I write to you because I’m desperate. I’m a 31 years old mother of two, and my oral cancer is back for the third time. Well, this time around there is no treatment since I have been radiated before. Everyone on the tumor board agrees no treatment should be given, however my radiation oncologist tells me we can do more radiation if I want. He says there’s more risk than benefit this time, but it’s worth the risk…I’m so confused I just don’t know what to do.
I believe I’m in real need of someone who knows what it’s like to go through this hell. I’m so sick of hearing, ‘I can only imagine…’, or ‘You are stronger than I am.” I need someone who can say HEY I KNOW EXACTLY HOW YOU FEEL…YES I TOO FELT THAT WAY, because they have actually been there. It’s not like me to open up to someone I don’t even know but I feel you understand what I’m going through. Eva I’m really on the edge and I don’t want to jump I know my children need me, but I’m so close. Thank you for reading this Eva.
I know how you feel!! I planned my funeral convinced I wouldn’t make it. I too, had two young children and I can’t believe I was ready to ‘throw in the towel.’ You have youth on your side. You have two beautiful children worth fighting the fight for. Have you had a second opinion about treatment? If not, since you are in the NYC area, contact my surgeon Dr. Mark Urken at Beth Israel and his colleague i radiation oncology Dr. Lou Harrison.
Please tell me more about your story. Who diagnosed you? What were your symptoms?
Eva, I was first diagnosed with tongue cancer (SCC) in August 2012 at age 29. It started as a white spot on my tongue which my dentist claimed was from dry mouth (although my mouth did not feel dry). When the spot turned into a sore, I was given antibiotics and creams which did not help. After 9 months, I went to a different dentist and judging by his expression, I knew something was wrong but I never expected it to be cancer.
My first surgery was minimally invasive but there was nerve invasion. I had radiation after surgery, only to have a recurrence exactly one year later. I knew something was wrong when the earache on one side just wouldn’t quit. My ENT thought it could simply be a side effect of radiation. When the biopsy proved it was back -my world fell apart for the second time.
My second surgery was 13 hours and included a tongue reconstruction, split jaw, free flap from forearm, and another neck dissection. I had my surgery two days before my 31st birthday. The truth is Eva, I’m going absolutely crazy. There are days I don’t even want to wake up.
I sound horrible. I can’t chew normally from the swelling everywhere. Honestly Eva there are days I think about calling it quits on life.
I’ve always been hard working and the thought of being disabled just makes me feel less than, I just can’t bare it…Eva I’m on the edge and I’m afraid I might just jump! Thanx for listening.
Giving up is not an option when you have two children looking up to you. The way you cope with your cancer will be a lifelong lesson to them about how they will cope with adversity in their lives. So, try to see this challenge as an opportunity to leave a legacy to your children about courage and gratitude even in the face of pain, disappointment and disability.
What do you do for work?
I know I should be thankful I’m still here… everything I’ve been through in such a small amount of time is really taking a toll on me. I’m afraid I may never be able to talk again and provide for my children.
My current position is Administrative Assistant at a Mental Health clinic which I love as I study for my MSW. I’ve always wanted to be a social worker as I love helping those in need…sadly at this point in my life I feel like I can’t even help myself. I have so much on my mind I’m on the verge of insanity.
You can feel on the verge of insanity just being a single mother of two and juggling their schedules along with work and school for yourself. Dealing with cancer on top of it all. would put anyone over the edge. You are not alone. Do you have a family member who helps you? Tell me about your children?
My daughter just turned 17 and my son is 9. I’ve had the support of friends and family all the way through. My real strength come from my children and my mom who refuses to ever sit back and watch me turn in my gloves.
I’ll never forget the words my daughter told me my first time going through radiation, I was so scared I almost didn’t want to walk into that place I just wanted to run. My daughter told me, “Sometimes the fear of suffering is worse than the suffering itself.”
I faced a lot of battles in my life, but nothing like this one. I just wasn’t prepared for this. I never had to deal with cancer in my family, I’m not sure my family knows how to handle my diagnosis.
When I complain, everyone thinks I’m delusional and look damn good for someone who had their face split open three months ago..just wish I felt the same! No one understands what its like unless they go through it themselves.
Yolanda, you are so right! No one knows. And, no one really knows what to say. There are no words really to explain away why you got this awful disease. No one means to diminish your feelings, they just don’t know what to say. Hopefully, they can be supportive, listen, and just be there when you need support.
Does your original dentist know what hell you have been through because he missed the early signs?!?!?
I told my dentist about my diagnosis and that he needs to get the education so it doesn’t happen to other patients. He wasn’t that apologetic. Had he taken action when it was just a spot, I probably wouldn’t be going through this right now. But, those damn statistics, that say someone my age who never smoked could get oral cancer!! Unless you meet an age range or fall into a category, no action will be taken. Well, I am living proof that statistic has to change!
I would love to share my story in this journey. Thank you for the offer.