a new way to swallow.  For now, I just have to practice, practice, practice to build up my muscles using a different swallowing technique.  It would be so much easier to just not eat/drink until I am healed but that’s not an option!

How’s Bobby, Brody and Natalie?                                                                                                          They are as happy as can be!  Rob and I are so fortunate to have such a wonderful family on both sides because everyone has really pulled through.  It really takes a village to raise children and this is the perfect example.  Our kids are just so happy that they are with different family members on a rotating basis.  Bobby’s schedule of going to preschool and speech have remained in place.  In addition, a few days during the week Bobby and Brody are going back to the in home daycare they were going to when I was working and they love it there.  Natalie is staying with whoever is staying at our house enjoying some one-on-one attention that she deserves!  My heart sinks when I see Natalie because she has already changed so much.  Today she turned 3 months old, which is the official time the baby leaves the newborn stage and turns into an infant.  SEE it happens SO FAST!  We FaceTime the kids every day, normally twice.  They boys continue to be maniacs and Natalie just watches. Bobby  is so sweet and always asks when we are coming home and Brody being the charmer he is, blows kisses.  They just melt my heart.

  
Can I talk?                                                                                                                                                     Yes.  I have a very, very low whisper.  It is very breathy, difficult to pronounce some words and some sounds do not come out.  At this time, no one can say what my voice is going to sound like.  I just keep being told everyone is different.  I am supposed to talk frequently to use the muscles so I have been having good conversations with Rob and FaceTiming often.  I get fatigued quickly in conversations, but then I rest and try again later.

How’s Rob holding up?                                                                                                                              He’s my rock.  Without him by my side I wouldn’t be where I am today.  He has been so strong for me.  Extremely caring and concerned.  Encourages and pushes me when I need it and doesn’t question when I am in pain or need to sleep.  He has made me feel like a princess even though I definitely am far from looking like one.  He has taken care of every meal, brings me my pain medicine when needed, takes me out of the house to get moving around and returns as soon as I feel weak and he has even done my laundry!  (Rob has NEVER done laundry and even in college he used to pay to have his done.  He HATES laundry like I HATE needles.)  At the age of 30 (Rob 32), I never thought we would be in the predicament of “for better, for worse, in sickness and in health.”  We are in this place right now and there is no one else I would ever want by my side.       

 Coming up: My mom flies back to Scottsdale Saturday afternoon and Rob leaves Sunday morning.  My mom will be staying with me until I am able to return home.  Return date at this time is still unknown.