Remission

Technically, I'm in remission. However, I still need to be followed closely in case this nasty disease comes back. With most cancer you're considered cured after five years, but ACC is a slow growing cancer that usually shows up again ten or more years down the road. Last week I had some follow up appointments-one with my radiation oncologist, one with a new ENT. I had a CT scan and a chest x-ray to check for recurrence at the original sight and metastasis to the lungs. My life has been so busy lately I haven't had time to worry about cancer. We're having the basement finished, my husband is preparing for an out of town conference in November, it's our 10th anniversary this week, and then there's just normal life! Although I am pretty sure that I am not done dealing with this cancer, I don't feel like it will be back any time soon. Right now I'm experiencing some late side effects of radiation treatment-jaw pain, reduced mouth opening, etc. I'm moving forward with some consultations with doctors and a physical therapist and I intend to take an aggressive treatment course in order to deal with it quickly and permanently.

Skin

I wasn't sure if I should post pictures of my skin because it's pretty gross, but the after picture looks SO much better that I decided to go ahead. Throughout treatment it looked fine. It got redder and redder as the weeks went by. It was warm to the touch but it didn't hurt. The final week of treatment, however, it started to change. It was crusty and oozy and sore and tight. I looked it up and it's called a "moist reaction." I was given some cream with silver in it to put on my skin for soothing and drying. I also used an astringent solution that I used 4 or more times a day. Finally, last Friday, I was able to peel some dried skin off to find nice, pink, healthy skin underneath. And it's just gotten better from there. There's really just one spot, along my scar, that's still moist. I'm buying all sorts of sun hats to protect this new skin from the sun this summer. On a positive note, the doctor mentioned that the skin reaction was a good sign that near the surface of the skin, where the tumor margins were, got a significant dose of radiation. It kind of reminds me of the first months of pregnancy. If you feel sick that's good because it means your hormone levels are high!

Before

May 19th, 2010

Five days after final radiation treatment

After

May 23, 2010

Nine days after final radiation treatment

Upswing

I'm starting to feel a bit better today. Not normal yet, but not horrible anymore. I have thrush on my tongue and throat, so now I'm taking Diflucan. I did some normal stuff today: walked around the block, went outside with Bode, made the kids supper, and painted my nails.

All Done

I had my last treatment today. I'm glad it's over! I've lost 20 pounds, the skin on my neck is all crusty and gross, I can barely swallow, but I'm done. It can only get better from here.

Side Effects

I started to feel some side effects about 2 weeks after I started treatment. It really shook me up for awhile. They told me I would feel perfectly fine for at least 3 weeks! My mouth was tasting weird and my throat was a little sore. I know, it sounds minor, but my fear was that this was just the start. I was sure that every treatment day after that I would feel worse. I couldn't imagine how my throat would feel after 4 more weeks of treatment. I didn't really enjoy our out of town water park trip and I was feeling pretty low. I am happy to say that things didn't get incrementally worse every day, as I had expected. It's more of an up and down, one step forward two steps back kind of thing. I got some medicine for seasonal allergies, which helped because now I don't have so much stuff draining down the back of my throat. Now I'm in week 5, only 9 treatments left! My throat is more swollen than sore, although it does hurt. I have some weapons at my disposal: ibuprofen (which I now have to take in liquid form) to help with the pain and swelling, baking soda and salt water rinse to help with the bad taste in my mouth, mouthwash to help with dry mouth, and a mixture they call The Recipe that is Benadryl, Lidocaine, and Maalox to numb my throat and help with the swelling. I can't eat very much right now. Because of the swelling in my throat my choices are limited to soft and mushy. Because of the inflammation in my throat my choices are limited to mild foods-nothing acidic, or spicy, or fizzy (a sip of soda is excruciating). So I'm basically eating a tablespoon at a time of Fluffy Tapioca Cream, yogurt, soup, or refried beans thinned with sour cream. I'm losing weight and it's very hard not to be happy about that :) I'm just hoping I haven't lost too much strength and stamina. When this whole thing is over, I plan to do a lot of biking, canoeing, and general outdoor fun with my family. So here's the bottom line: Some days, or even parts of days, are bad, some are not so bad. I'm making it through and I'm almost done. What else could I ask for?

Ambivilence

The thing about radiation treatment is that it's both no big deal and really scary at the same time. Every morning I go to the treatment center. The receptionists greet me by name, I walk back to the waiting area, sit down for maybe a minute before my name is called. I chat with the girls, put my mouth guard in, and get situated on the table. They make adjustments, turn the machine on for a minute, then make more adjustments and turn it on again. I get up, rinse out my mouth guard, say goodbye, and head to Starbuck's. Simple. Except if I think about what's really going on. I am purposely exposing my body to radiation. I am allowing healthy cells to be damaged. I do not know when I may start having side effects, so any little tickle in my throat or feeling of tiredness brings anxiety. Is this it? Will I start feeling worse from this point forward? I can usually rationalize to myself: a little uncomfortableness now, even pain, may add years to my life. That upset stomach and tired feeling is probably just a virus. If I do have side effects, I will manage them as they come along and not fret about them before I have to. So I give myself a little shake, look at my wonderful family for strength, and keep moving.

Late!

Everything would have been fine today, except for the beltline. It wasn't moving. At all. I was fifteen minutes late for my appointment, but it went quickly in spite of that. I made my Starbuck's stop and headed back home to enjoy two 2-year-olds playing in my living room.

Some pictures

Scar? What scar? (It's on my right side) My surgeon did a great job with my incision. It's in a crease in my neck and the shadow from my jaw.

Here's what my neck and jaw look like today. We'll see how it changes as my treatment continues.

First treatment

I went for my first treatment today. It took about an hour because they did some imaging and adjusting to make sure everything was aimed exactly as it should be. The technicians, nurses, and doctors at Turville Bay are all so great. They explain and reassure as second nature. A little hand on the arm can go a long way. The nurse gave me some lotion that they recommend. Did you know some lotions have metal in them? That's not so good for radiation treatment! My next appointment should be shorter. Soon it will just be routine.

My Diagnosis

About 10 years ago I noticed a swollen gland in my neck that didn't go away. I mentioned it to my doctor and she sent me to a surgeon (I don't remember what kind). He examined me and said if I was his wife or daughter he would recommend that I just leave it alone, so I did. It never bothered me much and didn't seem to get much bigger. This past year my doctor commented on it as did my dentist so I figured I should have it looked at again. I went to an ENT, he ordered a CT scan and said there was a mass on my salivary gland (submandibular). He did a needle biopsy which didn't show malignancy, but he recommended we remove the gland anyway. So in February I had surgery and had it removed. When I went for my post-op appointment I was very surprised to hear that the mass on my gland was cancer, specifically Adenoid Cystic Carcinoma. This is a rare, slow growing, persistent cancer. It travels along the nerves. The surgeon had the pathologist look at me while I was still in surgery and they both agreed that it had not invaded any of the nerves they could see. This cancer does not respond to chemotherapy, so that is not an option. I'm kind of relieved by that because the side effects of chemo are very scary to me. The standard of care is removal (check) and radiation. My surgeon "passed me off" to a radiation oncologist named Dr. Teng at Turville Bay here in Madison. He has been great. He looked at my neck CT and talked to my ENT and the pathologist. He sent me for blood tests, a dermatology check up (I have lots of moles and he wanted to be sure none were malignant, which could be made worse by background radiation), a dental check up, a chest CT, and a thyroid ultrasound. ACC tends to metastasize to the nerves and the lungs. By visual examination, the nerves in my neck are clear. By CT, my lungs are clear. So, I will start radiation treatment on Monday, the day after Easter, which seems poetic somehow. The treatment will be 5 days a week for six weeks.

Am I scared? Sometimes, but mostly not. I think part of the reason I'm somewhat calm about it all is because they took it out. The tumor is in a jar somewhere, or in the garbage maybe. The radiation treatment is basically a precaution. Just in case there are some little cancer cells lurking around. I have no illusions about this being the end of it. I'll have to get checked for the rest of my life and it will probably come back sometime in the future, but that's not now. Sufficient unto the day . . . For now, this is not going to kill me. It' s going to be an inconvenience and a test, but with the support of wonderful friends and family, we will all make it through.