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.