I’m glad I have an iPhone. As I was ready to leave today for my MRI at 11am, I looked at my calendar. It was in there for next Thursday! Sheesh. I have a brain tumor – what’s your excuse?!
No big deal but thank you for all the prayers. Take 2 next week.
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My brother Shawn came into town and has been here over the past 5 days. It was so good to see him. As planned, now that I’m off work, I’m trying to spend a lot more time with family and friends. I was really sad to see him go but we will be having more visits. I wish we lived closer.
Here are a few great pics of Napa.
Medical
I have an MRI this Thursday. I’ll begin to see some Gamma Knife results (albeit difficult to see because of swelling) and we’ll be checking on the first tumor resection site and anything new of course. I’m continuing to have a CBC done each week at the lab just to make sure my counts are good.
I’m also talking with my neuro-oncologist about starting up the vaccine in about 2 weeks. I have 3 doses left (a dose consists of one injection into each arm) and we’ll use them in a booster fashion – every 2 weeks. Pulling out the stops on the rest of the DCVax. Avastin and VP-16 are the other two players in the plan along with valcyte. Yeah! How’s that for a brain tumor cocktail….post-gamma knife! The positive is I’m more used to VP-16 so side effects are spread apart. We’ll settle on everything after the MRI.
I’ll post info about my MRI later this week.
I’m feeling at peace with things. Getting away helps but a lot of prayer lately has helped tremendously. I was meditating on Proverbs 23:7 today. ”For as he thinks in his heart, so is he (Proverbs 23:7, NK). I sometimes read the devotionals on Joel O’Steen’s site and this piece asked the question, “do you ever stop to think about what you’re thinking about?” The Bible tells us that what happens on the inside of us - our thoughts, attitudes, and motives are more important than what happens on the outside in our actions. Jeremiah 29 tells us that His thoughts are for our good. His thoughts are for our peace. His thoughts are for our victory!
The entire goal of course is to align our thoughts with His thoughts by meditating on His word.
Cheers,
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I don’t have a lot of time to write right now but we had a great time this weekend on her trip with Aidan. Here is a good series of pictures that is representative of what we experienced. It was a great memory for us. Our cabin was perched on a hill so my legs were worked hard. PT this morning.
We hope you enjoy the pics. Added a few more.
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I sure need to remember this. The last four or five days I have allowed myself to stray from stable ground into the unknown and dangerous territory called tomorrow. In addition, and equally dangerous, I’ve been thinking about the past, most notably my job, “how it used to be” and other aspects of life before brain cancer.
I have written a lot about how difficult different points of this journey can be. Those of you on this plight know from your own experience. I knew that this juncture would be difficult (leaving my career and adjusting to home full-time) but I admittedly under-estimated just how difficult it would be to leave my career in the past, keep my feet firmly planted in today and make a smooth transition.
To give you a view of some of what’s going on and what I’m praying about, I just really mourn the fact that all the work to reach that certain “position in life” is over or has seemingly culminated – at least in the environment I have enjoyed for so many years. If we are to reach our goals, all of your drive, perseverence, goal-setting and ability to capitalize on opportunities must come into sync and so much more. Only then will we reach various milestones. Moving to Sacramento was a significant milestone for us. Being close to family being our first objective, securing a position that was perfect for me and being blessed with the lifestyle we have been able to enjoy has been amazing. We were blessed in Orange County but being in Sacramento w/family is all we wanted for the kids. About nine months after we moved was when I was diagnosed and we wondered why. We all wonder why, don’t we? And then I accepted it and faced it and thought “why not?”
I slipped back into it. Over the last three days I once again wondered why. This is old ground! Why on earth am I churning through this again? These are the trappings of yesterday. If you’ve read my posts, you know why I can’t work just as much as I do and the reasons that I’m doing this – my aim is 100% correct – God and my family all know this. Yes, I was passionate about my career and this is a huge adjustment for me but it’s the road that God has placed me upon. But leaving it behind is…..hard.
You see, I know that living in the past veils today. It’s akin to putting on one of those old movies that has lines and squiggles and out of focus scenes in it that blur today’s experiences. This such a difficult concept in practice. Yesterday holds many wonderful memories and also trials and adversity. They are what shape us and how God has planned our lives. Worrying about tomorrow chips away at my trust in God and also veils today but in a very different way. If I’m in a vulnerable place, worrying about things like finances, my children and their education, their financial future, all realistic given my circumstances – I have placed it on my shoulders, not in God’s capable hands . God’s big enough for all of this. Don’t get me wrong. There is a very human component here. For me there is nothing wrong with mourning or grieving my career that I am forced to walk away from because of my health. However, when I begin to lean into those feelings and they seem to overtake my day, that is when I know I have been knocked off-center. I’m sure the barometer is different for everyone.
So where does this take me? It takes me full circle back to today. Living in today because it’s the day He has made and it’s what we have. It’s all any of us have whether we have leukemia, brain tumors, or perfectly healthy lives. After praying a lot one verse stood out:
Romans 8:5 says: For those who live according to the flesh have their outlook shaped by the things of the flesh, but those who live according to the Spirit have their outlook shaped by the things of the Spirit
This is about faith, hope, strength and continuing to push the best I can. The disease may be beating me physically but it can never take who I am, what I have accomplished and will accomplish together with God and the undying love I have for my wife, children, family and friends. It will never do that and cannot ever do that – to any of us.
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I’ve quietly been upgrading the blog software behind-the-scenes. I am now beginning to add more functionality such as making the blog accessible from blackberries and iPhones as well as adding small improvements such as threaded commenting and the ability to share posts through more of the social networking sites.
As for the mobile application, as with many it’s a scaled-down version of the blog. I can post to it from anywhere and readers can read the posts, comment on a post and use the contact form to contact me. All of my research is also there.
Here is a look at a few of the blog screens on an iPhone:
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First off, here’s a freaky image! I want to be this next Halloween! This look at brain anatomy is somewhere on my blog but I thought it would be worthwhile to include it in another post.
This really explains the delicacy of the primary motor cortex which is exactly where the two tumors I have are located. The original tumor that was first discovered in January 2007 has primarily affected the area at the top – functions such as the arm, trunk and foot. The second tumor that was just discovered several weeks ago has significantly affected my hand and arm which makes sense if you look at this on MRI.
This diagram is blown out into other diagrams. For example you can find a diagram that just focuses on the face. It’s amazing.
In terms of Gamma knife, the swelling in my forehead has subsided. It basically drops down from your forehead to your eyes and [...] Continue Reading…
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A very quick post and some pics regarding today’s Gamma Knife surgery. First, everthing went perfectly and it was successfully completed today. A long day it was. We were there at 7:30am and left at 2:00pm. I will get into more details later about the process (this is #2 for me) I thought it would be helpful for some to see pictures of the actual prep involved in Gamma Knife - the prep consumes most of time.
Warning for the squeamish – some of these pics may not be for you. After all, they are screwing a device to my head to render it immobile while receiving high dose precision radiation from the machine:
More to come later but wanted to quickly thank everyone for all the prayers.
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Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!
I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our [...] Continue Reading…
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I’ve now completed my second week of using VP-16. I’m now starting to feel the cumulative effects of this chemotherapy. It’s somewhat like temodar but for some reason the side effects are felt more consistently. With temodar I would feel nauseous in the morning but it would subside by about 8 AM. With VP 16, I’m beginning to feel nauseous most of the day. My routine has been the same as it was with temodar but I am folding in more zofran to address the nausea. I wake up just not feeling good but it goes on into the afternoon.
I’ve always stated that this blog is real meaning it’s not candy-coated. I do my best to share with you as honestly as I can - the good and the bad. The last two days have not been so good for me. I’ve been feeling sick, fatigued and a a bit down primarily [...] Continue Reading…
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Over the next week or so I will be performing an upgrade on the blog. If the blog is inaccessible, seems to lose some of its features or is sluggish just know that it’s because there is work being done behind the scenes. I am also pondering changing the entire look and feel of the blog and making it much simpler. Making it more simplistic I’ll allow me to have an easier time with it moving forward which I think is going to be a better situation for me.
I wanted all of you know.
God bless
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