How has ACC changed my life?

I was diagnosed with cancer in 1996 at the age of 32. The tumor was found in my left paranasal sinus. I had been having symptoms for about eight months, but neither my doctor nor myself even considered the fact that we might be dealing with cancer. We thought I was just experiencing severe sinus problems. Even when my left nostril became completely blocked, my ENT physician said it was just a benign growth. In order to improve my breathing, I had surgery to remove the blockage. A sample of the removed tissue was sent to the pathology department. I will never forget where I was and what I was doing the day after surgery when I received the phone call from my doctor. The specimen had tested positive and I was diagnosed with Adenoid Cystic Carcinoma.

My treatment consisted of two more surgeries at Virginia Mason Hospital in Seattle, Washington with Dr. Michael Glenn. These were followed by neutron radiation and two high-dose radiation implants under the supervision of Dr. George Laramore at the University of Washington. I was doing well for about four and a half years and then I began to notice numbness on the left side of my face. The tumor had come back. I remember being very upset, but not nearly as upset as I had been when I was first diagnosed. I recall that my emotions kind of quickly evolved into the feeling, “been here, done that.” I was a bit more positive because at least I already knew what I was up against. I also had a ton of research under my belt so it wasn’t like I was starting all over from scratch. I sought opinions from my doctor in Hawaii, my doctors in Seattle, and from doctors at M.D. Anderson in Houston, Texas. After these consultations, I decided to treat the tumor with stereotactic radiation at the University of Washington. Our goal was to buy us some time, and we did, but in June 2003, my bi-annual MRI of the brain revealed extensive tumor, this time located near my left orbit and optic nerve. Due to the location of the tumor, further surgery and radiation were ruled out as possible treatments.

From research on the web, I learned about a new drug called Gleevec, which was having some success with gastrointestinal cancers. These cancers generally contained a protein called C-kit. This abnormal protein basically sends out a signal, telling the cancerous cells to keep growing. Gleevec has shown promise by being able to block or shut off this signal so the cancerous cells quit growing. The train of thought is that maybe Gleevec would work for other cancers, which also test positive for the protein C-kit. I decided to have the particular tumor tested for C-kit. This is easier than it sounds. Most pathology departments keep a sample of your particular tumor, either on a slide or a block for up to seven years. Upon request, the pathologist can do any number of tests to the original tumor sample. My cancer tested positive for C-kit and so I began treatment with Gleevec a short time later. We thought we were having good results because we were noting stabilization of the tumor behind my eye. However, our views changed when during a routine surgery to try and improve the hearing in my left ear, extensive tumor was found in the middle ear as well as down along the Eustachian tube. Now, I am actively researching for some type of treatment for the tumor in the middle ear, along the base of the skull, behind the left eye and metastases (“mets”) in both lungs. I have not been overly concerned with the mets in the lungs as they are small and have yet to cause any symptoms.

The cancer has caused many changes in my life, but none that I would define as major. Some of the changes are noticeable to others while some are only known to me. For the most part, I would categorize them more as an inconvenience. They have made various parts of “living” more difficult, but I’ve been able to adapt and work through them.

My appearance has changed due to the radiation. There is muscle atrophy on the left side of my face. I also have what is called Horner’s Syndrome, which causes my left eyelid to droop just a bit, and the pupils to be different sizes. My vision is slowly deteriorating. I have double vision when I look up and to the left. This at first made it a little scary to drive but I have hence learned how to deal with it so it no longer poses a problem.

I have “arthritis” in my jaws. There’s a medical term for it, but basically, arthritis pretty much describes what is going on. I am unable to open my mouth as wide as I used to in the past. This is due to damage caused by the radiation. To give you an idea as to the limitation, put your index and middle finger together. I cannot open as wide as the width of those two fingers. This has made eating some foods difficult, such as burgers and sub sandwiches. I do have a plastic device called Ther-a-bite which helps prevent further deterioration by exercising and stretching the jaws open. This deterioration has also caused my “bite” to be a little off-center. This makes it somewhat difficult to eat and I unfortunately have trouble with food dribbling out the left corner of my mouth. I usually am not aware of this until a family member or close friend gives me “the look” while pointing or scratching their chin. Several times I would be out and about shopping or whatever, and come home and discover in the mirror that I still had half of my lunch or dinner still on my chin. I’m normally not aware of the spillage because the entire left side of my face is numb. Carrying a small mirror has remedied this problem.

Along with the numbness on the left side of my face are bouts of itching. Every once in a while, the whole left side of my face and head will itch and I’ll have to give it a vigorous rub down in order to make the sensation go away. Another peculiarity is that when the person cutting my hair inadvertently pulls too hard on the hair on the left side of my scalp, I’ll get a sharp jab of pain. This never happens on the right side.

I take a number of medications every day, most of them to deal with pain. They work very well but I must say I do find it a little depressing knowing that I cannot make it through the day without them and that I have become so dependent. I now have to know exactly how long I am going to be gone, in order to ensure that I have a sufficient supply of medication. This at first posed a challenge because I am a flight attendant for an international airline. I am normally away from home, usually in Asia for three to six days at a time. Before I walk out the door, I must ensure that I have my required medication, plus some extra just in case my trip gets extended. At home, I now have a small bag of pills in my pocket all the time. There have been several instances in the past where the evening’s activities have been cut short due to my not being able to control the pain as I had left my meds at home.

Physically, I believe I am still able to do just about what every other 40 year-old male could do. I go to the gym and like to workout. I do consider myself lucky as I know there are many others whose cancer has caused much more physical debilitation.

I remember shortly after being diagnosed that my whole attitude and outlook on life changed. I no longer sweated the “small stuff.” Things just no longer mattered. Unfortunately, with the passage of time, I’ve noticed that I have slowly slid back to my old ways and have begun letting trivial things, which shouldn’t even be a concern, begin to bother me. I really wish I could return to that place shortly after diagnosis, a place where more time and effort is given to matters that are important in life. I now realize that I’d prefer not to spin my wheels and worry about little things that in the whole scheme of things do not deserve all the effort and attention.

I have never had a desire to have children, so thankfully I will not have to address child-rearing concerns or ensure their care if something were to happen to me.

My current profession has been a blessing. Working for an airline has allowed me to travel across the United States when I want to see a particular physician or get another opinion, and it currently allows me to travel back and forth to Seattle for my quarterly check-ups. I also am very blessed and thankful that I have such a great support system from my family and friends.

ACC has caused many changes in my life but it has NOT stopped me from living. I still do whatever I desire and would like to do. Whatever difficulties the cancer produces, I have found, just as the others have in our group, that there is always a way to get through it and continue on with life. I intend to be here, giving you another update as to how I am dealing with change when I reach the age of 50!

Aloha,

Dan Withrow