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!
Friday, December 24, 2010
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. ;-)
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