January 5th Neurosurgeon Meeting
Chemotherapy January 6th, 2010
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Yesterday afternoon I met with my neurosurgeon. This meeting was designed to just get an opinion as to whether or not any surgical options existed to get ahead of the growth. First off I was able to confirm that the area of enhancement and the MRI is in fact tumor. Therefore I know we have to do something to address the problem. In speaking with her there is no way surgery can be performed without the result being hemiplegia. This obviously creates a huge dilemma. One of the prognosticators in terms of long-term survival is the extent of resection of the tumor. The less tumor that exists the more treatable it is in terms of chemotherapy and other treatment modalities. However, in my case I’d be dealing with a huge hit in terms of quality of life. I would be very dependent upon others, be confined to a wheelchair and likely unable to work or it least it would be difficult. Suffice it to say it’s a huge change in life. The million dollar question is how much time does this really add my life if I were to go forward with surgery versus stick with chemotherapy only. Additionally do I want my children and their last memories of me to be in a wheelchair unable to walk, play soccer, throw footballs, get around the house, etc. I really don’t know and that’s what we are discussing right now. It may happen anyway but should I roll the dice and make that happen overnight?
For those that have been following my blog, you know that I am an advocate of staying in today but when it comes to decisions like this you have to look at tomorrow and unfortunately you also have to delve into statistics to some degree. What is the success rate of chemotherapy? What is the success rate of operating on a recurrent glioblastoma in terms of longevity. All of that has to be balanced against quality-of-life. So we are praying about it, leaning on her support network and thinking all of this through. Through prayer, we are certainly hoping that we are not confronted with this situation and that in the first 30 days of chemotherapy I respond to it. The near-term strategy is to start a new chemotherapy which could be carboplatin or a new drug that I have not researched yet called VP 16. I need to speak to my neuro-oncologist more about this. In addition, I have three doses a DC VAX left. I will likely start using those. I’m also continuing to use Valcyte. After I’ve been on this cocktail of chemotherapy and other drugs for 30 days, I will have an MRI and we will see what the tumor looks like. If it’s shrinking that is great news obviously. Even if it’s status quo that’s a good result. If it continues to go in the wrong direction then we start getting down to the difficult decision. I will likely continue to chemotherapy for an additional 30 days after that then we will take another MRI. If I continue to respond to the chemotherapy and I will just continue that regimen, thus avoiding the decision regarding surgery. If it’s moving in the wrong direction then I have a big decision. We’ll cross that bridge if we get there.
In the end, it is about living in today but we have to be thoughtful about tomorrow and make sure that we are mentally and spiritually prepared for such decisions. Sometimes we can’t even imagine how we ended up in this position. It’s surreal. But we are and we have no choice but to accept or circumstances, trust in God and put 1 foot in front of the other. This is not easy at all. Again, I would be lying through my teeth if I told you this is in our worst nightmare. But we try to take it day by day, enjoy our kids, deal with the issues and live our lives. As we formulate more of our plans I will post as I can. I’m using some great dictation software now so I can basically just speak in the text is just laid out on the screen for me with very little corrections to make.
I humbly ask for prayer at this time. This is probably one of the most difficult periods for us. Yes, we’ve been through a lot but if it weren’t for the endurance we have developed as we’ve gone through this trial this would be like a ton of bricks falling on us but we have persevered and done the best we can and we will continue to do so.
Thanks again for all the support and all the prayers. I also appreciate all the e-mails I receive from so many people. They are so encouraging and mean a lot.
Here is my MRI report. What’s important to note is under impression. The observation of increasing enhancement that likely represents neoplasm is what I needed to know. Neoplasm in layman’s terms means tumor.
More soon…
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Mark, my prayers and best wishes are with you and your family. It is truly a tough decision to make. Ron is facing his own. If he qualifies for clinical trials, does he want to do that? Do the costs outweigh the benefits? If he choses to go back to a prior (and very toxic) chemo will it slow the cancer down enough to be worth it? What quality of life will he have? If he chooses to stop treatment all together, what can we expect? The doctors may have some ideas, but only God really knows. We need to PRAY. We need to SEEK the guidance of the Holy Spirit. We need to BE STILL and KNOW HE IS GOD. Only then can we find true peace with our decisions. God bless you.
Mark, I love the way you ended this truly uplifting update: “more soon”. I am a survivor of a meningioma–far less than what you have dealt with, but it is a continuing story. As a believer, I share your hope and know that for all of us, although we don’t know what the “more soon” will look like specifically, we can trust the One who numbers our days and knows the hairs on our head. The light He sheds along the way is truly all we need, as we walk with Him.
Praying,
Linda