Monday, March 7, 2011

The Good, The Bad, and the Bucket List

Hello Everyone:

I have some significant updates for you all on my health. First the good news. My tumor markers are back in the normal range. Yeah! I came in with a 30 which is the lowest it’s been in about 2 years. So the meds are doing their thing. Now for the bad news. I’ve developed a rare side effect from the Zometa called ONJ or Osteonecrosis of the jaw.

What is ONJ? “Osteonecrosis of the jaw (ONJ) is a severe bone disease that affects the jaws, including the maxilla and the mandible. Damage and death (-necrosis) to areas of jaw bone (osteo-) occurs as a result of reduced local blood supply (ischemia). The condition is thus included in the general category of ischemic or avascular osteonecrosis (literally "dead bone from poor blood flow.").
Various forms of ONJ and a number of causes have been suggested over the years. In recent years, an increased incidence of ONJ has been associated with the use of high dosages of bisphosphonates, required by some cancer treatment regimens.” Thanks Wikipedia!

So what does this mean? We were referred to the leading expert on ONJ at the University of Minnesota dental school, Dr. David Basi. He’s been studying ONJ for the last several years and is THE guy you go to if you get this. By the way I am only the second of over 8,000 patients of Dr. Bowers to get ONJ. Awesome!  At this time, they don’t know why Zometa or bisphosphonates causes ONJ and there is no real treatment or cure for the disease. However, Dr. Basi has had some success with surgery to remove the dead bone and let the body heal up naturally. The body is amazing. 

Because I’ve developed ONJ, Dr. Bowers cannot treat the cancer part of my disease until this ONJ business is cleared up first. It’s doubtful that I will receive Zometa again, which will probably be OK because I’ve had 30 doses of it already which is the equivalent of 30 years of medication to someone with osteoporosis. I’m also not receiving Avastin because it causes me to get mouth sores for a few days after treatments, and the thinking is that this was the catalyst to the ONJ developing in the first place. 

At first Dr. Basi said the ONJ was stage one and that he’d like to just watch it, so basically do nothing for a while. I was OK with that plan. Moments later he talked to Dr. Bowers and she told him “No, that’s not an option. Her tumor markers are normal and if you’re going to do any type of treatment on her now is the time to do it.” Again, if I have signs of ONJ, I can’t get my other meds. So on Wednesday March 2 I went in for oral surgery to have part of my jaw bone removed. I lost a tooth in the deal too which kills me the most. I’ve never had a cavity, I’ve never had braces and my teeth are all but perfect. Until now.  I did, however, get a very nice gift from the Tooth Fairy, a bottle of 2007 Opus One wine. 

How do I feel? Well it hurts like hell right now and I can only eat soft food or drink liquids. Side note. Jim and Sue Edberg heard about my plight of not being able to eat solid food so Jim being the amazing cook that he is, whipped up a batch of his world famous mushroom bisque soup and brought it over yesterday with a bottle of wine to sooth the pain. Apparently the Tooth Fairy and the Edberg’s shop at the same wine store. Thank you Jim and Sue!

So, I’m not sure if the surgery will work or if we’ve done something to make it worse. Don’t know yet, only time will tell. I’m seeing Dr. Basi tomorrow, hopefully to get some sutures removed and to see what he thinks about the progress we’ve made. In the meantime, Dr.  Bowers is holding off giving me any of my meds until we get a handle on this. She said I could be off these drugs for up to 6 months and if my markers stay in the normal range or even slightly elevated range I could be off the drugs longer. I’m OK with that. I will keep you all posted with any significant changes or progress reports as they come up. 

Now for the bucket list update. 

I have to say I’ve had a heck of a lot of fun in 2011 so far. I’ve crossed off two more items in the last couple of weeks and have plans for several more in March and April.

Since I was doped up on Vicodin from surgery this past weekend I wasn’t much fun to be around, those of you who have seen me on Vicodin know that it makes me slobber and it’s hard to put a sentence together. However, I rallied and J.R. took me to Wabasha on Saturday to the National Eagle Center. It was a beautiful sunny day and we saw about a dozen bald eagles flying around and got to see some previously injured eagles that can’t be returned to the wild, up close and personal. They’re so cool! I learned a lot about eagles and they really are majestic. MN has the largest nesting population in the lower 48 states at over 1300 nests. That’s a lot of eagles. Eagles are cool. Check!

The previous weekend J.R. and I drove up to Lutsen, about 90 minutes East and North of Duluth along Lake Superior, for a ski / dog sledding weekend adventure. Of course we picked one of the coldest weekends to do this, but other than the temperature, the weather and weekend were perfect! We checked in late Friday night and had some champagne in front of our fireplace, it was so nice. We got a late start on Saturday so we skied a ½ day, which was more than enough time. The skiing was great and we got a ton of runs in, I skied really strong that day. We went back to the hotel for dinner and cocktails and more sitting in front of the fireplace. It was a great day. 

On Sunday when we woke up it was snowing, the big fluffy flakes of snow, it was beautiful! We drove about 40 minutes north to Grand Marais, which is about 60 miles from the Canadian border. We got to the camp and met Nancy Lang, the proprietor and master of dog sledding. She was wonderful! We got our tutorial of how the day was going to go and what it was going to be like to drive our own team of dogs. The plan was to have 2 teams, one team with a driver and a rider and another team of just a driver, aka musher. 

Nancy had her team of 11 dogs to pull two people and the other team had five dogs for the single musher for the first half, six dogs for the second half.  At first Nancy and her friend were concerned about me riding at all with my health history, apparently it can get real bumpy and be hard on the back and bones. But we told her we went skiing the day before and as much as I hate to admit to anyone reading this, I had a small wipe out. Yes folks, I still occasionally fall down on skis, hard to believe I know. Anyway…..

The first two miles out of camp are technically very challenging and very bumpy so we were going back and forth of whether I should ride with Nancy or mush out of there. I decided to mush. It was awesome! Actually it’s more like water skiing than anything. You have to hold on and steer the sled with your feet like you do with water skis, all while working the brake to make sure you do not run over the dogs going down hills.  The trails were really narrow through the woods but it was so beautiful! Big pine trees, white birch trees, the snow was falling and it was so quiet. You could hear the dogs running, hear the sled skis on the snow and you could practically hear the snow hitting the ground it was so quiet out there. I could not wipe the smile off my face. About an hour and a half into it we hit the half-way point and switched sleds so J.R. could mush and I could ride. Riding was fun too; you get all wrapped up like you’re in a papoose. And it was warm.

When we got back to camp the dogs just chilled out and rested and we got some great pictures. We also had some more time talking with Nancy. We love her! Her son is a cancer survivor and is in full remission. He mushes dogs up in Alaska during the summer. Nancy and her dogs will be joining him this summer. If you have not been dog sledding and like snow and nature, I highly recommend adding this one to your bucket list, it was a really great experience. Dogsledding..check!

We’re going to cross off some pretty cool things in March and April too. We’re going skiing with my dad and Roseann in Steamboat at the end of the month. We’re really looking forward to this. I’ve substituted “ski Jackson Hole” with “ski with my dad any damn place he wants”. I’m just going to have to be satisfied with knowing that I could ski Jackson Hole if I ever got the chance. 

I’m also going to drive a ’69 Camaro. A past co-worker of mine here at Loffler has a friend who has a ’69 Camaro and agreed to let me dive it this spring. How cool is that? We’ll also be heading out to San Francisco / Napa Valley / Muir Woods to drink wine, see the sights and visit the giant Redwoods around my birthday. Some very dear friends from our Dictaphone days have helped with making that a reality for me. Thank you so much!

April 12th we’re going to see Robert Plant perform at the State Theatre and hopefully can arrange a meet and greet. Keep your fingers crossed. And if the opportunity arises I’m going to try and get hang gliding in somewhere. I was hoping for hang gliding in Steamboat but that might not happen due to the height of the mountain. We’ll see, J.R. is working on some kind of hang gliding adventure.

Well that about does it for me, thanks for listening. If you could send up some prayers for the surgery to heal properly I sure would appreciate it. I hope this message finds you all well today. 
Take care and God bless!
Love to you all, 


1 comment:

Mark said...


With all the lemons life has served you up, you have done a tremendous job of turning them into lemonade. Keep up the fight!


Mark Myette