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