Update – Treatment 17 of 33
Chemotherapy August 22nd, 2007
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I have completed radiation treatment 17 of 33 so I am officially more than halfway through this initial course of therapy. Of course the chemo is daily as I have mentioned. Same side effects as I have mentioned but they are getting better. The hair loss is new! Everywhere the beams enter my head (they refer to them as “ports”), I am losing my hair. Right now, the right side of my head, in a patchy spot about 4″x4″ is bald. Oh well! I really don’t care. Throw on a cap and go. The fatigue is getting a bit better as I’m out and walking and keeping as active as I can. Weight-wise I’m maintaining pretty well – staying right around 170# which is the right weight for me. Labs are coming back fine in terms of red blood cell count as well. The primary concern there is that chemo has a tendency to drive that count down. Since red blood cells are what carry oxygen from your lungs to the rest of your body, this can drive your fatigue up much much further if it dips. Mine is looking fine. Much of this I just attribute to nutrition and the supplements I am taking. I will list them here in another post but there are quite a few – Omega 3s, anti-oxidants and some others that are key for brain tumors.
I also received a copy of the results from my 1p/19q gene deletion test – it was really academic. This is just a test that is predictive of how effective certain chemotherapy will be in some cases depending upon how this test comes back – it also can help to confirm the original pathology. In my case, there was a “deletion” of the 1p chromosome but not the 19q chromosome. Current therapy is perfect and it confirms the tumor type identified in pathology – an oligoastrocytoma. If both chromosomes were deleted, the tumor would have to be strongly looked at as an oligoendroglioma which has a much more favorable prognosis. Anyway, as I mentioned it’s academic really and just another data point.
Mom and Keegan are doing well. He’s finally starting to settle down a bit at night. He was doing what all newborns do and had his days and nights mixed up. He still does to some extent but he’s waking up twice now most of the time – around 12:30 and again at 4:30 or so after being fed at 9:30pm so Rach is doing a bit better. He was staying awake until midnight every night, then up every 3 hours, etc. etc.
Rachael and I are continuing to pray every day about all of this and just trying to take things as they come. It is tempting to go far ahead and project, and to some extent you have to be strategic and think about the future but there is a difference between being strategic and dwelling on what is to come. The latter is not a place to be! Aidan is doing well too and has been such a trooper through all of this. With so many changes facing him, he has adapted so well – and kids are so adaptable. It’s amazing. He’s a great little boy with a soft heart – he tries to take care of his little brother when he’s crying by giving him little blankets and his prized possession, a small giraffe he’s had since he was about a year old! It’s pretty cool. Aidan will start at Adventure Christian in about two weeks for a transitional kindergarten class for just this year then it’s off to kindergarten the following year. He has the normal trepidation that most kids do before a new change comes. He was so used to his preschool but as he understood that none of his other friends would be there this year either, he’s becoming more comfortable with everything.
More to come soon. I will be getting all of this out to UCSF when it’s done – the MRI at the end of radiation, their recommended treatment plan, etc. There is still something inside of me that says Dr. Berger can resect this tumor and if he can and I won’t be facing major neuro deficits, I may pull the trigger.
Site Search Tags: radiation, chemotherapy, oligoastrocytoma, brain tumor, aidan, rachael, keegan, UCSF
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Mark, Just wanted you to know that I am keeping you lifted up in prayer as you walk through your cancer fight. I will also join you in praying about further resection…
Try and hold that new baby as much as possible because it passes so very quickly. My baby is now 2 but I had my first focal seizure the day she was born, diagnosed when she was 4 months old and craniotomy when she was 8 months old. She definitely got the most holding because that’s all I could do for a couple of months afterwards.
Thank you so much for your note and your prayers. I really appreciate your presence here and your comments. You are so right and it sounds like you have certainly been there. There is a unique bond between people like us as you know – we have walked in each other’s shoes. This isn’t to say at all that our loved ones, friends, family and others are not a huge source of support, but no one can understand the feelings one goes through when you are diagnosed with brain cancer. The perspective on life it provides is nothing that can be acquired by anyone who hasn’t been in a similar position.
You are over a year out from your craniotomy and I hope that you are doing well. I know for myself that spending time with family, laughing and enjoying each day as it comes is what it is about.
Thank you again. Your prayers are greatly appreciated.
Mark
Hola Mark. I just popped in to check and see how you are doing. Hopefully the side effects are minimal and you’re “kicking cancer’s butt.” (My 7 year old loves to say this…any excuse to use the word butt. LOL)
I am doing well…I am almost 17 months since the craniotomy. My 13 month MRI showed no cancer activity and my next MRI will be in November. I’m always a bit of a freak around MRI time but now there are actually times when days go past and I find that I haven’t thought about having a brain tumor. At my last scan my neurosurgeon said it’s behaving like juvenille astrocytoma and to keep doing what ever I’m doing. I chuckled at that because what I am doing is praying.
I’m keeping you and your family lifted up in prayer.
Isn’t it amazing. “All I am doing is praying”. Of course that is what struck me most out of everything you said. I’ve always been a strong believer but isn’t it something how circumstances like this test your faith? I’ll have to say that at first, I was angry. I was confused. I yelled, screamed. I was angry at God. But then, I came back to verses about endurance – about character and trials and it all became clearer and made more sense. We never know our path and may not even understand at the time why we are going through what we are going through, but there is a reason. The album I just recorded and released, “River of Faith”, is all about that as described under the Album Review tab on the blog. And yes, I’m with you – kicking cancer’s butt!