What a Wonderful World

PET Results
Normal tissue in a PET scan shows up as a SUV (standardized uptake value) 1.0. At C4/C5 it lit up at SUV 7.5. Something is there. It’s not well defined meaning it did not appear to be any kind of Sarcoma. Dr. Rushing feels it’s probably Lymphoma. There’s an outside chance it could just be an infection but I don’t have any pain there which lessens those odds. The lesion is 1.3 CM (about 0.5 inches) in size which Dr. Rushing declared to be the “worlds smallest lymphoma”. So, next step is a biopsy to figure out what it is. Probably will be a CT guided small needle biopsy but Dr. Rushing wasn’t sure.

So the wait continues but I’m some what encouraged.

I’ve steered several folks here who haven’t heard how I landed where I am now so I figured I’d use a post to bring those folks up to date.

Cliff Notes Version

Neck/sholder pain in October. Steadily getting worse in December. Noticed then that I had no strength in my upper left arm. Finally to a doc in Jan. Sent to physical therapy (worked wonders for the pain). PT referred me back to the doc since it was so severe. LOT of scans. Bone spur at c5/c6, something at c4/c5. Surgery scheduled. Not fun surgery. More scans, it’s a tumor wrapped around the vertebral artery. Surgeon bails sends me to a new one. Sounds bad. 25% chance of brain stem stroke during the surgery. More scans. William Lu, a friend and neurosurgeon in Florida, says no way it’s a tumor but he’s getting outnumbered. Head to IU to see Dr. Rushing my sarcoma doc. Fortunate I didn’t let the surgery happen yet. Need to know what we’re dealing with. More scans. The posts below pick up from there.

Had a long winded version in progress. Maybe later.

My PET scan is scheduled for next Tuesday morning with the results on Wednesday.

Scanziety
Today I sat in the exam room like I do every six months these days (I’ll get to move to a year someday but not for another couple of years). Yesterday I had an MRI on my arm and a CT scan of my chest to see if the cancer has spread (the lungs and liver are the two most likely spots for me). The doctor would come and tell me one of two things. Looks good or it metastasized, here’s the plan to extend your survival (note, in my case the latter news is “usually fatal”). Of course the tension mounts and I try to remain calm. Then there’s the game when the door opens. Does he look like he has good news or bad. Steel yourself! Dr. Letson my original surgeon had this entrance down to an art. As the door swings open he’d announce “I looked at your scans and everything looks great.” Phew!

One time he open the door and said “I looked at your scans…Can I see your arm?” Instant panic. He saw it and quickly realized his error and declared “Oh sorry, everything looks good.”

It’s a brutal recurring event. Much more so for many of my friends who face much higher odds of their disease metastasizing than I do. For some it’s not a question of if, but when. This time it’s a bit more tense. I have a mass in my neck, or maybe just a soft disc. No one is sure yet but the mass/tumor crowd out numbers the soft disc crowd right now. An upcoming PET scan should clear that up (I hope). I’m hoping for clear scans so I can concentrate on figuring out if I have a mass in my neck or not. If I have mets in my lung or liver the odds of the tumor folks being right is depressing.

So I sat today thinking I’m once again facing my mortality head on. I’ll find out shortly if I can still plan on making my kids take care of me in my 90s or do I have to start working on making it to 46. As brutal as it is I think it’s a blessing. I’m forced to think seriously every six months about my life and how I’m living it. If I die this year, from cancer or a drunk driver taking me out on the way home one night, am I happy with how I’ve been living? Am I really taking part in the simple enjoyment of everyday life? Am I making meaning contributions to my family, God, friends? In the last several months? No. I’d lost sight. Thank God for this reminder!

So Dr. Rushing walked in finally. As the door opened he was looking at a piece of paper shaking his head. Panic. Then he mutters something about how hard it was to get hold of radiology.

“Everything looks good”

Besides the clear chest and arm scans today we discussed my MRI of the suspected mass on my neck. Dr. Rushing was pretty sure it was a mass but wouldn’t speculate much beyond that. He did confirm that I did the right thing by not letting the neurosurgeon cut before we had more information. So here’s the plan:

• PET scan is being scheduled. If it’s cancer the tumor will light up “like a Christmas tree”.
• If it is cancer then the next step is a CT guided core needle biopsy to get what kind of cancer
• From there decide if they can operate and get it off my vertebral artery. In most of the possible cancer types you don’t go in and cut some away and leave the rest. It spreads hematologically so you don’t want to spill any blood from the tumor.
• If it’s inoperable then decide on chemo and/or radiation to shrink it so they can operate
• Cut the beast out!

It’s all very confusing and I hope to hear from William Lu today who is having his nueroradiologist look at my images as well as from Moffitt who is doing the same thing.

On a plus side I’m mostly pain free now, when it gets painful I can usually find relief in 30 min or so, and have regained a substantial amount of strength in my arm (it’s still shockingly weak but the improvement is very noticeable). I keep telling myself that a tumor wouldn’t result in this big of an improvement.

So so far in the last month I’ve had 4 MRIs (I point north if I float in a pool), a Myelogram with CT scan, and a Chest CT scan. Each time I get hit with scanziety in a big way.

More here as I know it.