Well 10 years after the end of treatment is often quoted as the accepted date for saying that the treated cancer is gone for good. Unfortunately the radiation side-effects will never go away and a different cancer could develop, but I'll take the good news for now.
My oncologist told me 5 years ago that if I was diagnosed today I'd have surgery rather than chemo-radiation. That would have made the aftermath so much nicer. But, of course, If I had waited I'd have died. All the dental stuff is just part of the new normal now, including living with my infected cracked tooth.
Other than the dental stuff and the osteoradionecrosis "sword of Damocles" hanging over my head, life is back to normal. Carpe diem my friends!
Thursday, April 4, 2019
Last treatment tomorrow!
Finally, it's here...the end of the beginning. Tomorrow (Friday, April 3) is Todd's last day of radiation. Today, since the kids were out of school, they went with us to UCSF. They got to see the basement waiting room with the depressing little dark painted "boxes" on the wall (done by the "Art for Recovery" group, so that's how they were feeling.
Good News Day
So many people to thank this week: Glen for driving on Monday, Roni on Wednesday, and Ken the afternoon shift on Friday. Plus, Chris' wonderful chicken dish on Tuesday and Christie and Jim's stuffed shells on Thursday (and Peg's brownie and tulips!)
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.
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!!
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.
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!
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.
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!!!
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!!!
Wednesday, December 9, 2009
Thanksgiving and Whack-A-Mole
A strange title for another month of ups and downs. Thanksgiving week was an exciting time for the Brookharts. Bonnie and Carolyn flew home Tuesday night from their college hunting trip. They left Thursday for Boston where they visited at least 6 colleges over 4 days as well as spending 2 nights with my sister, Amy. They then flew through Chicago (where Carolyn and Bonnie's bad luck with O'Hare continued) to Iowa where they visited Grinnell. Evidently the trip was a success since Carolyn saw a couple of schools that she really liked. Unfortunately the ones that she likes are very selective so despite her excellent grades acceptance is not assured.
Wednesday night Lauren came home from U of Oregon for Thanksgiving and there was much rejoicing (especially by Devin, her boyfriend).
After such a challenging year I was a bit surprised to find that after thinking about the theme of Thanksgiving that I had so much to be thankful for: Bonnie, my doctors, especially Drs. Yom and Fong, Glen, Tom, Vince & Mary, my sisters, my friends, my collegues, refereeing and my recovery thus far. We had a wonderful meal at our house with our friends the McGoverns and Lauren's boyfriend.
I've been making steady progress toward normal work duty. The second week of November I made my first business trip since my diagnosis. I started off visiting my good friends John & Colleen D. along with Vince and John F. John and Colleen changed their vacation destination last April to California to include a visit to me during some of my darkest days. It was really nice to return the favor. It was even better to see John doing significantly better than the last time I saw him. He has persevered and is still improving years after his second stroke. He is an inspiration to a lot of folks, including me. The technical part of the meetings went well and I really enjoyed interacting with my friends at ExxonMobil. I was a little tired after a long week on the road, but I felt ready to attempt an overseas trip. Thus, the week after Thanksgiving I was off to Rotterdam.
Again, it was a bit more tiring than previous visits but it went well enough. It was especially nice seeing my R&D group again on their turf. As a special treat we had dinner with Dick and Trudi. Dick retired earlier this year after over 30 years with Chevron, most of them in the Marine division. Dick and I worked closely together with ExxonMobil for the 10 years I've been in Marine and it was a relationship I thoroughly enjoyed, both professionally and personally.
The FDA finally approved the use of the gardasil vaccine for boys. It's the vaccine that protects against the HPV viruses most likely to cause various cancers; cervical in women, penile in men, anal, and squamous cell like Tom, Glen and I have had. So finally I was able to start the vaccine series of 3 shots over 6 months for Dashiell. (The girls were vaccinated before I was diagnosed.) I fought Kaiser to vaccinate Dash before the FDA approval was granted but wasn't making a whole lot of progress. Hopefully this will eliminate the chance that he has to go through what I have gone through.
The road to recovery continues to be two steps forward and one step back. The whack-a-mole reference alludes to my view of the last couple months where I no sooner resolve one health challenge than a new one (or a previous one I thought resolved) emerges. My latest challenge is dental. I have developed what the doctors and dentists refer to as a bone emersion near the site of the tooth I had extracted in August. The flesh in my mouth near the back of my jawbone has receeded so that a small part of my jawbone has appeared. I've been told by 2 of my dentists that is does happen to some folks who have a tooth removed even if they didn't have radiation therapy. That's somewhat comforting but the truth is that if the bone gets infected it could degrade into the dreaded osteoradionecrosis that I was worried about when I first had the tooth removed. I thought that threat was gone but not quite. The best prognosis is that the flesh will grow back behind the exposed bone and ultimately the exposed part will be able to be peeled away like an old scab. My oral surgeon is taking a conservative approach to avoid disturbing the natural process. A small piece of bone flaked away yesterday but the area exposed stayed the same as before. It had about tripled in size over the last 3 weeks. I wonder what will be the next challenge after this one is resolved?
This Friday will be the one year anniversary of my diagnosis. What a year! This Christmas should be quite a bit better than last year.
Wednesday night Lauren came home from U of Oregon for Thanksgiving and there was much rejoicing (especially by Devin, her boyfriend).
After such a challenging year I was a bit surprised to find that after thinking about the theme of Thanksgiving that I had so much to be thankful for: Bonnie, my doctors, especially Drs. Yom and Fong, Glen, Tom, Vince & Mary, my sisters, my friends, my collegues, refereeing and my recovery thus far. We had a wonderful meal at our house with our friends the McGoverns and Lauren's boyfriend.
I've been making steady progress toward normal work duty. The second week of November I made my first business trip since my diagnosis. I started off visiting my good friends John & Colleen D. along with Vince and John F. John and Colleen changed their vacation destination last April to California to include a visit to me during some of my darkest days. It was really nice to return the favor. It was even better to see John doing significantly better than the last time I saw him. He has persevered and is still improving years after his second stroke. He is an inspiration to a lot of folks, including me. The technical part of the meetings went well and I really enjoyed interacting with my friends at ExxonMobil. I was a little tired after a long week on the road, but I felt ready to attempt an overseas trip. Thus, the week after Thanksgiving I was off to Rotterdam.
Again, it was a bit more tiring than previous visits but it went well enough. It was especially nice seeing my R&D group again on their turf. As a special treat we had dinner with Dick and Trudi. Dick retired earlier this year after over 30 years with Chevron, most of them in the Marine division. Dick and I worked closely together with ExxonMobil for the 10 years I've been in Marine and it was a relationship I thoroughly enjoyed, both professionally and personally.
The FDA finally approved the use of the gardasil vaccine for boys. It's the vaccine that protects against the HPV viruses most likely to cause various cancers; cervical in women, penile in men, anal, and squamous cell like Tom, Glen and I have had. So finally I was able to start the vaccine series of 3 shots over 6 months for Dashiell. (The girls were vaccinated before I was diagnosed.) I fought Kaiser to vaccinate Dash before the FDA approval was granted but wasn't making a whole lot of progress. Hopefully this will eliminate the chance that he has to go through what I have gone through.
The road to recovery continues to be two steps forward and one step back. The whack-a-mole reference alludes to my view of the last couple months where I no sooner resolve one health challenge than a new one (or a previous one I thought resolved) emerges. My latest challenge is dental. I have developed what the doctors and dentists refer to as a bone emersion near the site of the tooth I had extracted in August. The flesh in my mouth near the back of my jawbone has receeded so that a small part of my jawbone has appeared. I've been told by 2 of my dentists that is does happen to some folks who have a tooth removed even if they didn't have radiation therapy. That's somewhat comforting but the truth is that if the bone gets infected it could degrade into the dreaded osteoradionecrosis that I was worried about when I first had the tooth removed. I thought that threat was gone but not quite. The best prognosis is that the flesh will grow back behind the exposed bone and ultimately the exposed part will be able to be peeled away like an old scab. My oral surgeon is taking a conservative approach to avoid disturbing the natural process. A small piece of bone flaked away yesterday but the area exposed stayed the same as before. It had about tripled in size over the last 3 weeks. I wonder what will be the next challenge after this one is resolved?
This Friday will be the one year anniversary of my diagnosis. What a year! This Christmas should be quite a bit better than last year.
Saturday, October 17, 2009
A Forget-Me-Not From the Big C
The last update accurately reflected by mood after finally getting off all of my drugs. I felt great. My life wasn't back to normal but it was making steady progress. My main focus was improving my quality of life. The most significant effort at that was signing up for the acupuncture clinical trial.
On the morning of September 19th I came crashing back down to earth. Eerily reminiscent of when I first found my cancer, I was putting sunscreen on my neck prior to reffing a soccer match and noticed the area on the left side of my Adam's apple was larger than the right. My heart sank. Five months after treatment seemed like the most likely time for recurrence. I had visions of surgery; losing my larynx, my voice; of the cancer being untreatable this time. I emailed both my doctors. The weekend went by in a haze. I felt like an actor in a play; the outcome preordained. I felt powerless to change it.
My doctors came to the rescue, again!
Dr. Fong emailed me Monday morning that he would squeeze me in between appointments Monday afternoon. Dr. Yom arrived at the start of my acupuncture appointment on Monday morning at UCSF and did a thorough physical exam. I was incredibly relieved when she told me that she thought it was nothing to worry about but that I should get a needle biopsy just to be sure. I told her that I was seeing Dr. Fong in the afternoon and I would pursue it with him. Dr. Fong agreed that it was very unlikely this was cancer. He felt it was probably a collection of lymphatic fluid that had nowhere to go due to the destruction the radiation had inflicted on the lymphatic system in my neck. Before he did a needle biopsy he wanted to get an undisturbed MRI image to examine. The MRI appointment was set for Sunday.
I was so relieved to hear both of my doctors agreeing that the swelling was unlikely to be cancer. And just in time, because on Wednesday Bonnie and I would drive our firstborn up to Oregon for her freshman year of college. As expected, it was a bittersweet experience. We were so proud of our mature young lady leaving the nest, but we knew that this was the most significant step on her road to independence and that our life with her would never be the same. Luckily we were so busy getting her moved in on Thursday and tracking down last minute stuff for her that the time went quickly. That evening we had a nice dinner with her roommate Ariana's parents who live around the corner from us in the Knolls.
Glen, my guide through all this, was also up at UO dropping off his sophomore son. We were to have a quiet breakfast on Friday morning with him and his wife, but the kids got wind of this and our party of four swelled to ten, including Ari and her parents! It was a wonderful way to say goodbye and I did get some time to bring Glen up to date and compare notes.
On the way home, Bonnie and I stopped for the night in Ashland, home of the Shakespeare festival, and took in another play, Henry VIII. Our seats were great and we both really enjoyed the performance. We returned home on Saturday around 4 pm. On Sunday I had an uneventful MRI and then impatiently waited for the results. I figured I'd hear late Wednesday or Thursday.
It was a busy week due to our Global Marine Meeting at work. For the first time since my diagnosis I was able to see my team from Rotterdam and the rest of the overseas Marine team. I really like my job and the relationship I have with the team is a significant part of that. After all I've been through this year, I value our friendships even more. It was wonderful seeing them and interacting with the group just like before. The moments of normalcy were almost intoxicating!
As an aside, I know some of my imagery through this blog sounds a bit over-the-top, but to me it sometimes feels akin to describing color to the blind. There are times, not all the time mind you, but there are times when the sensory/emotional input seems more intense than before. The color and scent of a rose are more intense, like I am squeezing all the color and all the scent out because I know in my bones that life is short.
It was a busy busy week with a business dinner on Tuesday where I met some additional old friends from work that I hadn't seen in over a year and two more dinners on Wednesday and Thursday. I had UCSF appointments on Thursday and Friday, reffing Saturday and Sunday and a Quakes game with Tom on Saturday night! I was tired after all that but my weight stayed above 150 and best of all I got the perfect email from Dr. Fong Wednesday afternoon! The first words were "Your MRI looks great!" That was followed by the usual medical jargon but Dr. Fong knew that I wanted the bottom line up front and in plain English. And I know the instant he received the radiologist's report, he sat down and forwarded the results to me. I am so lucky to have such great people as my doctors. Don't get me started on health reform.
My weight continues to bounce around but the trend is up. After dropping to 144 in September I have been above 150 now for weeks and seem to hit a new high every week. The latest is 157. Life is still not without its setbacks though. I pulled my deltoid muscle a few weeks ago just reaching for something and I re-injure it a couple times a day; frequently by taking out my wallet or tucking in my shirt. I guess the muscle there is too small to deal with the effort of just moving my arm.
So life continues with a bit less zest than I had in early September. I got the message. I'm not out of the woods yet. Improving my quality of life is a good thing to focus on but my number one priority is getting to year five without a recurrence.
On the morning of September 19th I came crashing back down to earth. Eerily reminiscent of when I first found my cancer, I was putting sunscreen on my neck prior to reffing a soccer match and noticed the area on the left side of my Adam's apple was larger than the right. My heart sank. Five months after treatment seemed like the most likely time for recurrence. I had visions of surgery; losing my larynx, my voice; of the cancer being untreatable this time. I emailed both my doctors. The weekend went by in a haze. I felt like an actor in a play; the outcome preordained. I felt powerless to change it.
My doctors came to the rescue, again!
Dr. Fong emailed me Monday morning that he would squeeze me in between appointments Monday afternoon. Dr. Yom arrived at the start of my acupuncture appointment on Monday morning at UCSF and did a thorough physical exam. I was incredibly relieved when she told me that she thought it was nothing to worry about but that I should get a needle biopsy just to be sure. I told her that I was seeing Dr. Fong in the afternoon and I would pursue it with him. Dr. Fong agreed that it was very unlikely this was cancer. He felt it was probably a collection of lymphatic fluid that had nowhere to go due to the destruction the radiation had inflicted on the lymphatic system in my neck. Before he did a needle biopsy he wanted to get an undisturbed MRI image to examine. The MRI appointment was set for Sunday.
I was so relieved to hear both of my doctors agreeing that the swelling was unlikely to be cancer. And just in time, because on Wednesday Bonnie and I would drive our firstborn up to Oregon for her freshman year of college. As expected, it was a bittersweet experience. We were so proud of our mature young lady leaving the nest, but we knew that this was the most significant step on her road to independence and that our life with her would never be the same. Luckily we were so busy getting her moved in on Thursday and tracking down last minute stuff for her that the time went quickly. That evening we had a nice dinner with her roommate Ariana's parents who live around the corner from us in the Knolls.
Glen, my guide through all this, was also up at UO dropping off his sophomore son. We were to have a quiet breakfast on Friday morning with him and his wife, but the kids got wind of this and our party of four swelled to ten, including Ari and her parents! It was a wonderful way to say goodbye and I did get some time to bring Glen up to date and compare notes.
On the way home, Bonnie and I stopped for the night in Ashland, home of the Shakespeare festival, and took in another play, Henry VIII. Our seats were great and we both really enjoyed the performance. We returned home on Saturday around 4 pm. On Sunday I had an uneventful MRI and then impatiently waited for the results. I figured I'd hear late Wednesday or Thursday.
It was a busy week due to our Global Marine Meeting at work. For the first time since my diagnosis I was able to see my team from Rotterdam and the rest of the overseas Marine team. I really like my job and the relationship I have with the team is a significant part of that. After all I've been through this year, I value our friendships even more. It was wonderful seeing them and interacting with the group just like before. The moments of normalcy were almost intoxicating!
As an aside, I know some of my imagery through this blog sounds a bit over-the-top, but to me it sometimes feels akin to describing color to the blind. There are times, not all the time mind you, but there are times when the sensory/emotional input seems more intense than before. The color and scent of a rose are more intense, like I am squeezing all the color and all the scent out because I know in my bones that life is short.
It was a busy busy week with a business dinner on Tuesday where I met some additional old friends from work that I hadn't seen in over a year and two more dinners on Wednesday and Thursday. I had UCSF appointments on Thursday and Friday, reffing Saturday and Sunday and a Quakes game with Tom on Saturday night! I was tired after all that but my weight stayed above 150 and best of all I got the perfect email from Dr. Fong Wednesday afternoon! The first words were "Your MRI looks great!" That was followed by the usual medical jargon but Dr. Fong knew that I wanted the bottom line up front and in plain English. And I know the instant he received the radiologist's report, he sat down and forwarded the results to me. I am so lucky to have such great people as my doctors. Don't get me started on health reform.
My weight continues to bounce around but the trend is up. After dropping to 144 in September I have been above 150 now for weeks and seem to hit a new high every week. The latest is 157. Life is still not without its setbacks though. I pulled my deltoid muscle a few weeks ago just reaching for something and I re-injure it a couple times a day; frequently by taking out my wallet or tucking in my shirt. I guess the muscle there is too small to deal with the effort of just moving my arm.
So life continues with a bit less zest than I had in early September. I got the message. I'm not out of the woods yet. Improving my quality of life is a good thing to focus on but my number one priority is getting to year five without a recurrence.
Friday, September 11, 2009
Drug Free At Last!!!
As usual the last month has had its ups and downs. I hit my all time low in weight (144). I expected withdrawal symptoms when I finally cut my pain patches from one to zero since I had them when I went from two to one, but it was worse than I expected. This time I had severe insomnia and the insects under the skin for 6 nights; severe being defined as not being able to get to sleep before 4am (most nights it was 5 or 6am). Then I had milder insomnia for another 6 nights which was not getting to sleep before 2am and waking during the night for 1-2 hours. I was feeling like a zombie and consistent with the past I lost weight; setting a new low. Finally after almost two weeks I was able to sleep through the night (except of course for the bio breaks that most guys my age are familiar with).
But after all that I am feeling GREAT because I am now DRUG FREE!!!!
If you haven't been on 9-10 drugs for almost 6 months you just can't understand how great it feels to be clean once again. All my previous depression has been washed away. I still look anorexic but I feel sooo much better.
I reffed a couple matches over the weekend. Granted they were just U9 ARs but it was fantastic being out there again after thinking at times that I'd never ref again. I admit I was a bit ambitious when I took 4 games this weekend but they are lower level games and it's time to test myself a bit. I've been feeling pretty fragile the last months both physically and mentally but hopefully that's over now. I still have to be careful to not get sick, but I want to act as normal as possible now.
Next week I have meetings in the office for 4 days straight. Then the following week Bonnie and I will take Lauren up to Oregon to start college and the week after that I have meetings in San Ramon for 3 days. If I can keep my weight up after being away from the kitchen for all of that time then once I build up a bit more of a weight cushion I think I'll be ready to go back to my normal work schedule.
After all I've been through this year you probably would think I'm crazy to volunteer for another clinical study. Well maybe I am, but there is this promising treatment for improving saliva function in patients who have been irradiated like me. My impaired saliva function is one of the biggest quality of life negatives for me now so I'm motivated to improve it. Incredibly the only thing that has any promise of permanent improvement is accupuncture. The research on this is fascinating. Since there are not enough proficient practitioners, if this approach indeed works, they have merged ancient accupuncture with modern science and produced electro-accupuncture! They have found that they can stimulate the parasympathetic nervous system with a mild electrical current and get the same results as accupuncture with the needles. So I'll be treated twice a week for 12 weeks and hopefully I'll see significant improvement in the amount of spit I make. And as an added bonus there are NO drugs involved and NO side effects!! Sweet!
On another positive note, the great guy who has coached and supported me through all my trials had his 1 year from end of treatment scan and he is clean as a whistle. For us the first year is the most dangerous for recurrance so this is just fantastic news. WAY TO GO GLEN!!!!!
But after all that I am feeling GREAT because I am now DRUG FREE!!!!
If you haven't been on 9-10 drugs for almost 6 months you just can't understand how great it feels to be clean once again. All my previous depression has been washed away. I still look anorexic but I feel sooo much better.
I reffed a couple matches over the weekend. Granted they were just U9 ARs but it was fantastic being out there again after thinking at times that I'd never ref again. I admit I was a bit ambitious when I took 4 games this weekend but they are lower level games and it's time to test myself a bit. I've been feeling pretty fragile the last months both physically and mentally but hopefully that's over now. I still have to be careful to not get sick, but I want to act as normal as possible now.
Next week I have meetings in the office for 4 days straight. Then the following week Bonnie and I will take Lauren up to Oregon to start college and the week after that I have meetings in San Ramon for 3 days. If I can keep my weight up after being away from the kitchen for all of that time then once I build up a bit more of a weight cushion I think I'll be ready to go back to my normal work schedule.
After all I've been through this year you probably would think I'm crazy to volunteer for another clinical study. Well maybe I am, but there is this promising treatment for improving saliva function in patients who have been irradiated like me. My impaired saliva function is one of the biggest quality of life negatives for me now so I'm motivated to improve it. Incredibly the only thing that has any promise of permanent improvement is accupuncture. The research on this is fascinating. Since there are not enough proficient practitioners, if this approach indeed works, they have merged ancient accupuncture with modern science and produced electro-accupuncture! They have found that they can stimulate the parasympathetic nervous system with a mild electrical current and get the same results as accupuncture with the needles. So I'll be treated twice a week for 12 weeks and hopefully I'll see significant improvement in the amount of spit I make. And as an added bonus there are NO drugs involved and NO side effects!! Sweet!
On another positive note, the great guy who has coached and supported me through all my trials had his 1 year from end of treatment scan and he is clean as a whistle. For us the first year is the most dangerous for recurrance so this is just fantastic news. WAY TO GO GLEN!!!!!
Saturday, August 15, 2009
The ups and downs continue, but the overall trend is up. On the up side I met with Dr. Yom, my radiation oncologist, and Dr. Fong, my Kaiser surgical oncologist, and they both were pleased with my progress. Neither could find any trace of my primary tumor. On July 30th Dr. Yom felt that the secondary site was steadily shrinking. She actually had a difficult time finding it. Two weeks later when I saw Dr Fong and he couldn't find any trace of either tumor. That's obviously a good sign but they won't officially declare me free of this cancer until I hit 5 years from end of treatment. The probabilities really start to look great if I can stay clean for 3 years. So far the reports of the effectiveness of the treatment are as positive as possible. Just one more thing to be patient about. Sigh.
I'm now down to just 2 medications (Yeah!!): my opiate pain patches and an over-the-counter anticonstipation med. We cut my pain patches down from two to just one this Thursday. The good news is that I'm not experiencing any severe withdrawl symptoms yet. I'm just very tired and a little depressed. It helps to know that the depression is coming from cutting back on the med but knowing doesn't eliminate the feeling. Bonnie and the kids have been extra affectionate and that helps.
The constant battle to maintain my weight is starting to wear me down a bit. The slightest disruption to my eating schedule seems to consistently result in the loss of a pound or two which is damned difficult to regain. I'm probably still 4-8 weeks away from being able to gain weight. I'm looking forward to not focusing most of my day on eating. Hopefully, my eating speed starts to return to normal soon, too.
On the home front, Dashiell came home from his 4 weeks of camp, so we are 5 once more at least until Lauren goes to college next month. He had a great time and wants to go back next summer. Carolyn passed her driving test so we now have 2 teens driving and sharing a car. We're only 8 months from Dashiell getting his driving permit. (Bonnie's note: both girls didn't get their license until just a few months before their 17th birthday. I would like Dash to do the same.) It just doesn't seem possible. You may want to stay off the sidewalks! You have been warned. ;-)
I'm now down to just 2 medications (Yeah!!): my opiate pain patches and an over-the-counter anticonstipation med. We cut my pain patches down from two to just one this Thursday. The good news is that I'm not experiencing any severe withdrawl symptoms yet. I'm just very tired and a little depressed. It helps to know that the depression is coming from cutting back on the med but knowing doesn't eliminate the feeling. Bonnie and the kids have been extra affectionate and that helps.
The constant battle to maintain my weight is starting to wear me down a bit. The slightest disruption to my eating schedule seems to consistently result in the loss of a pound or two which is damned difficult to regain. I'm probably still 4-8 weeks away from being able to gain weight. I'm looking forward to not focusing most of my day on eating. Hopefully, my eating speed starts to return to normal soon, too.
On the home front, Dashiell came home from his 4 weeks of camp, so we are 5 once more at least until Lauren goes to college next month. He had a great time and wants to go back next summer. Carolyn passed her driving test so we now have 2 teens driving and sharing a car. We're only 8 months from Dashiell getting his driving permit. (Bonnie's note: both girls didn't get their license until just a few months before their 17th birthday. I would like Dash to do the same.) It just doesn't seem possible. You may want to stay off the sidewalks! You have been warned. ;-)
Monday, July 27, 2009
Friday's tooth extraction went very well. In fact it was over before I knew it. My endodontist was right, the oral surgeon is very, very good: he showed me a large glob of infection attached to the end of the root and indicated that it definitely would have caused big problems later. He said my chance of getting osteoradionecrosis was small, and that the extraction was clean and the bone was bleeding well (evidently a good sign).
So other than having a sore jaw as the anesthesia wore off and being unable to eat for a few more hours (I was starving) I was in relatively good shape. I was on a limited diet for a few days which, of course, meant that I would lose 3 more pounds that I can't really spare.
Today, I had a root canal on a tooth that my endodontist suspected was dying. Sure enough, once he opened it up it was clear that the tooth was necrotic. He said we caught it in time so I shouldn't have any problems with it. Next week my regular dentist will do the crown prep for the tooth and I'll probably get the permanent crown installed a week or 2 later.
Dropping the pain patches to one 12-patch seemed fine at first, but we decided to go back up to two 12-patches due to some very bad insomnia that the reduction could have been causing or contributing to. It looks like we were right, since I slept through the night last night after 3 nights of only 2.5-3 hrs of sleep. It looks like I might have pretty severe insomnia again when I move down to one patch again, and the final move to zero could be anything from even more severe withdrawl symptoms to no problem at all. The good news is I haven't taken any Ativan in 3 days and I haven't had any withdrawl symptoms over the last 24 hours. Hopefully it stays that way.
I did a lot of research over the weekend trying to determine what was causing the severe insomnia and the weird sensations in my forearms - sort of like insects crawling under my skin. I found that either reducing the Ativan or the pain patches could be causing my symptoms. One other thing I learned was that my appetite stimulant drug could also lead to dependency and withdrawl problems. Oh joy!
So my current drug elimination plan is to completely get off Ativan this week (which consists of monitoring for any more withdrawl symptoms and dealing with them), then go back to reducing the pain patches after the dental work is completed. Since I want my body to be as strong as possible while it heals from the tooth extraction and root canal to minimize the chance of osteoradionecrosis, I need to be getting a full night's sleep to ensure maximum healing. Once I'm off the pain medication I will try stopping the last antiemetic that I'm taking and then finally try to get off the appetite stimulant. Since I believe I'm not experiencing any side effects from the appetite stimulant, I'll go back on it if I find that dropping it adversely impacts my weight.
One thing I forgot to mention earlier is the neuropathy (numbness) that has started in my feet and index fingers. Not fun, but the literature says that the build up is gradual after chemo and it peaks somewhere between 3 to 5 months. Hopefully that means it won't get much worse and will fade away completely over time. There are many cases where it is permanent though. This disease has so many fun features. Actually it's not the disease, it's the treatment. The disease ends poorly if not stopped, though, so I'll take the side effects. I just wish they would stop piling up and go away!
So other than having a sore jaw as the anesthesia wore off and being unable to eat for a few more hours (I was starving) I was in relatively good shape. I was on a limited diet for a few days which, of course, meant that I would lose 3 more pounds that I can't really spare.
Today, I had a root canal on a tooth that my endodontist suspected was dying. Sure enough, once he opened it up it was clear that the tooth was necrotic. He said we caught it in time so I shouldn't have any problems with it. Next week my regular dentist will do the crown prep for the tooth and I'll probably get the permanent crown installed a week or 2 later.
Dropping the pain patches to one 12-patch seemed fine at first, but we decided to go back up to two 12-patches due to some very bad insomnia that the reduction could have been causing or contributing to. It looks like we were right, since I slept through the night last night after 3 nights of only 2.5-3 hrs of sleep. It looks like I might have pretty severe insomnia again when I move down to one patch again, and the final move to zero could be anything from even more severe withdrawl symptoms to no problem at all. The good news is I haven't taken any Ativan in 3 days and I haven't had any withdrawl symptoms over the last 24 hours. Hopefully it stays that way.
I did a lot of research over the weekend trying to determine what was causing the severe insomnia and the weird sensations in my forearms - sort of like insects crawling under my skin. I found that either reducing the Ativan or the pain patches could be causing my symptoms. One other thing I learned was that my appetite stimulant drug could also lead to dependency and withdrawl problems. Oh joy!
So my current drug elimination plan is to completely get off Ativan this week (which consists of monitoring for any more withdrawl symptoms and dealing with them), then go back to reducing the pain patches after the dental work is completed. Since I want my body to be as strong as possible while it heals from the tooth extraction and root canal to minimize the chance of osteoradionecrosis, I need to be getting a full night's sleep to ensure maximum healing. Once I'm off the pain medication I will try stopping the last antiemetic that I'm taking and then finally try to get off the appetite stimulant. Since I believe I'm not experiencing any side effects from the appetite stimulant, I'll go back on it if I find that dropping it adversely impacts my weight.
One thing I forgot to mention earlier is the neuropathy (numbness) that has started in my feet and index fingers. Not fun, but the literature says that the build up is gradual after chemo and it peaks somewhere between 3 to 5 months. Hopefully that means it won't get much worse and will fade away completely over time. There are many cases where it is permanent though. This disease has so many fun features. Actually it's not the disease, it's the treatment. The disease ends poorly if not stopped, though, so I'll take the side effects. I just wish they would stop piling up and go away!
Thursday, July 23, 2009
Tomorrow I get my molar with the cracked root extracted. Tuesday we went to the UCSF Dental Department to get a second opinion on how and when we should proceed. They told us that the probability of getting osteoradionecrosis after the extraction was actually lower in the first 4 months after radiation therapy than after that. Evidently the radiation damage takes a while to screw up the circulatory efficiency to the teeth and jaw bone. Since it will be 4 months on August 3rd (my, how time flies when you are having fun - NOT) we have been scrambling to get things set up to do the extraction soon and to make sure that if any other teeth look ready to fail, we get those out now too.
The osteoradionecrosis has me very concerned. When I prompted the UCSF oral surgeon for some encouragment about my chances, he just told me to go check out the internet. I went into a real funk after that for a couple days. Finally when I went to my endodontist today to check out 3 other suspicious teeth I got some encouraging words. My 2 teeth that are currently sensitive to cold were judged to be OK enough to keep. One that has some sensitivity near the root was judged to need a root canal soon (which I will have done next Monday) but he also said that osteoradionecrosis isn't very common and the oral surgeon I am using is very very good. He also mentioned that the UCSF guy I talked to, the head of the department, really knows his stuff but is not a good communicator and lacks empathy. I have never before walked out of the endodontist's office after being told I need a root canal and feeling so much better than when I went in!
Also, tomorrow as part of the extraction treatment I start a powerful antibiotic to try to prevent infection of the bone that's exposed during the extraction, because infection is a primary path to osteoradionecrosis. Since it is very powerful I may have side effects from it since it can completely mess up the bacteria balance in my digestive system. There is even a (rare)possibility of very severe life-treatening colitis for up to 4 months following taking the antibiotic.
I should be getting used to having my life threatened by medical treatments that are supposed to save me by now! ;-)
At least my withdrawl symptoms pale in comparison.
Speaking of withdrawl, I went down to one pain patch today. I should know by tomorrow if I can stay there or need to go back up to two. Also I'm only taking 0.25mg of Adivan (at night) for the last 3 days and I HAVE been able to sleep. I have had bouts of depression and some throat discomfort but who knows where those are coming from.
I swear that if I ever get back to close to 100% healthy, I will never take my good health for granted again!
The osteoradionecrosis has me very concerned. When I prompted the UCSF oral surgeon for some encouragment about my chances, he just told me to go check out the internet. I went into a real funk after that for a couple days. Finally when I went to my endodontist today to check out 3 other suspicious teeth I got some encouraging words. My 2 teeth that are currently sensitive to cold were judged to be OK enough to keep. One that has some sensitivity near the root was judged to need a root canal soon (which I will have done next Monday) but he also said that osteoradionecrosis isn't very common and the oral surgeon I am using is very very good. He also mentioned that the UCSF guy I talked to, the head of the department, really knows his stuff but is not a good communicator and lacks empathy. I have never before walked out of the endodontist's office after being told I need a root canal and feeling so much better than when I went in!
Also, tomorrow as part of the extraction treatment I start a powerful antibiotic to try to prevent infection of the bone that's exposed during the extraction, because infection is a primary path to osteoradionecrosis. Since it is very powerful I may have side effects from it since it can completely mess up the bacteria balance in my digestive system. There is even a (rare)possibility of very severe life-treatening colitis for up to 4 months following taking the antibiotic.
I should be getting used to having my life threatened by medical treatments that are supposed to save me by now! ;-)
At least my withdrawl symptoms pale in comparison.
Speaking of withdrawl, I went down to one pain patch today. I should know by tomorrow if I can stay there or need to go back up to two. Also I'm only taking 0.25mg of Adivan (at night) for the last 3 days and I HAVE been able to sleep. I have had bouts of depression and some throat discomfort but who knows where those are coming from.
I swear that if I ever get back to close to 100% healthy, I will never take my good health for granted again!
Sunday, July 19, 2009
Another week of progress and challenges. I started back to work on Thursday, telecommuting from home. Two days of work wasn't too much of a stretch but it will be interesting to see how I handle a full week. Anyhow it felt nice to start to get hooked back into what is happening at work.
Saturday night Bonnie and I attended a neighborhood dance at our Walnut Knolls park. I really enjoyed dancing again. I think I surprised Bonnie with how many dances I had the energy for. I know I surprised myself! It was great watching Bonnie dance. She dances with such joy and exuberance and her distinctive style brings back many happy memories from the earliest days of our relationship.
I found out at the dance that one of our friends from our Knolls' neighborhood was recently told she had melanoma. I vividly remember how scary the news that I had cancer was for me, so I found a chance to talk with her and passed along some of the advice that I was given early on. It's amazing and depressing how many members this 'club' has.
I thought I only had one potentially addictive drug with withdrawl potential to deal with, but I found out it's actually two! Thursday night I couldn't get to sleep and I had the same sort of restless twitchy feelings that I had when we forgot to replace my pain patches and I started opiate withdrawl, but this time I wasn't due for patch replacement for another day. After a couple of hours I decided to take half an Ativan (one of the meds I'm still on) and about 30 minutes later I finally got to sleep.
The next day Bonnie suggested that the Ativan might have something to do with my 'withdrawl' symptoms and that reminded me that Glen had expressed his concern that I was still taking Ativan a few days earlier. I did some research on the net and found out that the Ativan that I was prescribed to help with the worst days after my treatment had the potential to cause withdrawl even while I was still taking it due to my body developing a tolerance for it. I also found out it had the potential to be very addictive and could be very challenging to quit!
It also can cause depression, and I have been struggling with depression off and on for a couple of months. I thought that being depressed wasn't too unexpected given all I was going through and the impact on my life, but when I had a bout of depression shortly after getting the good news about my PET scan, it just didn't feel right. I had been taking 0.5mg each morning and afternoon for months. I didn't really think about it. It was just part of my medication routine.
Friday night I had the same symptoms at bedtime and decided to try to not take any Ativan. Finally at 4am I gave up and took 0.5mg and got some sleep. Over the weekend I stopped taking it during the daytime without any problems and took about 0.25mg at bedtime, which has worked out OK. I can't cut back more with any accuracy since I'm using a pill cutter on 1mg pills. I emailed one of my doctors over the weekend to inquire about following the treatment I found on the web developed by a British doc, where Valium slowly replaces the Ativan and then the Valium is cut back slowly to zero. I hope to hear back from her tomorrow.
All in all, I felt better this week than last. And I haven't been depressed since I read that the Ativan is probably the cause. So although I keep getting surprised by new challenges, I do feel I am making progress. Now, if I could just regain the ability to eat spicy food!
Saturday night Bonnie and I attended a neighborhood dance at our Walnut Knolls park. I really enjoyed dancing again. I think I surprised Bonnie with how many dances I had the energy for. I know I surprised myself! It was great watching Bonnie dance. She dances with such joy and exuberance and her distinctive style brings back many happy memories from the earliest days of our relationship.
I found out at the dance that one of our friends from our Knolls' neighborhood was recently told she had melanoma. I vividly remember how scary the news that I had cancer was for me, so I found a chance to talk with her and passed along some of the advice that I was given early on. It's amazing and depressing how many members this 'club' has.
I thought I only had one potentially addictive drug with withdrawl potential to deal with, but I found out it's actually two! Thursday night I couldn't get to sleep and I had the same sort of restless twitchy feelings that I had when we forgot to replace my pain patches and I started opiate withdrawl, but this time I wasn't due for patch replacement for another day. After a couple of hours I decided to take half an Ativan (one of the meds I'm still on) and about 30 minutes later I finally got to sleep.
The next day Bonnie suggested that the Ativan might have something to do with my 'withdrawl' symptoms and that reminded me that Glen had expressed his concern that I was still taking Ativan a few days earlier. I did some research on the net and found out that the Ativan that I was prescribed to help with the worst days after my treatment had the potential to cause withdrawl even while I was still taking it due to my body developing a tolerance for it. I also found out it had the potential to be very addictive and could be very challenging to quit!
It also can cause depression, and I have been struggling with depression off and on for a couple of months. I thought that being depressed wasn't too unexpected given all I was going through and the impact on my life, but when I had a bout of depression shortly after getting the good news about my PET scan, it just didn't feel right. I had been taking 0.5mg each morning and afternoon for months. I didn't really think about it. It was just part of my medication routine.
Friday night I had the same symptoms at bedtime and decided to try to not take any Ativan. Finally at 4am I gave up and took 0.5mg and got some sleep. Over the weekend I stopped taking it during the daytime without any problems and took about 0.25mg at bedtime, which has worked out OK. I can't cut back more with any accuracy since I'm using a pill cutter on 1mg pills. I emailed one of my doctors over the weekend to inquire about following the treatment I found on the web developed by a British doc, where Valium slowly replaces the Ativan and then the Valium is cut back slowly to zero. I hope to hear back from her tomorrow.
All in all, I felt better this week than last. And I haven't been depressed since I read that the Ativan is probably the cause. So although I keep getting surprised by new challenges, I do feel I am making progress. Now, if I could just regain the ability to eat spicy food!
Sunday, July 12, 2009
A lot has happened in our lives since our last update 2 weeks ago. We took Lauren to Eugene, Oregon for her introDucktion to U of Oregon. Bonnie decided that we would take a few extra days to explore Oregon a bit. We spent 2 days in Medford exploring Ashland and Jacksonville. In Ashland they have a summer-long Shakespeare festival and we attended a very nice performance of Macbeth and wandered around town. In Jacksonville, they have an historic downtown with a number of very old (for this part of the US) buildings. In Eugene we attended 2 days of orientation for parents, while Lauren attended orientation for incoming students. All of us left feeling very positive about her college choice.
This was my first time away from home for a multi-day period so I was concerned about meals given my limited diet. Everything worked out fine except Bonnie and I both forgot to replace my pain-killing patches on time and I started going into opiate withdrawal which was not fun at all and kept me awake until 3 am one night in Eugene.
Dashiell and I both got some good news last week. Dash was told that his broken toe was healed so he could remove the boot he’s been wearing for nearly a month and return to normal play, so he will be able to go to camp mid July through mid August. I got a good report from my PET scan. That doesn’t mean I’m cancer free yet. That will take 5 years of clean scans. The latest scan means that the tumors they saw in December are gone now. This is the best possible news for now, so that’s good!
We have been steadily dropping the pain-killer dosage. We were at 86 a few weeks ago and today we went to 24. We’ll see soon if we can try even lower or if we need to go back up to 36 for a while. I’m still taking 5 other meds and I don’t plan to drop any of them soon but someday I’ll be med free!
Later this week I start work again, albeit telecommuting from home. I expect it to be a stretch at first but I’m anxious to get back to work.
I want to thank everyone for their comments. This blog has been a great idea to record how Bonnie and I are feeling at the time and to communicate with others. It was amazing to hear from Nancy, a dear friend from Grad School days that I had lost touch with 30 years ago. Nancy, thanks for your words of encouragement. I hope that your life has been as rich as you deserve!
This was my first time away from home for a multi-day period so I was concerned about meals given my limited diet. Everything worked out fine except Bonnie and I both forgot to replace my pain-killing patches on time and I started going into opiate withdrawal which was not fun at all and kept me awake until 3 am one night in Eugene.
Dashiell and I both got some good news last week. Dash was told that his broken toe was healed so he could remove the boot he’s been wearing for nearly a month and return to normal play, so he will be able to go to camp mid July through mid August. I got a good report from my PET scan. That doesn’t mean I’m cancer free yet. That will take 5 years of clean scans. The latest scan means that the tumors they saw in December are gone now. This is the best possible news for now, so that’s good!
We have been steadily dropping the pain-killer dosage. We were at 86 a few weeks ago and today we went to 24. We’ll see soon if we can try even lower or if we need to go back up to 36 for a while. I’m still taking 5 other meds and I don’t plan to drop any of them soon but someday I’ll be med free!
Later this week I start work again, albeit telecommuting from home. I expect it to be a stretch at first but I’m anxious to get back to work.
I want to thank everyone for their comments. This blog has been a great idea to record how Bonnie and I are feeling at the time and to communicate with others. It was amazing to hear from Nancy, a dear friend from Grad School days that I had lost touch with 30 years ago. Nancy, thanks for your words of encouragement. I hope that your life has been as rich as you deserve!
Thursday, June 25, 2009
Todd is doing much better these days. One of the lowest points for me was about 2-1/2 weeks ago when Todd was feeling very poorly and very needy (SO, so unlike him!) and I just didn't know what else I could do to help him. I felt I had done everything I possibly could, and just didn't have a lot more to give at that point. Luckily a dear friend came over the next day and talked to us about his similarly "down" experience a few months after treatment. It made a big difference, hearing what he had gone through, and what had frustrated him, and what he did to get through it.
I think that discussion and a little more healing time, combined with the family needing Todd to be "Dad in charge" when Dash broke his toe and Carolyn needed major "only dad can do this" help with her delayed flight and lost luggage, has helped Todd really start to regain his place in the family. He is, of course, still physically fragile due to all the weight he has lost and some of the meds he is still on, but this latest "bump up" in his recovery is most welcome.
In addition, he has given up on drinking those bottles of Ensure, and is eating more "normal" food. Just this week I FINALLY felt that he had three reasonable meals on the same day. Although not large portions by any means, it was a nice variety. For dinner I made him bay scallops, sauteed with tiny shards of fresh crookneck squash from our garden, and peeled plums (the peel is too bitter for him) with white nectarines. Such a relief from all the weird baby foods that were neither appetizing nor that nourishing! Lunch is often a quesadilla with cheese, chicken and corn. French toast with maple syrup is often the breakfast of choice, as it stays warm long enough for Todd to finish it. Eggs get cold too quickly, as he eats slower than his normal slow.
He is more open to trying a bite of something now, which is great. Today we shared a hot fudge sundae; he said it wasn't as tasty as it should be. (Hot fudge, how can that be??) So some things don't taste as good right now, some are still too difficult or dry or spicy to eat (nothing with black pepper, no citrus or tomatoes, for instance). But the list of edibles is growing, which makes it easier for me to come up with appetizing choices. This week the plums on our tree are ripe, so we we are enjoying them with almost every meal. In the next few weeks we will have white nectarines and apricots.
Tuesday was our 20th wedding anniversary, and we actually went out for dinner for the first time since Valentine's Day, before treatment started. Dash and Lauren came with us, also our neighbors Vince and Mary. We went to the little sushi place down the hill from us. Todd and Mary had tempura, the rest of us ordered unagi, tobiko, spider roll (with soft shelled crab), california roll with scallops and a few other things the sushi chef recommended. I brought a framed photo from our wedding day to decorate the table. We had such a nice time! We've had a lot of fancier dinners for our anniversary, but this was one we will always remember.
I think that discussion and a little more healing time, combined with the family needing Todd to be "Dad in charge" when Dash broke his toe and Carolyn needed major "only dad can do this" help with her delayed flight and lost luggage, has helped Todd really start to regain his place in the family. He is, of course, still physically fragile due to all the weight he has lost and some of the meds he is still on, but this latest "bump up" in his recovery is most welcome.
In addition, he has given up on drinking those bottles of Ensure, and is eating more "normal" food. Just this week I FINALLY felt that he had three reasonable meals on the same day. Although not large portions by any means, it was a nice variety. For dinner I made him bay scallops, sauteed with tiny shards of fresh crookneck squash from our garden, and peeled plums (the peel is too bitter for him) with white nectarines. Such a relief from all the weird baby foods that were neither appetizing nor that nourishing! Lunch is often a quesadilla with cheese, chicken and corn. French toast with maple syrup is often the breakfast of choice, as it stays warm long enough for Todd to finish it. Eggs get cold too quickly, as he eats slower than his normal slow.
He is more open to trying a bite of something now, which is great. Today we shared a hot fudge sundae; he said it wasn't as tasty as it should be. (Hot fudge, how can that be??) So some things don't taste as good right now, some are still too difficult or dry or spicy to eat (nothing with black pepper, no citrus or tomatoes, for instance). But the list of edibles is growing, which makes it easier for me to come up with appetizing choices. This week the plums on our tree are ripe, so we we are enjoying them with almost every meal. In the next few weeks we will have white nectarines and apricots.
Tuesday was our 20th wedding anniversary, and we actually went out for dinner for the first time since Valentine's Day, before treatment started. Dash and Lauren came with us, also our neighbors Vince and Mary. We went to the little sushi place down the hill from us. Todd and Mary had tempura, the rest of us ordered unagi, tobiko, spider roll (with soft shelled crab), california roll with scallops and a few other things the sushi chef recommended. I brought a framed photo from our wedding day to decorate the table. We had such a nice time! We've had a lot of fancier dinners for our anniversary, but this was one we will always remember.
Saturday, June 20, 2009
Sorry we haven’t blogged recently. There hasn’t been too much new to report on the cancer side, while the home life has been absolutely crazy.
I made it through both graduations, though I was really tired afterwards and I had to leave each shortly after it ended because I was freezing, even though I dressed like I was in Tahoe in January! Just don’t have any insulation left and the thermostat is still busted. Dashiell’s 8th grade graduation was pretty low key emotionally, as expected. The high school graduation was a different story. As expected, seeing my little girl take one more step toward the edge of the nest was intense. We are so proud of the fine young lady she’s become, but it is bittersweet.
The following week was I was apprehensive about attending the customer mtg in San Ramon due to my lack of physical stamina, but the mtg went really well. I was able to stay through lunch and my condition never limited my participation. It was the best morning I’ve had in months, since I was so preoccupied with the mtg that I went for long stretches of time without thinking about the big C. Kevin invited me to the dinner that evening and although I was concerned about eating in public due to my limited diet, low appetite and really slow eating speed (yes, even slower than normal for me!) I decided, what the heck, I’ll go for it.
One of the reasons I wanted to attend the mtg and dinner was it would be the last mtg for Vince C. and Dick V., who are both retiring in the next few months. They have both been great to work with but more importantly, they are also my friends. So I went home for a nap and later drove off to the restaurant. Yes, that is something new -- I am driving again. I’m still on enough pain killers to knock out a horse but I finally convinced Bonnie that they don’t really limit my coordination. Also, it’s not like I still drive a hot little sports car (ye olde Camry is 16 now). Well, dinner went great too, although toasting with a glass of milk while everyone else was drinking some nice red wine wasn’t much fun. It did get some laughs though! I managed to find courses that I could handle although it was a bit depressing to have my choices limited that way. There were a bunch of dishes that tempted me but I knew I wouldn’t be able to eat them. As expected, I paid for such a busy day. My stamina was much lower and I felt a bit more fragile over the next couple days. But, it was worth it!
Last Saturday there was a picnic down at the park for our neighborhood's 13 graduating 8th graders. Dash stayed to play soccer while the rest of us came home. Later, he limped in the house with a swollen, bloody big toe and asked me if his messed up toe (from slide tackling someone bare-footed) would keep him from attending camp the following week. He was planning to attend camp in Minnesota for the next 4 weeks. It is a camp that some friends have attended and highly recommend. I took him in for x-rays the next day and they confirmed his toe was broken. Not only that but the doctor thought it would probably need a pin but he said the podiatrist would make the final decision on the treatment. We couldn’t get an appt. until Wednesday so we cancelled his flights and camp. He was pretty bummed. We did get some good news on Wednesday: no need for a pin (just a big boot) and he will probably be healed enough to attend the mid July camp.
Today Carolyn left for 3 weeks as an au pair for a friend in France. Unfortunately, she had some bad luck too. Thunderstorms in Chicago delayed her departure from SFO long enough that she missed her connection in Chicago and they diverted to Minneapolis to refuel and let the storms clear Chicago. So she arrived over 5 hours late and was in a mile-long line waiting to get rebooked as I write this. Luckily I called hours ago and got her rebooked on an Air France flight tomorrow evening but she needed to wait in line to get the paperwork. It helps that her aunt lives 45 minutes from O’Hare so she can stay with them tonight and tomorrow. Her aunt and uncle and cousin Max spent hours waiting for her--they all finally left the airport at 2:00 a.m. What a long day for everyone!
I’ve got an appointment next week with Bonnie’s oral surgeon for consultation on the cracked molar. The uncertainty and potential severity of removing the tooth has been weighing on my mind. It even overshadows the cancer prognosis which seems strange when I think about it. Perhaps it means that I’m more optimistic about the cancer than I thought, although the worst case scenario with the tooth is loss of my jaw bone, so it’s all relative.
I was supposed to see my ENT surgeon next week also but he cancelled due to a need to operate on someone. My check-up needs to be rescheduled, but he has no slots available for the next 2 weeks.
The good news is my diet continues to widen and I can now maintain my weight without drinking any Ensures. That is really nice. I still should drink 1 or 2 a day to regain some weight and I will later but for now I’m enjoying not having them. Maybe not… GOD, how I hate Ensure now!
I made it through both graduations, though I was really tired afterwards and I had to leave each shortly after it ended because I was freezing, even though I dressed like I was in Tahoe in January! Just don’t have any insulation left and the thermostat is still busted. Dashiell’s 8th grade graduation was pretty low key emotionally, as expected. The high school graduation was a different story. As expected, seeing my little girl take one more step toward the edge of the nest was intense. We are so proud of the fine young lady she’s become, but it is bittersweet.
The following week was I was apprehensive about attending the customer mtg in San Ramon due to my lack of physical stamina, but the mtg went really well. I was able to stay through lunch and my condition never limited my participation. It was the best morning I’ve had in months, since I was so preoccupied with the mtg that I went for long stretches of time without thinking about the big C. Kevin invited me to the dinner that evening and although I was concerned about eating in public due to my limited diet, low appetite and really slow eating speed (yes, even slower than normal for me!) I decided, what the heck, I’ll go for it.
One of the reasons I wanted to attend the mtg and dinner was it would be the last mtg for Vince C. and Dick V., who are both retiring in the next few months. They have both been great to work with but more importantly, they are also my friends. So I went home for a nap and later drove off to the restaurant. Yes, that is something new -- I am driving again. I’m still on enough pain killers to knock out a horse but I finally convinced Bonnie that they don’t really limit my coordination. Also, it’s not like I still drive a hot little sports car (ye olde Camry is 16 now). Well, dinner went great too, although toasting with a glass of milk while everyone else was drinking some nice red wine wasn’t much fun. It did get some laughs though! I managed to find courses that I could handle although it was a bit depressing to have my choices limited that way. There were a bunch of dishes that tempted me but I knew I wouldn’t be able to eat them. As expected, I paid for such a busy day. My stamina was much lower and I felt a bit more fragile over the next couple days. But, it was worth it!
Last Saturday there was a picnic down at the park for our neighborhood's 13 graduating 8th graders. Dash stayed to play soccer while the rest of us came home. Later, he limped in the house with a swollen, bloody big toe and asked me if his messed up toe (from slide tackling someone bare-footed) would keep him from attending camp the following week. He was planning to attend camp in Minnesota for the next 4 weeks. It is a camp that some friends have attended and highly recommend. I took him in for x-rays the next day and they confirmed his toe was broken. Not only that but the doctor thought it would probably need a pin but he said the podiatrist would make the final decision on the treatment. We couldn’t get an appt. until Wednesday so we cancelled his flights and camp. He was pretty bummed. We did get some good news on Wednesday: no need for a pin (just a big boot) and he will probably be healed enough to attend the mid July camp.
Today Carolyn left for 3 weeks as an au pair for a friend in France. Unfortunately, she had some bad luck too. Thunderstorms in Chicago delayed her departure from SFO long enough that she missed her connection in Chicago and they diverted to Minneapolis to refuel and let the storms clear Chicago. So she arrived over 5 hours late and was in a mile-long line waiting to get rebooked as I write this. Luckily I called hours ago and got her rebooked on an Air France flight tomorrow evening but she needed to wait in line to get the paperwork. It helps that her aunt lives 45 minutes from O’Hare so she can stay with them tonight and tomorrow. Her aunt and uncle and cousin Max spent hours waiting for her--they all finally left the airport at 2:00 a.m. What a long day for everyone!
I’ve got an appointment next week with Bonnie’s oral surgeon for consultation on the cracked molar. The uncertainty and potential severity of removing the tooth has been weighing on my mind. It even overshadows the cancer prognosis which seems strange when I think about it. Perhaps it means that I’m more optimistic about the cancer than I thought, although the worst case scenario with the tooth is loss of my jaw bone, so it’s all relative.
I was supposed to see my ENT surgeon next week also but he cancelled due to a need to operate on someone. My check-up needs to be rescheduled, but he has no slots available for the next 2 weeks.
The good news is my diet continues to widen and I can now maintain my weight without drinking any Ensures. That is really nice. I still should drink 1 or 2 a day to regain some weight and I will later but for now I’m enjoying not having them. Maybe not… GOD, how I hate Ensure now!
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