JON VS THE UNIVERSITY OF WASHINGTON

We've been waiting for a call from the UW for Jon to see one of their oncolgists to sign off on the chemotherapy drugs that will be utilized in the chemoembolization. Merely a formality to work within the system but a requirement nevertheless. On Monday Jon received a call to tell him he could see the doctor on JULY 17. He responded, "Let's pretend I have terminal cancer. Why don't you call me back when you can do better." He now has an appointment on Monday :)

From Sister Kristi

Megann and Cody were involved in the Enumclaw Relay for Life this Saturday (same day as Jake's graduation party). This is an event to raise money for cancer research. Tonya and I donated money in honor of Jon and Megann decorated a bag in his name. When it gets dark they put a candle in the bags and line the track with them. There are teams of people and at least one member of every team walks the track for 24 hours straight. This is a photo of Jon's bag. Love you guys- =

Is This My Husband?

Jon has been sooo nice lately it's making me suspicous. I told him as much yesterday and he said that it's hard to be nice when your feel like shit and that he had a lot of making up to do. THAT is one true statement!!!

He made it 30 miles on his bike yesterday, quite impressive! He's also recently obsessed with mowing our lawn (whether it needs it or not) I am happy to have any help he can give and I think he's happy to just be out of bed and feel productive again. He's been gaining about a pound a day and eating everything in sight.

If all goes well we will be taking a short vacation over Independence Day weekend before the big procedure in mid-July.

Pets,CTs and Other Animals

We had a most enlightening meeting with Dr. Goswami this morning. He provided us with the opportunity to review Jon's recent CT scan and the results were quite impressive. I now have a better understanding as to why the PET scan report was so confusing. In looking at the CT scan most of the small tumors show up as dead (aka necrotic) tissue. The large tumor next to the vessel remains but the entire center is dead tissue, there is only a small periphery of active cancer. In Dr. Goswami's opinion Jon has only 10% of the active cancer that was originally diagnosed in 2006. At first Dr Goswami was suggesting that maybe we take a "wait and see approach" but you all know that is definitely not our style! We figure that the stuff is dying lets hit it with everything we've go to kill it once and for all. We mutually decided to move forward with chemoembolization rather then the Y90 isotopes. Our rationale is that they have similar outcomes but the Y90 is a one-time deal. The chemoembolizations has more side effect (pain, nausea, etc) because they use a chemotherapy agent, however compared to the 64 chemotherapies Jon has already endured he thinks it will be manageable. The theory is similar to the Y90 but utilizes chemotherapy agents (our favorite cisplatin that did so well last go around) to kill the cancer and prevent any blood flow to the tumors. Preventing the blood flow alone should kill the cancer but the chemotherapy agents are added insurance. We are saving the Y90, since you can only do it once due to the high level of radaition, should we need it down the road. There are some formalites to negotiate before we have it schedule but are thinking mid-July for the actual procedure. They will do the right lobe first which is the worst tumor burden and the left lobe mid-late August. There also remains the possibility of Radiofrequency ablation, cryotherapy, or liver resection should this procedure be only partially successful.

There are now 3 small lesions in Jon's lungs which they are calling "stable" as well as the lymph nodes around his pancreas that still slightly light up on PET, but again are considered stable. As a result there is a good possibility that Jon may need more systemic chemo following the embolization however that may be in pill form rather than IV. He will be rescanned after the procedures and then every three months for the following year. We can also monitor his tumor marker but that is of limited value. His pancreas STILL looks clear. Dr. Goswami and Dr. Chue are working together to perfect the combined treatment plan.

Jon's put on about 12 pounds but still has a way to go to be back to normal. He lifted weights tonight and we are riding bikes with some friends in the morning (Toucan shorts, LoriB!). He really lost a lot of muscle mass this time around and says he's lifting as many weights as his sore muscles will allow.

This Sunday is Maelie's Second Birthday Party and we are excited to be able to celebrate together!

Kelsey's last day of school was Wednesday and we have had a herd of boys at our house ever since. They put up a tent in the backyard and made a giant slip and slide down the hill to the water. What a riot!

Today we met with Dr. Chue and Dr. Reilly. We also reviewed the addendum report from the UW PET scan. It appears that although Jon's tumors have shrunk the two large ones remain in the right lobe of the liver, one of which is in close proximity to the major vessel. Jon had a CT scan today and we meet with Dr. Goswami next Friday. In light of the new information, Dr. Chue is deferring to Dr. Goswami for the next step. There are two choices for the liver; the Y90 isotopes or chemoembolization with would pump chemo directly into the liver and cauterize the blood vessels to the largest tumor. He is also still a candidate for Radiofrequency Ablation for the one small tumor remaining in the left lobe of his liver and the small tumor in his lung. Dr. Chue also started the paperwork on the Lenolitamide which is an immune booster as well as a therapeutic agents that destroys the blood supply to the tumors. Jon will remain on that between any other treatments.

Jon's been feeling pretty good and has had one weight lifting session and two walks up Lakeland Hills. He also went GOLFING with Howard on Wednesday...never thought I'd see the day!! His blood work is improving and he plans on jeeping with Levi on Saturday, then both being home on Sunday to celebrate Father's Day and Levi's birthday. Elizabeth just finished finals and Kelsey will wrap up the school year next week. It's been a rough semester for both of them and I will be glad when summer comes.

Cancer Fundraising

The totals are in and we raised just under EIGHT MILLION DOLLARS for cancer research with our endurance bike ride. Unbelievable for a single event! I told Jon that I would like to take the Team In Training model and apply it specifically to pancreatic cancer that is sadly lacking in research dollars. Instead of bike rides and marathons I would propose backpacking/hiking trips in honor of Jon's passions (sorry, I just don't think the hunting thing would fly!) TNT does do hikes on a fairly limited basis so I would like to give their program a go and replicate their protocol.

More PET scan results

I finally received a copy of the written PET scan results on Friday. It does appear that the pancreas and surrounding lymph nodes still look good and the small tumor in the right lung has shrunk. The description of the remaining tumors in the liver is very vague and does not list size of location, just indicates that the uptake has decreased, indicating that the tumors are less active. I called Dr. Gosswami and asked him to please have the radiologist reread the scan and detail the size and location of the remaining tumors, he agreed. Jon is also having a CT scan on Thursday. PET scans are a better measure of metabolic activity while CT scans are a better measure of size and location of any remaining tumors.

With the current information both Dr. Gosswami and Dr. Chue think that we should wait on utilizing the isotopes for Jon's liver. The isotope treatment can only be performed once and since the tumors are smaller and less active, Dr. Chue wants to start Jon on an oral chemo. They want to reserve the isotopes for such a time that Jon would no longer respond to chemo. This last round of intravenous chemo was very difficult due to the side effects but Dr. Chue assures us that the oral chemo has minimal side effects and that Jon would live an essentially normal life. He would need to be monitored with bloodwork to track his tumor marker and CT scans every 3 months. Should he not respond or worsen he would then move forward with the isotopes and/or the ablation to the tumor in his lung. We also see Dr. Chue and Dr. Reilly on Thursday so we will no more then.

Jon was fairly active this weekend. We went to the movies Friday night and he helped me board up my office on Saturday after some crazy, drunk person drove their car into my newly remodeled building Saturday night (seriously...all the way over the sidewalk, through the rose bushes, railroad ties, across the parking lot, up over the sidewalk and into my waiting room). He had friends and family over to watch UFC Saturday night and when I came home Sunday afternoon, he was actually mowing the lawn with the riding lawn mower. That is the most he's done in months and he says he's "coming back to life".

PET SCAN RESULTS

We sort of, kind of received the PET scan results last night and today. There seems to be a lot of discrepency between the reports and I don't think I will feel satissfied until I can look at the written report that should be faxed to me tomorrow. As best we can tell this scan shows some improvement over the last, the question remains exactly how much. We are moving forward with the isotopes and are now just waiting for the scheduling department to give us a call. My expectation is that Jon will have the "mock procedure" next Thursday and the "real deal" the following Tuesday. We remain optimistic about the outcome.

Jon made it through the entire day today without a nap. That is the first in many months, although by the time I got home from work he had crashed. He hasn't gained any more weight but his color looks good and he's starting to get a little peach fuzz on his head.

At this point we are awaiting instructions from the University of Washington. In addition to the isotopes we will also be planning a radiofrequency ablation for the small tumor in his lung. More to come in the following days....

We are still awaiting the results from Jon's PET scan. Dr. Gosswami will be calling us with the report, hopefully today. Jon is feeling somewhat better and has already gained 10 pounds this past week. He was seriously dehydrated from this last round of chemo so much of that was water. He's eating regularly and able to hold down (and in!) all of his food.

I returned from my cycling fundraiser in Tahoe early this morning. I am still trying to find the words to describe the experience. My team has trained together since February and we have formed a connection that is only brought about by the shared hardship that unites those fighting cancer. The event, a 100 mile endurance bicycle ride, was open to the public however 90% of the 2500 participants were Team In Training members from all over the country. We flew from Seattle to Tahoe together and shared the same hotel. My roommate was a women named Sophie, a french pediatric oncologist who lost her 13 year old sister to brain cancer when she was 15. She is known by the team as "the happiest person we've ever met" We shared all of our meals, free-time and did a practice ride on Saturday morning. When our team captain, Russ, discovered that Elizabeth had ended up in the emergency room Friday night (don't worry she's doing better and they finally figured out what's wrong with her stomach) he dedicated our practice ride to Jon for his battle with cancer and asked everyone on the team to also support me both as Jon's advocate/caretaker and Elizabeth's Mom who was far from home with a sick daughter. I had seriously considered flying home after our practice ride Saturday night but was unable to get any flights until late Sunday. Our practice ride was the first leg of our journey and included a steep road of switchbacks which ended in a beautiful view of Lake Tahoe. That night, Elizabeth was released for the ER with finally the right prescriptions and beginning to feel much better.

The entire town was filled with TNT members...everywhere you look were people fighting cancer and working to raise money for a cure. We had a huge Pasta Party Saturday night honoring the participants. It started with all of the coaches from across the country lining the hallways and cheering wildly as we participants walked into the banquet room. As you entered two large screens on either side of the podium flashed pictures of all the honored and memorialized friends and family members. It broke my heart to see all the small children with cancer and I cried throughout most of the dinner. There were many inspirational speakers who survived cancer, raised money, and provided research. All of the cancer survivors in the room were asked to stand and we gave them a sitting ovation.

We awoke the next day at 4 am to have a big team breakfast and be on the road by 6. Each team started in waves and our turn was at 6:40. It's quite a sight to see all those cyclists from all over the country sporting their custom jerseys and wearing silly representations of their homeland on their helmets (we had umbrellas, New York had big apples, PA Hershey kisses, etc) As we rode through South Tahoe the streets were lined with people cheering. One women was sitting in a wheelchair holding a thank you sign while her husband cheered us on. As we moved out of the city and into the mountains the sun was shining and it was a beautiful day.

During our practices the team was divided up into riding groups according to our cycling speed. I rode with David, Stephanie, and Darlene who had somehow decided it was their personal mission to make this the best ride of my life. Each of them had been profoundly affected by cancer and knew exactly where I was physically, emotionally, and spiritually. We road in our usual pace lines (you know when you ride fast and close together to pick up more speed and endurance) but no one would let me pull very long and constantly checked on my stamina. David hovered over me most of the way like a mother hen. I'm always used to being the strong one of the group but on this occasion found great peace and comfort in their support. We met up with the rest of our team at each rest stop where we fueled up and cheered each other on. I was pleased to see all the "nubie" cyclists making it through the course!

As an honoree Jon's name was inscribed on all of our jerseys. I also had pinned his famous bicep flexing picture with my rider number on my water backpack. Stephanie had a picture of her beautiful 10 year old son who she had lost to leukemia. Darlene had a picture of her father, Jack, as well as a host of ribbons for all of the friends and family members battling cancer. At the top of Spooner Pass, an 8 mile climb to 6800 feet at our 85 mile mark, the second half of our "fast group" waited for us. They asked me to lead the group in and be the first to cross the finish line. We all cried, hugged, and drank a beer while we awaiting the arrival of the rest of our team.

I flew home late Sunday night so I could help get Elizabeth on the mend and be here for the PET scan results (still waiting). The rest of my team returned today. I really did think of Jon enduring all of those chemos when I climbed every hill.

I have learned more about the strength of the human spirit then I ever thought possible. I personally witnessed a beautiful young women with one leg cross the finish line. I now realize more than ever the importance of fundraising for continued research. The cure rate for Leukemia and Lymphoma has improved tremendously because of TNT and events like this. The procedure Jon will have for his liver would have been impossible a year ago, but through efforts of individuals such as these miracles can happen. This year to date TNT has raised nearly 8 million for cancer research. One individual from New York personally raised $54,000 for this event.

Thank you again to everyone who called, text, emailed, sent positive thoughts, prayers and, of course, money. It was the experience of a lifetime!