Blogging in B Minor

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… 

Subscribe by Email RSS Subscription

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 Email RSS Subscription

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! 

Subscribe by Email RSS Subscription

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,

Subscribe by Email RSS Subscription

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…

Subscribe by Email RSS Subscription

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:

Subscribe by Email RSS Subscription

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…

Subscribe by Email RSS Subscription

Finally…After 5 weeks of weekly CBCs, I finally have an ANC (absolute neutrophil count) from today’s blood draw that is acceptable – it’s at 1200, up from 858 last week so this is great news.  The best news of all is I can get back on the program and start chemotherapy tomorrow night.  I still have to contend with some abnormal aspects of my blood work, namely my white and red cell counts that are low but one of the most important counts, the neutrophil %, was up considerably.  By virtue of that increase I’m able to start back on Temodar which was the overall objective all along.

Thanks to everyone who prayed about this.  Going from 1500 down to sub-1000 to 850, I started to think that perhaps this might be the end of the chemotherapy road so-to-speak but I am glad that didn’t happen.  I felt like it was getting into the 9th inning with a runner in scoring position – and finally a double into the gap after a long drought and we scored!

Time to move forward and start back although I will have to say it will be a little odd after being off treatment for 5 weeks.

That’s all for now.

Subscribe by Email RSS Subscription

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.

Subscribe by Email RSS Subscription

I received my lab work results and the ANC has dropped down to 858 from last week’s score of 964.  Obviously this is in the wrong direction!  On the positive side, there is another count called an absolute phagocyte count and that looks reasonable.  However, this is not enough positive info in terms of my body recovering to start chemotherapy so I will hold off again for another week.  It’s a bit concerning but explains, once again, the fatigue and so forth.  The way I look at it though, as with everything else that’s transpired along this road, it’s all in God’s hands.  I have to give it up as usual.  Of course I have to do my part too.  There are no freebees.

If the ANC drops again next week then I’ll be more concerned and I think my doctors will be as well.  Then we have to start looking at other reasons for the drop.  At this point, however, we believe that I encountered a pretty strong virus not once but twice.  Even a healthy person’s ANC would take a hit, albeit not this hard, if they had to fight this off several times and the ANC can stay down for a bit.  We didn’t expect another drop necessarily.  I would’ve thought that after 5 weeks we’d be back in business!  Grrr.  What I am also keeping in mind is that the “standard of care” for my brain tumor is surgery/resection, radiation w/concurrent temodar followed by 6 months of chemo using Temodar.  I completed all of that like clockwork, not missing a single treatment of radiation or chemotherapy.  It wasn’t until cycle 8 or so that I started running into some issues with becoming sick.  The point is I feel good about completing the standard of care at least.  If this was going on in round 2 of chemo and I was having to pause treatment for a month or more, I’d be a lot more concerned I think.

That’s it for now.  Getting ready for the 4th of July!  It should be a great holiday. 

Happy 4th of July to all of you!

Subscribe by Email RSS Subscription