Watt, I know how hard it is to admit weakness but here on OCF no one will hold that against you because we've all been there or gone through it with loved ones. I did break down and cry one day and when my wife asked why I said "I don't feel up to this, I'm failing this test". Well, I didn't fail. I'm not particularly strong or macho but I did get through it and am still getting a little better day by day. Meanwhile, I sure hope SDI will help you financially. No one needs that stress on top of it all. But, mostly, take care of you and keep your strength up.

To Eric S and all the above respondents,

Thank you for the insights and words of wisdom. I'm catching the general drift of this; I'm not alone, nobody wants to go through this horrible treatment but we do what we have to do and eventually we reach the other side.

I have never been on a forum before so this has been a refreshing spark and it gives me hope to hear from all of you. I have a loving and supportive wife and two sons one in college and the other starting high school. Both are home for the summer and I am a little worried about them seeing what will happen to me. I like to think of myself as their rock. Perhaps it will bring us all closer.

Eric, thank you for touching on the finances and talking about the things that really matter. My dad died this year on January 13th and he would always say that things will work themselves out. I'm sure it will hold true this time.

Davidcpa, I will ask my doctor tomorrow about HPV testing. Shouldn't they have checked when they did the biopsy?

Thank you everyone and thank you OCF.

Hi Watt,

Most doctors do not test for HPV unless you make the request. Often insurance doesn't cover the cost...so you may end up paying out of pocket if you decide to get the test done.

HPV related cancers are only found in the Base of Tongue and Tonsils...although not all BOT and Tonsil Cancers are HPV+.

What we are learning from posters on this forum is that HPV related cancers seem to respond well to treatment and appear to have less chance of recurrence. If you search on the main page for HPV you can find more scientific data than my general summary.

Some people get their biopsies tested for HPV for peace of mind. I think DavidCPA is un-scientifically adding up the percentages of all the posters who are HPV+. Although, yesterday his math led him to 120% so we don't know how reliable he is. (Just Kidding David!!!!)

I'm sure your facility still has your biopsy sample so if you decide you want to get the testing done, talk to your doctor.

I hope you keep posting...and, we'll keep rooting for you and sending positive thoughts your way.

If your wife needs some support (because it's hard to see someone you love going through a hard time)...encourage her to join the forum too. Or, if that's not her thing let her know that she can email me at mhupe(at)live(dot)net.

My kids were 12 and 13 at the time of my husband's treatment. There is no doubt that it had a huge impact on them. But, I do not think it was all bad. My kids saw their once very active dad laying in bed crying multiple times...they saw me sitting on the porch crying...they saw me and my friends crying. Cancer can really make a person emotional. And, this particular one is tough because I don't think a lot of people understand just how challenging the treatments are.

For one of my daughter's freshman papers this year, she had to write an essay on a life changing event...she picked the summer of treatment as her topic. It was interesting to read her perspective. She felt helpless at times and she wished she had done more for her dad (she did plenty but that is her perspective)...her final take away is that you have to live fully in each day...because you never know what the future may bring. That's not a bad take away.

My kids saw the whole cycle...from the decline to the recovery. I think it has made them more compassionate.

If you or your wife or kids want to learn more about our story, I kept a blog through treatment. I ended it in Oct of 2007...but recently added a picture of Dan from a cruise we were on in April. It's http://dangreivell.blogspot.com/

There really is a light at the end of the tunnel...and, it's not a train. :-)

Margaret,

This is Jeff's (Watt's) wife. Thank you for such a supportive reply and sharing your blog with us. I originally got Jeff started on this forum so he wouldn't be so isolated. It is truly a wonderful supportive sight for both of us and a comfort knowing there are many who have gone this who understand.

You have a lovely family and we are so happy for you both. Your anniversary picture is beautiful!

Jeff is a bit taken a back by what your husband went through and so I'm writing this as he takes it all in. The best advice I have is for him and I to take it one day at a time.
We have a huge supportive community around us ready and more than willing to lend a hand. We don't have to deal with insurance claims as we belong to the Kaiser group and have hit our high deductible in one week!We are going to ask about the HPV testing.

I think Jeff now is ready to let go of work. He does heavy lifting and is the sole owner and worker of a plumbing company.He is not thinking straight and is already worn out.Plus I work part-time and I can't stress enough to him that we will be okay and his job is to heal. We had to cancel our trip to Hawaii so we are focusing on June 2010 as a post vacation treat.
We realized that your time frame on the blog is almost the same as ours. Your children are lovely and it was nice to see how the children lives continued to weave in and out of the several months of treatment.

We have a college student who needs to go back to school in the beginning of August. It would require me to me out of the house for 2 days to travel with him. I'm a bit concerned about Jeff's mental state at this time since it will be 4 days post treatment. I have several close friends and family that could stay with him... not sure...but I need to decide soon for air travel. I guess that is a small dilemma compared to the bigger picture. I know we will get through it... but I'm not the one getting the treatments although I'll be very much part of it.
I'm sure Jeff will now post since he has figured out how to use this forum. I'll post too! I don't know how to do a blog but my son can show me. Right now I'm doing group e-mails each week.

Thanks you again for your invaluable feedback and family disclosure of the treatment process.

Vanessa and Jeff Watt

Geeez make one tiny math error and the world drops down on you!

Hi Watt, Listen to David and Margaret. You will need all your energy and disicpline to beat this enemy. Take care of your self first and the rest will come, by taking care of yourself you will give your body the weapons it needs to win this war! I went back to work full time two weeks after Tx ended and plowed snow for 19 straight hours on the 4th day back! We all heal differently, so let your body work its magic in this war. Keep up the good fight. Semper-Fi Bob

Hi Vanessa and Watt,

I hope my blog didn't scare you. Dan had Erbitux...and, it was later determined that his high fevers and chills were a result of that. Everyone has different experiences.

The one thing most people will tell you is the hardest part is the 2 weeks post treatment. So to answer your question Vanessa, I would not travel 4 days post treatment if there was a way around it. 4 days post, Dan was not able to drive, and he was not making good decisions (due to the pain meds). He got really dehydrated and had to go (unwillingly) to the hospital for hydration. Eventually I was able to coordinate home health care IV hydration through my insurance company.

If you do have to travel, I'd have someone stay with Watt if he is on a lot of pain medication.

Bob sounds like he faired better than Dan if he was working a 19 hour day 2 weeks after treatment. ROCK ON, BOB! But, most will tell you that the hardest part is actually post treatment...about one to two weeks after the treatment...and, then things start to improve.

Just so you know...Dan wouldn't have been out of work for as long as he was if he had any say in it. The company he worked for was hq'd in Switzerland. I think there were issues in the translation of the form the doctor needed to sign to release Dan back to work. All of the questions asked were followed by "for 8 hours straight." So, for instance...is the patient able to hold 30 pounds over their head for 8 HOURS STRAIGHT? Our doctors and nurses tried to reason with the form originator...but, it was a long process.

So, the fact that you are self employed will allow you to return to work at a pace that is comfortable to you. Don't use Dan's timeframe as a guide. For most people it will likely be somewhere between Bob's experience and Dan's.

Watt, do you have a feeding tube and/or port? I think if Dan had a feeding tube he would have had a little bit easier time. Swallowing got tough in the last few weeks.

Vanessa, I found the blog to be very therapeutic. I started it up because I was getting tired of spending the little free time I had conveying information to worried relatives. It ended up being a family project with the kids...they were my editorial advisory staff and they'd often remind me that something they conveyed to me was "blog worthy." And, they also enjoyed deciding on which photos we would display. When they were away visiting relatives, they'd check the blog daily to see what I posted. It's really easy...I had never blogged before. If you need any help, let me know.

Vanessa, Watt...please stay in touch. If you have any questions, we're a friendly bunch and we'll do our best to answer them.

Jeff,

Real men do cry and they even eat quiche. What you are going through is something I wouldn't wish on my worst enemy (well maybe one of them).

We are all pulling for you and a caring wife like Vanessa, both of you will surely find the strength it takes to get through this and get back to work.

David,

No excuses...you making a math error is almost as bad as me extracting the wrong tooth. (That has never happened).

Jerry

Dear Margaret,

Jeff here checking the forum and happy to hear from you. Vanessa is working for two more hours but I'm sure she will write you when she gets home. Yes, the blog on Dan did scare me a little. He went through so much. I think I would rather be tortured by Jack Bauer from 24 or beat to within an inch of my life by Tony Soprano's mob. Just get it over with.

Radiation treatment 5 today and met with my doctor (28 more to go, good Lord!). He's found sores developing in my mouth already so I've started gargling with salt water and baking soda solution. Loosing my voice. He was able to get me an appointment with a behavioral psychologist who works only with cancer patients, tomorrow, through our hospital. I'm not sure what I will say but I'm guessing the words will come easy once I get started.

The PEG feeding tube is the biggest topic of discussion between me and my medical team. The choice is mine to make and I have been reassured that it can be inserted if and when necessary. My doctor is confident that the degenerative effects from radiation treatment will come on slowly, monitored day by day, which will allow us to do the procedure before we reach a critical point. I'm sinewy for a plumber so he doesn't want to allow more than 10 lbs weight loss before the last treatment (one can dream).

Time to rest but first I think I will hold 30lbs over my head for 8 hours straight.

Best regards, Jeff

Jerry,

Thank you for your kind words and I love the quote.

Jeff