Quote of the Day:

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.
- Buddha
Jun 23

Father’s Day

Inspiration, My Story, Personal 1 Comment »

I’m FINALLY feeling better!  I didn’t post for quite awhile because this cold just became worse and worse and it finally required anti-biotics.  It’s taken the better part of a few weeks or more to start feeling better.  I still have remnants but at least I’m not laid out like I was.  This is a repeat of what happened last spring but I think it’s come and gone now.  Thank you for all of the emails and comments on the site.  Your words of encouragement have meant a lot. 

So Father’s Day - it was really nice.  My son Aidan - he has such a soft heart and as you’ve seen in other posts, he loves to color.  Well, he made a card for me and this one wasn’t so much coloring but it brought tears to my eyes.  These are the moments I live for.  This is why I want time.  There are are hard times, yes.  Really tough times.  Tough times at home trying to deal with what we call a “new normal”.  Tough times juggling work, medications, and doctors.  A very heavy load on my wife having to pick up pieces because I can’t do what I used to do.  Most of you know exactly what I’m talking about.

But…there are these wonderful bright spots that shine through.  Sometimes you have to look for them and sometimes they are right in front of you.  This was right in front of me on Sunday.

I’ll just place it in this post and close here.

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Jun 17

Avastin - Seizures - MRI

Brain Tumor Treatment, Avastin 5 Comments »

I’ve been quite sick over the last several weeks.  I came down with a terrible cold that started as a virus and then was bacterial.  I waited it out in the beginning but it hung on for a week so I went in and at that point antibiotics seemed to have taken care of it.  Still pretty fatigued but that’s just because of a suppressed immune system.  It takes a lot longer to get over these than others.  Those of you who are survivors understand.

I’m going in tomorrow for an Avastin infusion as long as all of my lab work comes back fine.  My vaccine injections are now 16 weeks apart so I have plenty of time to fit this in before the July 22nd injections. 

I seem to have found the right combination of meds to control seizures.  I haven’t had one for a week now and was having one every 2 days so this is a good sign.   MRI due end of this more than likely.  Again, don’t pay too much attention anymore.  Just focus on today as much as possible - but it is difficult to do sometimes as we all can attest to.

Happy Father’s Day to all the fathers out there - hope the weekend is good!

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Jun 06

Sick - Missed Avastin

Brain Tumor Treatment, Avastin 1 Comment »

Has anyone had this summer flu/cold that is going around?  I’m sure a lot hands went up.  It’s bad!  Especially if your white cell count is consistently low.  I was supposed to have an avastin infusion last Thursday but I took most of that day off and all of Friday and slept.  There isn’t much else you can do.  Today is the first day I have felt better with some good energy.  I’m going to see if I can set that up this week. 

Avastin, because it cuts off the blood supply to the tumor, can not only work on slowing the tumor’s growth but can also help with brain swelling.  As I’ve posted, I’ve had some issues with focal seizures on the left side since my gamma knife surgery so this can help lessen these in theory.

I am still juggling meds to control seizures.  I had a few late last week and one in the middle of the night that woke me - that was new.  It was like someone shook me!  It was like all the others though.  So we added back in a med that gave me a bit of vision issues last time but I’m taking it every other day and at a lower dose.  I started this on Friday.

My son Aidan came home the other day and said he had a Father’s Day present for me and asked “Can I give this to you now and then we can do it again on Father’s Day”?  Sure.  First he made this great card - a picture of him in an over-sized suit jacket and a tie with a caption that read “this is what my dad wears to work” and then a note that read “Thanks Dad for making the money for our family to live here.  Your the best dad.  I love you”.  SO FUNNY!!  The picture is priceless.  Then, the present is a river rock that probably weighs about 5 pounds - no kidding!  It’s painted brown and with black paint he painted “I love you Dad”.  Now, I never in my professional career found a reason to use paper weights.  It’s not like people are working on rooftops or in the middle of a sidewalk.  What are they supposed to do?  But, I have a government issued, Aidan-reconditioned paper weight in case a wind storm hits our high-rise and I don’t have windows anymore!

This week hopefully I can have my Avastin infusion.  I’ll have an MRI in another 5-6 weeks I believe - don’t pay much attention anymore.  Just try to stay in today and live life.

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Jun 02

Celldex Vaccine - Interview with CEO

Brain Tumor Treatment, Brain Tumor Vaccine No Comments »

Immunotherapy appears to be gaining a lot of traction in the fight against cancer.  Here is another vaccine that is specifically designed to target brain cancer.  The interview with Celldex CEO Anthony Marucci  can be viewed on CNBC.

 This approach is nearly identical to that of DCVax-Brain.

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May 30

Cancer Vaccines

Brain Tumor Treatment, Vaccine, Brain Tumor Research No Comments »

There are other vaccines being researched and developed and perhaps one day a vaccine may be the answer to prevention.  The answer of course is what so many are seeking.  Take a look at this story on MSNBC regarding a vaccine,  for melanoma when you have time - the concept is similar to DCVax but of course DCVax is not harsh as this apparently is given it has to be administered in the hospital.

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May 27

Brain Tumor Support

Brain Tumor Treatment, Inspiration, My Story, Blog 3 Comments »

Injection today.  All of the standard labwork came back fine so the vaccine was sent overnight as usual.  This really provides us with a lot of hope for us.

Among a number of emails I received, one really stood out.  A mother emailed me to say that her family has been on this journey for 13 years since their daugther was 22 yeard old.  They are at the hospital today for more treatment.  So a prayer goes out to her and her family and friends that all goes smoothly and they are left with comfort and peace knowing it’s another step in fighting and getting out in front of this disease.

For me and I think I can speak for my wife (to some extent anyway), I think this is the essence of living with a brain tumor and how it involves the entire family in different ways.  Support is certainly important - a key component of living life with a brain tumor.  Closing off to the world never accomplishes anything. 

From the family perspective, I just can’t do what I used to be able to do - climb ladders, blow through a list of items I want to get done.  I get tired.  I don’t feel how I used to feel.  It’s different.  I enjoy life though.  It’s an adjustment for everyone.  Even after everything we’ve walked through, there’s a continual need to adapt.  My family can’t really know what it feels like just like I can’t really understand how my wife feels watching this unfold, trying to understand why I can’t be up for outings or errands in the afternoons, etc.

The more understanding, compassion and reciprocation that can be continued - realizing the better or for “worse” part of most of our vows and those limitiations, the better we do.  Let’s face it though - this is a complex situation!  This is but one part of it but coming together, organizing your treatment plan, being your own advocate and not taking a doctor’s first recommendation as the defacto answer.  All of it comes and came together for us.  But there are times when it can unravel and does.  We all stumble but it’s a matter of continuing.

Was that a tangent?  I think her email just inspired me and reminded me, again, of all the people in all kinds of circumstances face this - and many for a long period of time.

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May 26

Seizures and Medication - So Much To Track

DCVax, Gamma Knife, Vaccine, Brain Tumor No Comments »

Our 2 year old son Keegan had his second set of tubes put into his ears this morning.  If any of you have ever had your children go through the tube surgery, it’s rough when they come out of it - confused, sleepy, etc.  He did fine and is at home.  We set him with an Elmo video and he was a happy boy.  We’re hoping this is the last surgery!

I have another vaccination tomorrow.  I’m so thankful that we were able to make 3 years worth of vaccine from the tumor tissue and white blood cells taken back in October and January respectively.  So far so good.

I am still struggling with seizures.  Recently they have become slightly stronger and longer in duration - at least 5 minutes and it concerns me.  I might be pushing too hard - not sure.  Actually it’s a combination of several factors.  Sometimes it’s easy to find myself wanting to tackle so much .  I’m used to making long lists and blowing through them.  I think when I let everything in - combining my profession with my medical needs - appointments, a mix of meds to keep straight and track, treatment options, and most importantly my family and time with my kids can just get to be overwhelming sometimes and I’m in that place today - at least at the moment.   I’ve spent the better part of the last week trying to sort this out with my neurologist and neuro-oncologist.

We’ve increased doses, lowered some, added a med, etc.  I’ve run into some vision issues after changing some so we’ve made other changes and the seizures start again - every few days perhaps.  It’s a matter of finding a balance but it’s a fine line.  What complicates the seizure control is I have been told that because of the location of my tumore (on the motor strip), seizures are likely to increase in frequency/severity post-gamma knife up to about 6 months.  I can only chase the problem to a point but it’s hard to get out in front of them.  I don’t want to go on decadron or any other steriod to reduce swelling because I’d have to stop treatment at that point.

More to come - this to me is really a small issue in spite of dedicating a post to it!  The good news is the tumor was stable as of the last MRI - and I just need to stay in today as I always say.  Sometimes the frustration boils over this morning was one of those mornings.

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May 15

Recent MRI Images

MRI, Brain Tumor 1 Comment »

I didn’t have a chance to post the most recent MRI images so I’m posting a number of them here - mostly “top down” views to spare the medical terminology.  The last is head on. 

What is interesting about the first set here is you can see as the scan slices move through the brain, the center of the tumor appears to be dying - and there is likely some necrosis.  This is something that can come along with gamma knife surgery.  But you can plainly see that as the images progress from top to bottom there is a “hollowness” for lack of a better term which is - well, better than growth!  Necrosis is scar tissue but in my case we don’t believe resecting it will be an issue (some survivors have to have this removed to avoid brain pressure/swelling).

 I don’t have my pre-gamma scans here but the comparison is interesting - the tumor was one solid mass so between that and the vaccine and other treatments, we are moving in the right direction I believe.   All we have is today!

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Head On

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May 13

Current Status

Seizures, Brain Tumor Treatment, Avastin, Treatment Options 3 Comments »

I haven’t posted for a bit.  I’ve been trying to balance out my seizure meds.  The second medication I was prescribed raised the levels of another medication I was taking so we had to back off the dosing of the new med.  I started having some double vision - this is the same condition that led to the 911 call some time ago.  So far, backing down the med has helped and I haven’t had a seizure and my vision seems ok.

I will be folding Avastin back into the mix.  I will have labs today and start tomorrow with an infusion.  You may recall this is not a drug that will pull down my immune system.  We are just throwing whatever we can at this. The vaccine seems to be helping fatigue for sure.  My current issue, however deals with walking and weakness on the left side.  I’ve regressed in this area so I am going back to physical therapy for conditioning.  It’s just something that has to be done.  My heel striking is ok but I’ve started having a roll in my foot when walking and I’m hyper-extending my left leg when walking.

Aidan and I have been having a good time playing bball.  He loves to play horse.  I can jump about as high as Keegan!  But, I can get out there and shoot and do pretty well.  I’m just spending time with him and at night reading and talking is great.  Keegan and I have some fun but at 7, Aidan can really whip a football and it’s really fun!

More to come…

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May 08

May 7 2009 MRI Results

DCVax, Avastin, Vaccine, MRI, Brain Tumor 5 Comments »

Real quick but this really illustrates how much we really need to just stay in today.  My own conjecture about the increased frequency of my seizures, including brain swelling, possible growth, etc never include “stability”.  However, that is what the final report says - stable.  Additionally, the edema is reduced. 

This is a victory of sorts!  In spite of the recurrence, the working theory is that cells are dying off and that’s leading to irritation of the tumor and seizures - the gamma knife surgery is a large part of this but so is the vaccine perhaps.

As far as no change on the MRI, we don’t know the reason for the stability but DCVax has to be considered.  Only time will tell because the gamma knife surgery was only several months ago as well and the full effects/results will take more time to reveal themselves. 

I’m going to go on Avastin again to keep hitting it.  This shouldn’t be too bad though.   I’ve had it before.  My biggest fight with Avastin is staying as hydrated as I need to be - you have to drink water/fluids like a fish!

That’s it - Happy Mother’s Day to the mom’s out there….

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