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!

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!

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.

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!

It's always something!

Well, the ups and downs continue. Dr. Fong looked at my MRI from May 29th and said, “Looks pretty good, especially for only 7-8 weeks out. The tonsil and the lymph nodes have dramatically reduced in size.”

Next I expect to hear back from Dr. Yom and the UCSF Tumor Board, but due to bureaucratic delays in getting the info to them that won’t be until next Wednesday at the earliest. After that I get a PET CT done at 12 weeks out and we will get a new number. Numbers greater than 90% are welcome, greater than 95% especially so. :)

My dentist gave me glowing reviews on the job I’ve done on my dental hygiene but found a dip pit between the gum and tooth at one corner of a tooth that had a root canal last May. This usually means a cracked root and replacement with an implant. Since any extractions expose me to severe bone infections due to the intense radiation that bone has already suffered, an implant is not an attractive option. (Per Dr. Yom: absolutely NO EXTRACTIONS.) We may end up leaving the injured tooth in place and fighting the inevitable bacteria infections with antibiotics for the rest of my life. Not what a person who is looking forward to getting off all of these meds wants to hear.

With Bonnie’s encouragement and help I’ve added more non-liquid foods to my diet. That’s a nice plus and it lets me keep an eye on the status of my taste buds. So far, taste is starting to return except for sweet.

This coming week I need to build up my stamina since I have back-to-back graduations to attend June 11 & 12. That will be a dry run for me to help decide how much of a customer meeting I can attend the following week in San Ramon.