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.