Blogging in B Minor

Sometimes during this battle, you can hit snags. I’ve hit a few lately

To summarize, I had not been feeling well the week of June 7th. As the week wore on I wasn’t able to keep food and medication down. Finally on Tuesday the 18th after trying to hydrate and eat bland foods for a week, Rachael and I decided that heading to the ER was the best course of action.

I was admitted into the Oncology Unit dydrated, a low white cell count and Keystones found in the UA. Not good. I was in until Thursday. I developed severe shoulder pain – I believe aasociated with the hemiparesis on my left side. I can deal with that. Great! I’ve had 3-4 good meals. I’m holding meals, fluids have been pumped in via IV and I’m doing ok so I’m discharged Thursday late afternoon.

Thursday night at home was difficult sleeping. My left arm was extrememely uncomfortable due to the same pain. When I awoke Friday my left hand was so swollen it looked round and like a baseball. We knew this wasn’t a good sign so we called the oncology unit and sure enough they recommended returning to the ER because of the risk of blood clots forming. So back to the ER! 4 hours and an ultrasound on my left hand/arm later I was back at home. The ultrasound showed no evidence of clotting anywhere and blood work showed my kidneys were fine. Back home and sleeping ok with some pain management in place

So that is the week and I’m trying to stick with the plan. This snag is done.

Today is a new day.

More to come. Need to get back on back on Chemo.

More to come…

Subscribe by Email RSS Subscription

I completely forgot to provide an update regarding my MRI! It was good news. No new lesions and the areas that were enhancing in the last two scans have diminished in this scan. Everything else is stable. Less mass effect (swelling). I also haven’t had any seizures for the past several weeks.

Aside from severe shoulder pain due to left-side weakness and the typical Temodar quirks I’m doing ok. I just think the cumulative effects of radiation (which includes the two gamma knife treatments that boosted my original dose of 60Gy of radiation by 22 Gy and 16Gy respectively) have just caught up to me a bit – radiation recall as it were but I am blessed. I am 3 years out from my diagnosis and for that I am grateful

Sometimes I think we all just get immersed in treatment to a deeper degree out of necessity. For me those deeper dives if you will are difficult when they come in sucession as they have over the past few months. I know for you other survivors reading you can relate to this and “get it”.

I also know that, for the most part, dark clouds clear in time and the sun breaks through again. It may be brief but it might just be enough at that time to keep me rolling.

To those I haven’t been able to get back with yet, I’m sorry! Especially Ben!! I will be in touch.

God bless,

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

I had an MRI on Thursday which was 30 days post-gamma knife. As you might recall, a second tumor appeared 30 days ago and I immediately was scheduled for gamma knife which was a great way to address the problem. I really prayed for was that the original tumor resection site was stable and that the Gamma knife treatment directed at the new tumor would essentially destroy most of the tumor tissue. Of course the risk continues to be centered around motor function, left-side weakness and seizures.

First, here is an image of the scan (click for a larger view):

The yellow arrow represents the original tumor. The report indicates that this is stable which is great news. The red arrows point to the new tumor location and as you can see it is now hollow to spare you the medical jargon. The only possible issue that is something to potentially be dealt with in the future is scar tissue from the recent Gamma knife procedure. Sometimes Gamma knife can result in what’s called necrosis, or scar tissue. This can irritate areas of the brain and result in brain swelling. If frequent headaches result, sometimes surgery is necessary but I am far away from anything like that, so all in all this procedure went well and I am very happy with the scan.

Moving forward the plan is going to be pretty aggressive. I have three doses of DCVax left.  We’re going to administer those over the next six weeks, two weeks apart. After the first two doses I’m going to start back up on avastin.  I will likely go back onVP-16 which has obviously done the job over the last 30 days in stabilizing the original tumor. I’ll also continue taking Valcyte. I am like a drugstore cowboy! I have an entire cabinet in the kitchen dedicated to my medications. It’s unbelievable.

Today is good. I’ve been very tired due to family and friends being in town the last three weeks so this weekend is the weekend to relax and catch up with things around the house.

Thanks to everyone for all your prayers around this latest MRI. They really mean a lot to us.

God bless

Subscribe by Email RSS Subscription

I’m glad I have an iPhone.  As I was ready to leave today for my MRI at 11am, I looked at my calendar.  It was in there for next Thursday!  Sheesh.  I have a brain tumor – what’s your excuse?!

No big deal but thank you for all the prayers. Take 2 next week.

Subscribe by Email RSS Subscription

Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!

I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion.  I had Gamma Knife in 3/08 so this will be #2

As I have more information I’ll post it here. Thanks for all the prayers and support.

God bless,

Subscribe by Email RSS Subscription

Yesterday afternoon I met with my neurosurgeon. This meeting was designed to just get an opinion as to whether or not any surgical options existed to get ahead of the growth. First off I was able to confirm that the area of enhancement and the MRI is in fact tumor. Therefore I know we have to do something to address the problem. In speaking with her there is no way surgery can be performed without the result being hemiplegia. This obviously creates a huge dilemma. One of the prognosticators in terms of long-term survival is the extent of resection of the tumor. The less tumor that exists the more treatable it is in terms of chemotherapy and other treatment modalities. However, in my case I’d be dealing with a huge hit in terms of quality of life. I would be very dependent upon others, be confined to a wheelchair and likely unable to work or it least it would be difficult. Suffice it to say it’s a huge change in life. The million dollar question is how much time does this really add my life if I were to go forward with surgery versus stick with chemotherapy only. Additionally do I want my children and their last memories of me to be in a wheelchair unable to walk, play soccer, throw footballs, get around the house, etc. I really don’t know and that’s what we are discussing right now. It may happen anyway but should I roll the dice and make that happen overnight?

For those that have been following my blog, you know that I am an advocate of staying in today but when it comes to decisions like this you have to look at tomorrow and unfortunately you also have to delve into statistics to some degree. What is the success rate of chemotherapy? What is the success rate of operating on a recurrent glioblastoma in terms of longevity. All of that has to be balanced against quality-of-life. So we are praying about it, leaning on her support network and thinking all of this through. Through prayer, we are certainly hoping that we are not confronted with this situation and that in the first 30 days of chemotherapy I respond to it. The near-term strategy is to start a new chemotherapy which could be carboplatin or a new drug that I have not researched yet called VP 16. I need to speak to my neuro-oncologist more about this. In addition, I have three doses a DC VAX left. I will likely start using those. I’m also continuing to use Valcyte. After I’ve been on this cocktail of chemotherapy and other drugs for 30 days, I will have an MRI and we will see what the tumor looks like. If it’s shrinking that is great news obviously. Even if it’s status quo that’s a good result. If it continues to go in the wrong direction then we start getting down to the difficult decision. I will likely continue to chemotherapy for an additional 30 days after that then we will take another MRI. If I continue to respond to the chemotherapy and I will just continue that regimen, thus avoiding the decision regarding surgery. If it’s moving in the wrong direction then I have a big decision. We’ll cross that bridge if we get there.

In the end, it is about living in today but we have to be thoughtful about tomorrow and make sure that we are mentally and spiritually prepared for such decisions. Sometimes we can’t even imagine how we ended up in this position. It’s surreal. But we are and we have no choice but to accept or circumstances, trust in God and put 1 foot in front of the other. This is not easy at all. Again, I would be lying through my teeth if I told you this is in our worst nightmare. But we try to take it day by day, enjoy our kids, deal with the issues and live our lives. As we formulate more of our plans I will post as I can. I’m using some great dictation software now so I can basically just speak in the text is just laid out on the screen for me with very little corrections to make.

I humbly ask for prayer at this time. This is probably one of the most difficult periods for us. Yes, we’ve been through a lot but if it weren’t for the endurance we have developed as we’ve gone through this trial this would be like a ton of bricks falling on us but we have persevered and done the best we can and we will continue to do so.

Thanks again for all the support and all the prayers. I also appreciate all the e-mails I receive from so many people. They are so encouraging and mean a lot.

Here is my MRI report. What’s important to note is under impression. The observation of increasing enhancement that likely represents neoplasm is what I needed to know. Neoplasm in layman’s terms means tumor.

More soon…

Subscribe by Email RSS Subscription

I’m slowly pulling out of this and have some time to ellaborate on my fun with the flu.  This flu is hard for anyone let alone those with a suppressed immune issue. 

First off, the strain of influenza I had been dealing with is called Haemophilus influenzae.  This is not to be confused with H1N1.  Most strains of H. influenzae are opportunistic pathogens – that is, they usually live in people without causing disease, but cause problems only when other factors (such as a viral infection or reduced immune function) create an opportunity.  As brain tumor survivors, we have inherently suppressed immune systems.   As I mentioned, my white blood cell count was 0.9 going in to the hospital and my absolute neutrophil count (ANC) was at 400.  Normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection.  Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer.  Neutropenia increases the risk of infection. 

So, I was a prime candidate which is why it’s important to have regular CBCs, which I do.  When the flu started my counts took a dive fairly quickly.  I have been on Avastin every other week The CBCs confirmed this.  The CBC on Thusday showed my ANC is at 1,200 now so I’m getting there but the week and a half of being down like this has taken its toll.

The MRI that we conducted in the hospital showed that everything is stable.  The one interesting detail is that there was an observation showing an infarct resulting from subacute ischemia.  Brain ischemia, also known as cerebral ischemia, is a condition in which there is insufficient blood flow to the brain to meet metabolic demand.  This leads to poor oxygen supply and thus to the death of brain tissue or cerebral infarction / ischemic stroke.  It is a sub-type of stroke.  This is viewed as a positive in my case because it shows that the blood supply to the area of the tumor is being cut off.  I’d venture to guess perfusion test would reveal this.  I am weaker on the left side and I have more issues with equalibrium.  I can’t be sure if this is a result of just having the flu,  an episode of radiation recall, or ischemia.  Regardless, I can’t do anything more than we are doing/have done.

Being in hospitals is not too fun obviously.  I don’t know how many bags of antibiotics were pumped through my body.  I ran a high body temp for awhile and that can make one more vulnerable to seizures (and ischemic attacks).  I had one seizure in the hospital.  Ativan handled it.  To add a bit more detail for those interested, the main symptoms of ischemia involve impairments in vision, body movement, and speaking.  The primary symptoms of brain ischemia that apply to me include problems with coordination and weakness in the body.   What is amazing is that all of this was a chain reaction that began with the flu.  My immune system is compromised and the dominos fall.

That’s it for now.   GLAD to be out of the hospital.  A prayer out to Michael who will be going in for a second craniotomy in the next week or so.  Please pray for him

 Cheers

Subscribe by Email RSS Subscription