New Test Results and The Tittsburgh Nation!

Hi Everyone,

I actually have some good news to share for once. As you know I’ve been dealing with the ONJ, Osteonecrosis of the Jaw since February. Since it first developed I’ve had 4 jaw surgeries to close it up. I had some hits and misses and it was looking great until recently. It’s still sore and I continue to deal with it daily but I think we’ll eventually get it under control. That is not the good news by the way.

As you might remember, they had to pull me off my meds, except the Faslodex, back in February because of the side effects. I was pretty sure that things would go south from there pretty quickly because how could I be off my meds and still be healthy? But as it turns out my tumor markers have stayed steady and I feel GREAT! So much so that I’m working out again, I’ve lost 37 lbs., and have had to replace just about everything in my wardrobe. I have a nice credit card bill to prove it too. That’s not the good news either.

Last week I had another PET/CT scan, which we were nervous about because I hadn’t had one in 9 months and nothing good EVER comes from me having a PET CT scan. Until this time. So, even though I’ve been off my meds for 6 months, my soft tissues are still 100% clear, which was the best news they could have ever given me. The metastatic activity in my bones is stable except in 2 small areas. My left clavicle and my left hip bone showed signs of increased activity, and no one is worried about either of these spots.  Yeah!

So we’re just going to keep on doing what we’ve been doing, Faslodex, working out and prayers. Those all seem to be working just fine these days.

I’ve crossed off another bucket list item, a weekend in Santa Fe with my girlfriends. It was great! We had a ton of fun and I highly recommend Santa Fe for anyone. It’s gorgeous, there is a ton to do and the food is fantastic. The wine and margarita’s aren’t bad either! The weather is such that my back didn’t hurt when I was out there, except after we went horseback riding. But it was worth it! It’s so beautiful out there.

JR and I are working on our trip to San Francisco / Napa Valley / Muir Forest to see the Redwoods in September, a trip to Alaska and a couple other things too.

The Tittsburgh Nation is busy training for the two big breast cancer fundraising events.  Last year I participated in both the bike ride, and the 3-Day 60 mile walk.  This year I am only biking.  Nicky, Stephanie and the rest of Team Tittsburgh will be walking 60 miles in the Susan G. Komen 3-Day in late August.  J.R. and I will be at their beckon call throughout the three days to support the team.

The Tittsburgh Wheelers are getting ready to ride again in the 4th annual Hartford & RE/MAX Results Breast Cancer Ride on August 6-7.  This 110 mile ride over two days is fun and challenging, but most importantly all money raised goes to two great beneficiaries.  Open Arms of Minnesota delivers meals to families touched by breast cancer, and the Minnesota affiliate of Susan G. Komen continues their research and awareness campaigns.
 
GUEST AUTHOR J.R. SAYS:  I am confident that the work done as a result of monies raised at these events have extended the life of Jen and countless others battling breast cancer.  You may be asking, "What can I do to help?"   Well I am glad you asked. Thank you to those of you who have already supported someone on Team Tittsburgh in the walk or The Tittsburgh Wheelers for the ride.  Our walking and biking teams alone hope to raise nearly $36,000 for breast cancer and we are a bit behind.  Our team goal for the Hartford & RE/Max Results bike ride is $16,000, and we are $4,000 away with one week to go.  You may click on the link below, select DONATE and search for the Tittsburgh Wheelers, or simply search for a rider........let's call her Jen Anderson.  She is riding 110 miles with stage 4 breast cancer in stifling heat.  It takes much less effort to make a few clicks on a computer, donate what you can, and consider yourself part of the Tittsburgh Nation Team!  C'mon, it will be fun.  For inspiration, watch the video featuring Jen speaking at last years event.  Thank you for allowing this shameless plug, but clearly we are passionate about these efforts and you CAN help make a difference. Plus our jerseys are about as cool as cool gets.
Click Here:
http://www.breastcancerride.org/site/PageServer

Look for J.R. and Jen on KARE 11 news at 4pm July 29 representing the Hartford & RE/MAX Results Breast Cancer Ride with Pat Evans in his 'Peddling with Pat' segment. Click here to watch the segment.  Thanks Pat Evans and KARE 11
http://www.kare11.com/news/article/932114/411/-Hartford--REMAX-Results-Breast-Cancer-Ride

We are looking forward to the wedding of Nicky & Zach on October 15 and enjoying the pre-wedding activities and fun.

Thank you to everyone for your continued prayers, love and friendship, I really appreciate it!

Have a great day and love to you all!

Jen

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 12^th 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, 

Jen

It's all about the Meat.....and the Avastin.

Hi Everyone,

An Avastin update and some more bucket list items have been checked off. January 10, 2011, Business Week, published an article on Avastin. In my last update the FDA was removing its recommendation for Avastin in breast cancer due to the high risks and low life expectancy for patients. After our meeting with Dr. Bowers, she said she would keep recommending Avastin as long as the insurance company would continue to pay for it regardless of what the FDA said.

Here are some pertinent paragraphs from the Business Week article and the link if you would like to read the whole thing. http://www.businessweek.com/news/2011-01-10/insurers-back-roche-s-avastin-even-as-fda-says-it-doesn-t-work.html

“ Jan. 10 (Bloomberg) -- A decision by WellPoint Inc. and other insurers to keep paying for Avastin in breast cancer may help Roche Holding AG avoid a $1 billion drop in sales after U.S. regulators said the drug doesn’t treat the disease.

WellPoint, UnitedHealth Group Inc., Aetna Inc. and Humana Inc. say they’ll keep covering Avastin based on a recommendation by the National Comprehensive Cancer Network. The nonprofit alliance of oncologists, some of whom have disclosed financial ties to Roche, says it plans to keep recommending use of Avastin in breast cancer based on the current data.

The U.S. Food and Drug Administration proposed withdrawing Avastin’s conditional approval on Dec. 16 and will review an appeal from Basel, Switzerland-based Roche before making a final decision. The reaction among insurers may be a case study in how they will resolve conflicting opinions in an era of targeted therapies that don’t work for everyone, said Len Lichtenfeld, the deputy chief medical officer at the American Cancer Society.

“Health insurers have been vilified for years now because of their policies” in covering drugs, Lichtenfeld said in a telephone interview from Atlanta. “It may be a matter of them choosing their battles.”

The National Comprehensive Cancer Network guidelines are recognized in more than 100 countries as standards in how to diagnose, treat and reduce the risk of cancer. Minnetonka, Minnesota-based UnitedHealth, the largest U.S. insurer by 2009 revenue, became the first company to base coverage on the recommendations in 2008. WellPoint, Hartford, Connecticut-based Aetna, and Louisville, Kentucky-based Humana followed.

One-third of the 27 members on the network’s advisory panel for breast cancer drugs have helped in clinical trials or consulted for Roche’s Genentech division, which developed Avastin, according to disclosures on the organization’s website. The advisory group is composed of oncologists, pathologists and a patient representative.

“The widespread acceptance and application of NCCN Guidelines” by insurers, doctors and patients “speaks to the recognition and acceptance of the transparency, credibility and authority” they have, McGivney said in an e-mail. “No other organization in medicine has attained this level of trust.”

WellPoint’s internal advisers who decide what cancer treatments to cover “recognize that the NCCN’s compendia on cancer care are strongly supported,” said Alan Rosenberg, vice president of medical policy for the Indianapolis-based insurer, in a telephone interview. “We consider carefully what the FDA looks at but we try to figure out what’s reasonable from a benefit perspective for our members.”

So why am I telling you this? Because our insurance company is Aetna, one of the companies mentioned who will keep paying for Avastin. J I’ll keep you posted on any new developments.

Now for the bucket list….

So I was catching up with one of my customers, Jeff Jelinski, who we just LOVE, and he’s looking at my bucket list and asks me why Bologna Days isn’t on the list. He sees Turkey Bingo with Nancie Pass and go to a Meat Raffle, but no mention of Bologna Days. Since I’ve never heard of Bologna Days I had to ask and here was his answer.

On Wednesdays in Genola, MN, there is a bar called the Red Rooster, got to love the name, which has all you can eat cooked bologna from 11:00am – 1:00pm for lunch. Get this; they serve it with buttered white bread, ketchup and mustard for $6.00. And, you must drink beer. My first thought was, sounds awful and a riot, I’m in! The next question from Jeff was “do you have any camo to wear?” and then he followed that up with, “please don’t show up in a suit”. I do not have any camo, I have jeans. Jeff and I headed over to the Red Rooster and I’ll be damned if every person in Genola was there eating bologna. No kidding there must have been 250+ people having lunch, drinking beer and wearing camo. It was beautiful! We had a ton of fun and believe it or not, the bologna was delicious! So its official, I’ve been to Bologna Days in Genola. Great, great fun! Thank you Jeff!

Two days later…..we went to a meat raffle. If you remember, I had never heard of a "Meat Raffle" until recently so of course I added it to the bucket list. This was also a ton of fun. Of course it snowed like Armageddon that night so some people who planned on coming couldn’t get across town but we had a great showing none the less.

We arrived at The Rail Station, we were late, the Mitchell’s and the Bartel’s scored a great table, and the meat raffle had already started. The various meats available were laid out on the pool table next to the wheel. Why wouldn't they be. Mostly steaks from what I could see. We bought in and didn’t win. Several rounds were like that. But the drinks were strong, the food was good and the company was even better. No complaints here.

I finally won! I picked out some beautiful rib eyes. After the meat was all gone they started raffling off gift certificates for meat. Nice! Mitch won the next round, a $20 gift certificate. Two rounds later, I won again! Another $20 gift certificate! Whoo hoo! Who doesn’t like meat?

It was a really fun evening with friends and meat. Thank you Mitch and Paula, Bart and Vickie, E.B. , Jim and Sue, Eddie, Liam, Big Mike, Robin, Nicky and Zach, Andrea and Nick and Jason. And my Anderson, thanks for getting me home safe and sound with my steaks and gift certificate.   I love you guys!

So the bucket list adventures continue. I’ll keep you posted on my progress and bucket list fun as it unfolds. I hope this message finds you all well and I hope you are having a great day today!

Love to you all,

Jen