Happy Birthday to Jon!

Today is Jon's 53rd birthday. He returned from an enjoyable visit to Staci's last night. Today we had the pleasure of Kelsey driving us to church (driver's test April 8) and then our usual Pho brunch. Levi, Ericka and Maelie visited all afternoon and Maelie had her first ride in the pedal boat. Her pink lifejacket from last years birthday finally fits her and she enjoyed "quacking" at all of the ducks on the lake. Elizabeth treated Jon to lunch last Wednesday as she couldn't join us for the festivities today.

I made everyone's favorite dinner of pot roast and mashed potatoes with chocolate/cinnamon angle food cake for dessert. Jon lifted weights this afternoon while the rest of us prepared dinner and entertained Maelie. Ericka commented that it was hard to believe that a year ago today we were all celebrating in the hospital and here Jon is working out. It truly is amazing!

Jon seems to be tolerating this new chemo well albeit early to tell. He seemed a bit tired while in California but no nausea or surprise vomiting. Jon likes to say that after he turned 40 he stopped enjoying birthdays but since he was diagnosed with cancer every birthday is well worth celebrating.

First Day Back

Jon started the new chemo today and it all went pretty well. This time he is not required to take benadryl or steroids as premeds. The steroids make him hyper for a day or two then he has a "crash" when they wear off. They also are responsible for the loss of calcium in his bones that have caused the vertebra collapse. He happy to avoid any drug that he can. His blood work was good and he's been hitting the supplements hard for the last month. Dr. Chue was even impressed with his white count.

Jon leaves tomorrow for a visit to Staci. Staci and Octavio, be warned that the primary side effect is nausea. I am hoping that he doesn't repeat his visit last year when he puked all over your truck! I will try to stash some compazine in his suitcase just in case.

Kelsey has gotten into running in the past month and generally runs 2-3 mile per day. After we did the Columbia Tower Stair Climb he decided that he wants to compete in 5k races. Jon, Kelsey and I are signed up for a 5 mile race through Soaring Eagle Park on Sunday Morning (Jon's Birthday). I have another cycling training ride Saturday and haven't run in over a year. These guys are killing me!!!

Resembling a Normal Life

We had a really good weekend. Jon joined me and my team for a 47 mile bike ride on a beautiful, sunny Saturday morning. We were both a little tentative when we started out up the hill to Snoqualmie Falls but after a few miles it was like he had never been sick at all. Every week we dedicate our rides to a special individual who is or was fighting cancer. This week it was a young man named Alex, 16 year old cancer survivor in remission for the past two years. He gave a moving talk at the beginning of the ride, then passed Jon and I like we were standing still up the first hill. Everyone there is an inspiration to us.

For every one thousand dollars I raise I can honor a cancer patient or survivor, naturally Jon was my first honori, courtesy of our Aussi friends Ray and Leonie who sent a $1000 donation. Next is my friend Diane Palmar's daughter Caitlin, who died of leukemia when she was 12 years old, My third thousand will go to my long-time patient Brianna who is currently fighting lymphoma, she is my age and has two children the same ages as Elizabeth and Kelsey. I get to have each of their names on my entire teams cycling jerseys the day of the ride. When you live in the cancer world you never run out of people who move and inspire you so I should have a jersey full of special people by June 1

Today we had the family over for Easter and thoroughly enjoyed everyone, especially Maelie. She was quick to find the hidden plastic eggs full of chocolate while all the adult kids competed for the ones with dollar bills. Levi reminded us that by Thanksgiving there would be another grandchild (son he says!) to entertain us all for the holidays. I am thankful for all the wonderful people who make everyday special for our family.

Chemo starts again on Tuesday, it's been a good week and Jon is feeling strong and ready to go.

CPT 11 AND CISPLATIN

I just finished reading numerous Internet articles to Jon about the latest chemo cocktail. There are actually some very positive studies on the combination. The biggest side effect is diarrhea (nice!) and low white counts (same-old-same-old). Jon says he's "all jacked up for chemo and throwing his Will away!"

Our visit with Dr. Chu was short and sweet today. The cancer is growing and Jon needs to start chemo ASAP. It's frustrating and disappointing to see him suffer through all the side effects of the Doxil and show a worsening of his condition.

As much as Jon would like a change of pace, Dr Chue was adamant that this is not the time for surgery. The disease must be contained before it is at all operable. The new chemo is called CPT-11 and Cblatin. I am starting my research after dinner. Dr. Chue also said that there is another promising cocktail but he wanted to do more research before trying it on Jon. It hasn't been long enough between the last oxyplatin/5FU for him to try it again. Radioactive seeds don't emit enough radiation for the size of the tumor and chemo directly into the liver doesn't show good enough outcomes. Chemo is definitely the way to go.

Jon is working hard on his naturopathic program and I haven't seen him eat any sugar or sweets in weeks. That is his one weakness so it shows how committed he is to the battle. He had a good workout today and has promised to join me for my team ride on Saturday. Chemo starts on Tuesday for another 12 weeks. He is in good spirits and doesn't seem at all rattled by the recent turn of events.

Jon is sick of chemo and has taken to telling everyone that if he can't find a surgeon that will resect his liver he'll do the damn thing himself with a local and a hunting knife! Good to know the old Jon is still in there.

He's had a nice break from chemo and felt well enough today to cycle 20 miles with me and pass me on two of the hills. He really does bounceback well.

I've been training two mornings a week by myself and on Saturdays with my team. I had to ride early this Saturday so missed my team ride but enjoyed Jon's company. I invited him to do the team ride next Saturday. Our training ride last week was dedicated to Jon so it would only be fitting that he show up next time and leave us all in the dust.

Jon had the CT and we saw the first surgeon this morning. Unfortunately the tumor in question has not shrunk, it has actually increased in size and is still abutted to the vena cava. Dr. Hart feels strongly that the risk of complication (bleeding) from the surgery prohibits the liver resection. He also doesn't recommend the ablation or tissue samples at this time because of the risk of potential damage to the mostly healthy left lobe. We see Dr. Chue on Tuesday and Dr. Precht (second surgeon) on Thursday. Dr Precht is know for a more aggressive approach so it is possible he would consider the ablation but I am sure he would also rule against the resection. If Precht also veto's the surgery I would expect Jon to start back on chemo the following week. It has been 10 months since he's had oxyplatin and 5FU so he would be able to use that cocktail again which gave us the best results thus far.

Wow, a non-chemo Tuesday, it's nice to have a week off! Jon's feeling a little better every day. No more back spasms, painful hands and feet or electrical heart shocks. His energy is still somewhat low and his hands have started to blister and peel. It's almost like his extemities were burned from the inside out. He's lost a little more hair and is back to the super-short crewcut he sported for Levi's wedding. Although he hasn't lifted weights yet he did manage a walk up and down the steep Lakeland Hill near our home.

No other doctor's appointments for us this week. Next Tuesday is Dr. Reilly and Darren Bunch, Thursday is the CT scan and Dr. Hart. The following week is Dr. Precht and finally Dr. Chue to develop the master plan.

All The Options

Lots of people have called me lately concerned that without surgery Jon might be running out of options. Never to worry, we have been busily researching in preparation of the next stage of this journey. Surgery is certainly still an option, but we won't know more until the CT scan on the 13th. Although Dr. Hart was pessimistic about the large tumor next to the Vena Cava he did say that Jon had enough good liver left on the left lobe to do the procedure if that particular tumor had shrunk. Jon does have a few small tumors in his left lobe that the surgeon would ablate with the radiofrequency. It is a major surgery with a long and difficult recovery so its not necessarily our favorite choice but could certainly offers the best hope of a complete cure. Jon likes to say that the whole thing is like "having a rattlesnake in your sleeping bag." He cracks me up with his metaphors.

Dr Chue has presented several more options. Radioactive "seeds" placed directly in Jon's liver to kill the local cancer without affecting the rest of his body. There is also chemo that can be delivered directly into the liver through the large artery in your leg. It sounds fairly unpleasant and would require a week in the hospital in a body cast so you can't move. Somehow I just don't see Jon going for that one! It also has not had particularly great outcomes. On our last appointment Dr. Chue told us about a new medication called Lenalidomide that has been successful in treating Multiple Myeloma (a form of blood cancer) This drug increases your natural killer cells and kills the blood vessels to the tumor. It is a derivative of Thalidamide that was used in the 50s to treat women with morning sickness. Thalidamide had the unfortunate side effect of children being born without limbs because it restricted the blood flow to the fetus (also rapidly dividing cells like cancer-sorry for the disgusting comparison). This would be given in pill forms so Jon wouldn't have to have chemo pumped into him every week. The side effects seem pretty minimal compared to what we've been dealing with.

Last of all we continue with the naturopathic methods that have been successful thus far. We take classes, read books and consult every expert we can find in the area. Our friend, Bill Hutton, who lost his son Paul to testicular cancer in October, has also provided us with more diet and nutritional information this week that we will incorporate into our program.

I continue to be amazed at how Jon bounces back after these chemos. Last weekend I would have thought the guy was near death and today he is hunting coyotes with Dave Bartran. He expects to feel well enought to lift weights tomorrow. If he does have surgery, he wants to be in the best shape possible going in.