Hey Jude

Hey Everyone,

I wanted to write any followers of this infrequently updated blog to let you all know that I am doing very well. I have been going like gangbusters since last summer and am learning the valuable lessons of taking too many things on at the same time!

If you haven't heard the news, my wife and I had a baby boy in December of 2010! Jude arrived under a lunar eclipse on the night of the winter solstice. When Bex woke me up in the middle of what would be our last night as 2 I went and took a look at the moon which had turned a fire red from the sun's rays. Magnificent!

We had attended my brother's university graduation a few nights before and he described the winter solstice as a great rebirth. The winter solstice is the shortest day of the year, each day after it gets a little longer and a little brighter. Nature can be inspiring if you choose to pay attention.

Jude arrived 13 hours later after a monumental effort from my wife. We chose the name because every time we look at him it is like looking at an answered prayer.

The two-year anniversary of my cancer passed almost unnoticed this year. All is truly well.

Flower Juice and X-Men

Troops,

I went through my second round of chemo a couple of weeks ago and it was a far cry from the first round. Lots of puking, lots of not feeling too great, a seizure, and a loss of confidence. No good at all.

It is at times like this when I am the most amazed by the people around me. They bring me back and help me focus on the next step - not the previous one. They help "unfunk" me. One needs a lot of unfunking when constant adversity is knocking. The J Karma Army International Spokesperson (who was recently featured here and here.) helped put me in touch with his friend Matt Fioretti. Fabrizio (JKA International Spokesperson - see the sidebar) is a great story teller and he used to tell me about how he lost touch with his good friend Matt and how he received a call from Matt's family one day asking him to come out as they weren't sure how long Matt was going to make it. Fabrizio went out, Matt got better, and the two of them are again close friends.

Matt has been a climber and guide for many years and he shares stories about the fight against cancer in a way which I can relate to. Matt went through 28 rounds of chemo, full body radiation and a bone marrow transplant before sending his illness out the door. This guy is harder to kill than Steven Seagal! Check Matt's story our here.

About the time I was beginning chemo I received an email from Matt out of thin air. He wasted no time and immediately went into his experience. He told me how he changed the name of his chemo to "flower juice." He told me about how this little psychological reframe completely changed the conotation of his treatment.

The new movie X-men Origins: Wolverine came out about the time I started my first round of chemo. Wolverine is the character who is famous for three blades which come out of his fists.

When I opened my bottle of chemotherapy pills I noticed that they had three little black stripes and they reminded me of the movie.

(They actually have two but two is basically three, right? Small details.)

Anyway, now when I take my chemo I pretend that I'm sending Wolverine in to kill my cancer. This is not to be confused with sending Hugh Jackman in to kill my cancer - somehow I think he'd be less effective (although he is immensely talented.) Anyone who can sing that well in public is pretty much amazing to me, but I digress.

Sending X-Men in to help might seem sort of silly but it works, and that's all that I'm interested in. Adverse times require a good attitude. Wolverine and I will be ready for round three.

update

Hi all,

I am through with my first cycle of chemo. I tolerated it well but would be lying if I said I wasn't pretty tired. Woke up this morning and almost fell over I was so tired. I'm talking about sleepy, worn down tired too, and not physical weakness. I'm luckily not there yet, and don't want to complain too loudly as many have it much worse than I. I'm just adapting to a new schedule and way of things which all revolve around this illness.

Don't know what it is like where you live but we're in the middle of spring here in FC. It is really nice. Leaves are coming out, plants are coming up, and I'm thinking about all of the Colorado destinations I hope to get to this year. I love Colorado and will try to share some photographs in the blog as we get into summer and fall. Hope you are well!

Karma Army Call to Action:
Hey, I need the youtube clip of Earl's Karma Army. I can't find it, and this whole blog is based on that clip. Help!

The Point of Recognition

I was reflecting recently about a phrase that I feel like I know well. It's called the "point of recognition," and it is the absolute moment when you know nothing will ever be the same again. Many times it is for better, and sometimes worse, but never the same. These moments happen all the time and we've all had them. When you propose to your girlfriend you know that things will be forever changed, when you have a baby you undoubtedly know this feeling. It is a very powerful feeling to experience and one should try to step back and reflect on it, and maybe write about it in a journal or diary, or blog. These are the moments that shape and define our lives - they'll never be forgotten.

The day the neurosurgeon walked into the room and immediately said that, "this is pretty darn serious," was the point of recognition for me. Everything immediately before or after that piggy backs on that one particular moment. The seizure that kick started this was a fleeting moment of uncertainty but wasn't a moment when everything in my life and myself changed.

It is human nature to adapt and form a new reality that we move along with. None of us would be here if it weren't for our unbelievable abilities to adapt. It has been 1/3 of a year since I had the seizure that started this whole thing and while everything is still pretty new I'm learning how to deal with this new reality around me. I am dependent upon anti-seizure medicine, I am not allowed to drive, and I definitely have the occasional thought of impending doom, and fear but these are all good things if you look at them properly.

While there are many seemingly negative new factors of my new reality there are twice as many new pieces that I am proud of. I've never been a very empathetic person, but I've changed in that regard at least three fold if one can measure such things. I've commented to several people that I feel part of a community. Those living with cancer and survivors who wonder if it will ever come back. I am connected in the most unbelievable way to people I hardly even know. I have rekindled friendships with childhood friends. I learn something new everyday about my body, and everytime I go to the 12th floor of the hospital I see people who are enduring and fighting. I look around and know why each and every person on that floor is there. Little people and big people, old and young, people with hair and without hair, but all trying to see one more day - all fighting and coping.

My new life is about to change again as I take chemo tomorrow for the first time. Thanks for all of the cards and well wishes. I certainly don't want to take these little pills that pack so much weight, but sometimes you have to do things you don't really want to do in order to accomplish what you really want.

The battle began at the point of recognition and maybe even before. I had to decide right then and there what the outcome was going to be. There are many miles still to go, but I will get there in one form or another. I simply try to remember to be positive. You'll get back what you put into life.

Latest news April 2009

Hey all,

Thanks again for all of the support - it has really been tremendous and has kept my spirits high. I wanted to write a quick update as I've not actually written on the blog where we're at with everything.

So...the diagnosis all along is that we think the tumor is a lower grade (with some higher grade components) but it is really big and I've probably been living with it for quite a while. Like 5-10 years. Its weird to think that I've had cancer for such a long time - kind of changes the perspective a little for me and is interesting to think about. When I was first diagnosed with brain cancer I was acting a little like I was going to go any minute. Thinking about my mortality frequently and even making sure Becky knew where to find passwords to pay certain bills and stuff. We're taught to think of brain cancer as a 2-6 month type of situation and many are. Many primary brain tumors are typically very aggressive. Mine has some aggressive components to it but I've been living with it for a long time. Of all the brain tumors I think this one is the best to have.

*BTW - anything I have ever done to any of you which was unkind, ungrateful, or anything else was because of the tumor. I apologize on its behalf.

Anyway, the treatment plan has been really complicated to come up with because the standard way to treat this normally would be to do radiation therapy (RT) and chemo therapy to begin. But, the fact that the tumor is so large (the entire right frontal lobe, and stretching across the the midline into the left a little) means that we'd have to radiate a boat load of my brain. This has really made me uneasy from the beginning but how does one choose between survival and side effects?! Difficult.

My radiation oncologist was nervous about this all along and made it very clear at the beginning that he was going to get as many people involved in the case as possible. Because the standard of care is to radiate it eventually won out and we prepared the radiation mask and everything and were ready to go.

BUT...in breaking news, I received word of an opening in the neurooncologist's schedule at UniversityHospital on Friday. We talked in depth about my situation and I think everyone in the room came away feeling like the downside to beginning with just chemo is minimal. We'll get to see how the tumor responds to treatment and hopefully shrink it to the point where if we do have to radiate we'll have much less surface area to deal with. It is unlikely that we'll lose critical time by not radiating to begin. Nothing is for sure and part of this is science and part of this is "feel" so lets all pray that this thing responds well to chemo.

It is interesting because I feel much better about this. I think I have a resonably good gut feel for things and this just "feels" better. We'll see.

The chemo I'll be starting is called Temozolomide and is taken in pill form so I'll be able to do chemo at home which I quite like.

I will likely start next week. I'll do 5 days on and bout 25 days off for about 6 months. We'll be taking MRIs frequently to stay on top of it.

Thanks for reading and for your support. Go Heels tomorrow night in the National Championship!!

Proper Hospital Ride Etiquette

I am not allowed to drive since suffering a seizure on January 22nd. This means that I either use my legs like a sucker or get a ride where I need to go. Unfortunately I need rides to medical appointments pretty frequently which is no small task given that I have to go to Denver for even the most minor of appointments. I commute via vanpool though so sometimes my coworkers let me bum a ride.

Today I had to go to the hospital to get the dilantin level in my blood taken(anti-seizure meds) from Lovely Jacqueline over at Kaiser. My boss graciously offered to give me a ride. As we sat at the corner of 17th and Downing I pompously recommended that she maybe take a left as it was an easier way to get to the hospital. The look she gave me would have killed a small moose but she very patiently reminded me that she lives about 2 blocks from St. Joes and that it was her hospital too. I thought there would be bloodshed but we continued on down 17th to Lafayette.

Turns out, this is a much better way to go...

Apparently, I'm a really awful backseat driver. My wife is already tired of this and I fear I may not be receiving rides anymore. I apologize freqently, but continue to think I could do better.

I remind all of you suffering from epilepsy or who can't drive to hold your tongue and display the proper etiquette when riding to your appointments. Failure to do so may have dire consequences. I'll have to diversify my ride givers.

The J Karma Army

I'm still pretty new to this whole "I have have brain cancer" thing, but one thing I have already learned is that I can't do this one by myself. I have been humbled and honored to learn that there are many friends and family members around me who are going to help me fight and beat this. Whether through wisdom, physical help, rides, people to talk to, or cheerleaders the J Karma Army is the most powerful force in the universe.

Cancer takes a lot of people - it is a team sport. I've needed an immense amount of help already and I'm starting this with a lot of physical strength. It is an amazing feeling to know that people are thinking and praying for you. I'm really humbled by the support I've received and will take all the help I can get. I feel like a part of a very unique and exclusive club. If you've ever had cancer or a serious illness then you know what I mean. When you visually connect with someone in the oncology ward you know a lot about that person and what they're going through.

I hope that through this Karma Army I will find the extra strength I need to battle this thing into remission, but more than that I hope we can be the karmatic force (is that a word?) that brings a lot of good out of these bummer circumstances to all cancer patients and to the community as a whole.

I don't know why I got this and I'm not spending much time trying to figure it out. I'm just going to try to bee positive, and push ahead while remembering that the love you take is equal to the love you make.

We're at the beginning of this and I'm sure I have no idea what's in store for me, but I hope that if you're reading this you'll come along on the journey and maybe learn and battle with me as part of the KA. I have a lot to share - some about this ordeal, and some not, but maybe you'll find it amusing to visit regularly.

Please join me. Together is the only way forward.

When it is Dark,
You can see the stars.
- Persian Proverb