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!

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!

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!

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!