Home

Quote of the Day:

Music expresses that which cannot be said and on which it is impossible to be silent.
- Victor Hugo

Safari Trip

My Story No Comments »

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.

[flickrset id="72157623359703239" thumbnail="square" overlay="true" size="small"]

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Still Sick

Chemotherapy, Side Effects No Comments »

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:

licenseplate.jpg

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

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Holidays and Treatment

Brain Tumor Treatment No Comments »

Like everyone, we are in the middle of trying to get everything wrapped up for the holidays.  It’s a bit more difficult this year – I am so used to just flying up on a ladder and putting lights up and getting things down from the attic but with the deficit in my left leg I just can’t do some of the things I used to do before.  Par for the course.

2008 Holiday PictureWe did get the cards ready and decided on the do it yourself picture this year and it came out I think as best as it could – we couldn’t get Keegan to smile as you can see – but he’s 17 months old and wasn’t in a great mood.  The picture was embedded on a great background which I didn’t include here – just the picture so at least this part is done.

While we were running around, I also snapped this picture of Rachael and the boys.  This was all over atimg_1502.JPG a new shopping mall called The Fountains in Roseville – it’s across from a huge mall called the Galleria but a real nice place to walk around.  Of course you’re wondering where I am!  Well in picture on I’m holding on to Keegan’s left leg firmly so he didn’t squirm away and I took the second picture.  Things blew apart shortly after what ended up being the “Holiday” picture so we got some coffee and made our way out of there.  It was a lot of fun though in spite of the challenge it is to take pictures with kids.  Too bad Keegan wasn’t as thrilled as he was in the picture with Mom!  We probably should have brought someone along and tried for a family shot but oh well.

So, this week brings my second Avastin infusion.  That will be on Tuesday.  I also now know I’m slotted for the first week in January for the vaccine.  It’s been a winding road with that as you know.  So, we’ll move forward with Avastin and when it’s time for the leukapheresis which is the last step before the lab makes the vaccine I’ll move forward.   It’s about $2K and I’m not sure if insurance will cover it but it really doesn’t matter much – we’ve got to move forward with this if it makes sense.  Worst case, the Avastin is doing it’s job, which means it’s shrinking the area where the resection took place and any residual disease and we keep using it and introduce another chemotherapy such as irinotecan or accutane.  Accutane has been used for severe acne but has been used successfully for brain tumors in concert with Avastin.

So far I’ve been fine with the Avastin – no sign of side effects.  My med levels seem to be ok as well.  Not much in the way of vertigo symptoms.  I’m watching out for break-through seizures at this point though.

Alternative Medicine

I’ve just started looking into some interesting information I obtained through the Annie Appleseed Project.  My brother is connected to an Executive at the Love Hope Strength Foundation and she referred me to a board member at the AAP.  To make a long story short, they are proponents of the work  of Stanislaw R. Burzynski, MD, PhD at the Burzynski Clinic.  He has some interesting approaches involving antineoplastons.

She forwarded me a lot of information so I’m just started to go through it and I’m very grateful for the info.  I don’t have much else to share at this point but will fill you in as I learn more.  Not even sure if it’s something I will pursue but I will look at anything and everything.

Cheers,

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Time Out To Laugh

Blog, Support No Comments »

With everything going on, I have to find things to laugh about.  Dana Carvey is one of my favorite comedians – check out this bit on the Tonight Show.  I still can’t stop laughing!

YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Aidan’s Birthday / My Appointments

My Story 1 Comment »

Today is my son Aidan’s birthday – 6 years old!  His new favorite response to everything now that he is older is “I know”.  Isn’t it awesome?  Aidan, don’t throw that rock.  “I know”.  CRASH.  Aidan, please don’t use the couch as your personal pommel horse.  “I know”.  BOUNCE.  Anyway, he came bounding out of his room this morning as if he was having a party with cake at 6:30am.  If he would have had a party horn it would have been blowing hard.  Thank the Lord.  Immediate questions – who’s coming over today?  Will there be cake mom?  Dad, you have a tie on – aren’t you going to stay home??  Of course we explained all of this (how Thursday would be) and had a great party for him at a waterpark with his friends a week and a half ago – and this weekend have something planned with the family, but TODAY is his birthday and he was determined to start it off right.  So at 6:30 this morning, there we were – me in my tie, Rachael barely awake, Keegan drinking a bottle on her lap, the dogs still asleep and Aidan opening a present from his aunt and uncle.  You have to love kids.

I had an appointment with my neurologist on Tuesday and it was a very good appointment.  I had increased my dosage of Lamictal on a daily basis to make these very subtle seizures presenting in my left bicep disappear.  So far, I’ve been pretty successful in chasing them down.  No one likes to chase a problem with meds but in this case, we are not a) switching to another medication and b) the problem is not significant at all.  So, it seems to be addressing it.  As I’ve explained, it is almost like a small muscle spasm.  Oh well – I’m dealing with it.  I’ve sensed slight weakness on my left side but I checked out just fine at my appointment – he didn’t detect any at all.  So he set me up for an appointment at 6 months – Feb of 09.  Sounds good to me.

There were a few moments in the past week where I reflected on everything and thought about what is happening, albeit subtle, coupled with the latest MRI.  Regardless of how much I have turned all of this over, my faith and peace I pray for, I can sometimes fall into that trap.  I made correlations between the MRI not using the term “stable” anywhere in the final report coupled with small seizures and what I detect as slight weakness from time to time.  Mr. Logic takes over and says that these all are tied together and mean something.  However, when I speak with a doctor, like I did on Tuesday and he says a) I don’t detect any weakness, b) your report indicated some enhancement – that means the blood brain barrier has broken down and that naturally happens – it’s not really a concern and c) seizures don’t always suggest anything is occurring with regard to a change in a brain tumor, you get straightened out.  For the most part I have always let all of this be but it creeps in mostly when there are physical reminders.

Tomorrow I have my regular checkup with my neuro-oncologist which should be uneventful.  Other than that, getting back into the groove after a great vacation!

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Back From Vacation – Victoria, British Columbia

My Story 1 Comment »

We’re back from our vacation to Victoria and it was so nice to get away.  As I said before, we haven’t been away for more than a long weekend since Rachael was pregnant with Keegan – around Jan 07!  And since he was born, Rachael hasn’t been away from him for more than 6 hours.  We needed this and it was just a great trip.  We had some really nice evenings – great dinners, went horseback riding one day, went to an amazing garden called Butchart Gardens (if you’ve been there you know what I mean) and did some shopping.  The first day we were there we slept in until 8:30 which is LATE for us!  The other mornings we were up a bit earlier.  I’ve included a number of pictures in this post that will give you a good idea of the sites. 

The weather could not have been more perfect.  On day 1 we arrived to some very light sprinkles that cleared up within an hour – enough for us to walk around the inner harbor and then Thur-Sat was sunny and in the low 70’s.  On Sunday, when we arrived at the airport and were waiting on our gate, it was pouring down rain!  I think God had planned our time pretty well there. 

Health-wise, I did pretty good.  I had a little bit of weakness on my left side at one point but it cleared up pretty quickly.  Of course I brought all of my meds in my carry-on – no issues at customs either way.  When we got home the kids really missed us.  They (particulary Aidan) really missed us.  Aidan was apparently counting down the hours.  We sort of were!

So that’s all for now.  I have a few appointments this week with my neuro-oncologist on Thursday and my Neurologist tomorrow.  I don’t expect much to come from these but I will be interested in my neurologists input on the small focal seizures I’ve been having.

Pictures (Click on each for full size)

Victoria Inner HarborThe Empress HotelButchart Gardens EntranceButchart Gardens Sunken Garden

Butchart Gardens Mark and Rach

Butchart Gardens Rach

Cheers,

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Randy Pausch 1960 – 2008

Inspiration No Comments »

I was deeply saddened today to learn that Randy Pausch succumbed to pancreatic cancer.  If you aren’t familiar with Randy or his “Last Lecture”, take a look at my post back in May.  He was an absolutely amazing person who fought his battle with dignity and grace and is a model  for all of us.  He never gave up, pursued many types of chemotherapy treatments and was an advocate in front of Congress.

 May he rest in peace.

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Aidan’s Artwork

My Story 1 Comment »

My son Aidan loves to draw.  He sits down at the kitchen table and gets out crayons, pens, pencils, paints – you name it!  He makes cards, drawings and anything his mind can dream up.  I had this idea a long time ago that I would save all of this stuff in a drawer and then once the quanity of work built up over time, I would scan all of it and create a DVD.  So, it has built up enough over the last year and a half that I was able to produce a short DVD.  I know he’ll enjoy it (we’ll show him tonight) but I first output it in the format necessary for youtube.com so I could embed it here.

So here it is – Aidan’s Artwork slide show.  I just set it to some cool moving music.  Media is so wonderful – in this case, for me anyway, it takes you into a child’s mind in a way that you just can’t achieve in any other way. 

I hope you enjoy it as much as I enjoyed making it.  Most of all, Aidan will be proud and it’s something he’ll have forever.  How cool is that.

YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark
  • Page 1 of 2
  • 1
  • 2
  • >
   © 2010 Mark L. Miller, All Rights Reserved
   www.markmillermusic.org / Site Map