Shall I tell you about our Thanksgiving? It was actually pretty uneventful, considering we had 21 people in our small home – seven of those 21 were under the age of 10 – and one attendee has a brain tumor and had been taking twice the amount of anti-seizure medicine than he should have been. Instead of taking 4 – 250 mg pills of Keppra, he was taking 4 – 500 mg pills of Keppra – This is the medication used to prevent seizures. Some of the side effects, according to the NIH website (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001067/)
“Levetiracetam [Keppra] may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
- drowsiness [ yup – but not sleeping well]
- weakness [ yup ]
- unsteady walking [ yup]
- coordination problems [ yup]
- agitation or hostility [ a bit of that]
- dizziness [a bit]
- numbness, burning, or tingling in the hands or feet
- loss of appetite [- wasn’t eating well at all]”
He’s been off the extra dosage for the last couple of days and seems to be doing a bit better. If I can, I’m going to avoid having a brain tumor… I’d like to do without the side effects from any of the treatments/drugs my Dad’s undergoing/taking. Radiation, Chemo, decadron (a steroid that reduces swelling), Keppra (we’ve just mentioned that), Avastin, blood pressure medicine because the Avastin and decadron raise that, and a few others I can’t remember. Sitting down to breakfast or dinner with him is like visiting a pharmacy.
We are looking forward to next week, as Wednesday is his last radiation appointment. He will also finish chemo about that time…
He’s the kind of guy that says thinks like…
“I grew up in the San Francisco-Washington DC area,”
“Do you accept correct change?”
“And a hyperdermic needle!” – his response to the question “would you like a cup of coffee?”
“If you want gems, go to Tiffany’s”
As all Dads have, he’s embarassed me millions of times… And I find myself repeating his lines…
He sang “Daddy’s Little Girl” at our wedding – there was not a dry eye in the house…
One time I went to hear him speak at a presentation he was making – he’s a natural public speaker – and he got flustered ’cause I was there…
He’s been a devoted Pappy – since the boys were born, he’s commmitted to spending time with them…
He’s a voracious reader – he’s usually reading at least 3 books at a time…
He’s a faithful 49er and Giants Fan – He’s been a 49er Fan since their days at Kezar. I remember attending Giants games at Candlestick and Dad telling us all about Willie McCovey…
At work he’s on, and when he comes home, he’s a homebody…
He has some of the loveliest friendship…
And he’s so much more than this…
Hello family and friends,
I wanted to send an update, though I know my Dad is also planning on sending one. He is starting his 5th week of radiation. I think between that, the chemo, the avastin and everything else, it’s making him tired, spacey and somewhat unpredictable… or maybe it’s completely predictible. I’ve never known anyone with a brain tumor. We’ve created a calendar for him, for walks, rides to his appointments and more and getting him going can be somewhat challenging. One request that we have is to not let him get away with not walking and if he tells you something you may have to double check… example – today Lori was to take him to the hosptial for blood work and then they were to go for a walk. He told Lori he couldn’t be in the sun. I called the Cancer Center where he’s getting radiation and they apologized for his misunderstanding, as long as his head is covered he’s okay to be outside. It was quite a relief for him to find this out as he had been putting his energy trying to find shade.
Yesterday, my sister and I took Dad to radiation. On the way there, he kept commenting on the trees and the gorgeous display of the leaves and their changing colors. On the way home we decided to drive down McDonald Avenue – gorgeous with the gingkos bright yellow, contrasted with the orangey-red maples and dots of browns and greens of other trees. We savored the moment and took in the beauty as the car ambled down the street…
Tonight, my Dad asked me over to help with scheduling. I sat down with him to review who was coming over to help with morning walks, radiation, and afternoon walks. I had created a calendar using the carecalendar.org website and thought it was pretty self explanatory. The confusion was my Dad was trying to figure out, if he went to bed at 8pm (which I have NEVER seen him do), and he got 8 hours of sleep, he could go for a morning walk at 9am – he’s pretty slow moving and he’s taking a morning nap. But if he went to bed later, he couldn’t go walking til later, so we should try and schedule one person to be on standby from 8-10am and then another for 10am-12pm… he had a plan that if he was in bed by 8pm, we could call the 10-12 people to take them off the hook… Mommy Sue and I spent over an hour trying to convince him why this was an awful plan and why couldn’t he just have his morning walk scheduled like an appointment. It’s interesting how, and I don’t mean this in a bad way, how self-centered he is – he doesn’t have an awareness of how things will affect others.
Story number two of how crazy his mind is working…. We are hosting Thanksgiving this week… originally it was going to be 12 people, and now it is 21 – we have a small house. We have a wall between our living room and dining room that Lori and I have thought about removing. My Dad had the brilliant idea that we would take the wall out so that on Thanksgiving, he could see everyone at the table. Okay, it’s the Friday before Thanksgiving, we’re gonna find a contractor to do this, minimize the mess and not drive your daughter insane. Really Dad? He was adamant! For days! “Dad, wer’re not taking out the wall.” “But it’s going to transform the Thanksgiving experience.” “Dad, I don’t want to take the wall out.” “It’s happening! No more.” Finally, Lori and I figured out a way to move our furniture around so that we could have everyone in the same room. Dad was releived, and then said, “Okay, after Thanksgiving and before Christmas were gonna hire a contractor….” Oy!
On October 7, 2011, I received a call from my Mommy Sue that my Dad was again being taken to the hospital by ambulance – the second time in two weeks. He had been in the hot tub that morning and when Mommy Sue went to check on him, he was not responsive… She wasn’t overly concerned, as the paramedics said they weren’t going to use their sirens. Okaaaay… I called my sister at work to let her know, “What does not responsive mean?” “I don’t know?!” My employer said, “You can leave.” “No, I’m okay” I couldn’t leave because I was in shock… what does this mean? The worst of thoughts went through my mind… An hour later I was on my way to pick up my sister. We arrived and Mommy Sue was waiting for us in the Emergency Room. Mommy Sue gave us the lowdown on what had and was happening – finding him in the hot tub, paramedics getting him out, the nurse telling him he wasn’t going to be able to go home unless he could walk around, her comment “Wow, he seems like he’s on narcotics.” This comment caused her to order a cat scan… Having been updated, we were all ready to go in and see Dad. When we arrived, Dad was sitting in bed and he said, “I have a mass on my brain.” what? What? WHAT? A mass? What does that mean? They told you when you were by yourself? What? I tried to reel back in some calm… “Oh, a mass. I think they say that when they aren’t really sure…” We were soon enlighted… the nurse came in and when we asked “What is a mass?” she informed us it was a tumor… oh… okay… Later we were visited by the singing Neurologist Dr. John Cassidy and my old Dr. Christopher Barker. Now I think back at how grave their tone was, we were just so relieved to know what was going on with my Dad, I’m not sure I got it. They showed us pictures and explained what was going on – the pressure in the frontal lobes might make my Dad seem indifferent – ah ha, yes, now that makes sense…
On Oct 7, 2011, my Dad was diagnosed with a mass on his brain. This blog will be used by me, and perhaps others in my family, to discuss the journey we are all on with my Dad. I’ve posted updates on Facebook, sent family/friend emails keeping everyone apprised of my Dad’s condition, but I feel a need to share the other parts… the emotions, the stories, etc. I’ll be doing some catch up, since it’s now been over a month since his diagnosis and I’ll want to tell you about my Dad a man I admire and love so much. And if you know my Dad, please feel free to share your stories of him with me. Thanks for visiting. I hope you’ll be back.