Dinah's Story
How I lost my taste for chocolate
Where do I even start this story? Easy to say; you start at the beginning, but in doing so I’m going to have to admit a lot of things to myself. Starting with the biggest – it was so easy to keep my head stuck in the sand for way too long. I probably have no one to blame but myself for the advanced stage of my cancer. Notice I still say “probably”. But I ignored things and procrastinated too long before stopping my tobacco use, getting a definitive diagnosis when I was having problems, and even in getting treated.
My story starts when I started smoking at 15, another point in this story which starting at the beginning brings painfully home. We’ll skip those years, ( we all NOW know that smoking for a long time is dangerous to your health) and fast-forward to the year 1999. Both my husband and myself used to be smokers. He quit in 1998, I continued on, because I liked it and I wasn’t feeling any bad effects from smoking. He always said he’d quit when it made him feel bad. Mike my husband, true to his promise, quit when he started experiencing shortness of breath and coughing. I never mentioned it, but I did start to have a chronic sore throat and sinus problems. Then I started losing my voice a bit. Things had gotten bad enough that I decided to try to quit, and bought the patch. Well, that didn’t work, I’d just have one, then a second one, then my throat started feeling better and my voice would come back; so I began smoking again. That repeating cycle pretty much convinced me I wasn’t strong enough to quit. I eventually entered into a mindset that figured “why set myself up for failure by even trying?”
Then it seemed as if every 3 or 4 months I was at the “doc in the box” because the lymph node behind my left ear was swollen. They would always give me antibiotics and send me home. The doctors really weren’t concerned, because tumors don’t respond to antibiotics and my swelling kept going away. At all of these trips they told me I should see an ENT and get it checked out. But I never followed through…
I was pretty much getting tired of always losing my voice and sounding like a smoker…not a great image for a sales person, On August 13, 2000 Mike and I went out of town on an errand and he got me the “love of my life” a standard poodle puppy, 3 months old. He was an “agree to quit smoking present”. The day we picked up Rex, I threw away my cigarettes and haven’t had one since. (I did use the patch again and probably couldn’t have done it without the help. Thank goodness, because Mike swore if I ever started again, Rex would have to go back.)
The cigarettes went away, and although the throat wasn’t as sore, the lymph node problem remained. Hard like a marble, a constant reminder that something wasn’t right. Again putting this off and ignoring the problem, I waited until Mike was at a dermatologist (my cousin) appointment getting skin cancers burned off, and showed the doctor my swollen neck. He called a friend of his, an ENT, who saw me immediately. Back to square one, a prescription for antibiotics, and of course down the swelling goes down…I believe it was my third visit of up and down with the node and antibiotics when he decided to biopsy the node. He was sure it was nothing, because it didn’t “act” like it should if it was something serious. Sure enough the biopsy came back negative. I’m a traveling salesman, and I remember having a toast that night with coworkers on the road because the message on my answering machine said negative.
Fast forward to the swelling starting again…another doctor visit, and he says let’s just get rid of the thing. It’s half hour out patient surgery and we’ll be done with it. I had to leave town again that next week, so we scheduled surgery for the following week.
One the day of the surgery, Mike and I were there bright and early, ready to go get this over with. It was October 3, 2001 and I remember thinking the timing would make it easy to recover, and I could still go do my dog sports with Rex and Mike on Friday night. I can’t even imagine what “Hell” Mike must have been going through when a half hour surgery turned into three and half hours. I of course slept through the whole thing, and as people will hear me say often, I do believe it’s easier on the patient then the caregiver at times. The doctor explained to Mike that there had been a large tumor under the lymph node, wrapped around my carotid artery, jugular, and the trapezoid muscle in my neck. The surgery took so long because of this discovery and due to my blood pressure dropping drastically because of where he was working. Needless to say, he was totally shocked and couldn’t understand how it had been hiding all this time…and as he said once, “how he could have missed it?” I don’t particularly know one surgeon from another, but I know I woke up from that surgery as delicate as it was near those vital blood vessels, so he must have been pretty good. I now know that a fine needle biopsy of a node is not conclusive. After all, it is only a few needle size samplings from something the size of an almond, and the possibility of the needle not hitting the right spot is high. But even this idea doesn’t even visit the concept that something could be under the node growing…. After the umpteenth round of antibiotics, maybe someone should have thought about a CT scan or something.
The tumor he removed of course was malignant. Next step, he sends me for head and lung CT scans to find the primary site of the cancer. So off we go, O.K. doc anything you say. Whoops, results are back and nothing shows, so we have to do a radical neck dissection to try and find the primary. O.K. doc, if you say so, let’s go. Notice the change in tone during this writing from when we begin dealing with the doctors and a real cancer. My philosophy of: “the doctor is always right and knows everything” is showing, and is hard to overcome. That was part of my upbringing. Doctors stood right next to God as being all knowing and all seeing. Given that perspective, I wasn’t going to argue. Even though this was my life, (and it all seemed surreal anyway), so I went along without asking questions. After all, the doctors know what’s best, right?
While I was gone my brother and Mike took on the unpleasant job of calling friends and family with the news. Mike called our son-in-law to tell him so he could sit our 30-year-old daughter down and talk to her calmly. They had just moved from Texas to Chicago a couple of months before, and we knew that would be weighing on her mind. We made plans for her to come home for the surgery and spend a couple of days at the hospital and with us at home recovering. We made a decision to not tell my 85-year-old mother and swore the rest of the family to secrecy. She isn’t the most aware person and telling her the doctor was going to take a couple of lumps out of my neck satisfied her.
On October 17th I was scheduled for surgery with my ENT, and another ENT oncologist to assist. Same routine, different hospital. My brother came up to be with Mike while he waited. My daughter was scheduled to arrive that afternoon and comes straight to the hospital. After surgery they tell Mike that it all went O.K. They found the primary site, my left tonsil, and they removed numerous lymph nodes. Neither Mike nor I remember how many. The doctor tells us to plan on either radiation or chemo or both.
Thank goodness our daughter was here. She was able to stay at the hospital with me for 2 nights, giving Mike a needed break for himself, to go home and let the dogs out. Dogs are good medicine for people anyway, and I’m sure it felt good to get home after a long day and see really happy beings…
Before going back to the doctor to have the stitches removed and discuss treatment I began a search for tonsil cancer on the Internet…a very unsuccessful search. I couldn’t find much information. I did find one site by a man that posted his story from beginning to 2 years after radiation. I am so thankful to him – especially for the information explaining the mask they would make for my head. He also discussed his side effects and all the problems, with suggestions on products and remedies that helped him get through. With this information I wasn’t going into radiation totally blind. The known sometimes seems less scary than the unknown…even if it is cancer treatment.
Finally it was back to the doctor for the stitches to be removed and to be told what my treatment would be. Notice I said told about my treatment, there was no discussion about alternatives. He was pleased by the fact I could raise my arm and my face didn’t droop on the left side. These were both possible side effects of the radical neck dissection. He told me to begin taking a multi vitamin and see a dentist before radiation. He looked in my mouth again and said he still couldn’t see the cancer on the tonsil. How could he have missed it? At this point would you believe that I had to ask him what kind of cancer it was? The definitive diagnosis; a squamous cell carcinoma of the left tonsil with neck metastasis. He wrote it on his business card for me. I also asked if it couldn’t jump sides one day. What was to keep it from showing up on the other side? He said, “that was a good question, but for some reason it just doesn’t.” He gave me the name of the radiation oncologist and explained I wouldn’t see him again until after radiation. Really nice doctor and I feel a good surgeon, but I wish he’d have been more forthcoming with information and discussion. I always felt a bit rushed when we were in his office. Maybe I just wish I would have asked more questions, or even known what to ask.
So off we go to the radiation oncologist for the initial workup…great people at this cancer treatment center. There was a good feeling when walking in the door and those feelings never left. At our initial appointment the doctor told me that he would be doing 39 radiation treatments, daily except for Saturday and Sundays, and no, I couldn’t skip a couple of days to go out of town on business. Little did I realize that I wasn’t going to feel like going out of town after the treatments started. We asked him about seeing a dentist, and after he looked in my mouth he sent me to an oral surgeon that afternoon.
Afternoon at the oral surgeon, not a great day…my insurance didn’t cover dental visits so we would pay for this exam and x-rays. Another really nice, caring doctor, at least I thought so, until he told me he would have to pull all my teeth…This is where I tell you truthfully I hadn’t cried yet, from diagnoses till now, but I finally lost it… I wasn’t sure I could handle this. A horrible scar on my neck and now, no teeth. He went and called the radiation doctor and asked specifically which areas would be radiated, when he came back he said he could remove a minimum of 14. Mike and I discussed it while sitting in his office and decided since weight loss was such an issue it would be harder to keep weight on with no teeth. We decided to go for the 14 extractions and an out patient surgery. As if I was going to be eating steaks once the radiation trashed my mouth and throat!! But what did I know at the time? Next blow, insurance does not feel this is a medical necessity and won’t pay for any part of the surgery. Regroup, we will do it in his office to save money and he will put me to sleep…he was willing to work with us on the bill, too. Another two weeks later, off to the dentist for a thorough teeth cleaning and fluoride trays…unfortunately during treatment the fluoride burned too badly for me to continue to use. Have to put them up for later.
The week after my teeth came out I made a business trip…this was the time to let my boss and my buyer know that I wouldn’t be able to travel for a couple of months. Boy was I a sight, black and blue…and truly ugly. With the lymph nodes removed, there just wasn’t anywhere for any fluids and such to go, so my neck was swollen around the scar. My boss and buyer told me not to worry, just do what I had to do. I looked so bad I thought perhaps they said this just so they wouldn’t have to look at me! No not really, I could not have asked for kinder more considerate people. Both of them just wanted me to do what I had to do to get better. In my work world I was lucky. I have always officed out of my home, and worked using emails and phones. From this perspective, I had it easier than most people going through radiation and continuing to work.
I was really starting to feel sorry for myself around this time. Why did I have to get a cancer you could see? Most people’s surgical scars are hidden under clothes, mine runs from behind my left ear to under my chin. I’ve lost half my teeth and have this big ugly scar on my neck. I just know it’s the first thing people see when they look at me. Oh why me? Then I would decide there really wasn’t anything I could do about it at this point – “so get over it”! became my motto. But these were weird times of knowing it doesn’t do any good to feel sorry for myself, but then wondering why shouldn’t I? I have a right to be! In retrospect, I believe I didn’t fall into this mind-set more often, because if I had shown weakness, I would have made it harder for Mike to handle it all. This is a man that was by my side every minute, of every day, going through this with me. I couldn’t stand to make it tougher on him.
Beginning of radiation – mask day. Not near as bad as I had envisioned, although I did break out in a rash from the hot wet plastic being applied. Here again these people explained everything they were doing, and that helped. When I met with the doctor he told us to get on the Internet and find out information. His big caution was the weight…at a 10% loss of body weight they call in the nutritionist, any more than that it is PEG tube time. The PEG tube sounded terrible to me, and I hated Ensure. I knew I could figure this out though. I had lost about ten pounds (they were extra I gained from quitting smoking) due to the previous surgeries, so I started radiation at 142 pounds. (I am 5’51/2”) He also said that if I were a man he’d just put one in, but since I was a woman he’d give me a chance. Well, that stiffened my resolve. For the next two months we would throw everything out the window we ever knew about eating right…it was eat for the calories time. Potatoes cooked all ways with lots of real butter. And at first Mike made lots of malts. This didn’t work later, but helped at the beginning. And there was scrambled eggs, cream soups, and further along we discovered plain cheesecake. Left on the counter to get to room temperature, I ate everything but the crust, and this was 500 calories a slice!! I continued to drink a lot of water, but toward the end of radiation I had to switch to 7Up, the carbonation helped cut through the mucous buildup when water wouldn’t. Pink magic, a mixture of lidocaine, hydrocortisone, and Maalox was to become my best friend for months… I couldn’t have eaten what I did without this liquid mouth and throat painkiller. They prescribed a morphine patch, but it was too strong for me to tolerate. A humidifier in the bedroom was a great aid to help get a decent nights sleep. (As if I had trouble sleeping while undergoing radiation.) What it really did was help me wake up not feeling as if I slept all night with my mouth open.
I was ready for the radiation fatigue to set in, that’s the first thing people tell you about radiation. (Mike was constantly worried I’d overdo.) But when it finally came, I found out that it was like walking into a brick wall. When you’ve had enough radiation, there isn’t a choice. You sleep and rest. I would say the worst time was the last couple of weeks of treatment. I couldn’t swallow much and had started spitting up some blood…this was really scaring me. I believe if it had not been for Mike hovering, pushing and prodding, I would have given up. It was too much work to get up and walk to the kitchen, so why bother. It just took too much effort for what I got out of it. But Mike was there to take care of things. I know if I had been on my own I just would have quit eating. I finished radiation on January 25, 2002, and shortly thereafter the final pounds fell off. Within a month I was weighing in at 117. I found it amazing that while going through radiation my other normal aches and pains just seemed to vanish. My opinion is that my body was so focused on radiation that it didn’t have time for and an achy back or knee, or even a headache. If you would like to prove this out, next time you have a headache, hit your thumb hard with a hammer…the headache just seems to disappear!!
A month after radiation I had my follow-up appointment with my ENT. He was shocked that I still had some saliva, not concerned about my cold, cold hands and thought I looked really good. He’d see me again in 60 days. He and the radiation oncologist wanted me to alternate every 30 days between the two of them. I made an appointment to get my teeth cleaned and get on with getting new teeth. My jaw is hurting when I open. The hygienist says it's TMJ problems; I'm to use hot washrags to relieve the pain. I also begin to notice that every time I put my head down I get a tingling all the way down my back. Back we go to the radiation oncologist. He says about 5% of the people get this and it’s another side effect of radiation and should go away in a couple of months. That was in March. It still hasn’t resolved, and boy is it annoying. I have decided to live with it rather than go on steroids.
Now I’m through with treatments, and I’m looking for information on the Internet again. This time I have found the OFC website and a whole new world of information has opened up to me. I had already read statistics on the National Cancer Institute site. But statistics aren’t all that is involved in this world of cancer. If you are going to fight this disease you have to ignore the gloom of statistics and realize they are only numbers and cancer is a people disease. I finally found someplace I could learn about my disease and the side affects that are so unique to head and neck cancer patients. I now had the opportunity to ask informed questions and not blindly accept things without question. More than that I find that I am writing on the message boards to help other people just beginning the process I have been through. I find that helping them helps me in a way.
About this same time I decided that I wanted to become the patient of the ENT oncologist who assisted in my surgery. I felt that since oncology was his specialty, he would know more of what to look for in a recurrence. He had my thyroid checked and a baseline CT scan done immediately. He sounded surprised no one had done either (as surprised as one doctor will show when commenting on another’s decision). He explained that the thyroid is sometimes damaged by radiation. We asked him about my mouth not opening and the pain associated with it. He prescribed physical therapy for the “trismus”, which was explained to me as similar to lockjaw, another side effect of radiation. The therapy was helping some, but the insurance ran out at 30 treatments. I currently try and do mouth opening exercises on my own to maintain the little extra space I gained. For the first time in a year, I can almost eat a hamburger if I take off the top bun. Which is all right with me anyway… it’s too much bread for this dry mouth!
When I asked why I did not have chemo, he said he wasn’t sure why the other doctors chose this route, but he felt it might be because it is so hard on patients to do both radiation and chemo, and school is still out on the benefits of doing both. I find it almost laughable that when he had my original ENT copied on the CT scan results, I got a phone call from that doctor’s nurse telling me that the oncologist only assisted in the surgery, and he wasn’t supposed to be my doctor all the time, and I should come back and see them. She sounded apologetic on my recorder for even having to make the call. This from the doctor that didn’t even tell me what stage he classified my cancer, and who missed the tumor on my tonsil. Am I the only one who thinks there is a correlation between medicine and money that supercedes doing what’s best?
O.K. now we fast-forward again…August 2002…I’m feeling pretty good. I’m coming along. Yes, there are after effects, most of them the same everyone has, dry mouth (not as bad as some because they saved a couple of my salivary glands), no spicy foods, they still burn my throat, noodles work, rice doesn’t, a lot of sauces, soups and stews. No cake, and most women sympathize about the fact that I lost my desire for “chocolate.” Yep – it tastes nasty to me. Along with a couple of other things like watermelon and soda water which don’t taste right either. All and all I’m out doing dog sports again, and starting to really feel like my old self. Still going to bed early, but getting better everyday. Feeling incredibly lucky compared to some of the stories I’ve heard and read about. Life is almost back to normal except I’m not putting weight back on.
Everything seems brighter, but a new battle and adventure is about to begin. More in my next series of installments as I learn that everything isn’t over.