Today has been Jon's best day since his surgery. He got up fairly early and ate a good breakfast of sausage, eggs and toast. He was able to work at his desk for a few hours and only napped part of the day. He's still having a fair amount of pain but has been able to cut back on the meds which makes him much more coherent :)

When I left for work today Jon was up out of bed and making himself some almond butter toast with bananas. Although he slept most of the day and still needs to take his pain pills every three hours it is an improvement from yesterday. When I got home from work we ate some soup and watched CNN and Monday night football for an hour or so. Now he's back to bed. I expect each day to improve from here. He is definitely going to need a nice, long break from treatment and a few hunting trips to regain his strength and positive attitude after this.

Jon's still in bed. He is not as nauseous now but still in a lot of pain if he skips a dose of his meds (which he does because it makes him feel woozy). He's not eating much but I did manage to get down a little homemade vegetable beef soup. I need to go back to work tomorrow. Elizabeth is here for a few days and was planning on helping out but she came down with a bad cold so she can't go near him :(

Jon spent all day in bed resting. His pain and nausea are under control with the meds but he's still exhausted. Elizabeth, Levi, Ericka and Maelie all came for a visit and dinner this afternoon. Jon was up for about 20 minutes for visiting but not energetic enough to join us all for dinner. It was great to have some time with all of them and we are anxiously awaiting the new addition. Ericka had her last ultrasound and the doctor says the baby is already 8 pounds, 2 ounces. She has 3 more weeks to go!

It's 8:15pm and we're getting ready to head home. Jon is weak but the nausea is minimal.

5:05pm and still here. Jon's sleeping, not vomitting and still saying he wants to go home sometime tonight.

It's nearly 2pm and Jon is still very weak and nauseous. They're trying some different meds and he's trying to eat small amounts of food. We may be spending one more night in the hospital if he doesn't significantly improve in the next few hours.

It is so strange how they can do the same procedure over and over and each time Jon has a different reaction. This time his pain is minimal but he has significant nausea. For some strange reason, that I will never fully understand, Jon refused nausea meds last night. After vomitting a few times during the night and this morning he decided that they might be a good idea after all. I suppose

It's been a good evening and Jon is awake, alert, and in minimal pain. We just had our visit with Dr. Gosswami and he informed us that they were able to address all of the remaining tumors on both sides of Jon's liver today. We will not know the final outcome from this procedure for about 8 weeks as the chemo will continue working and tumors will continue to die. They will do an MRI of the liver at the end of that time. Dr. Gosswami also told us that there is only one tumor in Jon's right lung that has increased in size. He suggested that we move up our appointment with Dr. Chue and schedule a PET scan to see any active cancer outside the liver. He still thinks Dr. Chue will want to do one round of systemic chemo but we may have the option of radiofrequency ablation should the one right lung tumor be the only active one in Jon's body. We will know more within the coming weeks.

I have to laugh when I watch Jon interact with all of these doctors and surgeons. He is such a character and it is obvious that they don't have any other patients like him. After Dr. Gosswami went over all of the medical information Jon gave him a 15 minute dissertation on Ultimate Fighting and how he should come over and watch it sometime. He also talked about how he had to hug Dr. Chue even though it is very taboo in the Chinese culture. Dr. Gosswami laughed so hard and told Jon that Dr. Chue is still probably in therapy over that!

Jon's spirits are good tonight. I think he's relieved that this time around seemed to be much easier on his body. Let's hope for a quick recovery and a chance for him to do some deer hunting in October.

Jon is out of surgery and resting comfortably. He's still groggy from the anaesthesia and already hooked up to his pain meds. He was a little unsure of which part of his liver they treated today but Dr. Gosswami will be up later tonight to give us the details. He did tell Jon that he has spoken to Dr. Chue and he does want Jon to resume systemic chemo after these procedures to address the tumors in his lung. It's not exactly what we were hoping for but certainly not a surprise. We see Dr. Chue on October 21st so I imagine treatment will start shortly thereafter.

1:45 just took Jon into surgery. The promise to have his dilauded machine waiting for him this time around when he gets back to his room.

1:10PM and still waiting for Jon to go INTO surgery :(

Embolization #3

We're back at UW Medical Center checked in for the last of the chemoembolizations. Jon is not too excited about going through this procedure again. It took him so long to recover this time he's not ready to go down the tubes so soon. We always hope that each procedure will get a little easier but you just never know until your there.

Sorry everyone, I've been negligent on the blog this week. I've had numerous people call, email, and ask me if everything is ok because they worry when I don't write anything. You can't imagine how much I appreciate knowing that we are in so many people's thoughts and prayers.

Jon was supposed to be gone for 12 days so I completely filled up my time this week getting caught up on things at work and home in preparation for his next surgery. As it turned out he returned home after a couple of days because he was just too tired to do all the things he would need to on a pack-in hunting trip. It was a big disappointment for him but I'm glad to see he is exhibiting a little common sense instead of running himself down before the next surgery. Jon did get to sleep on the ground, under-the-stars a night or two so that always makes him happy. He's been whining all week that I haven't spent anytime with him but I keep reminding him that he's supposed to be gone and I don't have him on my schedule until Wednesday night :)

His final embolization surgery will be Thursday, September 25th. I've sent all of his records/ct scan to the appropriate doctors and am formulating the next step in his treatment plan. There are multiple small tumors in his lungs that will need to be addressed after he recovers from the embolization. The choices for treatment are oral chemo, IV chemo, or radiofrequency ablation. I've already talked to Dr. Reilly and am waiting to hear back from Chue and Gosswami. Reilly reminded me not to make too big of a deal about the lungs otherwise the UW might put the kibosh on the last embolization. Sometimes I forget about the "corporate slaugherhouse" mentality so it's good that I have Dr. Reilly to keep me in reality. The final call on the next procedure will be by Dr. Chue. He will be reviewing Jon's scans this week and we have an appointment with him in October. Jon has not regained all of his strength and weight from the last procedure so I'm expecting the next few weeks will be pretty tough. When I look at his last CT scan there is very little cancer in his liver but it is absolutely full of chemo. I hope and pray that this next procedure isn't as difficult for him since there is so little cancer left to kill. You just never know until you're there.

I'm still photographically challenged but I did manage to get a picture of Jon from our last backpacking trip in August. He looks even better now with a full head of hair.

Ericka and Baby

I've been promising everyone pregnant pictures of Ericka and here she is in all of her glory! Tonight we had her baby shower and a wonderful time was had by all. She is due October 18th.

Tumor Markers

All week I've been stewing about Jon's lungs. Are those tumors? How many nodules can Dr. Gosswami blast with radiofrequency ablation? Does he need more systemic chemo? etc. etc. etc. I have to say that the cancer rollercoaster has a way of wearing you down.

I still don't know the answer to those questions (my project for tomorrow) but we did have a bit of good news today. After nearly 18 months of treatment, Dr. Chue finally discovered a tumor marker that was elevated in Jon's blood. This is helpful because it gives us a way of monitoring the cancer without scans. A normal value for his AFP (alpha feto protien) is <8. Jon's was previously in the 40s at its best and as high as 90 in the recent months. After his last embolization the marker dropped to 34...best its ever been!

Jon received his results from Dr. Goswami last week and as usual we're just a little bit more confused then we were before. Everything looks good in the liver and digestive system, the liver is just full of chemo at this point. He is scheduled for his next embolization on the 25th. The small tumors in his lung remain and appear to be slightly larger. They also reported some small nodule that they say have not changed size since the last scan....we have never heard of these so it was a surprise to us. Dr. Goswami said he would consult the radiologist and let us know if there is anything to be concerned about. So far we haven't heard anything and you know I just can't let sleeping dogs lie so I will follow up this week. Jon leaves on Thursday for a pack-in elk hunt. In his absence I will consult the radiologist, schedule a follow up with Dr. Chue and Dr. Reilly and prepare for the last embolization. Although Jon's feeling pretty decent he is still frequently fatigued and it has taken at least a week longer to recover from the last emobilization. We anticipate the next one might take even longer (so much for our optimisim on the last go around!). We are hoping the lung tumors can be removed with a radiofrequency ablation and not another round of systemic chemotherapy.

LIVING STRONG

My staff and I spent this weekend providing chiropratic treatment and massage therapy to all of the athletes who participated in the US Women's Triathlon, a fundraiser for ovarian cancer. After the event, Nadine Mortell and I stopped by TopFoods to pick up a few groceries. We were wearing our "Dr. Lorri Nichols" triathlon sweatshirts. A gentlemen and his daughter stopped us and asked us if we did the triathlon and I told him, "not this one, we just provided care to the athletes." He asked if I was Lorri Nichols and told me his name was Ed Nichols, his daughter who accompanied him and his older son Eric are schedule to do an adventure triathlon in Seattle next week. This is an event that includes running, cycling, canoeing, and roller blading. Sounds like fun. He told me of his son, Eric's battle with cancer and directed me to the Livestrong (Lance Armstrongs) website. Below is Eric's story of survival. Sure is a small world!



FROM LIVESTRONG.ORG
Eric Nichols

Eric is a two-time cancer survivor.

I became a cancer survivor on January 1999. I was diagnosed with carcinoid in my single kidney.

At that time, we did an auto-transplant. They removed my one kidney, removed the tumor, and put my kidney back in my pelvic region. From there, we proceeded to have quite a few problems with dialysis and the kidney shutting down. The kidney wouldn’t seal up right away. I spent 31 days in the hospital with that surgery.

I took three months to recover, and then we were on a high watch. There was no chemotherapy, no radiation. We did a lot of CAT scans thereafter watching for any growth or any spread. They didn’t see anything right away. We went about two years with negative results on tests. My wife and I weren’t able to have any kids, so I went to see a urologist on that subject. He had asked me about my past, and I explained to him about the original surgery and what was going on there. He wanted to have me checked for varicoceles in my testicles. We did an ultrasound, and lo and behold, we had seminoma in the right testicle. That was a shock to everybody. We went ahead and had a surgery to remove that. That was an outpatient surgery.

We went about another year-and-a-half, and we started doing nuclear scans checking for more of the carcinoid. Two more tumors showed up. We decided that we were going to go in and have those removed. They ended up being centrally located on the lymph nodes in the digestive system. They did a surgery at Stanford. At the same time, they found four more nodules on the liver, and we did resections of the liver. There ended up being a total of seven nodules that they removed at that time. Since then, I’ve been cancer free as far as we can tell. That surgery was two years ago.

I had a pulmonary embolism after my first surgery. I had been home eight days after the original surgery. It was the 11th day thereafter, and I was having a hard time breathing. I was just sitting in the chair at home, and I couldn’t catch my breath. I went to my local doctor. They ended up sending me to the local hospital, and we did another nuclear scan there. That showed a blood clot in my lung. They did blood thinners, and that put me back in the hospital for an extended stay, another 20-22 days. I have a Factor 5 Deficiency. It’s a genetic trait that I’ve acquired from Mom and Dad. We’ve since found that one of my sisters also had this Factor 5 Deficiency. It could be anytime that you’d be in a resting situation, where you wouldn’t be moving. That 11 days out of the hospital, I was sedentary at home. The blood clot would start in your leg, and then it would move up, and can go to your lungs, your brain. It’s a fairly dangerous situation. I’m always on the watch for that even now, making sure that I’m not sedentary. They suggested even on long plane flights that I should get up, walk around and make sure that I’m not sedentary for any extended periods of time.

My fecal incontinence is a result of the carcinoid. It’s pretty inconvenient. I can have diarrhea as many as five, six times a day. With working schedules, things are very inconvenient. Fortunately, I have an employer that’s very understanding. I take a shot every two weeks. It’s Sandostatin that slows my digestive tract down. That has really helped a lot. I still have diarrhea on a regular basis, but it’s nothing that I can’t control with over-the-counter drugs such as Imodium. I’m able to continue life pretty normal now. But before we started getting this shot, it was rough. I was suffering from dehydration. I’m a very active, athletic person, so my diet is more focused towards the athleticism than it is to control that. I do find that when I have a higher fruit and vegetable intake, that fiber works its magic.

I’m very active. I’m an active mountain biker and road biker. I do adventure races, which are kayaking, mountain biking and trail running. I train diligently for these. If I stay strong, that’s going to help me in the future to beat the cancer. I probably exercise to a fault. I’m pretty fanatic about my exercise. I probably ride my mountain bike and road bike upwards of 125 miles a week, and I run probably close to 45-50 miles a week. It’s not uncommon for me to spend two or three hours, two times a week in a kayak. I spend a lot of time working out.

The hot flashes are part of the carcinoid. The typical symptoms are diarrhea, flushing of the face and hot flashes. The flushing has been an uncommon part of it for me. It’s been real common for other carcinoid patients, but I have had a little bit of flushing. It tends to happen a lot during nervous moments and also when I don’t get my shot on a regular basis. If I miss an appointment, the flushing and hot flashes can get more common. The other problem I have with that is I get really bad night sweats, to a point where I have to get out of bed sometimes. The hot flashes can be inconvenient. It is carcinoid syndrome, and it’s an ongoing process. These tumors are probably still in there someplace. They’re at a microscopic level, and they put off a hormone that causes these symptoms. The Sandostatin is supposed to subside these symptoms or help with them, and it usually does.

My wife and I have had an extraordinary relationship through this. She’s always been there for me. She’s been strong for me. She is always there. She’s my best friend. I can talk to her about anything. I never hold anything back from her. Some of the times that I’ve gotten bad news, I’ll go to a scan, and I’ll call her right away and tell her. I’ve been sitting in the truck, on the cell phone with her, just crying and tore up with the bad news that I just got, and she’s rock solid for me. It’s been phenomenal. Even when I was telling her that we weren’t going to be able to have kids, she was very understanding. She’s been very strong and by far and away my strongest supporter.

I had a situation with my dad and family members during surgery and right after surgery. My dad came to me one time right after surgery. He’s a very religious person. And Dad, I love you. But he came to me, and I was in agony, blue and just out of OR. He said to me that he had made peace with God and that he was able to accept it if I didn’t make it through this. To me, at that time, not making it wasn’t a possibility. At the time, I was really upset with him. I thought, “You’ve got to be positive. You’ve got to think that we’re making it. There is no other alternative.” Looking back on it, though, I think now that that was his way of dealing with it. All family members deal with these things in their own particular way. As a cancer survivor, sometimes we need to accept the way that they deal with these things and just take it day by day.

With meeting other survivors, early on, it was difficult. I had had contact with a good friend from work, and his wife had non-Hodgkin’s lymphoma. She was my support group for the first couple of years. After the second surgery or third surgery with the carcinoid, we sought out a support group, a carcinoid support group. We’ve met many carcinoid survivors. I attend their meetings probably three, four times a year, and they’ve been a wealth of information. Meeting survivors is a necessary part of cancer survivorship. Currently, I’m dealing with a coworker that has a 13-year-old child and he’s just been diagnosed with a cancer. I’m trying to help them understand the process and use my experiences to help them along. While they’re still fresh with it, I’m hoping that they’re going to move in the right direction here real soon.

I think all cancer survivors live with fear of recurrence. For me, I’ve been told that I have close to a 90% chance of it coming back. I accept that. I want to be aggressive with it, but it is definitely a scary thought to think that we could have to go through this all again in the future. I worry about leaving my wife as a single individual, middle-aged, and that would be difficult for her. We’ve been married for almost 14 years. We were high school sweethearts. My thoughts on it are to stay aggressive with the CAT scans and the other scans. I don’t ever miss appointments. When you hear that cancer word, your first thought always is, “It’s a death sentence.” It’s not that way, but a lot of people feel that way.

With live strong, ever since I’ve heard that, I practice that. Live strong, be strong. I try to be strong for my family, my wife. I try to be strong for my racing teammates. Strong for other survivors. Try to be strong for everybody, myself. I live strong by working out. Sure, I don’t work out near as much as Lance does, but I thoroughly enjoy my exercising every day, the mountain biking, road biking, running. That’s what I’m about. That’s what I do, and I focus on that. In the hard times, when I get bad news, nine times out of ten, I’ll go out for a run, for a ride and try to live strong through that.

My name is Eric Nichols, and I’m a five-year cancer survivor.

Jon continues to slowly improve. He's not in much pain, no nausea but remains fairly fatigued and still naps frequently. He's done Lakeland Hills the past three days and I anticipate he'll start his weight workouts this week. He has a pack-in elk hunting trip planned for Sept 13-22 so his goal is to back to normal before then. It seems his recovery is taking a little longer this time. Next(and last)embolization should be the last Thursday in September. He has an appointment on Friday, September 5 to see Dr. Goswani to review the last CT scan which will measure the effectiveness of the first embolization, the uptake of the 2nd, and monitor the small tumors in his lungs. Keep those prayers and positive thoughts coming for good results.

Kelsey goes back to school today, he is a Junior in high school this year and is starting to get serious about choosing a college. Since his Tarot card reading he tells me he's going to become a Catholic Anesthesiologist (long story :)) and go to undergraduate college at Boston University. I suggested that he keep that goal in mind every time he doesn't feel like finishing his homework or studying for an exam. He had a good summer and seems ready to go back to school.

Elizabeth and I spent yesterday shopping and planning for Ericka's baby shower on September 13. I have a crazy schedule until then so we got as much done yesterday as we could. Ericka has been having premature contractions so she had to take a month of work. It's been frustrating for her because it cuts into the time she had reserved for after the baby and Levi's been working 50-60 hours a week to try to make up the difference. The doctors will allow her to go back to work when she hits the 36 week mark so if she were to go into labor the baby would be safe. I can't imagine going back to work that late in the pregnancy! We are all excited about the new addition to the family. Ericka and I have been having technical difficulties with our cameras and computers so I still haven't been able to get a picture of her with her pregnant belly on the blog. I am shooting for having an operative camera by her baby shower on the 13th.