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