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!

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!!

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