Sunday, February 17, 2019

Happy 66th!

It's truly amazing that we were able to quietly celebrate Ted's 66th birthday this week. He was 53 when diagnosed and I was a much younger 43. I'm still attempting to post some pictures! I may have to resort to my laptop computer. Not everything can be done on a tablet apparently. 

Monday, September 24, 2018

Cruising the Calm Seas

It has been a while since I last blogged, mostly because life has gone on, and we are busy living it.

Also, I couldn't get access to my own blog, thanks to rapidly changing technology and to some European Union rules. I'm not sure how this is going to work out, but I'm going to attempt to show pictures from our recent trip to Cozumel, Belize and Honduras, as soon as I figure out how to get my pictures posted!

It's amazing how much has changed on the Internet since Ted's diagnosis, almost 12.5 years ago.  Coming soon.. photos from our trip and advice and details about traveling with a disabled person who doesn't meet the stereotypes of what a disabled person should look like. 

Wednesday, August 24, 2016

An Active Year

Wow! It has been too long since I posted.

In the last six months:

Ted had his gallbladder out (January 2016) and recovered exceptionally well.  Better than I did! I experienced a massive body cramp that hospitalized me for four days.  Ted had a giant grin on his face and was crunching ice chips only two hours after surgery. He walked out of the hospital the same day and barely mentioned the surgery.
The Gallbladder Platter

Apparently his gallbladder was in very bad shape, but he didn't notice.  It may have to do with his perception of pain due to the brain surgery ten years ago.  Thanks to an evening of wine tasking and a particularly decadent appetizer, I now dub the Gallbladder Platter, we never would have known the angst his gallbladder was enduring.  The doctor was shocked that Ted hadn't come into the hospital screaming.  His only symptom was nausea and vomiting.

Fainting or Seizures? Ted collapsed at a neighbor's party on New Year's Eve. We were new to the neighborhood and made a memorable first impression.  He had very little warning and tried to stabilize himself by grabbing a giant Christmas wreath hanging on a wall near the dips and salsa.  Sparkles and pine cones flew upward while Ted went downward.  The house was wall to wall Christmas villages, and the medics managed to wipe out one of the villages with the gurney. We weren't asked back to the spring party.

Because he had just had an MRI, we weren't concerned that the tumor had returned, but seizures are common with GBMs. It's just that he had never had one before.  Or had he? These things always send the mind traveling backwards, analyzing every weird incident since his tumor was diagnosed.  There were a few other occasions I could recall over the years were he lost his legs and had less than graceful landings, but each time we talked to a doctor, they scratched their heads and blamed it on the tumor, or surgery or treatments. This episode was no exception, but now they thought it might be a seizure, so he was prescribed anti-seizure medication.  More medication isn't something he really wants.

 In May, he collapsed again. This time I was home alone with him on my way out the door to work.   I heard a sound in the back of the house and knew something was wrong when he didn't answer me.  I found him laying face up on our bathroom vanity, eyes open and unresponsive. My heart catapulted into my throat.   I called 911 again.  As we waited for the fire crew to arrive, he regained consciousness and mumbled that he wanted to stand up.  NO!  That's the last thing he needed to do, but he was determined, and have I mentioned he's a big guy.  I grabbed hold of his upper body, trying to assist him off of the vanity,but he leaned forward and started to fall like a giant tree toward me.  All I could do was fall with him and hope that I could break his fall.  I noticed a few hours later, when he was fine and sitting up in an ER, that my toes ached.  They were black and blue. I broke his fall.  

Thanks to an intuitive ER doctor, he was told he should get the Tilt table test. It's a test to determine something called Syncope, a fainting condition.   Sure enough, he fainted on cue during the test and we finally had a diagnosis.  He tossed his anti-seizure medication and was prescribed a glass of tomato juice every morning and salty pretzels as a snack.  Best prescription ever.
Santa Fe Selfie August 12-15 2016
Ten years post GBM: We quietly celebrated his ten year anniversary on Memorial Day Weekend, and I didn't post about it.  A part of me wants to forget any of this ever happened, but the four month MRIs are a regular reminder that a GBM is and always will be a GBM. I have gotten really good at putting it out of my head though, and Ted never thinks about it.

Sunday, September 6, 2015

Does a Positive Attitude Help?

Attitude is often discussed in cancer world.  For a while it was common to tell cancer patients that if they kept a positive attitude, they might be able to fight cancer.  At one point in time, it became controversial in breast cancer cases. Women felt like they were being forced to put on a happy face while facing a serious battle for their life, a stereotypical expectation of women. A coworker with breast cancer once told me that it really pissed her off when people told her to be happy.  She said it was as if people were blaming her for her cancer.

When Ted was first diagnosed, I didn't have any happy thoughts.  I had horrible thoughts. I took what the doctors said to heart and bawled for a year. Family and friends told me to think positively- that my thoughts would somehow change his outcome. They gave him a year to live, maybe less.  I couldn't see beyond the prognosis, and nothing was going to change my attitude. It's a good thing my attitude didn't have an impact on his outcome. Ted, on the other hand, never felt stress.  He never worried or cried or talked about his impending doom, but he didn't have a choice in that.  Once they removed the right frontal lobe, they took away his ability to feel stress.  He considers it a blessing.  It's like a constant drip of Lorazepam.

So does attitude make a difference? Either the attitude of the patient or caregiver? I've never seen any significant research that says it does, but  I do know that freeing my mind of the fear and anxiety, certainly made life a lot more enjoyable, and keeping active helped to block the negative thoughts, and when has having a positive ever hurt anyone?

Recently, I came across a wonderful blog by Beth Carlton.  She was recently diagnosed with a GBM and has been doing her best to focus on the positive. I love her voice and the attitude of hope she is trying to spread.  If you'd like to read another warrior's journey, click on this link.  Stay strong and try not to feel guilty for feeling like crap and not being happy.  Sometimes those days are hard to find, but do try to find a way to get out of your head every now and then.  Ted's ability to not stress has taught me a lot.
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