Hello! I am a new member tonight, and new to internet forums too! Please excuse any initial goofs!!

First, a little history....Four+ years ago, I was diagnosed with squamous cell cancer in the right jaw bone. After surgery to remove it, and adequate margins of clear cancer-free tissue, I was "watched" carefully but free of any symptoms of cancer. I do not smoke and rarely drink, so I was confused as to how I had gotten the disease but grateful that it hadn't spread and that I seemed okay.
Then in late May 2004, I noticed a sore spot on the right side of my tongue and another on the floor of my mouth. I had a CT scan and biopsy but neither showed cancer. However subsequent surgery proved that my cancer had returned. I was and still am overwhelmed with this news. Today, one month later, I'm being told that I need radiation as well as chemo to increase my odds of survival. I am soooooo scared. And angry. I am surprised at the intensity of this anger - why me, why now, etc....

I was just beginning a new career in real estate and now wonder if I will be able to work as I go through these treatments. I now have a heavy lisp due to removal of a large section of my tongue. Financially I need to bring in some money, but I'm not sure I'll be able to.

Have any of you been able to continue work during chemo/radiation? What books have you read that helped with the initial anger/sadness of coping with this disease? What have you gained as a result of this experience? Obviously I'm looking for words of wisdom and I've found an excellent source!!!

Thanks in advance for being there,
Tassie in Seattle

Tassie,

Welcome to the neighborhood. It is good to know you have had four years without this dreaded disease but very sad to hear you are having to go through all this again. I can understand the intensity of your anger and fear right now. I don't know of any books or anything that can help you cope or even accept your condition. As with any disease like cancer, it is certainly appropriate to be angry and scared. Just like grieving of any type it is important to work through this. Be as angry as you want. Find something to just tear up. Many people have been able to work through treatment. Unfortunately, I made it through the treatment but shortly thereafter things became too difficult for me.

My only words of wisdom are to learn all you can about chemo and radiation. Ask questions of your medical team and do not settle for anything less than what you need to fully understand what your options are as well as what you should expect in the future from the treatment. You have a tough road ahead of you but many have traveled ahead of you. It can be done! Take each day as it comes, wake up each moring grateful for the new day you are being given and take nothing in life for granted. We all are here to support you through this in any way we can.

Ed

Tassie,

Welcome to OCF. I'm sorry to hear what you're going through, especially after having four cancer-free years, but I think you'll find a lot of help here.

Are you being treated at a comprehensive cancer center? Given the fact that you've already had significant surgery and are still looking at further treatment, you want to be sure your medical team is exploring all reasonable options and helping you to understand why they think their recommendations will be the most effective way to proceed. Typically, the comprehensive cancer centers are best equipped to do that.

I'm one of those on this board who continued to work through radiation (I did not have chemo). My work schedule was around 50-75% of a normal workday, and it was certainly no picnic, but the nature of my work was such that I felt I needed to keep at it to the extent I could. You'll find there are others here who were not able to work for awhile due to the effect of radiation/chemo, so it's impossible to generalize.

The problems with speech that you are experiencing are quite common (unfortunately) after surgery and/or radiation. In some cases, they will lessen or disappear over time, as more healing takes place; speech therapy may also help if this persists and is interfering with your work longer-term.

Try to use this site as much as possible to learn more about this illness and about questions you want to ask your medical team to be sure you understand their proposed course of action.

Please stay in touch and feel free to keep asking questions here as well.

Cathy

Hi Tassie,
I had surgery 15 months ago for cancer of my left lower jaw. I had that side of my jaw removed and replaced with the small bone from my leg. Can you tell me more about your first surgery? Did you have radiation with the first surgery?
Also, my doctor told me that the cancer in my jawbone was not caused by smoking, there were no signs of this cancer inside my mouth. Who knows if it's fact but makes sense to me, just some info for you.
Give me some more details so I can see if your cancer was similar to mine.
Take care,
Minnie

Hello Tassie,
Welcome to the club no one wants to join! You will find support, love and advice and our experiences as we traveled this most diffucult path. You are not alone!!!

You shoud call your local social security office and arrange an appointment to apply for SSDI benifits, Most people are rejected the first time but you re-apply right away and it may be granted. It' not much but it is yours if you can't work. You have earned it.

I wish you nothing but the best,

Your new friend, Danny Boy

Hi Tassie, I too worked light duty desk work throughout the radiation treatments. Your speech might be affected some but you should be able to manage and it gets better. If I could imagine a perfect job to have during treatments it might be real estate sales. You have some flexibility in work hours, it usually isn't too physically demanding (as in digging ditches) and you might be able to get the sympathy sale contract (ok so my sense of humor might not be the best)

I was able to drive as well.

Sorry you have to face this again! A good book I found is "Cancer the 50 Essential things to do"

Take care.

Tassie,

My SCC was in the tonsil but I did have radiation and chemo. Radiation was for 7 weeks and the chemo was a one week hospital stay (at U/ WA) every three weeks for 4 months. I continued to work from home through the first 3 weeks of radiation but then grew too tired. Went back to work part time one month after the last chemo. The hardest part that I couldn't overcome was how to get to work -- since driving under pain killers is not a great idea! And then it was fun when I finally did make it back to put up with a feeding tube and taking 45 minutes for lunch to drip through.

Talking after week 4 of radiation is going to be rough, driving while under pain medication is going to be rough. Being in the real estate business you might have to plan on giving yourself a few weeks to heal at the end of your radiation treatment.

What type of chemo will you be receiving?? - Kris

Tassie,

Welcome to our little group, though we wish it were under better circumstances.

The hospital I was treated at had a financial advocate for situations such as yours. They would help with social security, insurance, and other problems. Perhaps your hospital has something similar?

I've heard many good and inspiring things about Lance Armstrong's book. Rather than reading Cancer books, though, I found some funny "chick books" like Diary of a Mad Bride, Something Borrowed, and Bubbles Ablaze. The first one making me laugh, the second one I couldn't put down, and last one being so ridiculous it was entertaining.

As for what I learned from this, the following is an excerpt from one of my friends/family emails:

[referring to bracheytherapy - a form of targeted radiation] "Right afterwards, though, I was crying because I was happy everything was out. I was thanking everyone profusely and, of course, smiling. I

Not to mention that driving under pain medication is illegal. Some people are able to cruise and work but they are a minority. Most of us get pretty beat up from the treatment and it typically takes a month of recovery for every week of radiation. Even if the radiation doesn't wipe you there's always the fatigue factor.

If you are accepted for SSDI there is a 5 month waiting period and the first check comes a month after that.

Tassie,
Welcome to our club. You will find so much helpful information here along with some very caring friends! My hubby had 8 weeks of chemo mix and the max radiation. He was not able to work at all during this time. Depending on the doses...it takes a lot out of you. I drove him everyday and he could not have done it. He was on major narcotics. Again, though, he had max radiation and it wasn't IMRT. I found the book.."Where is God when it hurts" a very good book explaining so much detail about our bodies and the pain mechanisms, etc. Also, we always want to know the "whys", but really we never do and must get on with life w/o knowing now why it happened to us or our family. Have a great support system in place. As a caregiver, the support system (including God for me) was what helped us get through so far. Also, though Dan's radiation treatment is over, we were able to pick up a CD at the hospital today during a checkup all about radiation. We just saw them in a box..and asked to have it. Always ask for anything you can get to help. They don't usually offer, but when we found out from friends and asked, we were able to get so much more help. Apparently, it's all in the asking!
Take care and God bless,
Debbie

Tassie
Welcome
I only had radiation to the tonsil and neck and I was about 75% and worked about 6 hours a day. I got most tired at the last week of 6 and felt the worst the 2 weeks after the radiation ended. Its one of those things you will have to take as it comes and set contingencies for if your to tired to work. I would plant on taking at least the last week of radiation and the 2 weeks after off which is when you be the most tired. Also your skin is quite irritated at this time and may be offensive with your clients.

Tassie, Welcome to our little club. Sorry to see a repeat member, but at least you found us this time and we can help support you through what may be a bit of a difficult time. We all react to things differently, but I was one of the people who worked through the full chemo/rad treatments. I am an outside salesperson and driving is a constant requirement, so I did not take any medication until after work. I worked the full 9 hour day and my cisplatin chemo treatments were administered every three weeks. I arranged them for Thursdays to allow me to recover over the weekend. As it turned out, the rad was a lot worse than the chemo. I fell off the cliff at the end of the 7th week of rad and took two weeks off of work. Fortunately for me, I have worked for the same company the last 10+ years and they were very understanding and supportive. I had vacation and sick leave coming and took it for this little problem. I also drove myself to the treatments each day. So I could not take meds even for that. The skin issue was a little unpleasant to look at as I did have some bleeding, but they gave me some white cream to put on which kept out any germs or infection. You will be in my prayers. I know you can deal with this situation, but prayer works and will hopefully ease your concerns through the coming treatments. Also, as I didn't want to know what was coming, I didn't read anything that had to do with this disease. My wife took care of all of that so I could just focus on getting through it. Thank God for my wife. She was the knowledgeable resource with all of the doctors. As usual, I just went in the direction she pointed me and did what I was told. But at least I got through it. You will, too!

Welcome Tassie

Sorry you will have to go through treatment again. As others have said, the contributors to this board will be of great support to you. Although I was able to drive myself to all my radiation treatments (no strong drugs), I was not able to work because of fatigue. This was a problem because I am self-employed and single but I just had to accept it and concentrate on coping with each day.

Like others, I found the Lance Armstrong book inspiring and a good read. I recommend meditation and visualisation for peace of mind.

Wishing you the best, from Helen with love