For almost a year, prior to having any visible sign that anything was wrong, I had intermittent pain on the left side of my tongue when I would eat or drink. I would check my tongue every 2-3 weeks to find the cause for the pain, but didn’t find anything. I even had several health care providers look at it, and they never saw anything either. I was a smoker, though a late starter, and not a heavy one. Most of my doctors have agreed that smoking was not my cause. I am also and never have been a drinker.
Found a Cancer Spot
The day that I found the lesion eating had been exceptionally painful, and I told myself on the way to the mirror that if I didn’t find anything this was the last time I would check. And there it was, a white patch with a hole in the center. It had not been there 2-3 weeks before. I asked our physician’s assistant what it was as soon as he came out of the room he was in. He said he didn’t know, but I should see an oral surgeon to have it checked. Two days later I saw the oral surgeon who said if it didn’t go away in a week he would do a biopsy. It didn’t go away and on September 26, 2006 I was told I had cancer. I was 28, my son was 3.
Removing the Cancer
On October 12, 2006 they removed the left quarter of my tongue. Prior to surgery I had tried to tell the doctors that it was growing fast. They reassured me that it was not and that after surgery I would be as good as new. No chemo. No radiation. After the surgery, they told me that I was right, it was aggressive and they could see how much it had grown from the week before. The new plan was radiation, but they HAD gotten all the cancer in the surgery.
Five days a week for five and half weeks I went for radiation. Though I could not eat or drink due to the radiation, I was not given or offered a feeding tube. I continuously vomited mucus. When I asked for help I was told I was “par for the course” and there was nothing they could do. The day my aunt had to remove my naked self from my bathtub because I was too weak, I wrote (wrote because it was too painful to speak) to the doctor that if he couldn’t euthanize me there was nothing he could do for me. They stopped radiation for a few days after that. My last day of radiation they told me that I was essentially cancer free the day of my surgery and that radiation was just to make sure. I recovered, went back to work, and had my 1st PET scan in May ’07. I was told the area that lit up was just due to radiation.
On December 1, 2007 I woke up with a golf ball sized lump under my left jaw. The doctor I worked for sent me to my surgeon that day. They did a fine needle aspiration that day and even though they stuck me 3 times it was negative. The surgeon put me on antibiotics and told me to come back and have a CT scan in 1 week if the meds didn’t make it go away. When I returned the following week he sent me to the dentist to see if he could find a cause. He couldn’t, so off I went for the CT scan. Then back to his office. When we got back to his office they ushered me back into the biopsy room. This time my husband and I knew by the change in the doctor after he looked at the microscope. It was back. They didn’t officially tell me until the next day. The following week I had a PET scan, tumor board meeting, and surgery.
On December 20, 2007 I had a modified neck dissection. In order to get all the cancer they had to scrape the jaw bone. The cancer was in the soft tissue, nerve channels, and in 4 of the 6 lymph nodes they removed. They said they got it all, again. Their oncologist told me that I had a 50% chance of keeping the cancer away for a year. I changed to a different oncologist who was willing to do anything to increase my odds.
Unfortunately, this is not the end but only the half way point. Several weeks after my surgery, I developed bubbles on the incision. They burst and we went to the ER. They told me to come back and see my surgeon in 2 days. He admitted me on the spot and they treated me for an abscess for 5 days before figuring out that I really had a fistula. A fistula is a hole from one part of the body to another. During the surgery they had created a hole from my mouth to my neck. The only way to treat this was to eat and drink only via a feeding tube until the hole healed. At dinnertime without any chance to eat, they placed the nasal feeding tube. This was replaced by a PEG tube (a tube that goes directly into your stomach through your abdomen) which is better for long term use. With the plan to eventually do radiation again this was the best option. During the procedure to place the tube, I woke up twice as they were pushing it through my abdomen. Needless to say, I was extremely traumatized.
After the fistula healed I began chemotherapy and a drug called Erbitux. After the 1st treatment caused vomiting, the hole reopened. The surgeon told me that I had to stop eating and use the feeding tube indefinitely. I decided this was a quality of life issue and did not comply. And later found out that if I had given up food the fistula would have never healed anyway.
After 2 rounds of chemo I ended up back in the hospital. I had bled out and needed 5 bags of blood and 3 bags of platelets over a 5 day period. The doctors wanted to know where I got my spirit from. I could not leave my son without a mother. My family and my son were and still are my spirit.
Next, they discovered that the radiation from the 1st time around had caused osteoradionecrosis of the jaw. This literally means the radiation killed my jawbone. This meant there could never be anymore radiation ever. After chemotherapy ended, I began hyperbaric oxygen treatment to try and heal this. Hyperbaric oxygen treatment requires you to lay in a glass chamber where they pump your body full of 100% oxygen over a 2hr period. You cannot take anything in the chamber with you; any spark could cause a massive explosion. I did this 5 days a week for 2 months but it did not help.
On October 14, 2009 they removed the dead area of my jawbone and replaced it with part of my fibula (leg bone). Recovery was slow but I am doing better now. And if someone told me tomorrow that the cancer was back, I would do all of this again. There are lasting effects from each stage of this journey but nothing that I can’t live with.
My husband has been absolutely wonderful through all of this. He is an excellent learn-on-the-spot nurse. My family has been extremely supportive. There is definitely a silver lining in the cancer cloud. For the most part, it has renewed my faith in people. And I have been able to spend so much time with my son that I would not have had if I didn’t have cancer. He is 6 now. I am almost 32. I’ve included all the gory details of my story because I want people to know that I made it through and so can they. I also want to help increase awareness, especially among non-smoking, non-drinking women age 25-45, as this is the fastest growing group to face diagnosis with this type of cancer. I used to get crabby about all the attention that breast cancer got while I was facing a deadlier cancer but since then I have accepted that all cancers need any attention they can get.
Thank you very much for the opportunity to share my story and hopefully help someone in the process.
Together we fight oral cancer. Together we save a life every hour.
Together we fight oral cancer. Together we save a life every hour.