Wednesday, November 21, 2012

The Best Possible Words

Sorry I haven't posted in a while. I guess the good news is that I've completely adjusted to my new normal and life goes on.
The BIG NEWS is that my radiation oncologist said some very special words to me. She said that she believes I am disease free! Massive weight lifted, big sigh of relief...
Just to remind me that getting old is not for sissies, I had a scare recently. I woke up and felt my right eye drooping and I couldn't keep water in my mouth. I thought I was having a stroke. Bonnie took me to the emergency room and luckily the doctor said I wasn't having a stroke. I had Bell's Palsy, which she was very sure of since she had had it herself. For some reason, probably a viral infection, the facial nerve on one side gets inflamed and shuts down. She told me that it would get worse for 48 hours and then it would probably get better. The getting better could take 2 weeks to start or 2 years and she was guessing earlier rather than later since my symptoms seemed mild. This was good news since the probability of near complete or complete recovery was higher if the recoverys started sooner.
So off I went on a 2 week business trip to France with my eye goop (a mix of mineral oil and petroleum jelly) to keep my eye from drying out at night since I couldn't completely close my eye, my black pirate eye patch and some drugs to assist in my recovery. They say everything is relative and in this case it's true; after my cancer journey this just didn't seem like a big deal. Talking funny and having trouble eating and drinking just wasn't that bad and it was probably temporary to boot.
So far I've recovered about 95%. I still have problems getting soap in my eye in the shower and my smile is still a bit asmymmetric but the important thing is my cancer seems to be gone and for that I'm very very thankful.

Sunday, January 1, 2012

Welcoming a New Year

Bonnie and I spent last night with our long time gourmet group. The dinner and festivities hosted by Jim and Kristie have become a wonderful tradition for our group. It was great spending the evening with friends and having such superb food and wine.
There's been a lot going on since my last report. In September Bonnie and I went to Germany to pick up my new BMW Z4. The unveiling at the BMW Welt outside Munich was incredible. After spending over half a day having her presented to us, touring their museum, doing a plant tour and snacking in their luxurious lounge, we took off for Fussen and Neuschwanstein, which was the inspiration for the Disneyland castle. We stayed at a little chalet on an Alpine lake. We had toured the castle years ago but I wanted to hike to a bridge and waterfalls above the castle that I hadn't done the last time. After that we drove through the Austrian Alps on the Grossglockner Hochalpinestrasse (high alpine road) to the tiny village of Heiligenblut. On the way the temperature got down to 46F and we had the top down but Bonnie asked me to turn down the heat because she was roasting. The Z4 is really set up for top down enjoyment with a heavy duty heater and seat heating in the seat and back.
Next we drove to Vienna where my college roommate is working for the International Atomic Energy Agency. After spending 3 days catching up and touring Vienna, we drove along the Danube to the charming little village of Chesky Krumlov in the Czech Republic. The highlight of the week long driving trip was right at the end. As we were approaching Munich on our last night before Bonnie went home and we turned the car in for shipment to the US, I told Bonnie that my only regret was that I hadn't been able to drive on the unrestricted section of the autobahn after the break in period (kept under 4500rpm and 100mph for the first 1200 miles). She asked me how much longer we needed to drive to complete the break-in period and I told her about 2 hours. She said, "Let's forget planning a nice farewell dinner in Munich and just grab a bite at a McDonalds we saw and get back on the autobahn and get it done!" What a gal.
Well 2 hours later I found a big gap in traffic and as the odometer clicked over to 1200 miles I let her loose. Man those German roads are great. My new baby topped out at 157mph and it was smooth as glass. I didn't stay there too long as we were rapidly gaining on the pack ahead of us; just long enough for Bonnie to get a photo of the speedometer.
Since I had decided to go all out on the car purchase I didn't have them ship it home but had it sent to the BMW Performance Center in South Carolina. From there Vince our neighbor and I drove her home. The highlights of that trip were a visit to the NASCAR Hall of Fame in Charlotte, a drive on the Blue Ridge Parkway with the top down at sunset and the temperature approaching freezing, driving the 318 turns over 11 miles of the "Tail of the Dragon" near the Smokey Mountains all in 2nd gear, spending a couple days in New Orleans and San Antonio, touring the Carlsbad Caverns, driving through the Mohave Desert and arriving home with just over 5000 miles after only 14 days of actual driving. It's a very comfortable car.
We had a wonderful holiday season. Both the girls were home from college and we had the biggest tree ever. My sisters and their families came to visit between the holidays which kept us busy showing them around and cooking for 15. It was fantastic seeing everyone together.
Hard to believe it's been a little over 3 years since I was first diagnosed. I get another MRI on January 3rd and expect to see both my doctors before mid-February. My new normal has stabilized and I'm at peace with that most of the time. The holidays have been just an additional reminder to enjoy life, family and friends. Carpe diem and drive with the top down!!

Monday, August 22, 2011

Two Steps Forward and One Step Back

It seems like this is a recurring theme. I had two oncologist exams recently. In June I met with Dr. Fong at Kaiser and had my usual physical exam and had my throat scoped. In August I met with Dr. Yom at UCSF and had another physical and bloodwork done. The verdict for both exams were the same: no sign of the cancer returning. The probabilities of it returning now are pretty low but statistics don't really apply to a sample size of one so although the numbers are comforting, the doctors will never pronounce me cured. That's OK. I'll take what I've got.
The one step back was my dental checkup. I get my teeth cleaned and examined every 4 months. I brush at least 3 times a day, at least once with a prescription level fluoride and I floss at least once a day. My dental cleaning is almost no scraping since I have very little plaque. My appointment in August found a dangerous crack forming on a premolar in the most irradiated section of my lower jaw and 4 caries underneath 4 fillings. So over the next month I'll get a new crown and 4 new fillings.
I did ask Dr. Yom if the danger of oesteoradionecrosis from tooth extractions will ever go away and she said no. The lack of sufficient saliva in my mouth means that acid foods do significant damage to my teeth and the bacteria that cause tooth decay thrive. So now I'm on a new more intensive dental protection regime. I have special basic toothpaste and a mouth rinse which contains sodium hydroxide and the active ingredient in bleach; I kid you not. My dentist wants the pH in my mouth to move from slightly acidic to fairly basic. So I now brush after I eat or drink anything but water and rinse twice a day with my basic bleach concoction. Unfortunately, despite some mint flavoring it tastes and smells like bleach.
Oh well it beats the alternative!
On the home front Dash and I are batching it this week as the ladies are back east visiting Bonnie's mom and dropping Carolyn off at college. It certainly is quiet.

Monday, May 16, 2011

Thumbs Up at Two Years

Last week I had my two years since end of treatment exam. This one is a big one, since a clean exam at two years pumps up the probability of longer term survival significantly. Dr. Fong did a very thorough job of checking me out along with the usual probe through the nose and everything looks great!
I told Bonnie earlier that if I passed this one I was going to buy a new sports car. This is no mid-life crisis. It's a life celebration. Plus the family sedan I drive is now 19 years old. It's still running fine and I plan to keep it but I'm going to go for something a bit more fun!
I took Bonnie out to look at the models I was considering and to discuss colors. When I told her that had narrowed it down to 2 models and each had its attractions. She said, "Well in that case, you should buy both of them." What a gal. We had a laugh later when our good friend and neighbor, Vince, said the exact same thing two days later!
I'm not done with exams. I have 2 more in August; one at Kaiser and one at UCSF. Actually I look forward to them and I would be very disappointed if Dr. Fong didn't stick that probe down my nose. It's something that not everyone would understand I guess.
Bye bye for now. Stay well. Have fun. Play nice.

Friday, December 24, 2010

An Early Christmas Present

As the title says I got an early Christmas present. Within the last week I've had a physical with Dr. Fong, a chest X-ray, an MRI and various bloodwork done. All have come back clean! Dr. Fong said that if I can stay clean through to my 2 year anniversary in April then the probability of recurrence drops considerably. So I'm keeping my fingers crossed.
The family is waiting for Santa and then on the 26th we fly back to Massachusetts to spend a few days with my sisters and their families.
Carolyn got some good news recently. She applied to Bryn Mawr for early admission and was accepted. No early retirement for sure now! ;-)
Well that's all for now. I wanted to share the good news but now I need to get to bed so Santa can visit us.
Thanks everyone for all your support. We have appreciated it. Enjoy the holiday season and have a great New Year!

Monday, November 8, 2010

One and a half down - Halfway to three

Sorry for the long time between posts. The good news is I was recently examined by both doctors and everything still looks clean. The anxiety level for these visits continues to decrease. I even have a new bone extrusion and I haven't set up an appointment with my oral surgeon because I expect this one to be uneventful like the last 4 or 5.
So I'm pretty well adjusted to the new normal. I've returned to my usual busy travel schedule at work and have been reffing more challenging matches. Yesterday I had a fairly physical boys match in the pouring rain and I've been doing high school as well as club matches.
I continue to assist newly diagnosed cancer patients before, during and after treatment and find that very satisfying. The support I received during my tough times made a great difference to me so it's nice to be able to pay them back in this indirect way. Goodbye for now. Carpe diem.

Wednesday, May 12, 2010

One Down - Two to Go

First of all, I apologize for neglecting to update this sooner. I only have 2 excuses. First, I have been waiting for the outcome of my one-year-from-end-of-treatment exams. Second, I have been busy enjoying my approach to 100% of my new normal.

Now the news - I recently was examined by Drs. Yom and Fong, had an MRI to check for visible tumors in the original sites and possible metathesis to the brain, had a chest x-ray to check for metathesis to the lungs and bloodwork to check for radiation damage to my thyroid. They all came back clean, so after 1 year there is no sign of cancer!

I now have 2 more years before the probability of recurrence of the original cancer becomes improbable. The first year is really focused on making sure that the tumors we knew about have been eradicated at the macro level - that is, there are no visible (to the eye, MRI and x-ray) or palpable lumps.

The next two years will be looking for new growths that could come from individual cancer cells that survived either by being tough enough to live through the chemo-radiation or were lucky enough to have moved out of the planned radiation pathways before we started treatment and so only had to deal with the chemo which isn't nearly as effective on its own.

There have been a few continuing challenges since my last update. After my initial jawbone emersion sloughed off like an old scab, I had two more emerge a week later. They hung around for a few weeks and then a new differently shaped one appeared. The first 3 were flat and somewhat circular and were even with my gum tissue. The fourth one was like a small spear. It would rub against my tongue whenever my tongue moved. I now realize how much a tongue normally moves during talking, eating and drinking. There were probably some folks who didn't see limitations to my talking as a problem. ;-) But the spear lasted for weeks and I couldn't eat longer that 10-15 minutes without needing to stop because it just hurt too much. This put a real crimp in my plans to gain weight and in fact I lost a few pounds. The good news is that my oral surgeon finally judged it dead and ready to be peeled off and I haven't had another one emerge for the last 2 months.

Since the last report I've gained 10 pounds (mostly from pigging out on confit in France). I am now at the same weight I was as a college freshman! I know most of my readers wish that were true for them but I don't recommend my diet plan regardless of its effectiveness. ;-)

My other big change in my life is that after more than 20 years as a Team Leader for Oronite I decided to step down and return to being just a research guy again. I've always liked the R&D part of the job most and over the last few years the bureaucratic parts of the job started to exceed the fun research parts. My cancer gave me an opportunity to reevaluate my priorities and my company gave me the opportunity to act on them. So far I've enjoy the job more although I'm busier than ever from picking up new projects and not shedding much from the old job yet. I expect that will continue for a while especially since I keep finding new interesting things to add to my portfolio.

The job change is just part of my new normal. I accept that I'll never get back to my old normal but regretting that is counterproductive to enjoying the 2nd chance my doctors, wife and supporters have given me.

I can't drink as much wine as I once could but I am starting to be able to enjoy a glass of wine with dinner.

I don't have nearly as much saliva but I have far more than I did 8 months ago. If I forget to take water with me to a meeting or when I run an errand it's no longer a disaster; it's not even a problem.

I can't eat some of my favorite foods because they are far too spicy for me now but there are plenty of foods left that I enjoy - hint: there isn't much spicy food served in France!

I have to brush and floss my teeth far more frequently now but my teeth cleaning appointments with the dentist are much shorter than previously.

I still haven't rebuilt enough muscle and endurance to ref young adult soccer matches but I am reffing younger kids games on a regular basis and I appreciate it and love it more than ever after thinking that maybe it was taken from me forever.

I have to wear a mouth guard while I sleep and I have to put gel in my mouth before I go to bed to avoid needing to wake up frequently to drink but I still get to wake up looking at my beautiful wife!

Bottom line - although I eagerly anticipate further improvements in my side effects, I am satisfied with my life and grateful for what I have.

One Down - Two to Go!!!