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