Sunday, September 14, 2014

Good News!

Ted's oncologist told us that whatever the white stuff is on his MRI, it's not cancer.  Great news. They met with the brain consortium again and a panel of doctors reviewed it again.  There has been no change,so that's a really great sign.  We will have one more MRI in December before we leave for Arizona, mostly because I want peace of mind while on vacation.  After that, he can go back to the six month MRI routine.  They still think the anomalies are vascular and might just go away.


Ted teaching tai chi on Saturday, September 14 at Menucha in Corbett, Oregon
 In the meantime, we have been very, very busy.  We are taking East Coast Swing classes, kayaking and paddleboarding.  Ted does his tai chi classes and last weekend we went to a tai chi reunion where Ted instructed one of the session.  Today we kayaked and paddle boarded with our friends Jen and Chris.  Jen is fighting her GBM for the second time and is making the most her time.  She's feeling energetic and waiting for her next MRI.  So far so good.

Saturday, September 6, 2014

Cure for workitis

Ted's next MRI is September 8.It's 8 years and 3 months since his first diagnosis.

The last two weeks have been jam packed full of adventures.


August 20: Trip to ER at 10:00 p.m. Ted started taking nonsense and running into walls.  I asked him if he had taken sleeping medication, and he adamantly said "No!" So I took him to the ER. Running into walls and speaking jabberwocky is never a good sign. He vehemently didn't want to go, but I felt compelled to do so. 

Two hours and a CAT scan later, he suddenly remembered he had taken Ambien. Between the fact that Ambien directly affects memory and the fact that the memory part of Ted's brain is compromised, the mystery was solved and a lesson learned. We made a pact to always let each other know  if one of us takes a pill that might alter moods, we must tell the other one.  Actually, we had that pack, but he forgot. 

Ted- always happy to be alive

On the upside, we got a Cat scan out of the deal, which said everything looked normal. Still waiting for the September 8 MRI, as they are more detailed, but it's nice to know the Cat scan is good.  

Interestingly, the radiologist who read the scan told the ER doctor, "Hey, I know this guy.  I've seen his MRIs and scans for years."  For those of you just starting this journey, I hope you find comfort in that.  

Chris and Jennifer Lacamas Lake Sept. 2014 

Kayaking and Paddleboarding with another Brain Cancer Survivor and Her Husband

Our friend Jennifer was diagnosed a year after Ted with glioblastoma Multiforme (same cancer as Ted's). Her D-day came in October of 2007.  Ted was diagnosed Memorial Day, 2006.  They had the same surgeon and same treatment: surgery plus radiation and Temodar; although, she only stayed on Temodar for a year and a half and Ted stayed on it for three years because he was using it during the trial period.  Once Jennifer heard that Ted probably would have been okay to go off the drug after the first year, she opted to discontinue Temodar.   Both Ted and Jennifer have been doing exceptionally well, but last April, Jennifer's tumor came back, and Ted had an unusual spot show up on his MRI about the same time. Jennifer's was definitely the tumor returned.  She had surgery immediately and began Temodar again.  Radiation is a one time deal with brain cancer, but happily, Jennifer's last scan was good.  The Temodar is holding.  

Ted and I Lacama Lake, September 1, 2014 
Monday, September 1, 2014 Lacamas Lake, WA 

To celebrate, we went kayaking with Jen and her husband Chris on the last two days of her chemo, in early September. She was a true champ.  She said she feels great.  This means a lot because she had a very difficult time immediately following her surgery.  She was confused and had constant seizures. At times, she didn't recognize Chris. So seeing her out there last week, kayaking her heart out and feeling great did wonders for us all. 

We plan to go kayaking again on Tuesday and have a couple of camping trips planned as well.  Chris and I both agree, as spouses, that it's best to keep busy, so we continue to plan our adventures.   Camping is next on the list!  I guess Jen is a great camp chef.  I am looking forward to sleeping on the ground, eating Jen's chef specials and living in the wilderness!   

 

Fun times with the soccer pros

Erin McLeod and Ella Masar 

To add more adventure to our summer, we just spent three days with our niece and her teammate.  They both play for the Houston Dash.  Ella Masar, our niece, is a world class professional soccer player who has played around the world and for several US teams.  She and her teammate, Erin McLeod, another pro player and a two time olympian and three time World Cup goalie for Canada, just spent the last three days with us, forcing me to take a break from never ending work. We ate and drank a lot.  Thank you ladies for reminding me how to have fun.  Ted never needs reminding.

Their visit began with a trip to one of the most stunning waterfall parks in the world, Silver Falls, Oregon. A gorgeous park filled with lush forest and cascading waterfalls.  Ten minutes into the journey, we found out dogs weren't allowed.  Oops.  Too bad their website told us otherwise.  We brought Erin's dog, Max, and our crazy mutzke, Zoey.  Dogs were allowed above the trails but couldn't go down to the fun trails, so Ted took first dog watch at the top of one of the trails. This particular waterfall was only a ten minute hike off the dog trail. 

The plan was to see the fall, come back up the trail and take the dogs on to the next waterfall along the dog friendly trail, leaving someone else in charge, but before the day even began,  I decided to slip on a wet rock and ruin the day.  I was videotaping at the time, but the image begins with a beautiful shot of a waterfall and ends with my niece standing over me asking me how I was.  Pretty Waterfall Video before I fell 

How was I? Ready to throw up.  Not a happy moment, but it didn't ruin the day, just my fingers and wrist.  If you are going to get injured, make sure you bring a physical therapist, and two professional athletes. They know what to do.   Ice and a t-shirt solved the problem until we got home. My brace is working out well.

At Enso after the waterfall fall. Notice the wrist brace?  If you have a good computer, you can see the blue wristband with a blue bruise. Not my proudest moment.  

Then it was time for dinner and wine tasting.  We visited Enso urban winery and followed up with the Bollywood Theater in NE Portland.  The FOOD WAS FABULOUS.       





Wednesday, August 6, 2014

Busy Loving Summer

Except for the extreme heat, and Ted's iffy MRI results two months ago, we've done our best to enjoy the beautiful scenery in this part of the world this summer.  This photo was taken three weeks ago during a seven and a half mile hike at Lacamas Lake, Washington.




Last Sunday, our niece, Ella Masar, a professional soccer player for Houston Dash, came to Portland to play the Portland Thorns. The day was hot and the train ride home turned into a longer ordeal than planned, but it was great to see Ella play.


 I don't plan to take the night train again.  There was an hour delay, probably due to heat on the tracks, that left us sitting in downtown Portland at 11:00 p.m.  A cement wall provided front row seats to Portland after hours.  Skateboarders, homeless people, cops and self proclaimed entertainers went about their nightly routines. A woman wearing a black cocktail dress, straddling a white mini bicycle serenaded everyone within a half mile radius with off key, homespun songs that included lyrics like, "You put your hand in my sweater hole."  Lucky for us, she boarded our train and sang her heart out, posing for selfies. Other than a guy with a beer can, she was her biggest fan. Twenty minutes into the trip, she exited the train, her drunken fan in tow. Too bad for him, she hopped the mini bike and pedaled off into the night.


Sunday, June 22, 2014

Oncology Limbo

Every two months, a group of physicians, with a variety of expertise in oncology, gets together in our area. They examine the MRIs and CT scans of cancer patients. For the past eight years, Ted's oncologist has used his MRI as one of the "good" examples.  For those who aren't following this blog, here is an update. 
Sitting on the patio enjoying the jasmine. 6-22-14
 Shortly after we returned home after a three month stay in Arizona, Ted had a strange occurrence. He reached for a saltshaker and froze. His arm was suspended about six inches above the table and he didn't move. I immediately freaked out. I asked him what was going on and he said he couldn't decide if he wanted salt or not.  Freaking out is the byproduct of living with this incurable and aggressive form of brain cancer.   I called his oncologist. Even eight years of good MRIs, doesn't put him in the clear.  

He immediately got an MRI.   It was two months earlier than his regular six month journey into the tube and it showed something suspicious. His oncologist shared the scans with the brain trust, and they couldn't say whether it was the tumor returning or not, so they suggested he get another one in June, which he did.  The last I reported was what I got from reading the lab report, but I haven't shared what he latest brain trust has said, mostly because I've been swamped with work and there isn't a lot to tell at this point. They still don't know what the faint white spots are, so they have suggested he get another MRI in August.  His oncologist said that they are all baffled.  Their best guess at this point is that the mystery spot are vascular, but when she said she asked them what they meant by vascular they shrugged their shoulders.  

She said the best we can hope for is that whatever it is fades and goes away, but that we need to stay on top of it because these things can "blow up quickly."  I hated hearing that, but what can we do? So we wait.