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

Beginning last Thursday, I started experiencing flu-like symptoms. I did the best I could to get myself on my feet again io until last night (Sunday) but ended up going to Sutter Roseville Medical Center and was admitted. After being unable to ingest oral meds, let alone the limited food and fluid intake, this was the right call. Among other concerns I had was my inability to keep down oral anti-convulsants and the risk of seizures.

I was finally in a room at midnight. The good news – CT scan appears stable!! I would have ordered an MRI because there are no other comparison CT scans but it gave us a sufficient look.

My aim is suppotive care here. This is likely a virus. So, hydration, get food back into my system, meds back on-boardand basically get the car running again are all part of the plan

More to come. This will come to pass. Have to solve the ptoblem

Subscribe by Email RSS Subscription

On a lighter note, Keegan and I snuck into a State Dinner a few nights ago. He told me that between “Monkey” and “Lion” he’d have no problem lobbying against some of the hard-core special interests represented in the room. He was right. Monkey did a good job with healthcare and we should be seeing some changes that the people want.

Here we are:

Keegan and Dad at State Dinner

Sorry I haven’t posted for awhile! The last two weeks of our lives have just been extremely busy and heavy. I’m having a hard time getting back with close friends, let alone emailing, etc. I had a lunch yesterday with a very good friend of mine, Jake Larson, and I really just forced myself (Jake, great to see you – it was a chemo morning!) because we had been playing phone tag for 3 weeks.

My life has become much more focused on treatment since I started declining more – mainly the progressive pain, weakness and loss of use of my left left side. This is an area of a cancer survivor’s life that needs constant adjustment I have learned. How to balance being in appts all the time vs time for me, my kids and family, etc. Right now I’ve had so much treatment and appts it’s out of whack.

Tomorrow I will have an Avastin infusion and then I’m meeting a neurologist about the boyox injections in my arm/shoulder. I also started round 2 (volume 2 since I did this before for a year?!) of Temodar on Monday night.

More later,

Subscribe by Email RSS Subscription

Sorry I haven’t posted for a while. This has been one of the most difficult weeks we’ve had in a long time. As you may have seen by my prayer request, Rachael threw her back out last Friday. She has slowly gotten better but is just now starting to get back into the swing of things.

Thank God for family and friends. I have said time and time again that at the end of the day what really matters is family and friends. Have you ever really stopped to think about what truly matters in life? Certainly after a diagnosis like this I have had many questions including what really matters. Frankly, we don’t need all the things we have. We are blessed to have a nice home, transportation, food to feed our family, good schools and other essentials that many people in the world just do not have. I still remember when Pastor Rick Warren at Saddleback church in Southern California said “if you have a roof over your head, food in your refrigerator and a checking account you are wealthier than 98% of the world”.  This is a fact.  So when things go sideways, like this week when Rachael was out of commission and I’ve been out of commission in terms of being a major contributor to our household I really try to remember this.

This morning I’m feeling the full effects of the first-round of chemotherapy hitting me.  Up till this point it’s been pretty easy. And by all other accounts I’m doing just fine so I’m very grateful. I’m just extremely tired. Hard to get from place to place, give myself organized, etc. I find that when the chemotherapy starts stacking up my mental acuity is impacted in this adds to the fatigue. Between cognitive endurance and simple physical endurance with the issues I have with shoulder and leg etc. I guess I hit that wall.

But guess what? I have hit so many walls in the last three years fighting brain cancer that I can’t begin to remember them all so this is no different. I have to put 1 foot in front of the other. Sometimes, I just think about my kids and I do it for them – not only to be here but to show them not to give up. Of course they’ll realize this now but they will later and that’s important to me.

I will finish this round, my first-round,  tomorrow and then I’ll have next week off during which I’ll have an MRI.  Then I will begin round two and will keep going from there. The MRI will give us good information as to whether I should stay on my current chemotherapy regimen which is the Avastin every two weeks and Temodar every day for 21 days a month. If the MRI isn’t moving in the right direction we may switch out Temodar another IV-based chemo or perhaps an oral search as VP-16.  As always I’ll post results here. 

We are praying that Rachael will continue to get better. I think it’s been tough for the kids too, particularly Aidan.  He had a real serious talk with me last night and wondered if mom was it be okay he started drawing parallels to the problems I’m having with my shoulder and leg and I could see where he was going. I told him that mom just picked something up and hurt her back a little bit, she’s going to be better and that my shoulder and leg problems are from my brain tumor – that mom doesn’t have one.  A huge look of relief appeared on his face. He said he was fearful something was happening to her.  I felt so much for him.  Just shows how much kids take in and you just dont know how they will process everything.  He’s doing better today!

When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up –the flames will not consume you.” Is. 43:2 (LB)

Subscribe by Email RSS Subscription

My temodar treatment has been going well.  I have some nausea in the morning and use zofran for that but things are good.  More pressing is my left arm and shoulder. 

Essentially the muscles in my shoulder, bicep,  forearm and sometimes wrist/hand contract and tighten up involuntarily sometimes.  This just freezes it all up.  Because this has happened so many times, on top of seizures, a few falls and new lesions – the pain is terrible while under this tension.  I have an appointment later this month wiyj a nuerologist who injects Botox into the muscles in these cases to loosen them up.  Hopefully that will quell this pain.  I have another appointment next Monday for Avastin. 

IF you’re in the Sacramento, CA area, I’ll be speaking at UC Davis on Thursday night at 6:30pm at the brain tumor monthly meeting.  Use the contact form if you’d like information.

We were able to get away this weekend to Bodega Bay.  It was so nice!  Being on the coast withe wind in my face felt good since I havent been home to SoCal for 5 years.   Here are a few Pictures fron Bodega Bay:

More later.  God Bless!

Subscribe by Email RSS Subscription

After a long discussion at the Neuroscience Institute this morning, we have decided to go back to Avastin as the staple and use a rotating system of an additional drug month to month that will be switched out potentially – depending upon how I’m doing. For starters I will go back on Temodar. 21 days on, 7 days off with IV Avastin every other week. Temodar can be switched out for VP-16, Carboplatin or a host of other drugs. These are viable options that we think a) strike a good balance between quality of life and length of life, b) provide freedom in making choices to fold in other medications and c) hopefully provides us with a window of time to research and find a trial/treatment that is worthwhile pursuing. Even trials have drawbacks – the most significant of which to as a patient is the acceptance criteria. For me that would mean the trial would have to accept patients who have had:

1. Recurrent GBM
2. Previous use of Chemo agents (Temodar, vp-16, etc
3. Previous Surgeries (including stereotactic radio-surgery such as Gamma Knife)
4. KPI score +or> X

The problem with some trials is that you lose a lot of your lattitude, meaning you are locked into their guidelines so it’s not exactly all rosey there in the land of drug trials. Some only allow newly diagnosed, or that you cannot augment the trial with other drugs of your choosing for example.

I’ve been through 8 rounds of Temodar but I was on a 7 days on, 7 off regimen. I posted about this back in October, 2007 when I described how those first five days on Temodar went and the routine I developed. Because I’ll be on it a week longer each month, I will only be taking about half the dose. That will help in reducing side effects, mainly upset stomach. I should be able to handle this just fine. It wll be interesting to see if the cumulative effects of treatment come into play at all.

For now that’s it.

Subscribe by Email RSS Subscription

My brother Shawn came into town and has been here over the past 5 days.  It was so good to see him.  As planned, now that I’m off work, I’m trying to spend a lot more time with family and friends.  I was really sad to see him go but we will be having more visits.  I wish we lived closer.   

Here are a few great pics of Napa. 

[flickrset id="72157623537560974" thumbnail="square"]

Medical

I have an MRI this Thursday.  I’ll begin to see some Gamma Knife results (albeit difficult to see because of swelling) and we’ll be checking on the first tumor resection site and anything new of course.  I’m continuing to have a CBC done each week at the lab just to make sure my counts are good.

I’m also talking with my neuro-oncologist about starting up the vaccine in about 2 weeks.  I have 3 doses left (a dose consists of one injection into each arm) and we’ll use them in a booster fashion – every 2 weeks.  Pulling out the stops on the rest of the DCVax.   Avastin and VP-16 are the other two players in the plan along with valcyte.  Yeah!  How’s that for a brain tumor cocktail….post-gamma knife!  The positive is I’m more used to VP-16 so side effects are spread apart.  We’ll settle on everything after the MRI.

I’ll post info about my MRI later this week. 

I’m feeling at peace with things.  Getting away helps but a lot of prayer lately has helped tremendously. I was meditating on Proverbs 23:7 today.   ”For as he thinks in his heart, so is he (Proverbs 23:7, NK).  I sometimes read the devotionals on Joel O’Steen’s site and this piece asked the question, “do you ever stop to think about what you’re thinking about?”  The Bible tells us that what happens on the inside of us - our thoughts, attitudes, and motives are more important than what happens on the outside in our actions.  Jeremiah 29 tells us that His thoughts are for our good. His thoughts are for our peace. His thoughts are for our victory! 

The entire goal of course is to align our thoughts with His thoughts by meditating on His word. 

Cheers,

Subscribe by Email RSS Subscription

I’ve now completed my second week of using VP-16.  I’m now starting to feel the cumulative effects of this chemotherapy. It’s somewhat like temodar but for some reason the side effects are felt more consistently.  With temodar I would feel nauseous in the morning but it would subside by about 8 AM. With VP 16, I’m beginning to feel nauseous most of the day. My routine has been the same as it was with temodar but I am folding in more zofran to address the nausea.  I wake up just not feeling good but it goes on into the afternoon.

I’ve always stated that this blog is real meaning it’s not candy-coated. I do my best to share with you as honestly as I can - the good and the bad. The last two days have not been so good for me. I’ve been feeling sick, fatigued and a a bit down primarily because of my loss of function in my left arm. This morning in particular was a little bit of a breaking point for me. For the first time I was not able to reach my right under arm with my left hand to bathe.  I wasn’t feeling sorry for myself. I know there is a lot more to come that will be even more difficult  It was more about the physical limitations I have now and the dependency on others compared to how I used to be and it was so incredibly frustrating to me. I hit the shower wall a few times to be quite honest and because of my frame of mind started wondering what’s next.  My left shoulder is just very weak and it can’t support the weight of my arm. The tendons from my scapula to my shoulder are separating and most of the pain is felt in the AM after sleeping overnight.  I’ve been trying to use a towel lying on my left side to support my arm and shoulder arent pulling as much but it doesn’t seem to help much.   The result is if I bend over during the day to pick something up I hear pops and cracks in my left shoulder and it further stretches out that tendon.  I’m stooping as best I can but it’s just a problem I have to work as with the others.

If anyone has experience with shoulder injuries and support systems for sleeping at night I would greatly appreciate any input you have!  I think I’ll have some good information from PT tomorrow afternoon.

As I well know, this type of thinking – getting caught up in the problem – accomplishes nothing but at the same time I think it’s important to walk through whatever you’re going to feel. The reality is the same. I’m only human and it is frustrating.

It took me a while to get back into today which is where I belong and what I preach all the time. This certainly addresses the future and anything that is to come. That’s all part of God’s plan. What I find difficult is when I’m going through something like this, I’m frustrated and it IS happening today.  There’s no other way than prayer and turning it over and I’ve done that over the last three hours. Enough said

With regard to IV chemo, I will be at the infusion center tomorrow for avastin treatment.   I’ve been doing this every other week for quite a long while. On February 1, I will have another MRI. At that point will see where we are and I know that we will be guided in the right correction.

Lastly, I have upgraded the blog’s core software to the latest version. What this means for everyone else as I will be able to build in new functionality that is really exciting. Already I have put in a mobile edition of the blog that you can access with an iPhone, Blackberry and most of the major smart phones. Basically it’s a stand down version of the blog that allows you to see recent posts, comments and allows you to respond to posts on the go.  For me, upgrading the blog opens a lot of possibilities in terms of some projects I’d like to tackle when I’m not working. After all I I still have that brainy side that needs to be exercised

I will provide updates as usual. Friday is my last day of work.

Subscribe by Email RSS Subscription