Olfactory/EsthisioNeuroBlastoma

Hello all thought i would share my story,

I was diagnosed with this rare cancer officially in March '17. I am only 23 years old so hearing the news was unbelieveable not only to get cancer so young but this rare form? I had symptoms starting late december/ beginning of January and it seemed just like a sinus infection. (Terrible congestion, couldn't smell anything, dizzy) and i had a few enlarged lymph nodes on my neck. Wouldn't have thought it was anything else after all i'm supposed to be "young and healthy," now it irks me anytime someone says that. Anywho after several different doctor visits and antibiotics not working i got a scan done of my neck and thats when they found it.  A mass in my sinuses between the eyes and other sinus areas (forget the names), a small portion going into my frontal lobe, and it was in the lymph nodes of my neck.  They staged it as stage D.

Plan was surgery, 7 weeks of rad, 4 rounds of chemo every 3 weeks. My first surgery was March 31st, a neck dissection, they removed 50? lymph nodes of only about 20 were cancerous. Unfortunately one of the lymph nodes was so infected it wrapped around my neck muscle so they had to remove it (sternoclenomastoid to be exact) so i have a weird indentation in my neck but it doesn't really bother me.

Second surgery was 2 weeks later, that was the biggy. Forgive me for i forget the name but something like a craniofacial? I'm not sure but they cut me ear to ear, cleaned the tumor out from both endoscopic through nose and by cutting a part of my skull out and going through there. After that 12 hour surgery i was intubated for 3 days (that was awful, glad i was asleep most the time) from too much throat swelling and had complications with fluid leak that left me hospitalized for a month. Fortunately the time did go by fast in the hospital.

I am currently at week 6 of 7 for radiation and round 3 of chemo (cisplatin/etopicide) is next week. Good news is cancer is completely gone from my neck area.

It has been a rough past few weeks i have had major issues with too much mucus/gagging/throwing up all the time because of it, my voice is mostly gone, ill get a few minutes after drinking something and be able to speak but it doesn't last long. My mouth is super dry even with all the mucus, i have little to no energy and all i do is lay in bed all day. I feel like this shouldn't be so hard on me, i see others in the cancer center that seem OK and yet i can barely muster the energy to type this.  I have no taste and am taking my food in via G-tube as well as medicines, but i do drink water throughout the day.

What sucks is i'll never be able to smell again as they had to remove my olfactory nerve, which has led me to not have the same taste buds i had pre-op. I wonder if i'll ever be able to enjoy a hamburger or pizza again.

The timing of this whole thing is just awful, i had only been 8 months into my very first job, i have struggled with social anxiety and would barely go out. I finally decided to get my life started then this happens?

I worry about this cancer coming back as i've read around it has a high recurrance rate, i do not want to go through this crap again, it is awful.  I worry i'll never have a 'normal' life, i'm supposed to be young and healthy and with this happening it's like i got slapped in the face. I worry about the future.

I'm trying to stay hopeful and positive but those dark negative thoughts seem to creep in.