You can take it with you

Obituary

Just before dawn on Sunday, November 22, about 20 family members and friends surrounded Tom Campbell, telling stories and toasting him as he left this life. Thomas Joseph Campbell was born in Fort Monroe, Virginia on September 9, 1953. As part of a military family, he lived all over the U.S. and in France. After high school in Hawaii, he came to Oregon to attend Oregon State and essentially never left.

Tom died due to complications of his battle with colon cancer. He is survived by his wife Jan and sons Cooper and Rory. He was a design engineer with a passion for automotive design. Because he wanted to live in Portland, he was not able to pursue automotive design as a career; while working for other companies, his goal was to have his own business designing and building automobiles. In fall 2009, he and Jan formed Campbell Coachworks with that goal in mind. Tom spent 20 years designing and building from the ground up the Cambellini, a retro sports car inspired by European sports cars of the 1960s. In summer 2009, he brought the Cambellini to the Concours d’Elegance in Forest Grove where it took first place in its division.

Tom passed with his ugly old tea mug in one hand and a cup of beer in the other. Jan had to pry the beer from his hand. Tom to the end. He took with him to his next destination the tools and loves of his life: his mechanical pencil, calculator, bifocals, a bottle of Mercurochrome, his oldest pair of shop pants, a Skyline Ridge Runner tee shirt, a “hideously ugly” (says Jan) torn and stained red plaid work shirt, his suspenders, favorite slippers, driving cap and a pin from the first show where he showed the Cambellini. Also with him were pieces of jewelry long worn by Rory, Cooper and Jan, a photo of Tom and Jan, and a photo of the Cambellini.

Tom and Jan would have celebrated 20 years of marriage on December 16. Despite his young age, Tom felt that nothing important had been left undone. Even if he was unable to see his sons become men, they are old enough for him to have seen the men that they will become and he was very proud of them.

Tom is also survived by his parents William E. and Julia Campbell of Lake Oswego, sisters Laura Clark of Portland and CrisMarie Campbell of Whitefish, Montana, his favorite aunt Bernadette Murphy of New York City, and a large community of friends and family.

A celebration of Tom’s life will be held December 5. Email tomcampbellcelebration@gmail.com for details.

Celebration of Tom

Tom and I would have been married twenty years on December 16th. We were afraid to talk about it before we got the results of his scan, but we were hoping to have a huge party to celebrate his recovery and our anniversary. When he was diagnosed with colon cancer in March the prognosis was not good. we thought he may have as few as three years. In May, Tom had a scan that showed huge improvement, the doctor told us that it was not unreasonable to anticipate a cure to his cancer. So we began to plan for the rest of our lives. We started Campbell Coachworks, a business plan for Tom to at last fulfill his dream of building and selling kit cars. When he had the energy over the summer and early fall he began to build his prototype. It's very rough, but as it sits in the shop you can see the shapes that inspired him. Even when we found out that his cancer had not been cured and that he had pneumonia, we never, ever, imagined that this would happen. When Tom was moved to the CCU we understood that we would know in about three days if he would make it. We discussed with the doctor and our boys if we wanted to continue to treat the illness or just make him comfortable. Tom was determined to fight, he received a new chemo drug just ten hours before he passed. You have all touched us in a big or small way. Prayers, hopes, offers of support. There have been small and grand gestures from cards and flowers (please, no more flowers), coming to the service, meals, transportation, help with my work. A group of guys from Silver Eagle are building our porch rail. A neighbor wrote Tom's obituary. Another neighbor stayed home from the service to keep an eye on the house for us. We have been surrounded by friends and family and yesterday it was just the three of us and it was normal. I had to empty my own dishwasher and do laundry for the first time in weeks. So we're having that big party.

A Celebration of Tom

Saturday, December 5, 2009
Beginning at 3 p.m.

Join us as we celebrate Tom’s life. We’ll be in the house, around a bonfire and in Tom’s shop. The Cambellini will be on display. Lots of food, drink, loud music and people.

This is a celebration of Tom Campbell. Bring your stories, photos, and memories of Tom. Be ready to share, laugh and cry with us.


For information, email: tomcampbellcelebration@gmail.com

A Tribute to Tom

Joe Freitas was asked for one line to discribe the styling of the Campbellini, This is what he wrote.


From the fertile mind of Tom Campbell comes the ultimate mix of science, art, engineering, and finesse. Born out of a necessity to create what had never been created before, the Cambellini started as a vision. What would a mix of classic British and Italian exotic sports cars and modern technology look like today? Tom answered that question in his quest to create something wholly original. To be a car designer in the U.S. is a tough life. You spend years toiling away in Detroit, working on the purgatory that is cup holder design, then maybe…just maybe, you get to design the next Ford family box, or the next Chrysler straight-to-rental-fleet special. For Tom, this just wouldn’t do. The Cambellini would be of a singular vision, wrought of singular hands. The designer started like so many other budding car designers; he sketched his ideas on paper. But that’s where the similarities between Tom and other car designers come to an end. The Cambellini leapt from the paper to a clay model, meticulously shaped and reshaped with his own hands like such fine pottery. Then clay led to steel, aluminum, fiberglass, leather, and rubber, all fabricated, formed, riveted, and welded by the man himself. Not everybody has all the tools to make an entire car from scratch in their shop though. Tom was no exception. But whenever Tom bumped up against a capability or tool he did not have, he made one! Many people these days in the custom car business throw money at the problem. Tom threw himself at the problem. Big car companies have to make many compromises. Not so with the Cambellini. A fully independent suspension designed and built from scratch by Tom would ensure proper racecar handling. If the engine is the heart of the car, then the rhythm of the Cambellini certainly came from a different drummer. The best engine Ford never made would sit immediately behind the driver and in front of the rear wheels. The Yamaha V6 SHO engine built for Ford’s hot sedan in the early 1990’s would fit the bill just fine, and satisfy Tom’s sense of individuality. The body? Hand laid fiberglass made using molds Tom made using a styling buck Tom made. Did I mention Tom made everything? And after years of toil and perseverance, the results of his labor of love are astounding. The instantly catchy Italian red Cambellini strikes a low, wide pose, with a slender waist and wide hips. The look is instantly breathtaking and confusing because of its distinct lines, yet the familiar influence of classics of yore can be discerned. Is it a Ferrari? A Jaguar from the swinging sixties? Is it one of the many European cottage industry supercars? No. It is much more special than that. It is the embodiment of the anti-establishment car. It is the free spirit in automotive form. It is speed, function, and fun, all wrapped up in an eye popping wrapper.

Tom never followed the pack, went with the crowd, or stepped in line with the automotive world. Tom forged his own path, his own unique place in automotive history, and he did it on his terms with no compromises. Is it art? Is it engineering? Is it hand crafted excellence? Is it open-topped nirvana for car guys and gals? Yes it is. It most certainly is.

He had no regrets

Tom just didn't bounce back after his last chemo like we expected. We really believed that he had licked the cancer or at least kicked it pretty hard. He started out October feeling crappy, and it just got worse. We found out in late October that there was still cancer remaining and that he had developed pneumonia. We will never know but it seems like the pneumonia must have been caused by cancer, because nothing we did made any difference. Tom was in the hospital for most of November, he just got sicker and sicker. He was able to have short visits with many of the people that were the most special to him but missed quite a few as well. About twenty five of us gathered around him in the early morning. He received a blessing from Mary & Steve Young's priest, and then we drank beer, screwdrivers and juice, toasted him and told stories. Tom passed peacefully at 6:30 Sunday morning, November 22nd.

He was 56 years old and said he had no regrets about his life. He felt nothing important was left undone. Even if he was unable to see his sons become men, they are old enough for him to see the men they will become and he was very proud of them. Tom died with his ugly old blue tea mug in one hand and a cup of beer in the other. I had to pry the beer from his hand. Tom to the end

There was Mass for Tom at the chapel at Mary's Woods in Lake Oswego, Tuesday, November 24th

Being in the CCU is the right place for Tom. His problems keep changing, some improve and new ones show up. Today his cough and breathing are much better, he is using something called a Bipac that pushes the air into his lungs for him. He had it on yesterday for a few hours and it really helped.

It's impossible to comprehend how we got here.

Relatives are coming in from out of town to visit. Some of our very closest friends have been able to pop in to say hello. The boys brought some of Tom's favorite pictures and things from home to decorate his room. They have been able to spend time just sitting with him. I am mostly in my recliner next to his bed. I got some sleep last night, mainly because they are so on top of it here, I guess that let me rest.

Emails and offers of support continue to be a great comfort.

Please keep us in your thoughts and prayers.

Last night things went from bad to worse. Tom is now in intensive care.

He is now resting much more comfortably than when he came in about 3am. They are now treating the yeast, which is responding and at least the stuff in his throat is less bothersome. His breathing has improved, and a tube has drained the contents of his stomach, softening his belly quite a bit. This is some of the stuff I didn't talk about yesterday. I'm telling him that he's doing better, but he feels so bad that he can't feel the difference.

They still aren't sure at all of the real cause of the infection. This is all very scary.

Roller coaster

Many of you don't know that Tom ended up in the hospital with the pneumonia. At first they thought it was your basic pneumonia and treated him with your basic IV antibiotics. He was in that time for seven days and then went home being told to expect to feel crappy for quite some time. Three days later he was worse, so we got to come back in through the ER and this time he's been here for another seven days. Gradually getting worse each day.

He has a team of doctors, Oncologist, Internist, Pulmonoligst and Infectious Diseases. Each of these doctors has partners and associates and each of them has a slightly or widely different idea of what is going on. Tom has been on the heavy hitter trio of antibiotics, guaranteed to get any bug, except of course the one that he has. A few days ago he had a scope with a camera shoved down his lung to look around and take some slime samples. The cultures have been gradually coming back, negative for TB, bacteria, viral, MERSA, Flu and God knows what else. Finally today they said they had a positive culture for yeast. So we got all excited and I called a whole bunch of people and told them we had it figured out. Then the third Infectious Diseases Doc shows up and says he really doesn't think it's yeast in his lungs, but it defiantly is in his throat. He has now been started on the anti-yeast drug and is having another scoping tomorrow complete with tissue samples this time.

This is just a basic overview. Even just the highlights would be way too long. I have been at living
at the hospital full time. Catherine has stepped up beyond what I could ever have asked of anyone. She has replaced me at home, getting the boys to school, taking care of the animals and the house. Lots of other people have been jumping in and bringing food, driving kids and more. I have never felt more supported. The boys are doing good, it's tough on them but they really seem to be handling it.

I'm done trying to predict when Tom will be better, I'm just trying to look forward to him being better. We think chemo will start in a couple of days. Now that the cat's out of the bag, I'll try to do more frequent postings and you can all ride the roller coaster with us.

It's like blackberries!

I received this from our neighbor Laura Foster and it made me cry (in a good way). I love the analogy and optimism and wanted to share it.

Jan thanks for the update. I've been thinking of you, hoping that things are going well, and it is GREAT news to hear the cancer is so reduced. It's like blackberries: the first hacking and pulling shocks the hell out of them. Though they come back, subsequent pulling further weakens them, and soon they really don't have that much fight left and then one day you notice the blackberries are gone and in their place are some lovely sword ferns.

So we are hoping for sword ferns in Tom's near future.


Laura

I really hoped to be writing a celebratory blog today, but that's not the case. It's complicated. First let me say that it's not all bad news, it's just not what we were hoping for. Tom finished his chemo on September 29th and he didn't seem to bounce back like we thought he would, and then he developed a cough, then a fever, so he did a round of antibiotics and had his scans this Monday. The scans showed two things clearly, one, Tom has pneumonia, which explains sleeping almost round the clock and coughing his head off. The other thing it showed was that the cancer in his abdomen is still there. It is significantly reduced in size which is a good thing, but it's still there which means the fight is not yet over.

So Tom will take a double round of antibiotics this time, and the Dr. says it could take quite a while to completely recover from the pneumonia. After he is recovered, in four to six weeks, he'll have another scan that will hopefully prove that all the crap in his chest is just the pneumonia. Then we have to figure out what to do about the cancer. Might be able to have more surgery that will get it, perhaps more of the same chemo, or a different one.

To say we're disappointed is an huge understatement. We had hoped that the scan would show that Tom was cancer free, although I don't think we really believed it could be true. I'll hang on to the improvement that the chemo made and hope they can find something to beat it or at least contain it. Tom is having a hard time being optimistic at this point, being as sick as he is doesn't help.

Thanks for all your support, thoughts and prayers.

Jan

Sorry, way too long!

Oops, sorry about the long delay. Let's catch up. First, tomorrow, Tuesday, September 29th is Tom's last chemo. The side effects have increased, a lot, and he has been frankly pretty miserable most of the time since about August. So, even though it's his last treatment, he's really dreading how it's going to make him feel. Late October, Tom will have a PET scan and MRI that will reveal how successful the chemo has been. Our beloved Dr. Weinstein remains very optimistic that the results will be good. So keep all those prayers and good thoughts coming.

When last we spoke, Tom was about to take the "Cambellini" to the Concourse. He was awarded first place in his class. More important, the positive feedback and attention he received, revived his desire to pursue his dream as an automobile designer and kit car manufacturer. He has lacked the energy to do much in the shop, but the house is full of little sketches and lists. The car is based on the Mazda Miata sports car chassis and power train and the style is inspired by the sports cars of the 1930's.

We'll try to keep up with the postings.

Jan

Hi all, I'm back to writing the blog for now. Tom is now halfway through chemo having received his sixth infusion this week. Overall he is doing extremely well, his blood tests keep coming back "excellent" and his side effects are minimal, with one main exception. He is very low energy, and every chemo it gets lower and comes back less, it frustrates him, I think because he doesn't feel that sick, just exhausted most of the time. Tom is working from home, about ten hours a week. That seems to be going well, researching the feasibility of a new product.

The other good news is that the car he built, the Cambellini, was accepted to be shown at the Concours d'elegance, Sunday, July 19th, in Forest Grove. The Concours is the biggest car show in the area, the one that Tom has been visiting for at least thirty years. Cars he's admired and photographed there over the years, inspired and influenced the design of the Cambellini. It's a lovely event on the lawns, under the oak trees at Pacific University. In addition to the finest preserved and restored, vintage and handmade vehicles, there is live music and food. We are very proud that Tom's car has been accepted to be shown and hope that you can attend the event. Here is the link for more information. http://www.forestgroveconcours.org/

Jan

I had my forth chemo treatment this week. Each visit includes a blood test and an examination and the news was all good. Doctor Weinstein will order another scan in two months to see how things are progressing. I have been thinking about my six months of treatments in terms of fractions, now just moving from a quarter of the way through to one third now behind me. Knowing what to expect in terms of the side effects it is less unsettling now, which makes the whole process a little easier to negotiate even as the effects seem a little more significant each go round. I’m continuing with acupuncture, shiatsu massage and nutritional supplements. These help with the side effects of the chemo with the greatest benefits, in my opinion, from the supplements. The chemo really messes with the membranes in the mouth and nose, so a lot of what the supplements are doing is helping with that. I’m focusing on eating fruits and vegetables, it is pretty clear that a plant based diet is better for beating cancer vs. one high in red meats. Hopefully most of the drama in this fight is behind me now and I’m happy that things are still heading in a good direction. The plan is to continue to take my medicine and hope when it’s done I’m all better!

Hope!

Jan has pronounced me in charge of blog updating and as you may have noticed, I’ve been tardy in taking up the responsibility. Really, it was more about a visit to the doctor last week in which my blood tests looked to be normal and my lungs sounded clear, both a big change from my last inspection. In fact he pronounced it quite amazing. His curiosity and our hopes thus piqued he ordered another full contrast CT scan. Reluctant to jinx the outcome of the scan, we were pretty quiet about the good check-up, hence no blog entry. A full contrast scan means I drink some stuff and then they inject me with dye to highlight my internal organs. That was done yesterday (Thursday) and Jan and I went in to get the results today. I’ve been feeling increasingly better these last couple of weeks and had fair confidence that the results should be good, but as the time drew near, anxiety grew. By the time the doctor entered the room, we were both ready to pounce. As there had been insufficient time for the images to be interpreted by a radiologist, he loaded the new CD into the computer and then brought up the scan from my time in the hospital last month, so we could view them together. Back and forth we evaluated different ‘slices’ through my chest comparing the view of the lungs and lymph nodes and in the process learned what most of my other major organs looked like. In my lungs, where there had been large, ugly blotches previously, now looked like what the doctor assured us, lungs should look like with just a spidery network of blood vessels. Lymph nodes in my upper chest that showed previously as oversize dark spots now were unperceivable. The relief that I feel, that my chest seems now to be clear, is literally a ‘new lease on life’ for me! The area down around my colon where we know that there are still problem nodes also showed them significantly reduced in size. The doctor said that these results were as if I had visited a (successful) faith healer.

I can’t thank you all enough for your prayers, good thoughts and positive vibes there is no doubt in my mind it made all the difference!!! THANK YOU.

The plan is to continue the chemo for the next five months, to maximize the chance of complete eradication of the cancerous cells. I will have my down weeks with the annoying side effects but after each treatment the side effects subside as the days pass. Ironically, I’m at my best the day I go in for my next treatment. Small price to pay for the chance to see my boys grow, share the love of my wife and feel the sun on my face. Next time you hear that old axiom “at least you have your health” appreciate it and think about what it means.

Tom

A very different week

Tom is having a very good week. He has more energy, much less nausea. We met with the Naturopath this week and Tom was very excited to hear her list all of his chemo side effects and offer a potential solution for each of them. We spent the rest of that day running around finding strange potions and powders, some of which poor Tom finds pretty nasty.

At this point the biggest daily problem is food, his taste buds are way out of whack. He has eaten so little over the last two months, that even when he finds something that tastes good to him he doesn't have much capacity. Tubby Tom has lost more than forty pounds. Two and a half months ago Tom was on Weight Watchers, now I'm pushing ice cream, cheese, pudding, oil, butter. Come on Tom, have some Tater Tots with ranch! Can I bring you home a milkshake?

Tom is even sticking a toe in the water of work. Monday we stopped by his office to visit the guys, hugs all around! It was great for him to see them and hear what was going on. Last night Tom had a long phone conversation with his new boss Kirk, they talked about Tom beginning to work on some projects.

More chemo next Tuesday.

Tom did come home Saturday. He's feeling much better, just mild chemo side effects. It was a very hard week, we're glad it's over and glad chemo is finally under way.

Tom went from a bit queasy, to... something a lot less pleasant, pretty fast yesterday. He's been working hard to control the nausea and what happens right after nausea, I'll spare you all the details. I don't want to speak too soon, but he seems to be improving. He is not going home today after all.

Unexpected!

Dr. Weinstein came in this morning, we told him how much better Tom was feeling. Tom's blood oxygen levels have greatly improved, (you didn't even know they were down), shortness of breath gone, pain way down. Dr. W. explained to us that even with pneumonia you wouldn't expect his lungs to sound better yet, it takes a while for the junk to clear out. I was watching his expression when he was listening, I'd call it puzzled. He said "that's unexpected, his lungs definitely sound better, not all better but better". We don't know if it's the antibiotics or the chemo, but whatever it is it seems to be working on his lungs and probably whatever was pressing on his nerves, causing all that pain. Dr. W says it doesn't matter which, it is it only matters that he's improving.

Now the chemo, luckily he had that good day yesterday, we got quite a bit of nutrition into him, because now the nausea has set in. He is getting good medicine that is reducing it from, "I'm going to throw up", to "not hungry and a bit queasy".

We're on schedule to go home tomorrow.

Thanks again to every one that has jumped in to help, driving kids, doing deliveries, taking care of critters and house. Also, thanks to everyone supporting us with prayers, good vibes, energy, incense, positive thoughts, emails, texts and comments. It's all a huge help and today it seems to be working.

Jan

A new day

Tom is a different man today. Nobody knows why and we don't expect it to last, but he has zero pain and hasn't had any pain med since 8:20 this morning. He has had the first infusion of chemo and the rest will continue to drip in until Thursday night. He has also had two doses of antibiotics and we can only hope, think, pray that something they've given him has caused the inflammation to go down and the pain will stay away. Still in the hospital, should be going home Friday.

Not the way we planned it

After all this withdrawal, nausea, pain, suffering, Tom is back on the Percocet and then some. He has been having terrible pain that we thought was part of the withdrawal. Last night was so bad, that we ended up in the ER this morning. A CAT scan showed that the cancer that remained after the surgery had grown and the pain was likely due to the enlarged lymph nodes pushing on a nerve. Tom has also been coughing a lot, so they did an x-ray of his chest and found some stuff in there as well. The Doc said that it's not a typical cancer pattern and hopefully it is just some sort of infection, so he'll be on antibiotics for a while. As long as Tom was here they decided to check him in, pump him full of pain meds and do the first chemo in the hospital. Often the fast growing cancer will respond fast to the chemo too, hopefully this stuff will shrink up quickly. The new Oncology wing at St. Vincent's is really nice, the rooms are huge and the nurses are great so far. They have a guy that makes milkshakes on request and it's way closer to home.

A happier ending to a pretty scary day.

A bit of relief

Tom went to acupuncture today. It made him feel much less crappy. Zoe was relieved and was finally able to get some sleep too.

Let's see, what's been going on? Tom went in for his port last Monday and that part went very well, no significant pain involved with the surgery or recovery. However, he was having severe upper back pain, so on Tuesday he went in for an MRI of his back. The MRI took 5 hours and laying on the hard table did not help his back. Having the results of yet another scan was comforting, nothing going on with his back, must just be muscular. The worst, on going part has been trying to get off the Percocet, I'm telling you that stuff is nothing to mess around with. Even though Tom has been taking a relatively low dosage for a relatively short time, his body is having an unbelievably difficult time withdrawing from it. He stopped taking it on Easter and found that he was having some horrible withdrawal effects. We did some research and talked to doctors and decided to taper off slowly, but every time he reduced his dosage at all, he was back into the withdrawal symptoms. At that pace he could feel like crap for a month or more, well into the chemo. After talking to the doctor some more, Tom decided to go cold turkey on Friday. The doctor prescribed some sedatives and nausea medicine and Tom has been trying his best to just sleep through it. After this, the chemo may seem not so bad.



Chemo starts Tuesday and yes, the beginning of the chemo side effects should overlap with the end of the withdrawal effects. I'm looking for Tom to be less than miserable around Cinco de Mayo.

Jan

Here's the deal. We've just kind of been floating in limbo, waiting for Tom to heal from the surgery and get ready to start chemo. His PET scan showed some involved lymph nodes in his chest. That information was very scary to us. Dr Weinstein, the oncologist, thought it would be difficult to get a needle biopsy of one of the lymph nodes because of their location in his chest, but worth consulting a radiologist, who said maybe.

Monday, Tom went in for an ultrasound needle biopsy and the Dr felt it was just too risky of a location. Wednesday we saw Dr. W again, he explained in more detail what the lymph nodes might be and felt it would be nice to have a biopsy, but not critical at this point. Since Tom needs to have a portocath inserted into his chest for his chemo, we all thought we should talk to the surgeon about getting a biopsy at the same time. So we did, today. Same reply, if necessary he would go in surgically, but at this point surgical risks outweigh the advantage of knowing what's in the nodes right away. Because of the lymph nodes in the chest, the progress of the chemo will be monitored sooner and more frequently, the assumption (hope) is that it is colon cancer in the nodes and not something else. If it is colon cancer the chest nodes will respond the same way to the chemo as the nodes in his abdomen. That would be shrink up and go away! We sure hope.

So, Monday morning, Tom goes in to get his portocath. A portocath as we understand it is a little box thing under the skin in the chest with a tube that goes into a blood vessel. That way they can draw blood and administer medicine without having to find a new vein each time. Common in chemo, it is just day surgery. Tuesday, we meet with a Naturopath that works with a clinic that does acupuncture and other supportive medicine to help mitigate the side effects from chemo. We went to the clinic last week and thought they were great as does DR. W and others we know that have used them. Wednesday, back to Dr. W to discuss chemo more and and schedule the start of chemo for the following week.

Many of you have been emailing us with support, questions and your own news. We love hearing from you and haven't been very good about replying, we feel like we're just starting to crawl out from under a big rock. Also, some of you keep putting food in our refrigerator, some store bought, much homemade and all truly appreciated. Some of you are transporting boys, cleaning the barn and house. Sister-in-law Susan sent some books that are really helping us find a way to find a positive attitude in this situation. The whole family even received a blessing from Tom's parent's Priest on Easter. Thank you all so much for every bit of support, positive thought and prayers.

Jan

Hey all, Tom had his PET scan this week and basically it was what we expected, a little remaining cancer from the surgery and happily no other organs involved. There were however some unexpected nodes showing up that the Dr. wants checked out, so there will be more tests soon. Over all Tom is healing quite well, and he's started trying to wean himself from the pain meds. He's begun walking up and down the road (the dogs are thrilled) and he spends more hours awake than asleep. His appetite his returning although Bourbon tastes like turpentine, wine like vinegar and beer like..... More news when we have some.

Jan

The Plan

We met with two oncologists in the last two days. The choice for was almost immediately clear to us both. Unfortunately the doctor that we liked was not the one with with the office closest to our house, with the granite and cherry furnishings, attractive staff and a candy dish at every desk. Both doctors came up with basically the same prognosis and course of treatment, but Dr. Weinstein just felt like the right man. After talking to him for a few minutes he had to leave the room, Tom looked at me and said, "I like him". I said, "Me too, damn". The office was fine, sort of a Best Western compared to the Hilton.

Tom is healing well from the surgery, his appetite and energy are increasing daily, and his pain is being managed. He does need to be all healed up before he begins chemo. So here is the plan; in two weeks he'll go in for a PET scan which will be his baseline. The scan should show if there is any cancer remaining, but it's possible that there may be some that doesn't show. He will also have blood work that day. Two weeks after that, he'll have a port placed in his chest that the chemo will be administered into. There will be a two-week cycle of chemo probably for six months. He'll go to the clinic where some of the chemo will be administered over the span of a few hours, then they will put on a fanny pack style of pump that will administer the rest of the chemo over the next forty-eight hours. Tom will then go back to the clinic and have the pump removed. The whole thing is repeated every two weeks. This is the standard protocol for colon cancer. We are told that the side effects from this chemo are not too bad and there are good medicines for many of the side effects. Also the doctor gave us the name of a naturopath that works with chemo patients.

Our hope, of course, is that at the end of all his Tom will be cancer free, and that is certainly possible. Tom's cancer had grown to a stage where a permanent cure is harder to come by. So there may be additional chemo, perhaps with different drugs or additional surgery down the road. We don't know when Tom will be returning to work, first he has to heal from the surgery. We are told that some people tolerate the chemo very well and are able to work through it. Time will tell. That is where we are at. It feels like a long stretch of uncertainty, but if you stop to think about it, life doesn't really offer much certainty. So we are going to try not to think about the uncertainty, we are going to fight the fight and celebrate the incredible support being offered by our family, friends, coworkers and community.

Jan and Tom

PS. We want all of you receiving these updates to know that you are free to pass them on to anyone that has expressed concern for our situation. We want people to have accurate information and not have to wonder what's going on.

Cheeseburger

Surgery recovery seems to be progressing nicely measured in many ways. The appetite problem, not my usual too much of, but lack of, seem to have been conquered, fortunately before I drove Jan nuts. In desperation when picking the boys up the yesterday she swung into feed them at Mickey D's and picked me up a cheeseburger. Those that know my eating habits realize that I haven't eaten at a McDonalds twice in two years. Anyway 20 minutes later I was feasting with my sandwich content as a clam! Well that must have gotten the ball rolling so to speak as a while later a walk out to the shop landed me nearly on the floor, a quick scurry back to the house landed me in the bathroom just in time! We have been able to trim back on the pain meds by substituting Motrin. I think this has help with how things taste and I have been getting better rest. Yesterday I was about to rest the entire day away. Tomorrow the search for the oncologist begins with interview of doctors both Monday and Tuesday. This doctor should see me through the rest of the treatment and follow-ups for years down the road. This doctor will be able to more fully explain where I stand now, and design the plan to wellness.

Tom

Today

Yesterday, Tom wrote his own update. I read it and sent it, but it just disappeared. Not in any folder, spooky. Tom's getting around the house pretty well and he even walked out to the shop yesterday. We have the visiting nurses once a day to do wound care. They are wonderful, not in a hurry, explaining a lot more than any of the doctors or nurses at the hospital, about the healing from the surgery and side effects from the meds. Side effect are interesting, Tom is having the most amazing dreams, last night he saved France! The unexpected side effect is that his taste buds are all wacked out. Everything has too much flavor or is spicy or is dry or to salty, not salty enough, too much pepper! How could I think he might want mashed potatoes, why do I keep offering him chicken? We finally had a nice discussion about it yesterday, had we not, you might have been receiving these updates from jail where I would have been facing murder charges.

Jan

Home is better

Although I was apprehensive about bringing Tom home, it has gone really well. He feels so much better at home. As we were getting ready to come home, The elves were scurrying about readying the house for the big homecoming. Becca went to Costco and Trader Joes, Catherine and Kris cleaned the house, Kim had already cleaned the barn. Michelle brought soup and Ken snuck another New Seasons dinner (really two) into the fridge. We will have a visiting nurse for seven days to change Tom's dressing. However, we still have to get it changed one more time a day. I have a lot of skills, blood and guts stuff is not among them. So Liz, after coordinating Tom's case at the insurance company and bringing home the boys, changed the dressing and showed Catherine how to do it. Thanks again to everyone that has been offering their support, moral, spiritual, physical, culinary, organizational, transportational, equine, canine, adolescent and anything else. Tom is enjoying have guests. Let us know if you want to visit.

Jan

Tom is feeling mostly better, except when he's not. This is his first bite of food in eight days. He had three bites and then he was full.

Jan

I'm getting kind of tired of these updates. Are y'all? Tom got a little infection in his incision and it's a bit of a set back pain and recovery wise. The infection is draining, (gag) and actually has cleared up since this morning. Another dose of antibiotic in a few hours and he should feel better tomorrow. The power is out at home, so I'm going to sit at my husbands bedside and watch instant Netflix on the laptop. Luckily, the boys gorged themselves on the burritos that Laura Foster brought over and they should survive a bit longer.

Jan

Too Much Information

Well there has been some gas, not a lot yet, but enough to earn Tom a whole tray of clear liquids for dinner! Oh boy! The big news is they took out his epidural and soon (this is the too much information part) his catheter will be removed! Now he's taking Perk-o-set? which is making him a whole different kind of stoned. Catherine is bringing the boys down to the hospital and we are all going to cram into this tiny room and and have family movie night on the lap top. Alert!!!! Alert!!! The cath is being removed right now!!!!!!!!!!!!!!!!!!! Way too much information!!!!!!!!!!!!

Jan

Tom Parties Down

Tom started out cranky today and then he got more cranky. After the doctor said he could have clear liquids he was happy. He had orange jello and tea. Whoopee! But the chicken broth was way to salty and made him over heated. Then he was cranky some more. Tom's parents came to visit and his dad was cranky. So I left. When I came back I gave him Coca Cola Classic. He never gets that at home and he became uncranky. Then Ivan and Michelle stopped by and he had a nice visit and had grape juice. Grape juice made him happy. Soon he will fart, then he can get rid of the tubes and wires and eat real food. Then he'll come home and people will need to visit so he won't be so cranky. Really, he seems on the mend and people keep telling me cranky is a good sign.


Jan

Again the outpouring of support is overwhelming thank you all so much. They took off Tom's bandage today and the incision is pristine, just a neat row of staples, no redness or swelling. I guess the next step is getting his gut going. That involves gum chewing, walking (which surprisingly he's able to do at the same time, not very fast though) sitting up and time. We thought we could speed up the process with lots of walking, so we had him doing turtle laps around the nurses station. The Doctor explained that time has more to do with it. Tom, exhausted from the exertion and in quite a bit of pain requested Valium and is now snoring away beside me. He's kind of cranky, having not eaten since Sunday and no food is allowed until the gut gets going. Over all, I think we are starting to ready ourselves for the fight.

Jan

Thank you all for sending us all your support, prayers, wishes and help. Aunt Bernadette told me that we would find that we have a lot of friends and friends we didn't know we had. She was right. Right now we are struggling with what this all means and how we will get through it. We are looking for strength, positive attitude and a fighting spirit. We haven't found it yet, but we're a tough lot, just not today. We have appointments to talk to 2 respected oncologists, in the next couple of weeks, we'd welcome any referrals if you have one. The boys have been strong, loving and brave, I'm incredibly proud of them. They're going back to school tomorrow. Tom is on a lot of meds, mostly sleeping. His recovery seems on track. He's not ready for visitors yet, but I've been sharing the emails with him. Please don't feel bad if you haven't contacted us, this list is for people that we think want to know what's going on. Feel free to share info with others and if someone wants to be added to the group, have them email me. I probably won't answer very many individual emails but I will keep you all posted. Thanks again for everything.

Jan

Hello to all, Thank you for your thoughts and prayers. The surgery itself went well, however the cancer has spread further than we wanted. The effected portion of the colon was removed, however it has spread beyond the colon Everything that could be removed was removed. The surgeon said that chemotherapy was necessary. He said that chemo is very effective and we have the name of a highly recommended oncologist. So, it looks like we have a very big fight ahead of us. We'll really need everybody's support and prayers.

Jan, Cooper and Rory

Hi all, Some of you know and many do not, I was diagnosed with Colon Cancer yesterday. Jan and I met with the surgeon today and feel much less scared than yesterday. Surgery is scheduled for Tuesday March 10th. They are going to remove the affected section of the colon and all the lymph nodes that are attached to it. Then they sew the two ends back together. I'll be in the hospital for 5 to 7 days and forgot to ask how long I'll be recuperating at home. We were told that according to the CT scan my liver appears unaffected and it doesn't look like the tumor has spread beyond my colon. They will biopsy all the lymph nodes and that will determine future treatment, probably chemo. As scary as this all is I can say at this point we anticipate a successful recovery. Thanks to everyone that has kept us in their thoughts and prayers.

Tom