blogging in b minor

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 day weekend since Rachael was pregnant with Keegan - around Jan 07!  We needed this and it was just a great trip.  We had some really nice evenings, 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)

Cheers,

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Tags:  Miscellaneous , My Story

I’m really getting back to a pretty normal life now.  My son Aidan is starting in on his first year on a soccer team, I’m coaching so I’m out there on Wednesdays and  Fridays with games on Saturdays that start in September and all in all being off of chemotherapy for 6 weeks or so (can’t really remember how long now!) has been great.  I certainly remember what it’s like - and when I was on it I just accepted life as it was - you have to.  But I’ll take this.

The only issue I’m dealing with is I’ve had some small focal seizures in my left bicep that are more like muscle spasms but my neurologist and I both agree they are not.  I could chase them with meds or just take an extra pill when they occur which is exactly what I’m doing.  They occur every once in awhile and are more of an annoyance than anything.  They don’t happen too often.  I had a period about a week ago where I had them over a 5 day period every day for awhile, some lasting for 30-45 minutes.  However, the instructions here are not like before.  Before, if they lasted more than 15 minutes it was “go to the ER” but because these are so mild I just ride it out.  One day I did take an Ativan and went to sleep.  Other than that, all is good.

We are going on vacation for the first time in a long time!  Heading to Victoria BC.  We’ll be gone for 5 days, just the two of us.  We haven’t gone away since we went to Paris and that’s been over 2 years.  Well, the last 2 years we’ve had a job change and major move, a high risk pregnancy w/bed rest, a brain tumor diagnosis with surgery, radiation, chemo, emergency c-section and first year with a newborn.  Kind of prevents you from taking a vacation!  So, I’ll post some pictures when we get back.  Victoria is beautiful.  I went there a very long time ago but remember it well.

That’s it for now but I’m feeling about as good as I did in May of last year before my surgery in June.  I’m playing some music when I have time.  It’s a bit more difficult with Keegan.  My studio isn’t as sound-proofed as I would like.  I’d like to move the whole thing into a walled off area in the garage which is a three car but it’s a big job and with what’s going on, I’m not sure it’s a good idea.

Cheers,

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Tags:  Brain Tumor , Faith , hope , My Story , recovery

What a difference being off of chemotherapy makes.  You have to do what you have to do, no doubt about that, but once your dues are paid for that time it sure is nice to have the break.  I actually feel like a normal man for the first time in about a year.  I did ok on chemo.  I worked, I even worked during the last 2 weeks of my radiation treatments and went and had them during lunch hour.  I had fun with my family - went skateboarding with my son (something I hadn’t done myself in 25 years but picked back up like riding a bike) so it’s not all bad.  However, the fatigue is the most significant battle. 

Making a list on Friday for the weekend - just a to-do list and then following through and not being able to finish it was frustrating.  I would only partially complete a list and then have to take a nap.  Many times I was done for the day.  Sunday we would go to church in the morning and I could get a few more things done but would have to take another nap.  Anyway, just it’s something I just learned to deal with and accepted.  It sure is nice now though!  I’m starting to feel more energy which is great. 

As far as being immuno-suppressed, my doctors say it will be 6 months before my immune system is fully recovered from the chemotherapy.  I can tell - I’m still walking around with occasional nasal congestion and so forth but all in all things are getting progressively better.  Now it’s a matter of watching myself for any symptoms and scanning.  I’m going to enjoy life.  My wife and I were talking last night and there is always the anxiety that comes up - and the almost surreal feeling that this is all happening but things happen to people all the time.  We are pretty much over all of that part of it.  The real anxiety that we struggle with still, we realized, is more acute and is around MRI time we have gotten more used to dealing with it over time.  We’ve been doing this for nearly 2 years now and it’s been over a year since my surgery.

That’s it for now.  We’re going to Victoria, British Columbia on a vacation here soon.  Our kids will stay here with their grandparents so it will be nice to get away.  It’s the first time we’ve really had a get away since we were in Paris several years ago and that seems like an eternity!

Will check in soon here..thanks to all of you who have sent emails and well wishes.  As always, they are so much appreciated!

Cheers,

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Tags:  Brain Tumor , chemotherapy

My MRI was on Tuesday and I had an appointment yesterday with my Neuro-oncologist.  Overall the news was good.  The size of the tumor has not changed which is great news, again.  There has been an increase in what is called T1 shortening and mild enhancement associated with the lesion.  In layman’s terms, this means the blood-brain barrier of the cell walls have broken down somewhat - it’s a vascular change in the tumor is all.  A change - it’s irritated for some reason.  The cause?  It could be from all of the treatment over the last year.  It’s been hit with a heavy course of radiation with concurrent chemotherapy over 5 weeks.  The was preceeded by surgery which resulted in a biopsy and finally I completed 8 1/2 rounds of chemotherapy.  So this is really my first post-treatment scan.  The report indicates that this “could” be related to post-treatment changes and of course recommends continued follow-up imaging.  We are doing that anyway.

This is the first scan that they haven’t used the term stability but my doctors also didn’t say this is anything to cause major concerns - we just need to keep watching it.  And they all know me very well!  I’m the straight shooter.  Reality is all I want to hear so no holding back ever happens here. 

I’ve said it before and I will say it all the way down the road.  It’s all in God’s hands here.  We are all human and I have my own times when I can sit and reflect on what is happening in my life, our lives - think about my two kids, my wife and what all of this means to us.  But in the end, we all know that a lot of analysis and worrying isn’t very helpful to our daily lives.  So we are human - there is not some kind of power we can employ to feel “ok” about everything all the time, but you accept it - you accept your circumstances because you have to and I have learned to live with it - and so has Rachael but around the time of my scans we feel vulnerable and it’s hard not to think about it because it’s put front and center.

In a week Aidan starts soccer - every Wednesday and Friday we’ll be going to practice from 6:30 to 7:30pm.  That will be a lot of fun for us - a great Father/Son time.  He loves to get out there and kick the ball, run around and just have a great time and I think he really loves to kick the ball further than his dad.  Games every Saturday until November.  He is a competitive little boy - we’ll see how this goes but I know it will be a lot of fun - probably more for me!

That’s it for now… 

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Tags:  blood brain barrier , Brain Tumor , chemotherapy , glioma , God , MRI , MRI enhancement , oligoastrocytoma , radiation oncologist , Radiation Therapy , survivor , Temodar

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.

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Tags:  cancer , chemotherapy , inspiration , Miscellaneous

As luck (or a hashed immune system!) would have it, I ended up with a cold.  Who cares at this point - it’s par for the course and I’m working on bringing myself back out of this over time.  It will take about 6 months and I will take antibiotics the entire time which will help me.  Now I’m not sure if this was caused by me, but my son woke up on Wednesday morning with a terrible cold - running a temperature and the whole nine yards.  I’m watching out from all sides!  He’s worse than I am for some odd reason.  I feel bad for him - he’s been in camp all week and had to miss yesterday and today.  I’m hoping he can finish out tomorrow at least.

Also on Wednesday I had some strange sensations in my left bicep - just slight contractions on and off in the afternoon.  They started again in the evening and at that point I knew it was my long lost friend - focal seizures.  So, after a period of time I became annoyed with it (I was trying to watch Dateline or something) and took an additional 200mg of Lamictil and they said goodbye.  For those of you that can’t envision this - this time it was like having a strong twitch in an area of your body - you try to turn it off but you can’t.  You see, a focal seizure can be as simple as that or a marching numbness in your hand or arm.  So many people have this classic vision of a seizure - someone flopping around on the ground.  That’s just not what they are all about.  There are a lot of different types.  I spoke to my neurologist about it - there’s nothing you can read into this.  It means nothing.  People can have clean scans for years and have seizures throughout - I actually never have them since 7 months ago or so.  People can have tumor growth and no seizure activity.  It’s just not an indicator of anything.  So you deal with it which is why when it happened I took a pill, talked to my wife about it and went about my business (back to the Dateline thriller!). 

You just can’t get all caught up in this stuff - you have to have faith in God and turn it all over to Him - period.  Could you imagine if I took every issue - a seizure, an upcoming MRI scan (I have one next Tuesday), some weakness I feel on the left side of my body, statistical survival rates, etc. and worried about them and placed it all on my shoulders?  I’d be an anxiety-ridden mess!  I remember when I came back to work and had 2 weeks of radiation left.  I was worried about how I’d get through that and still work but I turned it over to God.  And?  And I worked, left at lunch and went to the Institute and had radiation treatments, came back to work and finished my day - and I was on chemotherapy at the same time.  I got through it but not because of me - I had some help there.  The task ahead of you is never greater than the power behind you, right?  It’s true.

I have my 60-day MRI check on Tuesday - see my Neuro-Oncologist on Wednesday to discuss and then I’ll be done for a few months.  Things are good! 

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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , Faith , God , MRI , My Story , Radiation Therapy

I’ve come to the end of the road with chemotherapy. As you know from the last several posts, I was off chemo (again) for nearly 6 weeks and just hopped back on the wagon and completed my first week on Tuesday. However, I developed an infection over the past 3 days which is no coincidence so I went in to see my neuro-oncologist today at her request after discussing it with my case manager at the Sutter Neuroscience Institute.

Upon discussion with my neuro-oncologist, we discussed a number of points, namely that I’ve had to come off chemotherapy for extended periods in the last 3 months, once for the terrible flu I had to ward off and a second time and more recently for the cold that brought my absolute neutrophil count down into the 850 range. Then we talked about having to come off again to ward off another infection. In charting out labs since November, my counts have steadily decreased as my posts have indicated. I’m now essentially lymphopenic, meaning I have an abnormally low level of lymphocytes in my blood. Lymphocytes are a white blood cell with important functions in the immune system. The most common cause of “temporary” lymphocytopenia is a recent infection, such as the common cold. Makes sense! However, with me it’s been going on for awhile. To date, this hasn’t really been called into question but we have reached a point where we have to question the effectiveness and logic behind continuing treatment if I have to periodically pause my treatment because of issues like this. I could try the 5 days on and 25 off but that is a much higher dose and would hammer my immune system even harder. I would have just as much of an issue there.

In the end, I have completed 7 rounds of “week on/week off” therapy. That’s 3 1/2 months over that 7 months of being on chemotherapy 24 hours a day. This regimen is being used in trials today so there isn’t a lot of data but it’s something that we view as a solid approach. I wanted to get to a year but I can’t will myself there. My body wouldn’t let me. This is God’s way of telling me it’s time to stop and move on - live my life, feel normal again, enjoy my family and live day by day. If we ever encounter growth, it just goes back to the original discussion around surgery, chemo, etc. I could go back on chemo using Temodar or another chemotherapy drug. I could have surgery - it would all depend upon what took place.

There is a part of me, I must admit, that feels as though a security blanket is being pulled away from me. My tumor and scans have been stable - no growth at all. There was some growth, albeit slight, from the time we discovered this in the initial MRI in 12/2006 to when I had my surgery in 6/2007. Since my surgery, however, this has been a stable situation. Pulling the chemo out of the mix is like taking off that life vest, but I know God is there and He is in the middle of this - He is steering the boat, not me and as usual, it’s about giving it up.

Time to move on to a new chapter. This was a good run. I will continue with scans every 60 days and I will have another here soon. It will take about 6 months for my immune system to recover and return to a relatively normal state. I will take the same antibiotic, Bactrim, that I have taken all along during the next 6 months to help fill the void in my immune system. Other than that, this is where I stand!

Cheers,

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Tags:  absolute neutrophil count , Brain Tumor , chemotherapy , lymphocytes , lymphocytopenia , lymphopenic , Temodar

I finished up the first week back on chemotherapy last night and overall it went very well.  As I mentioned, I think my body wasn’t ready for it on the first night but by night 2 and 3 I was pretty well in sync with my system again - nothing to eat after 7pm, zofran at 8:30 or 9pm and then chemo treatement starts at 9:30pm as I go to sleep.  So overall I’m really happy with the way it went coming off of a 5-week layoff.  I’m also feeling good energy-wise.  I have some of the typical chemo-related fatigue but I don’t feel like I did before when my counts were so low - it was more or less just walking around feeling like I had a bad cold constantly and wanting to sleep! 

So another week on after taking a one week break and round 8 will be history.  If all goes well and I don’t have to pause my therapy for any other reasons, I will be completely done by November.  I will be taking a break for a week or so at the end of August for a vacation up to Victoria, British Columbia.  No, I’m not such a die-hard that I plan to be popping chemo pills as I gaze out of the hotel window taking in a nice view of the Empress hotel and Victoria harbor!  Speaking of vacations, that will be nice and we also have some friends who have a place at Northstar in Lake Tahoe.  She’s great and has been consistently “reminding me” to get up there so that is something that is in the plans too.  After last year and being tied to the house with a 2-mile rubber-band, it’s nice to think about these things and actually plan them out.

I’ll post again over the weekend - I hope everyone is having a good week and again, thank you for all of your continued support…

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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , Oncologist , Temodar , tumor , zofran

Quick post - this is a hilarious short clip of my 1 year old Keegan putting on a show recently in our living room.  We couldn’t stop laughing about this.  Things like this make issues like a brain tumor take a back seat, you know?  Check it out:

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Tags:  inspiration , Keegan , personal

After nearly 6 weeks off of chemo because of my low blood counts, the first night back on chemo went ok.  I will have to say though - how quickly I became used to a “normal” life absent chemotherapy!  Gone were the side effects including dry mouth, the more extreme fatigue (much of it was still with me due to low blood counts), some stomach tightening during the night and waking up needing to eat right away (it sort of feels like you have taken vitamins on an empty stomach if they affect you in that way).  I used my same system - no eating after 7pm.  Zofran at 8:30pm., Temodar at 9:15pm or so and then head to bed.  So it will take a little bit of time to acclimate to it again.  I’ll go from here.  I had started on round 8 so this is a redo.  That leaves 5 rounds left including this one.  It certainly will be interesting to see how my labs come back at the end of this round given the recent plummet.

I didn’t get a lot of sleep last night which is atypical compared to how my system was before.  Probably because I’m not in a groove with it just yet.  I was up from 1-3am.  Tonight should be better I’m sure.  One day at a time - but what is most important is that I’m fitting in more treatment.  I need to try to take as much as I can since afterall, I had a 0% resection because of location.  Once I get to a year, I won’t go beyond that because of the risk of leukemia so I need to keep things going.

Down the road we continue…

On another note, we have a large patio cover outside in the backyard and over the past 2 months, 3 different female birds have built nests in the rain gutters on the inside of the cover in different places.  As a result, Aidan has been able to see the whole process from start to finish - the newly hatched birds being fed all the way to the baby birds leaving the nests for the first time and sitting still on the patio, flying 3 and 4 feet and learning to fly.  It’s been a great experience for him to see all of this and ask questions. 

Keegan turns 1 on Sunday.  It’s been a full year since we went through an emergency c-section 2 weeks after my brain surgery - heading to the hospital at midnight.  What a night.  So we are going to have a party which will be really fun.  It’s going to be a quiet party for him which will be nice but we will celebrate his birthday and how far we have come in one short year.

That’s it for now…

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Tags:  absolute neutrophil count , Brain Tumor , chemotherapy , chemotherapy; Zofran , My Story , Temodar , white blood cells , zofran