Is this really happening?  I am at the point of my maternity leave that I am starting to get the hang of what is it like to be a mom of 3 and then BAM! Hello stage 2 laryngeal cancer that has spread into my lymphatic vessels!

Last week seems like a whirlwind with having my family spend hours on the phone trying to coordinate appointments, set up additional tests I needed to have done, hours upon hours of sitting in traffic to get to my appointments, sitting in waiting rooms, meeting with doctors, and arranging childcare.  Not only was this physically exhausting, but mentally it was so much that I am surprised my head didn’t explode.

12/16/15 – My first doctor appointment was meeting with a radiologist.  I was completely shocked that he sat with me for almost 2 hours.  Well perhaps that is because the list of side effects from the radiation treatments took that long to explain.  It was made VERY clear that radiation will be my last resort considering my age and the short/long term effects it would have on my body.  However with the typical patient (50-70 year old male) this would most likely be the treatment.  Radiation on any person is very serious and something no one ever wants to go through, but the radiologist made it clear that the side effects on this part of my body (larynx) in conjunction with my age is no joke.

Treatment would be:

• 7 weeks (M-F) to treat the throat, voice box and lymph nodes.  I will never be able to yell at my kids. I know lucky them!
• I will have trouble with swallowing.
• Progressively I would be eating soft foods and near the end of treatment I have a high chance of being placed on a feeding tube for 3-6 months or perhaps life.
• I would need to meet with a dentist because my jaw bone can be damaged.
• Attend speech and swallowing therapy.
• I would need to be very careful every time I eat/drink something because I have a high chance of aspiration pneumonia, which would kill me.
• The radiation would feel like a really bad sunburn on my throat.

At this point, I had heard enough and the radiologist could tell.  He told me IF this is the route that needs to be taken he will go over the additional side effects at another time.  WHAT?!  There’s more???  My two hour drive home with Rob, my mom and Natalie was filled with tears and a lot more questions.

12/17/15 – The next morning we went to meet with my new otolaryngologist who is listed in receiving countless awards of being one of the best doctors.  I was very hopeful I was going to get better news than I did the day before.  All I kept thinking was there has to be another option.  Ultimately, my doctor went over everything with me describing how the cancer is a T2 reaching both my vocal cord and false vocal cord.  It has also spread into the lymphatic vessels, which means not only does my larynx need to be treated but so does all of my lymph nodes in my neck.  After laying all of this information out, my doctor tells me he is going to refer me to a doctor in St. Louis, MO and to another in Scottsdale, AZ.  WAIT….WHAT?!  Here I am at one of the best hospitals in the county and they can’t treat me here?  This is absolutely INSANE!

My doctor is trying to avoid radiation (somewhat of a relief) and trying to avoid performing the surgery he does best of a partial voice box removal in order to keep as much of my voice quality as possible.  He is referring me to these other doctors across the U.S. since they have the highest success rates in preserving as much of the vocal cord as possible as well as to remove the lymph nodes in my neck. That is not going to be a pretty surgery, but it’s waaayyyy better than radiation!

That afternoon I went to have a fine cut CT scan in order to make sure nothing spread into the cartilage of my thyroid.  If the cancer spread into the cartilage it would change the cancer from T2 to T4 and all of this treatment would be thrown out the window.

12/18/15 – CT scan report came back and it is not in the cartilage!!!!  There is however something showing up on my thyroid, so an ultrasound is scheduled.

12/21/15 – After having the ultrasound of my thyroid complete I met with the radiologist that reported “it doesn’t look like anything, but I want you to have a biopsy due to the size of it.” At this point, I am no longer shocked by the news or the fact that I need to have ANOTHER test done.  I am also EXTREMELY SICK of hearing “it doesn’t look like anything.”

I continue to keep telling myself, this has to be a dream, a really bad dream.

I really, really wish it was…

 

 

The birth of a child is one of the happiest times in a persons life. I am so blessed that it has happened three times! A few weeks after my second and third pregnancy, I was diagnosed with laryngeal cancer.  Here is the background to my journey.  (Sorry for the length.)

My laryngeal cancer journey began November 2013, when I was five months pregnant with my second son, Brody. My voice started to change.  At first, I thought I was coming down with a cold, so I just ignored what was going on.  After about two weeks of having no other cold like symptoms I made an appointment with my primary doctor and he was baffled as to what may be going on with my voice.  My voice sounds like I had laryngitis, but it was quickly dismissed since I did not have any other symptoms.  My primary doctor referred me to an otolaryngologist, ENT.

During my first visit to the otolaryngologist, a scope was performed and there appeared to be something on my vocal cord, which would need to be surgically removed.  I was told it did not look cancerous so putting me under anesthesia at that time would be more harmful to the baby since I was pregnant.  I remember leaving the doctors office and thinking to myself, “The doctor said cancer?  He said it didn’t look like cancer.  There is NO way it is cancer.”  I continued my day-to-day life of taking care of my 19 month old, who at the time was not speaking at all and going to teach my high school emotional support students. My voice began to get worse each day and by Christmas I did not have a voice, not even a whisper.  I was put out of work the start of Christmas vacation because I could not perform my teaching responsibilities.

Bobby was now 20 months old when he stopped going to day care since I was home.   Due to Bobby’s speech delay along with my lack of voice, we started to learn sign language together.  My son was delayed in speech and I couldn’t even help him talk.  This was hard, but we managed as we ended up learning over 80 words in sign language together.  This was not only challenging for me in communicating with Bobby, but it was very difficult for my husband who now had a wife he could not even have a conversation with.   About 6 weeks later, I went to another check up with the otolaryngologist that was just waiting to perform surgery on me until after I delivered my baby.  He once again told me, “it doesn’t look like cancer.”  Since I was scheduled for a c-section March 7, 2014, my vocal cord surgery was scheduled for March 28, 2014 in order to give me some time to recover.

March 7, 2014 we became a family of 4 when Brody was born.

March 28, 2014 I had my first surgery on my larynx.  I remember leaving surgery with not much concern on the biospy returning, because the doctor told me “it doesn’t look like cancer.”  March 30, 2014 I received the unthinkable call….it was cancer.  Wait, how can that be?  The doctor told me many times it didn’t look like cancer and now he doesn’t think he removed it all? I was referred to an ENT at the University of Penn.  I was trying to wrap my head about this.  Here I was 28 years old with a nearly 2 year old and a 3 week old and I had cancer.  After many tears were shed, a ton of support from my husband, family and friends, I took a deep breath and I went to my appointment at the University of Penn. I knew I was going to be in good hands being at this hospital due to it’s wonderful reputation.  It was here, I met with my new doctor who did another scope to see what was there and another surgery was scheduled for April 17, 2014.  On April 18, 2014 I got great news!  All of the margins were removed!  The cancer was found very early so the doctors were able to just scrape the surface and it was gone!  Of course this was not a good experience that I had laryngeal cancer….but it was gone!

I went back for a follow up appointment 1 month later and everything looked great!  I was healing well and my voice was returning back to normal!  Every 3 months from then I went to my follow up appointments and everything was great!

Fast forward about 1.5 years later to August 2015 and I was now 7+ months pregnant with my daughter.  I went to another routine check up and everything look perfect!  I left my appointment feeling so good, simply glowing that I was not only 7+ months pregnant, but my vocal cords looked awesome!

October 15, 2015, Natalie was born.  It was here at this moment I knew my family was complete.  At this point, I am the luckiest woman on the planet!

About 4 weeks after having Natalie, I started to lose my voice.  Could my voice be going due to the lack of sleep from having a new born, a 19 month old and a 3.5 year old?  The beginning of a cold?  Allergies?  In the back of my mind, I knew if it continued I would call my doctor since my next follow up appointment wasn’t scheduled until January 18, 2016.  About a week and a half later, I knew for sure something was happening.  I called to get my appointment pushed up and the scheduling office told me that my doctor is completely booked except for one opening on January 4, 2016.  I began to explain my situation and was able to get an appointment for 3 days later.

While at my doctor appointment, I explained what was going on and the routine scope now showed something. The doctor compares pictures to previous visit in August as well as pictures from when I first saw her in April 2014.  It doesn’t look nearly as bad as it did before.  She asked if I strained my voice, perhaps yelling at my children?  “No, I don’t think so,” I said. She seemed pretty confident that it would go away if I was on vocal rest.  I scheduled a follow up appointment for two weeks later and went on vocal rest, which is extremely difficult with 3 children three and under.  With the support and help from my husband and my mom I was able to be on vocal rest. Two weeks later I went back to see if there was a change for the better and nothing.  It was still there so surgery was scheduled for December 10, 2015.  My doctor told me “it doesn’t look as bad as the last time,” but she wanted to just get rid of what was there and biopsy it.

December 10, 2015 I reported to surgery, with not much concern.  I knew there was a chance it would come back as cancer, but I thought even if it came back as cancer it would be a similar ride like the last time.  The doctor scraped it off in surgery and it was gone.

I woke up from the surgery and I was in much more pain this time.

My doctor came to talk to me and tells me  “I had to take more than I thought.  It doesn’t look too good.  I will be seeing you again in about six weeks for another surgery because it has spread to the other side of your vocal cord.”   I wrote on a piece of paper, since I could not talk. “Is this normal?”  The doctor replies, “No. No. Not at all. I will call you as soon as I get the biopsy results.”

Friday December 11, 2015 at 6:30 P.M. a random number appears on my cell phone.  I answer the phone as best as I could since I didn’t have much of a voice.  The doctors tells me, “I have some bad news.  The cancer has returned.  I am going to be sending you to my partner to discuss treatment options of a partial voice box removal or radiation.”

It was then, I fell to the floor and started crying hysterically.