Blogging in B Minor

This is a little late but I was reminded of this today and meant to post it when I first read it.

Subscribe by Email RSS Subscription

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 then into your cheeks.  At one point it was just above my eyebrows and Rachael said I looked like a Vulcan!  I did! It was like a huge ridge that went from one side of my face to the other.  My good looks were just starting though. Next, it dropped into my eyes and I look like I got punched out in a bar. Woo hoo! A cancer patient brawing in bars.  I walked out into the family room one morning and my son Aidan looked at me and said “you look different dad – have you looked in the mirror?”  Nice.    Alas, it’s gone

I’ve had the normal nausea associated with taking VP 16 but Zofran really helps with that. Still a bit fatigued but that is much better. Over the weekend I was pretty tired but I expected to be.  Tomorrow I’ll be going in to me with my neuro oncologist followed by another Avastin infusion.  I’ll go in for physical therapy.

With the fun stuff, we are looking at a number of options for get-aways. A few local options such as Carmel, Monterey, and other destinations on California’s central coast are convenient. We’re planning a trip right now with Aidan but were not sure where. It’s a trip that will be just for the three of us since Keegan is two and Rachael, Aidan and I have never done this before. There’s a cool safari trip that we can do overnight - you take a jeep trip through a large open area – giraffes bow down and you can touch them and there are a lot of other animals.  Then you can stay overnight in a cabin that has netting and canvas so you can hear the animals at night.  I will take lots of pictures.

God bless

Subscribe by Email RSS Subscription

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.

Subscribe by Email RSS Subscription

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 way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion.  I had Gamma Knife in 3/08 so this will be #2

As I have more information I’ll post it here. Thanks for all the prayers and support.

God bless,

Subscribe by Email RSS Subscription

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 because of my loss of function in my left arm. This morning in particular was a little bit of a breaking point for me. For the first time I was not able to reach my right under arm with my left hand to bathe.  I wasn’t feeling sorry for myself. I know there is a lot more to come that will be even more difficult  It was more about the physical limitations I have now and the dependency on others compared to how I used to be and it was so incredibly frustrating to me. I hit the shower wall a few times to be quite honest and because of my frame of mind started wondering what’s next.  My left shoulder is just very weak and it can’t support the weight of my arm. The tendons from my scapula to my shoulder are separating and most of the pain is felt in the AM after sleeping overnight.  I’ve been trying to use a towel lying on my left side to support my arm and shoulder arent pulling as much but it doesn’t seem to help much.   The result is if I bend over during the day to pick something up I hear pops and cracks in my left shoulder and it further stretches out that tendon.  I’m stooping as best I can but it’s just a problem I have to work as with the others.

If anyone has experience with shoulder injuries and support systems for sleeping at night I would greatly appreciate any input you have!  I think I’ll have some good information from PT tomorrow afternoon.

As I well know, this type of thinking – getting caught up in the problem – accomplishes nothing but at the same time I think it’s important to walk through whatever you’re going to feel. The reality is the same. I’m only human and it is frustrating.

It took me a while to get back into today which is where I belong and what I preach all the time. This certainly addresses the future and anything that is to come. That’s all part of God’s plan. What I find difficult is when I’m going through something like this, I’m frustrated and it IS happening today.  There’s no other way than prayer and turning it over and I’ve done that over the last three hours. Enough said

With regard to IV chemo, I will be at the infusion center tomorrow for avastin treatment.   I’ve been doing this every other week for quite a long while. On February 1, I will have another MRI. At that point will see where we are and I know that we will be guided in the right correction.

Lastly, I have upgraded the blog’s core software to the latest version. What this means for everyone else as I will be able to build in new functionality that is really exciting. Already I have put in a mobile edition of the blog that you can access with an iPhone, Blackberry and most of the major smart phones. Basically it’s a stand down version of the blog that allows you to see recent posts, comments and allows you to respond to posts on the go.  For me, upgrading the blog opens a lot of possibilities in terms of some projects I’d like to tackle when I’m not working. After all I I still have that brainy side that needs to be exercised

I will provide updates as usual. Friday is my last day of work.

Subscribe by Email RSS Subscription

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…

Subscribe by Email RSS Subscription

As usual it’s the last minute shopping and wrapping for Christmas.  This is a great time of year but it’s also so busy.  In addition,  I started back on treatment using avastin and and valcyte.  As you know, I had to take some time and stop chemo treatment after my bout with the flu to give my marrow time to generate white blood cells.  The week before last I had a DCVax injection and last Friday I went in for an avastin infusion since my counts are back up.  I feel a lot better now that I’m back on treatment using multiple agents.  I have an MRI scheduled for January 8th.  At that point we will be able to more info regarding the small area of enhancement that was seen on the MRI taken while I was in the hospital.  You may recall that MRI report indicated that there was a small area subacute ischemia.  Put simply, this is conjecture on the part of the neuroradiologist but it could be either a small TIA  that occurred in the hospital or it could be tumor.

I have spent time in physical therapy focusing on both my leg and my left arm.   Slow progress but getting there  The same holds true with my left leg.  So, I’m doing as much as I can at this point in time.

A friend of mine pointed me to this interview with Ben Stein on CBS Sunday morning.  The interview actually took place in 2005 with Charles Osgood.   He had some very thought-provoking things to say that I think are very true.  I’m going to  paste majority of this below.  When you think about it what he says is so true.  I won’t provide any commentary because it’s really not necessary.   It speaks for itself.

Also, I wanted to let all of you know that I really appreciate all of the e-mails and comments that you have left on the blog that have encouraged me through this setback.  Even though I can’t respond to all of you know that I really appreciate the encouragement and prayers.

Wishing you all happy holidays

======

Herewith at this happy time of year,
a few confessions from my beating heart:

I have no freaking clue who Nick and Jessica are. I see them on the cover of People and Us constantly when I am buying my dog biscuits and kitty litter. I often ask the checkers at the grocery stores. They never know who Nick and Jessica are either. Who are they? Will it change my life if I know who they are and why they have broken up? Why are they so important? I don’t know who Lindsay Lohan is, either, and I do not care at all about Tom Cruise’s wife.

Am I going to be called before a Senate committee and asked if I am a subversive? Maybe, but I just have no clue who Nick and Jessica are. Is this what it means to be no longer young. It’s not so bad.

Next confession: I am a Jew, and every single one of my ancestors was Jewish. And it does not bother me even a little bit when people call those beautiful lit up, bejeweled trees Christmas trees. I don’t feel threatened. I don’t feel discriminated against. That’s what they are: Christmas trees. It doesn’t bother me a bit when people say, “Merry Christmas” to me. I don’t think they are slighting me or getting ready to put me in a ghetto. In fact, I kind of like it. It shows that we are all brothers and sisters celebrating this happy time of year. It doesn’t bother me at all that there is a manger scene on display at a key intersection near my beach house in Malibu. If people want a creche, it’s just as fine with me as is the Menorah a few hundred yards away.

I don’t like getting pushed around for being a Jew and I don’t think Christians like getting pushed around for being Christians. I think people who believe in God are sick and tired of getting pushed around, period. I have no idea where the concept came from that America is an explicitly atheist country. I can’t find it in the Constitution and I don’t like it being shoved down my throat.

Or maybe I can put it another way: where did the idea come from that we should worship Nick and Jessica and we aren’t allowed to worship God as we understand Him?

I guess that’s a sign that I’m getting old, too. But there are a lot of us who are wondering where Nick and Jessica came from and where the America we knew went to.

.

Subscribe by Email RSS Subscription

It’s been a bit difficult to write lately.  My left side is much weaker now and has now moved into my arm, hands and shoulder.  As I may have mentioned before, when I had the 8-day stint in the hospital, I felt a lot more weakness coming out. That was in October and it’s declined from there.  Simple tasks such as buttoning a dress shirt, tying shoes, getting my left arm into a jacket – things we don’t think about can be frustrating now!  Playing piano is more difficult which is hard for me to accept.  Carrying a glass in my left hand without spilling it is very challenging.  I’ll be doing another occupational therapy assessment soon.

In the hospial, the MRI indicated ischemia (minor stroke) so it’s either that or tumor growth,  I have an MRI scheduled for Jan 8th so that will be telling. 

I’ve received a number of emails and I’m sorry I haven’t been able to respond.  It’s just a bit hard at the moment.  I am working on my arm really hard right now, lifting light weights in therapy and still focused on walking of course.  It’s going to take time however…but God is on my side.  Whatever His plan might be is where I will go. There isn’t much choice.  I’m taking all of the worldly steps I can.

I hope all is well.  I pray I can ramble on longer in posts soon!

Subscribe by Email RSS Subscription

I’m slowly pulling out of this and have some time to ellaborate on my fun with the flu.  This flu is hard for anyone let alone those with a suppressed immune issue. 

First off, the strain of influenza I had been dealing with is called Haemophilus influenzae.  This is not to be confused with H1N1.  Most strains of H. influenzae are opportunistic pathogens – that is, they usually live in people without causing disease, but cause problems only when other factors (such as a viral infection or reduced immune function) create an opportunity.  As brain tumor survivors, we have inherently suppressed immune systems.   As I mentioned, my white blood cell count was 0.9 going in to the hospital and my absolute neutrophil count (ANC) was at 400.  Normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection.  Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer.  Neutropenia increases the risk of infection. 

So, I was a prime candidate which is why it’s important to have regular CBCs, which I do.  When the flu started my counts took a dive fairly quickly.  I have been on Avastin every other week The CBCs confirmed this.  The CBC on Thusday showed my ANC is at 1,200 now so I’m getting there but the week and a half of being down like this has taken its toll.

The MRI that we conducted in the hospital showed that everything is stable.  The one interesting detail is that there was an observation showing an infarct resulting from subacute ischemia.  Brain ischemia, also known as cerebral ischemia, is a condition in which there is insufficient blood flow to the brain to meet metabolic demand.  This leads to poor oxygen supply and thus to the death of brain tissue or cerebral infarction / ischemic stroke.  It is a sub-type of stroke.  This is viewed as a positive in my case because it shows that the blood supply to the area of the tumor is being cut off.  I’d venture to guess perfusion test would reveal this.  I am weaker on the left side and I have more issues with equalibrium.  I can’t be sure if this is a result of just having the flu,  an episode of radiation recall, or ischemia.  Regardless, I can’t do anything more than we are doing/have done.

Being in hospitals is not too fun obviously.  I don’t know how many bags of antibiotics were pumped through my body.  I ran a high body temp for awhile and that can make one more vulnerable to seizures (and ischemic attacks).  I had one seizure in the hospital.  Ativan handled it.  To add a bit more detail for those interested, the main symptoms of ischemia involve impairments in vision, body movement, and speaking.  The primary symptoms of brain ischemia that apply to me include problems with coordination and weakness in the body.   What is amazing is that all of this was a chain reaction that began with the flu.  My immune system is compromised and the dominos fall.

That’s it for now.   GLAD to be out of the hospital.  A prayer out to Michael who will be going in for a second craniotomy in the next week or so.  Please pray for him

 Cheers

Subscribe by Email RSS Subscription

Many of you may be wondering why I’ve been MIA for the last few weeks.  Well, I’ve been in the hospital.  What began as a serious flu for several days resulted in a week’s long hospital stay with my white blood cell count plunging to a low of 0.8 – considered without a doubt neutropenic.  As a point of reference, the normal range is 4.0 to 12.0.  I was isolated and a good 25 bags of IV antibiotics were pumped into my system via IV.  It was NOT fun!  It’s all flu related.  The flu this year is harsh to say the least.  I’m taking a bit more time off so my body can catch up but wanted to put up a post so everyone isn’t in the dark.  I have others that will stand in in the future if necessary if something comes up and time gets away too much.

I’m planning to get back to normal life next week if the counts are there.  Sitting around is not fun! 

More to come when I have more energy… 

Subscribe by Email RSS Subscription