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.

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.

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!!!!!

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. ;-)

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!

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!

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!