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.  

Wednesday, June 4, 2014

Update

Ted had an MRI today.  It was a follow up to one that he had two months ago.  We have not seen the oncologist yet, but we did get the findings in written form from the radiologist.  I think the good news is that it doesn't say that the "tiny foci of enhancement" has gotten bigger.  Glioblastomas are very aggressive, so the fact that the enhancement isn't being described as bigger seems like a good thing to me. Again, without speaking to the oncologist, which will happen on June 11, we won't know for certain.

The findings suggested, "Although no definite tumor recurrence demonstrated at this time, further follow-up in this region recommended." It goes on to say, "Further follow up recommended to exclude earliest changes of tumor recurrence."

There are a couple of sentences in the report that don't quite make sense.  I'm not sure if it's due to a lack of knowledge in "doctor speak," or if the guy has trouble writing sentences.  One sentence has us scratching our heads.  I will post it.  In case someone else can interrupt it, feel free to share.  Speaking as an English teacher, I just think it looks like it's missing a predicate.  You be the judge:

"Nonspecific tiny possible foci of enhancement about the left frontal tissue loss changes." Huh?
So, that is where we are today.  Pins and needles. More waiting, but at least it doesn't say that this thing is out of control.

Happy thoughts, happy thoughts, happy thoughts.
        

Saturday, May 24, 2014

Eight Year GBM Anniversary with a Hitch

It was eight years ago on Memorial Day weekend that Ted was first diagnosed.  Despite the fact we've lived with this cancer hanging over our heads, we have done our best to keep moving forward and live our lives with much joy and love. Unfortunately as this anniversary nears, Ted's last MRI had something suspicious on it.

He had a clean MRI in December, but when we got back from Arizona I noticed something strange.  He reached for our salt shaker and froze.  Out of the corner of my eye, I noticed his arm was extended, but he wasn't moving.  When I looked at him, he seemed to be dazed.  I asked what was wrong. He said he was trying to decide if he wanted salt or not.  Recently our dear friend, who has been GBM free for almost as long as Ted, has had a relapse. Her tumor is back.  She insisted we get him checked out, which I of course insisted too, so he had an MRI in April.

The results showed a "tiny enhancement" on the left frontal lobe.  His first tumor was on the right side.  At this moment in time, they aren't sure what it means, so he will be having another MRI on June 4 to see if there is progression. Since his first diagnosis, only once has there been something show up on his MRI that was somewhat scary, but this happened within the first year of diagnosis and it went away on its own, so all of these years we have seen only good results.

Ted of course isn't worried.  As a matter of fact. I had gotten so used to the good MRIs that for the first time, I didn't even read the results of his last one.  I am normally right on top of it, but when Ted got the last results (we always get them before his visit with the doctor) he told me all was well.  I believed him.  His doctor's appointment was during my work hours, so I couldn't be there. When he came back from the visit, he told me that he needed another MRI in two months.  I really scratched my head over that one.  Why? I asked.  He said that the doctor wanted a "fresh" MRI for her next brain consortium.  I thought this was very odd, so I asked Ted to show me the results.  I unfortunately read them on my way out the door to work.  I felt like I'd been kicked in the gut, and it took all of my strength not to turn into a messy pile of tears in front of my students. I honestly don't think he was trying to keep the news from me. I think he truly isn't worried and didn't think there was anything worth mentioning.

So now, until June 4 comes around, I live on pins and needles.  Part of me is happy to not have the full picture yet because that means the world is still spinning and I can go about my day as normally as possible.  I know that after June 4 our world could go spinning out of control, so right now there is still peace and I am enjoying that peace as much as I can.  We are about to take our daily walk and then perhaps go play disc gold.  It's just another day.   

Sunday, April 6, 2014

1648 Miles

1648 Miles and three months later, we have returned home to Vancouver, Washington, but not without an extremely stressful send off and nail biting first leg of the journey.

We planned to leave Friday, March 28, but my father became ill with pneumonia, the second time since November, so we delayed our departure until we were sure he was okay.  My father is a 75 year old powerhouse of energy, so when he gets ill, we all take notice.  He recovered quickly and they assured me that he was fine on Saturday morning. This took a lot of convincing though because I know my dad hates to make a fuss, and I was pretty sure he was calling me from a hospital room, fibbing about being okay, but hearing his voice and reassurances was enough for us to feel free to leave and salvage what was left of our mini vacation within a vacation in Carlsbad, California. The first stop on our trek home.
This not Carlsbad. It's Morro Bay.  Another stop along the way.

Our 18 year anniversary was Sunday, March 30 and we were determined to spend it in the Carlsbad Flower Fields, where we married (on a reality TV show no less-- and no it wasn't Bridezilla.  It was a show called A Wedding Story.)   But getting to Carlsbad proved to be tricky thanks to our singing and sometimes dancing stand up paddle board (SUP.)

Heavy winds in winding canyons nearly kite boarded us off a couple of cliffs, not to mention the loud and raucous noise the SUP made as it fought against the flimsy straps securing it to the top of our car.

These straps didn't work! 
Each time a heavy wind buffeted the car my stomach lurched.  My imagination can be large.  I had images of total SUP destruction. In my minds eye, pieces of paddle board were snapping lose from the top of the car careening into the unlucky drivers behind us.  Bodies were everywhere and lawsuits had us tied up in court for the rest of our lives.

The SUP Taxi saved the day.  All noise and movement stopped.  Not wind, nor rain, nor 80 mph speed limits could rip this from the car.   
As the SUP whined, our dog, KC joined the chorus.  She's not a fan of the car.  By the time we reached California, I was ready to chuck the SUP into the Pacific Ocean, but I had  high hopes that Southern California would have an answer to our surf board-y problem.   And in fact, it did.
A SUP taxi saved the day.  From Carlsbad to Vancouver, the ride was quiet, except for poor KC, who whined most of the way home.

Zoey.  The new pup trying to kill our rug.

How did the new puppy do?  Great.  She was so quiet, I asked Ted to check for a pulse a couple of times.  Apparently the hum of the engine puts her to sleep. But when we got home, exhausted and tired from the road she came into our house teeth first. Before our luggage was fully unloaded, she had identified, and in some cases destroyed, every precious, toxic or valuable object we own. She did this with no malice or anger in her heart. When the toothy rampage was over, she sat calmly, her left foot pointing left, her right foot pointing right, and her eyes, one of them lazy, surveyed the bounty.



The three months we spent in Arizona were the most relaxing, enjoyable and fun time we've had since Ted's diagnosis in 2006.