Blogging in B Minor

Well, we were able to sneak away this weekend to Napa Vally here in California, some of the best wine country in the world.  Stopping at some wineries was fun – they are typically beautiful and surrounded by acres of grape vines, and at this time of year mustard blooms.  The real benefit was just getting away.  I was great on Friday – drove out, stopped off at some wineries, had lunch, checked in to our hotel around 2:30, took a quick nap and then dinner at 6.  By the time we were back at the room it was 9pm – that is a long day for me.

I woke with a pounding headache unfortunately – we had a nice breakfast and I was good until Noon but then I slept in the room until 6, ordered room service (we went with a group so Rach joined the group for dinner) and back to sleep.  Sounds familiar.  Sunday morning I had a hard time going and pushed it almost to checkout.  It was a nice getaway but I wasn’t the best travelmate!

My significant issues right now are extreme fatigue and headaches that seem to be focused mostly in the rear part of my head.  I have a few other strange anamolies such as chills but other than that things are ok.  The fatigue is the most difficult to battle as most of you with brain tumors can attest to.  When you think about it, your body is spending 100% of it’s energy fighting a tumor – and in many cases including mine, an extremely aggressive brain tumor.  On top of that, I am attempting to maintain my life – work, run errands, play with the kids, etc.  My doctor keeps telling me “most people don’t do what you’re doing at this point”.  Well, what should I be doing?  Stop working.  That doesn’t seem right at this point – at all.  Way too early.  I’m not banging out 12 hour days but I am far from being incapable of doing my job.

So, the next step is a few tests:  an MRA (magnetic resonance angiography), an MRV (magnetic resonance venography) and a standard MRI to see if we can figure out why I’m having headaches.  It could be as simple as swelling or as serious as growth or other malformations.

More to come…

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My current (new) chemotherapy cocktail as it were which is all IV-based and consists of Irinotecan and Avastin is definitely much harsher than Temodar.  As you might know, Irinotecan (also known as CPT-11) was folded into the mix on Wednesday.  At first my side effects were ok well into Thursday and I exhibited none of the gastrointestinal issues.  The fatigue was the most significant sympton and was really on par with Temodar – at first.  Remember, everyone is different so this is just my personal experience. 

On Thursday night, I slept hard after going to bed at around 7pm.  I did get up at 8:30pm because of the situation with Dakota and after that was in bed at 10pm I think.  On Friday, however, I was really tired and left the office around 12:30pm.  I got home and went to sleep around 1:30pm and slept to 3:30, was up briefly then back to sleep until 8, up and ate something then slept for 12 hours.  I was up on Saturday morning briefly and had an egg and toast then slept again until Noon.  Had lunch, back to sleep until 5pm.  I got up again to eat, then back to sleep around 7pm for the night and got up this morning at 8am.  You get the picture.  Geez. 

So, I feel like I’m on the other side of the fatigue.  I did also have some of the other side effects starting late Friday but those are also passing.  My next infusion is two weeks from last Wednesday then we’ll cut the Irinotecan which is what has caused these side effects and start the vaccine.  That will be the end of the first week of February or so.  I’ll have blood work done to ensure I don’t end up lymphopenic. 

No cakewalk at all but another mountain to climb.  It’s always hard on the family too when you are down and out for 3 days or more.  Carrying the entire load isn’t easy so there is that added component. 

More later – just going to rest up and take time so I can work – want to keep that rolling.  I’ll post as usual so those of you heading down this road no at least what all of this is about.  Again, this is just my first experience with this chemo.  Most have fatigue but it varies.

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First off, on Christmas Eve as Rachael and I were getting everything done, I decided to open a gift that my parents had sent to me.  My mom had enclosed a note that said that when she saw it she knew I had to have it and it was perfect.  It was a beautifully framed, very rustic looking painting with Hebrews 11:1 enscribed in the background.  The colors on the canvas are browns and other earthtones as is the enscription so it’s like it’s floating there in the background.  Thanks Mom and Dad!  Very nice.  So anyway, a few minutes later, and I had never thought about this (inspite of CD having this enscription on it which was started in Jan 2007 and that this verse was etched on my leg in June 2007 before my first craniotomy) but I thought, hmmm, I wonder if there are any combination of characters that would work for a license plate but not be too “in your face”?  I found one that wasn’t taken:

So I grabbed it.  I like the plates that make you think a little bit anyway.  And, a plate like this will force people to look up the verse if they don’t know it.  Anyway, I thought this was a good find.  Some people won’t even put it together I suppose.  What’s also good about using the “1WN” at the end instead of 111 for chapter 11 verse 1 is in the later you don’t know if it’s chapter 1 verse 11 or chapter 11 verse 1.  With 1WN it’s clear.

Well, I have to call my folks.  I haven’t talked to anyone.  I was in bed – didn’t even go to Christmas dinner last night – until 8pm.  Up for a bowl of soup then slept until 8 this morning.  I’ve slept for most of today.  Oh well – what can I do about it?  It’s getting better.

I better get off of this – time to sleep some more.  I’m pretty tired still.  I feel cooped up and would love to get out but don’t feel up to it.  There aren’t even any bowl games on – not even the Toilet Bowl brought to you by Dow Chemical.  Sorry – my humor’s not there. 

Mark

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Well, the past few days have been a rough ride.  On Tuesday, I was feeling fine in the morning – just going about my normal routine.  I left the kitchen to head to the master and almost instantly I was hit with the worst vertigo I have ever felt in my life – no kidding.  I had to hold the walls and I was able to get to the bed.  The room was spinning out of control – or I was.  I couldn’t tell which.  I have this way about me of not wanting others to be burdened with my condition so I closed my eyes and just layed there for a few minutes, praying that God would take this from me.  I really didn’t want to have to get Rachael involved in it Well, this time I was having to walk through it because it wasn’t going to get better.

At this point, I called Rachael and of course these days she’s sprinting to my aid.  She is so supportive.  I just told her the best I could what was going on and I frankly didn’t know what to do about it.  I didn’t have a remedy.  There wasn’t any medicinal remedy like I have for the occasional seizure .  I felt sick.  To cut to the chase, I reached my limit and couldn’t cope and told Rachael to call 911.  She asked if I was sure and I told her yes. In my head I was thinking that the tumor was growing, brain swelling or some other change was causing this – vomitting, vertigo – all of it are signs that a tumor is really on the move.

As I was wheeled out of the house, I never opened my eyes for if I did, I would become even more dizzy than I already was.  They got me up from the bathroom, on a stretcher, asked me a ton of questions I couldn’t answer and took me to the ER which thankfully is 2 mins from our home.  They gave me zofran which is an anti-nausea, another drug which fights vertigo and decided to admit me.  They gave me an MRI which was great news – better looking than 30 days ago!  So what was going on? 

The culprit?  The increase in my dosage of Lamictal, one of the anti-convulsants I take.  We went from 800mg per day to 900mg back several weeks ago and it ended up being a toxic dose.  It took 2 weeks to build up in my system but I learned that this is a classic result and reaction.  By Wednesday morning I was feeling much better except for a splitting headache. 

What a few days.  All is well as I type this.  But geez!  I guess as usual you just have to go with it all.  You can’t change any of of this but it sure does get old.

More soon.

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Update

I continue to become more symptomatic which is actually good believe it or not! I had a focal seizure yesterday afternoon and although not as long as the seizure on Thursday, it was fairly intense.  I was able to work myself out of this in 5 mins and used an Ativan to bring it down.  The reason, however, it’s helpful is it’s confirming the brain mapping we have performed.  The seizures have been confined to my left leg and have not extended up into my upper body.  The tumor growth and area that has been mapped via fMRI and brain lab imaging indicates that it’s right on top of the area of the motor cortex that controls that very function – left leg.  So, it’s actually easier for the neurosurgical team and as a patient to know that we are going into a surgery a) solving a problem that has started and isn’t going away and b) having solid, symptomatic confirmation of the mapping. 

On to other news….I was up early today – no particular reason, I haven’t been worried about anything.  I think the Ativan just made me sleep a lot yesterday so I’ve had enough.

Tumor Vaccines

As for the DCVax vaccine, my team is working so hard on this.  We have some costs on some of this.  Some trials are not exactly “free”.  So far we understand some of the costs but not all.  We also need to understand a little bit more about the research protocol but my neurosurgeon, Dr. Edie Zusman at the Sutter Neuroscience Institute has been amazing in doing everything in her power to maximize my length of life. If you are ever faced with a primary brain tumor, she is who you want in your corner.  She has the fight and tenacity that I need in my situation and her entire team has an arsenal that they are bringing to bear.  She has spent hours of her time so far on this vaccine issue and will be spending a lot time this weekend dealing with it.  Monday will be critical as we will be getting final details.  I can’t say enough about the Neurosurgical team at Sutter though.  They are a brain tumor center and a vast majority have been trained at UCSF, Stanford and other elite institutions.  They have gamma knife, fMRI capabilities and so much that you find at any other top shelf brain tumor center ala Duke, MD Anderson, UCSF, etc.    

That’s it for now.  Today is a nice family day.  Rachael, Aidan, Keegan and I are going out at some point for just a family picnic.  I wanted to play some soccer with Aidan – we’ll see how that goes.  May just push it a bit – who cares.    Bring a kite.  Note sure.  My parents got in last night so we’ll see them today as well.  Tomorrow church and I don’t know after that.  Just going to focus on today…

God bless, 

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Last night was most interesting. I was very tired and went to bed at 9pm. I took my dose of Zofran (anti-nausea medication) around that time as per usual and then…..I drifted off to sleep! I typically take the Temodar dose about 1/2 hour after the Zofran. In 9 months this has never happened. Aidan is sick right now so around 1am he was having a coughing fit and it woke me up. I honestly hadn’t even realized I didn’t take my chemotherapy medication. I took some cough medicine into Aidan and when I came back to bed I jiggled the medicine cup I put on my nightstand when I go to bed and all the pills were still there. So I took them. What I learned was that the anti-nausea medication absolutely works! I had taken it 4 hours prior instead of 1/2 hour and I slept horribly, felt my stomach tightening up a bit and just didn’t feel that great. It wasn’t seriously bad but I could feel the effects. This morning, when I got up I didn’t feel good. I immediately took another Zofran (which I never have to do in the AM) and ate something and now I’m feeling fine.

Anyway, no huge problem but you live and you learn. For me, taking this when I’m sleeping is key. I sleep pretty hard even though I wake up a few times a night. So long as I take the anti-nausea medication 1/2 to 1 hour prior to the chemo, things are good. I’ll be trying to 5-day here in about 2 weeks so I’m sure it will be bit tougher but I will just take Zofran 3x per day instead of just once at night which I’m doing now.

It’s supposed to rain all weekend here – we had a storm here in January with wind gusts up to 60mph. Since Sacramento is the tree capitol of the world second only to Paris, France, it was a mess. The storm on Saturday is expected to have gusts reaching 70mph so I’m sure there will be a lot of downed trees and limbs. Nonetheless Rachael and I are going to a restaurant called The Waterboy on Saturday night. It’s supposed to be really good and we’re trying to get out with some regularity. We need to.

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Well, just a quick note because I am crashing on two ativan tablets but I had the longest focal seizure tonight that I have had since the severe seizure I had 6 days after surgery. It was confined to my left leg as the mild one I had at the office back 4 weeks ago was but this one spanned 30 minutes. I took an ativan about 10 mins into it and then another 10 minutes later. I spoke with my neurologist and we could have taken the commando approach and gone to the hospital but it wasn’t severe enough in my estimation to do that.

It is frustrating! Your brain is sending signals to your leg to stop the movement and its ignored. Of course there is the anxiety with regard to what this could all mean.  I didn’t have any for several months and now two within a month.  You turn it over.  We prayed about it. We didn’t pray for strength – for courage or faith in Him. We prayed that God reign down upon us, that He was here that He surrounded us and comforted us – that He was with us and wrapped his arms around us – boldly moved forward with us in resolving this and as a result, gave us comfort and strength.

John 16:33 Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.

Will write more tomorrow. No word today from UCSF. I’m sure I will talk w/them tomorrow. Time to crash!

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One step backward! Isn’t that the way life seems to be sometimes? Well, I haven’t had a focal seizure for nearly 2 months now and I was at work today in a meeting and my left leg started to twitch. At first I didn’t think much of it – after all, all of my focal seizures have been confined to my left shoulder and arm. However, it was familiar to me and it got my attention. After a minute had gone by, I decided to walk out and go to my office for a few minutes and I had a slight limp – for a few steps – mainly due to the weakness that had developed. So, it was definitely happening. I just sat down and relaxed and within five minutes it had passed. It’s important to turn this stuff over. It’s important, again, to stay right here in today. Yes, I wonder what it means and contacted my doctors. My Radiation Oncologist believes it’s a breakthrough seizure. I wanted to know if he would surmise if this was indicative of growth, brain swelling as a result of radiation therapy (even though I experienced zero symptoms of this during radiation treatment) or if this was not related to it at all. He said it could be – that the radiation collectively over the 6 weeks could have irritated it. After all, it is fully involved in the primary motor cortex.

I spoke to my Medical Oncologist and she is much more conservative. She says regardless, I need to be careful driving – what might happen if I see flashing lights, a sudden collision occurs in front of me, etc. Fact is, this is my left side. My right leg/foot controls my car. She is very conservative as I said. It may get more difficult far down the line but I’m not there yet – and I refuse to put myself that far into the future yet I’m also not someone who, as anyone who has read my blog knows, buries my head in the sand. So I’ll meet with my Neurologist who is managing the seizures and we’ll talk about modifying the anti-seizure meds which is what was discussed by telephone today. The bottom line? I’m doing everything I need to do – the footwork as it were beginning with prayer. No, you don’t overreact but as I’ve said before, you have to be on top of this stuff. I personally log it all. Why? Doctors ask – they need to know and I want them to know. I don’t want to respond to that question (when was your last seizure) by saying “I think it was around 3 weeks ago but I don’t know.”

My immediate fear was the tumor is evolving. Why else would I have a seizure out of nowhere?? Well, again, dismissed. I can’t go there – that is why I am a Believer. I can turn this over to God and not carry this on my shoulders. I’m not alone here. I can’t dwell on this and look at the future and the tumor, is it evolving etc. It’s about staying in today and enjoying today. It is what it is. I have an MRI on October 1st. On October 1st I will see the film and deal with that question. Today is September 22nd and I have talked to my doctors. For the rest of today I am going to enjoy my family. I am going to play Candyland with my son. I am going to read him a Batman book before he goes to bed. I’m going to give him a bath and put a tupperware container at one end of the bath and plastic balls at the other and tell him he’s got 5 shots to make a basket and if he does he’s the champion of the world! That’s what I’m going to do….

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