Saturday, June 23, 2007

My Tongue Cancer Story

In November 2004, shortly after the birth of my second son, I noticed a sore spot under my tongue. I didn’t think much of it at first. About that time I was dealing with the exhaustion only the mother of a newborn knows and an awful head cold. I made an appointment with my family doctor complaining of a sore throat, ear pain, head congestion and a sore under my tongue. After examination I was given a round of antibiotics and sent on my way. Soon after, all the symptoms disappeared except the tongue sore and ear pain. It was the holidays and I was enjoying our little family and just ignored the pain. Come January 2005 as the sore on my tongue started to affect my eating I started to worry. I hopped on the computer and did some research. After battling breast cancer 2 years earlier I immediately googled oral cancer. Ten minutes later I was crying, calling Jake at work and telling him the oral cancer pictures and my tongue looked the same. However, certain two cancers couldn’t possible be in the cards for me I held onto hope. I scheduled an appointment with my dentist for later that day. He took one look at my mouth and said it looked like cancer, but because I had never been a smoker and do not drink it was unlikely to be the case. He referred me to an ENT for the biopsy. The day after the biopsy the results were in….squamous cell carcinoma of the tongue. Overwhelmingly I felt anger. Hadn’t I paid my dues with breast cancer? Reese had just turned 4 months old and my second chance at enjoying my child’s infanthood was snatched from me once again.

My medical oncologist saw me later that day and it was determined I would have the mass removed along with a lymph node dissection of my right neck, chemotherapy and radiation concurrently. For once in my life I was in love with my hair. After being bald for nearly a year, my hair was to my shoulders and I was enjoying good hair days. Then my oncologist tells me chemo will most likely make it fall out again. I had held it together pretty well until that point and then I lost it. Not over treatment, not over fear, but over hair!

On January 25, 2005, I had one third of my tongue removed and a node dissection of the neck, a stay in ICU and weeks of learning how to talk and eat normally. Just as my speech returned I faced chemotherapy and radiation treatments. Unlike breast cancer I would have them at the same time. This appealed to me only because I would be done with treatment sooner…….my goal. My mom came to live with us for two months (couldn’t have managed without her) as I would have radiation treatments every day and chemotherapy once a week. Yes, that meant one day a week I’d have radiation followed by a four hour chemotherapy session. I began taking daily Amifostine shots to help protect my salivary glands during radiation. Eleven days into it I developed an allergic reaction to the shot that landed me a three day hospital stay. The doctors misdiagnosed me with a UTI and once I was discharged I resumed treatment and the shot. Within one hour after the next shot as I shopped in Old Navy I had “that feeling” coming on again. I got home as soon as I could and told my mom it was happening again. She tracked Jake down to come home and I demanded they call 911 and get me to the hospital. I had uncontrollable nausea, vomiting, fever, chills, shakes, dangerously high blood pressure and a racing pulse. I was admitted four days to the hospital, this time they determined it was the Amifostine and I would resume treatment minus the shot. I was so thankful to not be getting the daily shot, but what would this mean to my salivary glands? I continued treatment fairly uneventfully and after completing all 40 days of radiation and eight chemotherapies. I was at last finished! I was left with a thirty pound weight loss, no appetite, a dry mouth and no taste buds.

I am happy to report the taste buds came back very quickly and with it a few extra pounds and I managed to keep all my hair this time! May 2005, at the age of 32 I became a cancer survivor squared.


Jenny said...

You are an amazing person, Hope.

Anonymous said...

I too am a tongue cancer patient. I am 27 years old, a brand new mom and never have smoked in my life. I've been through 2 tongue surgeries and I'm about to start radiation. I'm so glad to hear your survival story. You've given me hope, thank you. Belinda, Indianapolis, IN

Anonymous said...

You are amzing and I admire your strength and courage. I am sorry you have had to go through all this as being a mother of 2 is hard enough. Glad to hear you are doing well and are happy !

Anonymous said...

I too was diagnosed with Squamous Cell of the tongue this past September 2012. Did they rule out HPV as the cause of your cancer? Mine was diagnosed as being caused by the HPV virus. This apparently has become a very common cause of mouth cancer in adults who do not smoke or drink excessively. My oncologists also explained that you can prevent this type of cancer in your children by getting them the Guardasil Vaccine. This vaccine can be administered between the ages of 9 and 26. My son actually received his at his college medical facility following my diagnosis.

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