Hi everyone! I again have to thank you all for so many wonderful messages of encouragement and support. The many, many personal prayers and Temple prayers are so very appreciated! I cannot thank you enough.

I was able to pay a visit to my place of work yesterday, the Urology Clinic at the University of Utah. It is so wonderful to be treated like family by my co-workers. The hugs and expressions of genuine concern and care are cherished. Everyone there refueled my energy cells.

While there, I took the liberty to look at my PET scans, MRI and CT scans and then got the bright idea to use my digital camera to take a couple of pictures that I could share with you so that you have an idea of what is going on. First, on the left here is a general image from the second PET scan that I had. A PET scan is a combination of nuclear medicine and CT imaging. You'll see a a large football looking thing in the area if my right arm pit (the picture is as I am lying on my back and you are looking down on me). This is the tumor. I has grown some as I reported last time. It is bright in color because the cancer cells are very active and the radioactive stuff they inject is drawn to areas of high cellular activity. Other areas that light up are the heart and kidneys. You can also see that I have a pretty significant scoliosis. That goes well with my several herniated disks that I have nursed for years.

This next image at the left is another view of the PET scan at a different level in my body which still shows some of the primary tumor in my arm pit but this view also shows the lesion in my spine that is now the latest development of the cancer progression. It kind of looks like a miniature tree there in the middle of my spine.

I am sorry that these are not better images, but I did simply point my camera at the screen and shoot the picture with my fingers crossed. Not bad I'd say.

Even though there are lesions in my lungs, they are very small and scattered mostly in the left lung field. Only one was viewed in the right lung. I couldn't get a good image of them with my camera.


This is the last PET scan image I'll show you today. This is just one more image, but is a little closer and at a level where you can see the tumor very well. It is close to my ribs, the scapula and in other views, the upper arm bone. The lugs are the big black areas because they are full of air. In the middle of the lungs, you can see part of the heart.

This stuff is pretty fascinating. The pink/orange color is how the computer imaging displays the radioactive stuff flowing through my body. Again, the active cells show more color. The yellow/white area in the tumor is the most active area in my body.



Now, here is an MRI image. This is totally different than CT or PET scans and I am really lousy at reading them, but I do have a good idea what I am looking at in these images.

First, this one on the left is an image through my body from the left side, looking towards my right side. So, the left of the picture is the front of my chest, the right side of the picture is toward my back. It's kind of like someone cut me from top to bottom and laid me open to look at.

In the center of the picture is a globular mass. That is the tumor. This picture is right through the middle of the tumor. It looks pretty complicated to me.


This is the last image I took to share with you. Again, this is an MRI image. This time from the front. All the way to the right is a big dark area, this is my right lung. It's black because it is mostly air. Moving left from that, you can see some rectangular structures kind of stacked on top of each other. These are my ribs. next to that is the tumor again. And then to the left of that would be my right upper arm.

I am no radiologist so I can't offer any definitive opinion about the nature of the tumor. I can only go by what I read in their reports and what my docs tell me. As I reported on my last post, the tumor had enlarged some and the lesion in my spine had increased in size as well.

I'll be starting radiation therapy this Thursday and I look forward to getting some significant results from that therapy. I'll keep you posted on the details of that experience.

Thank you all again for all you do. Your messages, prayers and everything else are sincerely appreciated. I have no way to repay anyone except to say thank you from the bottom of my heart.

Jim

Radiation Oncology Visit

What wonderful family and friends I have. Thanks to all for your wonderful posts here and your personal e-mails. I so appreciate the prayers, encouragement, love and hope.

As was posted last week, the news wasn’t great. Discovering that the cancer has spread to my lungs and to my spine was a little disheartening for us. This complicates the treatment and prolongs my recovery. I would so like to go back to work.

We met with the radiation oncologist yesterday, a very wonderful lady by the name of Dr. Hitchcock and her resident, Dr. Chen (yes, another Dr. Chen). After their exam and questions and discussion, I was scheduled back in the afternoon for another CT scan of my chest. This one was for mapping of the tumors they are going to treat, the primary tumor under my right arm and the lesion discovered in my spine.

The process was fascinating. I undressed from the waist up and was asked to lie down on this pillow looking device. The pillow was very warm and began to expand up around my head and arms. They determined that they want me to lie on my back with my arms above my head for treatment. This puts the primary tumor in the best position for the radiation treatment. This pillow thing filled in all the space around my head, shoulders and arms and then began to harden to make a mold of me. I discovered (by asking lots of questions) that this pillow device is filled with a substance very similar to the expanding foam in a can that I have used many times to fill cracks and gaps and such. You know, the stuff you buy at Home Depot. Anyway, it was a pretty cool experience.

Once this mold had hardened sufficiently, I was run in and out of the CT scanner a couple of times as measurements were taken, then a gentleman called a “Dosimetrist” came into the room with the technicians as measurements were taken. The Dosimetrist is responsible for calculating the dose of radiation.

There were laser sights on the walls and ceiling that projected target lines on me. The technicians used magic markers to draw plotting targets in various places for both tumors. Once all of their calculations were finalized, they tattooed me (yes, permanent tattoos) in the center of each of the targets. These tattoos will now serve as the guides, as does the mold, so that I am in the exact same position for all of my radiation treatments. They keep the mold for my use every time. They tell me that they have a big room where they store them for all the patients. Pretty cool.

So now, they have to do more calculations and such. I am scheduled to return next Wednesday for a dry run simulation to see if all the calculations and measurements are correct. If so, my treatments start the next day (May 1st) and go for 25 days, Monday through Friday.

If all goes well and no further treatments are needed, there will be a couple of weeks of calm down time and then surgery on the primary tumor. The radiation messes with the skin’s ability to heal well, so the surgeon wants to wait 2-3 weeks after radiation before operating to that there will be less issue with wound healing. I appreciate that!

Finally, once all of that is completed, the plan is to return to the oncologist to discuss additional chemotherapy for the lung lesions. I asked about radiation therapy for the lungs. The response I got to that question was that irradiating lungs isn’t a good thing. I guess that makes sense. I do like to breathe.

Oh yes, thanks to those of you with excellent advise about the insurance company issue. I contacted them Tuesday morning and after being transferred from customer service to a policy “specialist,” I discovered that the hospital had submitted a “corrected” bill for the date of service. So, the insurance company “took back” what they had already paid on the claim for that service and they were reprocessing the claim. Of course, the statement they sent me didn’t say that. It simply stated that the $5,218.06 was not covered and was my responsibility. I suggested that they consider including a little more detail in their memo in the future.

God bless you all!

Jim

No More Chemotherapy, For Now...

Hi folks! Here's the latest update. There is some good news; no more chemotherapy, for now. I had a CT of the chest and an MRI of the tumor last Thursday afternoon. Patti and I met with the oncologist and the surgeon that is the head of the sarcoma team here at the Huntsman Cancer Institute.

The bad news is this. After two rounds of chemotherapy, the tumor is larger. About a centimeter larger in length and width. Additionally, I had a PET scan the day before I started my first chemotherapy treatment. That study showed some lesions in my lungs that were described as being "to small to classify." These were not present on the original CT of my chest done on 2/13/08 and so we were watching them. It appears that some of these lesions have increased in size and one even disappeared. Also, early on, a 7mm lytic lesion was observed in the body of my T9 vertebrae. This has now increased to 9mm.

The word we got today is that my sarcoma has most likely spread to the lungs and the spine and as I already said, the chemo did nothing to help. I am scheduled to meet with the radiation oncologist on Wednesday morning. The plan is to treat the tumor (and presumably the spinal lesion) with radiation therapy for about a month. This will cause some irritation and edema. The surgeon will have to let this all calm down for a couple of weeks and then plans on doing surgery to remove the tumor after that. No specific time periods other than that have been offered. It is still a lot of wait and see how it responds type of approach.

One of the residents explained it quite well today. He said that sarcoma in adults is rare enough that treatment plans are somewhat behind as far as understanding how to approach it compared to many of the other more common cancers. That makes sense to me.

Finally, after the surgery, there is likely to be more chemotherapy. I have a tube coming out of my chest called a "Hickman line" that was passed directly into a major blood vessel, a more direct route for chemotherapy. I get to keep it and care for it for another couple of months. I am so thrilled.

Additionally, we are now starting to have issues with the insurance coverage. We received notice that a bill of over $5,000.00 for the original surgical open biopsy (for diagnostic/identification purposes) hasn't been covered by the insurance and that they are telling us that it is our responsibility. Oh joy. I love insurance companies. So, now I get to deal with them. I was hoping for smooth sailing. So far, they have been great. Hopefully, it is some clerical error.

Please know how much I appreciate all the kind thoughts, prayers and well wishes. It means so much to me. Thank you to all. Please keep us in your prayers.

Jim & Patti and family.

Onward

Hello everyone! I am so pleased and thankful for the response to this blog. Your comments and encouragement are so appreciated. I am especially thankful for all the notes from my friends in the BYU 53rd Ward. What a blessing. Thank you! I served at the Bishop (ecclesiastical leader) of the BYU 53rd Ward for a little over 3 years and had such wonderful experiences there. Thank you, thank you, thank you!

I was discharged from the Huntsman Cancer Hospital just about a week ago, last Tuesday to be exact. I haven't had much problem with nausea and vomiting, although my digestive system is far from normal. About two weeks after my first chemotherapy, my hair (not that there was much to start with) began to fall out in handfuls. After a few days, it stopped and left me with kind of a stringy mop. One of my wonderful co-workers at the University of Utah department of Urology, took pity on me and made me a hat with dreadlocks to cover up my new found thin hair. I love it!I expect the rest of this hair will fall out at about the same time, two weeks after chemo. This will most likely, leave me quite bald. Oh, one up side to all of this is that I don't have to shave. My beard is gone! Wow. I've been shaving since the 7th grade. This is great!!

The most challenging aspects so far have been the profound fatigue and lack of stamina. I have found it a slight frustration to be so tired as to only be able to get showered and dressed and then to have to sleep all day to recover. That is improving slowly.

Here are some more pictures. Thanks for all of your encouragement and kind thoughts. Your prayers are so very much appreciated.

To the right here is a picture of my oncologist, Dr. Lei Chen (far right) and the group of interns, residents, pharmacists, etc. that visited me a couple of times while in the hospital. I feel very well cared for while there.

The picture below is of my nurse Ann (on the right) and a student nurse that cared for me the first couple of days back in the Huntsman this trip. I so appreciate their good care!

The plan now is to go back to the Huntsman on April 21st for my next round of chemo. In the mean time, I am scheduled for a CT of the chest and then an MRI of the right arm pit on the 17th of April. I have an appointment with Dr. Chen on the 21st prior to admission to discuss results of these tests and what is in the plan to follow that. The Sarcoma Team will be meeting on Monday morning to discuss everything before I have that appointment. I am looking forward to getting on with whatever they have planned.

God bless you all. I appreciate your kind thoughts, encouragement and prayers. I'll wright more when more happens.

Jim