Blogging in B Minor

Long time no blog post! Well, I’ve been busy with more challenges so I’m going to do my best to share the latest developments regarding my recent health setbacks. I may not have correct dates, etc. correct but they aren’t important and my apologies if some of the info is redundant with the content in a few previous posts but I’m winging it.

I fell at home on Tuesday the 15th and really smacked one of my ribs pretty good as they hit the edge of the desk in our home office. I’ve been experiencing some staggering and other issues that can all be traced to tumor growth, brain swelling and new started having some slurred speech too which has gotten much better now that I’ve started steroids to reduce brain swelling. This MRI showed growth and brain swelling (edema)

I had another MRI last Sunday, June 28th. (just 11 days from the previous scan).

The report was difficult to read – once was enough. Four new lesions were discovered. This has led us to a decision to stop treatment and bring in hospice. My life has evolved into what would now be futile attempts to treat a disease that has run its course into a life. Many of my days have been spent, lately, in PT, hospitals, labs, etc

My body and prayer is telling me the fight is done and its time to shed myself in of this fight after three years, 12 or so rounds of chemo , the experimental DCVax treatment that gave me 10 months of recurrence-free living, 2 brain surgeries, multiple recurrence 2 gamma knife treatments, etc.

It’s been a tough 3 years – options have run out but I’m ok and am at peace with my entire situation. It’s run its course. It’s time to just be comfortable.

The fact is, I’m going to heaven soon where there is no pain, sorrow or grief- only perfection, only eternal joy, happiness and as my son Aidan said the other night I will be able to do things like throw the ball to Dakota, our black lab we had to put down a few years ago. Oh and he wanted to know if I’d leave iPhone behind for him. LOL!!!

From a medical standpoint, I certainly will not look back with any regret that I didn’t seek out and utilize all treatments that God has made available to man. The only treatments I steered away from were those that would result in complete paralysis of the left side of my body or harsh chemotherapy treatments, waste away and my appearance so drastically that I would be a shell of myself. I didn’t want my kids to witness that nor was I willing to beat my body up like this. It’s a very personal decision.

From a medical perspective my doctors projection say 2-4 months but only the Lord knows. Stats are stats – I’ve written about how aggressive this disease can be.

The boys are very resilient. I’ve had some difficult discussions w/Aidan lately, but he seems to have an understanding of where I will be, which is an immense comfort.

Ok I get emotional just writing. Discharged today! Can’t wait!

One day at at at time… enjoying my family each and every day and praying that the kids and Rachael will be given the strength and peace to walk through the final steps of this journey knowing that they have the love of af of God and that for Rachael that she isn’t distracted with future issues such as finances, getting along later, impact on the kids. etc. These things will all come together.

Hebrews 11:1

Subscribe by Email RSS Subscription

I’ve had a strange 24 hours. I had a very odd seizure yesterday that was localized to my left hand as usual. What was odd is that it took my hand hours to recover (from the numbness and tingling). I’m having a harder time opening and closing my left hand today. I also felt a lot of numbness in the area of my left torso (in the area of where your kidneys are located). This is new. I am requesting an MRI which we planned to do anyway but I want it asap. I had another this morning but my hand recovered fine and there were no signs of numbness anywhere else.

I want to rule out certain things other than the tumor such as small stroke. Ultimately, I believe this is all related to gamma knife, aggravation of the tumor site(s) and/or growth or shrinkage but an MRI will tell for sure. At the cancer center now for vaccine injections.

More to come.

Subscribe by Email RSS Subscription

It’s been a bit difficult to write lately.  My left side is much weaker now and has now moved into my arm, hands and shoulder.  As I may have mentioned before, when I had the 8-day stint in the hospital, I felt a lot more weakness coming out. That was in October and it’s declined from there.  Simple tasks such as buttoning a dress shirt, tying shoes, getting my left arm into a jacket – things we don’t think about can be frustrating now!  Playing piano is more difficult which is hard for me to accept.  Carrying a glass in my left hand without spilling it is very challenging.  I’ll be doing another occupational therapy assessment soon.

In the hospial, the MRI indicated ischemia (minor stroke) so it’s either that or tumor growth,  I have an MRI scheduled for Jan 8th so that will be telling. 

I’ve received a number of emails and I’m sorry I haven’t been able to respond.  It’s just a bit hard at the moment.  I am working on my arm really hard right now, lifting light weights in therapy and still focused on walking of course.  It’s going to take time however…but God is on my side.  Whatever His plan might be is where I will go. There isn’t much choice.  I’m taking all of the worldly steps I can.

I hope all is well.  I pray I can ramble on longer in posts soon!

Subscribe by Email RSS Subscription

I took a week or so off here.  Lots going on.  On Wednesday, I went to attend Rachael’s great Aunt’s funeral and literally, when I sat down in the pew and it started, a seizure began.  Most of my seizures haven’t amounted to much since July of 2007 after my first craniotomy.  They are pretty small in intensity.  As we stood to sing Amazing Grace, it came on stronger and I had to sit.  I took an ativan and waited about 5 mins.  No relief.  I took another – still wasn’t subsiding.  So, my Father-In-Law helped out of the service.  I wanted to be in the car with the air running.

 Rachael came out and after a total of 45 mins elapsed, I made the call to go to the ER.  I was there from about Noon to 6pm.  They IV’d ativan and morphine since my left arm had smacked the gurney so many times.  Not much else to say.  It was brought under control and that is what I knew would happen by making the trip but it’s not too fun. 

I feel pretty good now.  I have had 3-4 since – small ones, which is common after a large seizure like this.  We are opting to look at this as a one-time event and not be reactive and start changing the meds around.  This could be gamma knife related.  I’m still in the 6 month post period when seizures can ramp up.   More to come on all of this.

 Just to be safe, I’m having an MRI later next week, then leaving for Lake Tahoe as planned for a nice getaway on Friday morning – regardless. 

 Cheers – stay in today…

Subscribe by Email RSS Subscription

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!

Subscribe by Email RSS Subscription

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.

Subscribe by Email RSS Subscription

I think the effects of the Gamma Knife surgery are really beginning to come to the surface now.  You might recall from the past (review for regular readers) that my brain tumor is right on the motor strip in the right frontal lobe.  Therefore, the targeted area involved the motor strip and seizures was one of the likely effects of this type of procedure.  My surgeon told me that they would likely become more frequent and increase in frequency.  When you think about it, I received 60Gy (Gy is pronounced “grey” which is the unit of measurement for radiation) of IMRT radiation over 5 weeks.  Gamma knife was about 24Gy in one shot.  It’s not difficult to understand how this might create some trauma.

I’ve had focal seizures (seizures confined to the left side of my body – typically in my left shoulder and arm) here and there but there seems to be some regularity developing in spite of increasing meds and folding in a new drug.  I’ve only been on the new drug for a little while so I need to give that time but the only way to describe the feeling in my left arm is it feels like there is a seizure right under the surface that could break through at any time.

I’ve had seizures on 4/28, 5/1 and 5/4.  Yesterday was laughable!  We are refinancing our 1st mortgage – hey if you haven’t do it.  It’s a good time!  Anyway, we were getting some final paperwork notarized and sent out in a fedex store and just as everything was laid out, I felt it coming on.  Perfect timing!  We needed to get this stuff out but what am I supposed to do?  I told Rach that I need to take a quick walk.  So I walked down the strip mall where it looked nice and quiet so I could go finish my seizure and return to sign the paperwork!  How lame is that?!  Luckily it was a normal 5 minute deal and Rach had all the signature lines all organized for me.  I was also glad that my oldest son didn’t follow out – he hasn’t seen that side of this and I’d still like to keep it that way.

I need to find out another answer here.  I’ll keep tracking it with log.  I haven’t had to log these since my 1st surgery really but this is when logging is important.  You simply can’t remember details like when it occured, the duration, if you took medication to stop it and any other info you need to document that may be important.

Other than this issue, I’m still feeling good – plenty of energy.  Something is working but I’m concerned mostly about brain swelling and want to avoid steroids which is where they would go if we can’t control it with standard anti-convulsants.  I’ll get it figured out though.

Subscribe by Email RSS Subscription

As I wrote earlier, I had a seizure on Saturday, March 14th.  My doctors indicated it was likely a coincidence.  I wasn’t so sure but I received sound advice from Sutter, as always, that I should discuss my medication levels with my Neurologist because she was concerned – my seizures will likely increase as I move forward in time.  I called on Monday and have an appointment this next Monday.

In all of the hoopla regarding the vaccine, I didn’t mention that I had another seizure on Tuesday – about the same severity.  This one was at work – but at least I was in my office and not attending a meeting.  Of course I’m concerned about this occurring and I’m concerned about not being able to work because of this.  It’s frustrating.  I got through it though and went home and was able to reach my Neurologist and we came up with a plan to increase Keppra incrementally over several days.  So far that is holding.  Seizure control is a fine balance and not an exact science as I have learned first-hand from my Neurologist.  He is very good at what he does, as is everyone that has been treating me.  I have truly been blessed.  I am taking three different meds to control this and he adjusted all of them up/down at some point during my treatment.

We knew this would happen but not this soon.  I haven’t spoken to my Neurosurgeon but I am curious whether she still thinks this is coincidental or not – I haven’t had seizures like this until now – post Gamma Knife.  So, we’ll see.  For now, things are ok!  It’s really just part of the process here.  I have been told they will increase but we will be praying that they don’t.  I feel comfortable that we have been proactive to deal with it at the advice of my Neurosurgeon and if I do have issues, there will be more adjustments.

On the treatment front, my Neuro-Oncologist is really in a waiting pattern with treatments such as Avastin purely due to the Gamma Knife surgery.  Anyone has to wait 4 weeks to allow healing before resuming chemo or chemo-like treatment.  So I’m doing the best I can.  Yesterday was a good day – I had some good strength after work and threw the ball around with Aidan in the backyard which was great and then made a cardboard butterfly with his photo on it that he then decorated for school.  It was good for us.

More to come

Subscribe by Email RSS Subscription