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.                                                                                                                                           

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.