thegladwinfive

The past week has been a good week. I have been feeling well physically. I have been working out, going out with the kids, watching t-ball, baseball, soccer and running races. These are the moments that keep me going as my kids smiles while doing these activities is priceless!

My middle child, who is very attached to his Momma, has been having a difficult time with me being away and going to the hospital on a daily basis. In his little mind he is so confused and doesn’t understand. I decided to bring him (Brody) and my daughter (Natalie) to the hospital with me on a “quick day” of radiation and doctor appointment. My oldest son, Bobby was in school. Since bringing them the questions have lessened and we had a good day!

After meeting with my medical oncologist, it was decided due to my hearing loss that the chemo plan is changing. I will still be getting the same drug, but rather than having a strong dose every three weeks I am changing to a smaller dose on a weekly basis. This means every Monday for the next four weeks I will be having a chemo treatment. The case of the Monday blues is really real! I will have radiation, have bloodwork, meet with the doctor and then have a four hour infusion. That’s a looonnnggg day! The following day I will have a two hour fluid flush with a radiation treatment.

Right now I have four more weeks of going to treatment every weekday with my last radiation treatment scheduled on June 28, 2019. Seriously if I could just snap my fingers and get through the month of June that would be awesome, however reality is that’s not going to happen. So for today I’m just going to pray the chemo doesn’t hit me as hard as it did the first round and my hearing doesn’t continue to worsen.

I have never been into gambling or playing the lottery. The odds are so slim and I felt that money was just being thrown away. Right now though, I am thinking I should start playing the lottery with the way my life has been going during my cancer diagnosis.

Prior to starting my treatment, I meet with my doctors and they went through the “possible” side effects. When the doctors go through these side effects, they often tell me “we have to just let you know about these potential side effects, but the chances of them happening are not likely.” In the back of my mind, those words mean nothing because I feel I am the outlier in all of this medical data. Someone has to be! I often laugh and tell the doctors they have to tell patients these possible side effects because of patients like me. Doctors shrug me off, until it actually happens!

So here I am, with these potential chemo side effects, already happening. The biggest life altering side effect from the chemo was that the drug could effect my hearing and after one chemo infusion, it happened! I know right, just laugh about it is all I can do. Go figure! As I was feeling like complete death after the chemo infusion I began getting ringing in my ears. Not constantly, but it was happening more frequently than not. When my ears weren’t ringing, my ears sounded very muffled, which I can only compare that sound and feeling like being under water. So with these changes, I knew it wasn’t good and I informed my doctor right away. I was then set up for another hearing test, which don’t you know confirmed I have changes in my hearing! Of course I do after only one chemo treatment. I now have a mild hearing loss in my left ear and a moderate hearing loss in my right ear, which is permanent damage. At this point, they can’t even tell me if this will be the extent of the damage because it can continue to get worse over time, even when I am finished my treatments. The ringing and muffled sound in my ears will not go away. I was told that some people over time learn to process those noises and put them in the back of their brain, but other people can not so there are assistive devices to help with that. I know right this isn’t the end of the world, but I also don’t know what is going to happen moving forward. Is my hearing going to continue changing from that one chemo dose? Are the doctors going to keep me on this strong chemo every three weeks? Will the chemo be changed to weekly doses? Will the doctors change the chemo drugs completely because of the hearing loss? These are all questions I do not have answers to until I meet with the doctors next week. I do understand the BIG picture is to get rid of the cancer, but honestly losing 60% of my vocal cords the last time, which has completely altered my voice, and now losing a portion of my hearing is just complete insanity!

On top of all of this, the Proton machines for radiation have still been down. This is the longest period of time the machines have EVER been down. See once again, my luck. I was literally on the table when the machine went down. There has been teams of people from all over the world working around the clock and it is still not working. They are “hopeful” the machines will be up and running next week….but I am holding my breath on that too. (Because I have heard that multiple times the past two weeks).

So literally I have no idea what is going on right now with my treatment. I don’t know times for my radiation appointments in advance because the hospital is taking it day by day and I do not know what machine I am going to be on. That makes planning rather difficult for logistics on who is taking care of the kids and who is going with me to treatment, but thank goodness I have an amazing support group who understands my frustrations. Now, with the hearing loss I also have no idea what that means for my future chemo appointments. This all drives me crazy as I am such a planner, but I am trying to take everything in stride one day at a time.

After finding out about the hearing loss, Rob asks me “is there a side effect you don’t get?” Honestly the only thing I can do is laugh about it because crying is negative energy that I definitely don’t need. But just maybe with the way my luck is going I should go buy some lottery tickets since I am continuing to beat all odds with potential side effects.

Never in my wildest imagination did I anticipate the way this week has made me feel.  The emotions of leading up to treatment as well as all the anticipation of what treatment was going to be like was far undermined in my mind.  

After leaving the hospital on Monday, spending the entire day without any treatment, I was rather disappointed.  Again, I had one more day to contemplate what treatment was going to be like and never did I imagine the start of chemotherapy to be like this…  

Tuesday morning I went to my scheduled appointment with my medical oncologist to discuss any last minute questions or concerns prior to treatment.  After meeting with the doctor I got my blood drawn and then set up for first chemotherapy session. 

At this point I couldn’t believe this was about to happen, as it felt so long for the day to actually arrive.  I was feeling so hopeful and excited to get this journey started.  During my four hour chair infusion visit, I ended up sleeping most of the time.  All of my emotions, lack of sleep and energy finally just poured at the waist side and allowed me to sleep as my mother stayed there watching me.  I can only imagine the thoughts going through her head at that time. 

Once chemotherapy was over for the day, I felt pretty good leaving my chair.  I went to the radiology department because  I was being squeezed into a session on IMRT (Photon Radiation) since Proton machines were still down. Upon leaving treatment, I felt fine until I sat in the waiting room to get my first radiation visit.  All of a sudden I felt this sharp, over powering migraine begin to set in, so I spoke with a nurse practitioner who informed that one of the anti nausea medications can trigger migraines.  Now isn’t that just great!  I had to sit and wait over three hours to be squeezed in for my first radiation treatment with a migraine.  Finally I was done treatment for the day and headed back home.  Between the first two days of “treatment” I spent over twenty-three hours in the car driving to the hospital, in a waiting room or in treatment for only having one day of treatment under me.  My body is exhausted, physically and emotionally.  

Wednesday started a new day.  I was NOT ready to get up in the morning.  Rob was traveling for work and my mom came to my house to pick me up.  She found me lying down on the bathroom floor.  I was so sick throughout the night.  I couldn’t imagine driving in the car, sitting in traffic for two hours, but I had to do it.  I showed up at the hospital completely out of it from all these medications I have been given.  I had radiation #2 completed and then went for a chemo flush of liquids for two hours, which I slept through again.  Some medications were adjusted and I was scheduled for another chemo fluid flush on Thursday.   I came home from the hospital and slept the afternoon away.  I went to my son, Brody’s tball game that night to watch him play and to get some fresh air.  I was able to watch some of his game, but then I needed to go home because I was not feeling well.  Watching him play his little heart out definitely gave me something to smile about in the mist of my agony.  

Thursday was day #3 of radiation.  I did not sleep well again and the nausea continued.  I couldn’t eat.  Nothing seemed appealing to me.  I tried to force some high calorie, protein rich foods but it wasn’t too successful.  I met for a long time with my radiation oncologist because at this point the Proton Machines are still not working.  We discussed the possibility of switching locations, which the next closest I would be referred to was the University of Maryland.  The lag time in finding a new doctor and going through all the plans again would not be beneficial in my case.  At this point there are engineers in from Belgium working on these machines around the clock.  It is with much hope they will be running by the middle of next week.  I really hope this is the case because I do not want to stay on the IMRT (Photon) machine my entire treatment.   In addition to meeting with the radiation oncologist I spoke with my nurse practitioner and switched up medications to help the chemo side-effects.  I came home from the hospital and slept all afternoon again until it was time for my oldest son, Bobby’s baseball game.  I went to that game but again could not make it through the entire game watching so I went home and went to bed.

Friday was day #4, the end of the longest week ever!  I had radiation and chemo fluid flush again.  My medications were changed as this was the last mega dose of medication that was being suggested.  This one was referred to as a “rescue” anti-nausea medication.  Again another medication that makes me drowsy, which is something I did not need.  I have been tired enough.  I came home in the afternoon and slept for hours to only wake up for about an hour and then slept until Saturday morning.  It was the first night I actually slept, without any nausea waking me up.  This is great news, but the dizziness, drowsiness and the way my body feels is simply not right.  The amount of medication I have taken this past week is beyond sickening.  Here’s to hoping this gets under control and I can have a little more energy back sometime next week.  I need to rebuild my strength to get to the next chemotherapy week.  

Never in my wildest dreams did I imagine week one going the way it did.  I knew what to expect with the radiation as I have been through that before.  I felt confident I was going to have a few more weeks of feeling okay since my doctors informed me that by week 4 is when I will really start to feel like crap.  Well gee if that isn’t scary based on how I felt this week!  

In my previous post I asked for someone to just pinch me, not literally beat me up so bad that I am out of commission but that is what happened.  My kids are adjusting differently to everything going on.  Bobby is the most compassionate seven year old that I know.  That’s just who he has always been.   He has been giving me hugs without being asked, asks me how I am feeling and if I need more rest.  Brody is my five year old who would return back in my uterus if it was possible.  He has been having really rough nights sleeping and crying for me during the night.  He’s the one asking so many questions and is the first to run to give me a hug when I walk through the door.  As for Natalie, little three year old self knows how to hit the soft spots.  Natalie tells me she won’t use the porta potty at her brothers baseball games, because “Mommy can’t get germs.”  She’s the one that will snuggle up to me and just whisper “Mommy, I miss you.”

 

You know it’s hard.  Its hard for me and my kids from being home and taking care of there every need to basically doing nothing for them.  They notice that…

It’s hard for me that it’s the end of the school year and so many fun activities are happening at their schools that I should be going to watch, and I can’t.   It is my hope that by missing this one year I will be able to be there in all the years to come. 

It’s hard on my husband who is the rock I have been leaning on.  He’s picking up so many pieces at home as well as working everyday to support our family. 

It’s hard on my mom who is watching her daughter go through this again all during the time we should be celebrating her life cancer free for the past twenty-five years. 

It’s hard to watch relationships unfold, some move closer, some further all in the mist of cancer.  

Someone needs to pinch me.  This can’t be real life.  I have been waiting with my hands tied for way too long now in anticipation of starting my treatments.  

Last night was again another sleepless night, holding my breath while millions of thoughts raced through my mind about all the possible challenges about to arise.  I got up out of bed in the morning and actually put on jeans, a cute shirt (not wearing my typical gym/mom uniform) and some makeup.  I was ready for the day ahead of me.  My mom and I drove to the hospital in prime time traffic, which means the drive took two hours and fifteen minutes.  Then we waited in line for the elevator, which I had to take a picture!

I entered the radiation waiting room and was informed I needed to watch a video since it was my first day.  The video welcomed me to proton radiation and explained how technical and sensitive these machines are, which in turn makes them need more frequent maintenance and at times can post-pone treatment.  At the end of the video, my mom and I joked about how seeing that video would of been helpful to see prior to last week since my treatments were canceled all week.  I was quickly called back to the proton radiation waiting room where I changed into the hospital gown.  I sat and waited and was informed that the beam from the machine was running slower than usual so the technicians were sorry they were behind schedule.  “As long as I get a treatment in today, I am fine with the delay,” I said.  

An hour after my scheduled appointment time, it was finally my turn.  I have never seen anything like it.  This machine is HUGE!  It’s two stories tall and different pieces come from all different directions to get the beam in the precise location.  I was informed that today my duration on the table was going to be a little longer than normal since it was my first day.  The technicians needed to double check all of the beams and images to allow the doctor to review before the beam was delivered.  So, I laid on the bed in position as the proton machine spun around me and different devices came in various directions.  I was laying still and everything was going smooth, although I was in utter disbelief what was actually happening and intimated by the size and complexity of this machine.  The doctor was going to review the images and then I was going to start treatment within a few minutes…

As so many thoughts were racing through my mind, I was informed that the machines were having problems! The engineers were on their way so I was going to have to wait about thirty more minutes.  I sat back in the waiting room frustrated but calm trying to look at the bigger picture that now my images were completed so I was partially through day one.  We waited…and waited.  We continued to get additional updates that the engineers still were not sure what was going wrong and kept being told an additional update would be given in one hour, then two hours, etc…

We continued to wait until mid afternoon when we were given an update again that the machines were still not working.  We decided to leave the hospital and it took two hours to get home, which made our day of waiting in anticipation ten gruesome hours.   

Going to bed tonight I do not know what is going to happen tomorrow.  I am scheduled for my first chemo appointment, but now I know I won’t be going to that if the radiation machines are still down.  Tonight do I go to bed in anticipation of starting treatment, being stuck at a hospital for countless hours inundated with radiation and drugs or do I try to plan a day of normal life activities with my kids while cancer continues to have a field day in my body?  

It’s a feeling that I would do anything to get out of, but the restriction is so tight being that my hands are tied.  Each day that continues to pass, more thoughts cross my mind.  As I was supposed to start Radiation and Chemo on May 7, 2019 I reluctantly found out that was not going to be the situation.  

On May 7, 2019 I woke up at 4:30 A.M., or should I say got out of bed because I am not really sure if I slept at all that night because I saw every hour on the clock.  Anxiety was at an all time high as I needed to wake up early to leave for my first radiation and chemotherapy appointment.  My three children slept over my in-laws so Rob and I could just get up and go in the morning.  My bag was packed with the items I was bringing to keep me occupied and warm during my four hour chemo session; blanket, slippers, chapstick, snacks, ice water, dry mouth spray and all my other dry mouth items, phone charger and magazines. Rob and I started driving to the hospital and were talking about how excited we were that this was starting so we could get it over with.  We were about thirty minutes into our commute when I received a phone call explaining to me that the Proton radiation machine was down and would not be working for the day.  I knew this was a possibility as I was informed they would be working on the machine over the weekend, but I assumed since I did not hear anything on Monday I was good to go.  Especially considering Monday evening (May 6, 2019) around 7:30PM I received a call from the chemotherapy department telling me they were anticipating my arrival and were all ready for me.  So, once I found out over the phone radiation was canceled I questioned if I should still come to the hospital since I was scheduled for Chemotherapy.  Deep down inside I didn’t think I would start chemo that day since I thought the doctors wanted to start them together, but I was told to come since I was already half way there.  It was too early in the morning to call the medical oncologist department, so Rob and I decided to keep driving since we left so early to avoid traffic.  Upon arriving at the hospital I was told I would be starting chemotherapy since it was a different department, however it wasn’t until one wonderful nurse heard me continuing to question why I believed this wouldn’t be the case and she stepped in.  This nurse took charge and followed her phone chain trying to reach someone to get an answer, but was unable to get through to anyone with it being so early in the morning.  Finally my doctor was called and I was told to not start chemo and that I would be rescheduled.  So out of utter disgust, Rob and I drove back home.  I was simply livid!  Is this really happening? Why didn’t anyone call me the night before if they knew the machines were still down?  I have been psyching myself up to start my treatment and finally I thought the day arrived to only be turned away.  

This week was another long week waiting in anticipation of when the machines were going to be working again.  I found out the machines were going to be down the entire week.  How is this even possible?  What is happening to the patients that are in the middle of their treatment?  Is this going to happen to me when I start?  All of these are questions I continue to have and will address when I meet with my doctors.  

On Friday, I received a call that the machines are up and running again and I am scheduled to start Radiation on Monday May 13, 2019 and Chemotherapy will start the next day.  As long as I start chemotherapy within the first three days of radiation I will be good to go.  

The thought that cancer continues to grow and another week just past by with nothing being done about it utterly freaks me out.  I am also holding my breath about treatment starting on Monday, because is it really going to happen?  I am beyond ready to get this battle started yet the machine was not.  “Those machines are afraid of you,” a friend told me when he found out I didn’t start my treatment.  This comment definitely made me laugh, but I sure hope its the truth because I am literally at the point where the handcuffs NEED to be released so I can put my fighting gloves on.    

 

Lately all I know is that my life has felt like a large puzzle, with pieces everywhere and nothing connecting.  There has been so many questions and so many possibilities.  During the past week, I feel as though the puzzle is coming together.  I heard from insurance that I was approved for Proton radiation, prayers are being answered!  I made the decision to stay home and be treated at Penn.  I was able to get my schedule for treatment, which means I will be starting Radiation and Chemo on May 7, 2019 with my last radiation day being June 21, 2019.  I have figured out a schedule on who will be going with me to treatment and who will be with my kids.  I am so fortunate to have amazing family and friends and I count my blessings everyday because especially during this time, it takes a village! 

I received an unexpected phone call from my radiation oncologist this week to inform me of possible side effects from the radiation.  Although the chances of these side effects are very low since I am getting Proton radiation, there is still a chance so I needed to be warned.  Due to the location of the tumor it is very close to the spinal cord, which if that is hit it could be paralyzing.  The tumor is also located near where a group of nerves come together that control the function and feeling in my right arm and hand.  There is a chance I could lose feeling or function in my right arm/hand.  The radiation could also damage my esophagus causing difficulty swallowing, in which case I could potentially need to have my esophagus stretched one-two times a year or a hole could form in my esophagus, which is life threatening.  I am very well aware of the fact that these side effects have a low possibility of happening, however I can’t help but worry especially considering my chances of this type of cancer, this number of times is practically unheard of.   I truly believe I am going to beat cancer, but right now I am questioning how else my life going to change from all of this?  I still get people asking me why I talk the way I do, or make comments that I don’t sound good.  I have grown to accept those comments because the reality is, most people I know have never encountered a woman my age experience this type of cancer.  The really scary part of all of this is the fact that these radiation side effects won’t show up during treatment, but will show up 2-12+ months after treatment and the doctor can’t tell me when/if I will ever be clear of these potential side effects.  Radiation is just a gift that keeps on giving!   For now, I am not only scared of the chance of losing my hearing from chemo, but now all these radiation side effects!

Currently I am simply trying to take all of this one day at a time.  I am more than ready to get treatment started so this cancer can stop growing in my body! It’s a very strange feeling to know cancer is continuing to grow, yet nothing is being done about it yet… 

Wow!  That was the LONGEST 21 days or 504 hours ever!  I have been waiting with very little information pertaining to the return of my cancer.  My mind has been wondering with every thought and fear possible.  Each day I wanted to know what the plan was going to be and after yesterday I believe I am moving forward.  

I have been having a mix of emotions in returning back to Johns Hopkins, with my previous radiation oncologist because honestly he is the BEST doctor I have ever encountered.  His knowledge, talent and bedside manner are something that will never be matched.  He has been involved in my case since the return of the cancer and has called me in the evenings, on the weekends and squeezed me into an appointment when there was no time slot.  Reality is, he is amazing and I believe he truly cares for me.  Apparently there is very little information on my cancer returning to this location (to the trachea from the larynx).  My doctor from Johns Hopkins was honest with me and informed me that although it was completely necessary that he was my radiation oncologist the last time, with the radiation to the larynx and neck, this time there are other amazing doctors that can treat the new tumor.  He understands traveling to Johns Hopkins is not easy and he understands the demands of me as a mother to three young children.  So, although he would take me on as a patient again, staying at Penn for treatment is going to be the better decision for me and my family.  

Two days ago, I meet with a new radiation oncologist (at Penn) who was very informative.  I learned that I will be receiving 33 rounds of radiation treatment (Monday-Friday) to the trachea and surrounding tissue, which may cause swallowing and breathing to become more difficult as treatment goes on.  My skin will burn and I will be fatigued.  I was informed about Proton radiation versus Photon radiation and my treatment team believes I am a good candidate for Proton treatment.  The benefit of Proton radiation is that the radiation is able to move towards the tumor and then stop.  Photon radiation is when the beam does not stop therefor continues to move through other tissues causing more damage internally.  The bad news with Proton radiation is that it is much more expensive so insurance companies do not always approve it.   Right now I am in a waiting period with the insurance company.  

Yesterday, I met with the medical oncologist to inform me about the recommended chemotherapy.  The plan may change based on how I am tolerating the treatment, which we didn’t go through additional options because we’re going to take it one step at a time.  For now I will be receiving 3 chemotherapy treatments (one treatment every 3 weeks).  The actual chemo will be through an IV and will take four hours.  Prior to each chemo treatment, I will have my bloodwork done to check my blood count.  I will also still have radiation that day and an appointment with the doctor, so it will be a LONG day.  Then two additional days that week, I will have a  two hour IV “fluid flush” to try to get rid of the chemo from my kidneys.  I was prescribed “really strong” anti-nausea medications, was told I probably will not lose my hair but it will probably thin out (to what extend I don’t know) and I have a chance of losing my hearing from the chemo which could happen quickly or could be later in life.  So, next week I am scheduled for a hearing test to get a baseline.  I mean permanent hearing loss is some serious medication!  

In addition to meeting the medical oncologist, I had my radiation simulation, a PET/CT with and without contrast done again and I got my first tattoo!  (Four of them to be exact.  They are just small dots to line up the radiation.  I did not have them the last time because I wore a mask during treatment so the dots were on the mask). During the simulation the technicians put a waist band around my waist and inflated it with air (like a blood pressure cuff) until I could no longer tolerate the pressure.  I will wear this for each radiation treatment to help minimize the amount of movement in my chest, since the tumor moves around with each breath I take.  

Needless to say it has felt like a very long time to get to this point.  Although I now have some answers to questions, the mixture of emotions has been extreme and… with more information, more questions arise so now there are additional obstacles to overcome. 

 

Since all of my previous treatments, when I get sick, I get more sick than I ever did before since I do not have many lymph nodes in my neck to help drain.  The beginning of March 2019 I got what I thought was a really bad sinus infection.  So I went on antibiotics, which cleared my head congestion but didn’t do anything else.  I started having trouble breathing.  My voice was going in and out. It didn’t hurt.  I no longer felt sick. I just couldn’t breathe normal.  My voice wasn’t my new normal and I just KNEW something was wrong.  I wasn’t scheduled for my next set of scans until the end of April 2019 but I knew I had to be seen.  

I called my ENT and they were able to get me in that week (by the way I sounded over the phone) but I couldn’t get my CT/MRI scans done until  the day after my office visit.  So I went to my doctor appointment and my doctor scoped me in the office as usual.  My vocal cords look great!  Swollen but great.  It’s laryngitis.  I think okay that’s great! Then, I told my doctor about my trouble breathing and he informed me that with all the swelling in my larynx and radiation effects it is very possible I am feeling the shortness of breath and it could also be bronchitis.  “Okay I am just making this stuff up in my head my larynx is great…I will be fine,” I think to myself.  I will start the prescribed steroids and go from there.  However, deep down inside I just KNEW that’s not what it was.  From then, my breathing got worse but of course I just made the connection that now I had high anxiety with waiting on my CT/MRI results to come back.  

So then I waited a few days for my results to come back and it showed questionable areas on my trachea (hence the trouble breathing).  I was informed that I now need to have a PET scan to get more detail of the questionable areas BUT I should wait until the steroids cleared my system so false positives don’t show on the scan.  My doctor honestly thought my vocal cords looked beautiful.  I had the best surgeons and oncologist in the country (hence going to the Mayo Clinic, Johns Hopkins and Penn).  There is no way this cancer could return.  I on the other hand was no so confident but I also didn’t believe with all that I have been through that the cancer would return this soon.  (I knew from having radiation I had a higher chance of having cancer again in my lifetime simply because of my age, but I thought it would be much later in life…if ever).  

April 1, 2019 – PET scan completed

April 2, 2019 – PET scan results came back highly suspicious with two location on my trachea (windpipe) hence the breathing difficulty and questionable lymph node.  

April 3, 2019 – I met with a doctor to perform  a bronchoscope biopsy under anesthesia.  

April 4, 2019 – Brochoscope completed at Penn.  This biopsy will determine exact staging of the cancer and identify exact location in order to determine what treatment options are the best.  Biopsy results will take 3-5 days to come back and then the tumor board will meet to discuss best treatment options.   The tumor board meets once a week on Thursdays so I am hoping to have a little more knowledge the end of next week.

At first when the doctors viewed the scans the one tumor looked inoperable, however after the biopsy it appears it may be operable BUT of course only one doctor in the country would be recommended due to the complexity.  The small amount I know is I believe that doctor is in Boston.  Surgery most likely won’t be the only treatment.   Radiation, chemotherapy, immunotherapy were all options mentioned but it is really going to depend on the biopsy results.  My ENT doctor at Penn already connected with my radiologist at Johns Hopkins to update him.

April 5, 2019 – I am waiting…for results, for tumor boards to meet at Penn and at Hopkins, for doctors appointments, for more information.  It totally SUCKS!

A quick recap of my journey with cancer diagnosis:

#1 – While pregnant with Brody, I lost my voice November 2013.  Was told it wasn’t concerning from an ENT and didn’t “look like cancer.”  There would be more harm to the baby to operate so decided to wait until Brody was born March 7, 2014 to schedule surgery.  In the mean time, I couldn’t work (teacher) because I had absolutely NO voice.  Taught my oldest son sign language at 18 months since he was non-verbal and well so was I.  He learned over 80 words in sign language and actually still to this day he still gets speech therapy due to his speech delay.  Exactly 3 weeks after having Brody, I have surgery and it WAS CANCER.  Laryngeal Cancer.  So I had another surgery and it was “gone.”  Yay I was in remission!”  I would continue going to all of my follow up doctor appointments and scans and was clear!  Then I get pregnant again with Natalie and my office visits increased so I could be scoped more frequently just to keep an eye on me.  I felt great about that AND the fact everything always looked perfect. 

#2 – Natalie was born October 15, 2015 and by November 2015 my voice was starting to go.  I called my ENT to move my appointment up and something looked suspicious.  So, I was scheduled for surgery.  Results came back and it was cancer….again….but this time Stage 2 invasive.  So I was transferred to another ENT, who then decided based on my age and the rarity of this cancer my journey to the Mayo Clinic in Scottsdale, Arizona began.  There I had 60% of my vocal cords removed and a left neck dissection since some lymph nodes were affected.  The doctor decided to not do the right neck dissection because based on the lymph nodes he removed, I should be good as this cancer doesn’t typically cross the midline.  

#3 – May 2016 PET scan results came back and guess what?!  The cancer crossed the midline!  Now in lymph nodes on the right side of my neck.  So this time I had a right neck dissection at Penn and then was sent to Johns Hopkins for radiation the summer of 2016.  Since then all my scans have been NED (No Evidence of Disease), and I have been in remission.  I went from every 3 month scans to every 6 months and its been about 2.5 years UNTIL…

#4 – March/April 2019.  

I’ve been quiet for some time on my journey through recurrent laryngeal cancer.  August 2016 marked the end of my radiation therapy, which was a huge celebration, but it did not mark the end of my journey.  Since then, I have been to hundreds of therapy appointments between speech therapy learning how to swallow, eat and talk to physical therapy to gain and maintain neck and shoulder movement to lymphedema therapy to assist with the proper drainage of the lymphatic system.  Currently, I still attend weekly therapy for lymphedema, wear a night compression garment and use a home lymphatic machine to keep everything flowing.  The number of doctors appointments, specialist visits, bloodwork, PET/CT/MRI scans I have gone to is sickening and the number of pharmacidical drugs I have been on to control various systems it utterly disgusting.  Since the end of radiation treatment, I have been diagnosed with hypothyroidism since the radiation completely killed my thyroid, vitamin defiencies and probable Celiac Disease.  (I carry the gene for Celiac but refused to begin eating gluten again to go through more testing to confirm diagnosis when the treatment for Celiac and gluten intolerance if the same treatment…no gluten).  My entire life style has changed, I have changed physically, mentally and emotionally and although it has been frustrating at times I have been extremely grateful to be alive.  

I continue to be asked on a regular basis if I am sick because I do not sound well and my response has turned into “no, I am not sick I HAD cancer.”  That sense of past tense felt so good from everything that I have accomplished to all that I have been able to see and experience.  Just as much as it used to frustrate me on people asking if I was sick, it now frustrates me on people who know what I have been through to comment on how well my voice sounds.  To them, it may sound good but they don’t understand the daily impact of how I feel about my voice change.  They don’t understand how frustrating it is for me to be in a restaurant or a large open room and not be able to talk, say what I want to say and the energy it takes to do the talking.  Trust me, I know that my voice doesn’t sound good so telling me it does is not true.  Maybe it sounds okay for what I have been through but it doesn’t sound good.  

Now with all that said, I believe I am one of the most attuned people to my body.  Just like the past three times, I KNEW something was wrong.