Today is the day that the battle really begins. Later on this afternoon, I'll be checking into the University of Washington Medical Center (the Spa) to begin my immunotherapy. I'm very excited for this thing to get started, but not as as excited as I am for it to finish.
I've had a very strange mixture of emotions lately regarding this trip to the hospital. In addition to the excitement to start, I'm scared out of my head. Mostly because of the unknown. I don't know what to expect while I'm in the hospital. I do know that I have a room to myself, a television and unreliable wifi, but I don't know how I'm going to react to the medication. I do know that my heart is full with the love and support of tons of people all over the country and at least one dude in Hong Kong. I don't know how the medication is going to affect the cancer. I do know that I love my family and friends and have thousands of reasons to beat this melanoma into submission. I don't know what I'm worried about-I've got a freaking superhero cape!
Tuesday, August 28, 2012
Saturday, August 18, 2012
It's Nice to Meet You.
It occurred to me this weekend that I have not introduced myself. I realize that most of the people reading this already know me, but perhaps there are some that would like to know me better or don't know me at all.
My name is Rick. I'm 42 years old. I've been married to the luckiest woman in the world for 12 years and we have produced two daughters that are 10 and 8 years old. If you ask me, they are the most beautiful things in the world. Clearly, they take after their mother. I am a stay-at-home dad and love taking care of my daughters. My wife works her tail off to provide the four of us with a fantastic life in the Pacific Northwest. We've been in the Seattle area for the last 4 years after being in Denver for 10 years (My wife and I met and fell in love there and thought we would be there forever...). We have both been blessed with loving families and great friends from all phases of our lives--childhood, high school, college, etc.--that are scattered across the United States.
I grew up in a great family. I'm the youngest child of three. I have an older brother by five years and a sister who is three and a half years older. My parents are getting ready to celebrate their fiftieth wedding anniversary next month. (Congratulations, Mom and Dad. I'm sorry you had to cancel your African safari.) We had great family vacations, wonderful holidays and genuinely like each other--usually. I never lacked for anything, but wasn't given everything. It was the kind of childhood that I hope to give my children.
None of this may seem very remarkable to you and I think that's point. It's not very remarkable, but at the same time it is tremendously precious. I have so much to live for that the thought of not being around to see my daughters grow up or not growing old with my beautiful wife is absolutely gut-wrenching. In the past I have thought of such horrible scenarios in passing, easily dismissing the thought with a "I don't have to worry about that." Now, it's the reason that I fight.
I've had lots of people ask me if I ever wonder "Why me?" or "Could I have done something differently?" or "What if we found out sooner?". The answer is of course, of course. How could I not think of those things? But here's the thing: it doesn't matter. I'm not going to dwell on trying to figure out the answer to why this is happening because it's not going to change the fact that it is. We need to focus all of our energy on the fight ahead and trying to figure out why this is happening to us is not going to help. I would love to find meaning and I hope to someday, but I'm not going to dwell on it or feel sorry for myself.
My name is Rick. I'm 42 years old. I've been married to the luckiest woman in the world for 12 years and we have produced two daughters that are 10 and 8 years old. If you ask me, they are the most beautiful things in the world. Clearly, they take after their mother. I am a stay-at-home dad and love taking care of my daughters. My wife works her tail off to provide the four of us with a fantastic life in the Pacific Northwest. We've been in the Seattle area for the last 4 years after being in Denver for 10 years (My wife and I met and fell in love there and thought we would be there forever...). We have both been blessed with loving families and great friends from all phases of our lives--childhood, high school, college, etc.--that are scattered across the United States.
I grew up in a great family. I'm the youngest child of three. I have an older brother by five years and a sister who is three and a half years older. My parents are getting ready to celebrate their fiftieth wedding anniversary next month. (Congratulations, Mom and Dad. I'm sorry you had to cancel your African safari.) We had great family vacations, wonderful holidays and genuinely like each other--usually. I never lacked for anything, but wasn't given everything. It was the kind of childhood that I hope to give my children.
None of this may seem very remarkable to you and I think that's point. It's not very remarkable, but at the same time it is tremendously precious. I have so much to live for that the thought of not being around to see my daughters grow up or not growing old with my beautiful wife is absolutely gut-wrenching. In the past I have thought of such horrible scenarios in passing, easily dismissing the thought with a "I don't have to worry about that." Now, it's the reason that I fight.
I've had lots of people ask me if I ever wonder "Why me?" or "Could I have done something differently?" or "What if we found out sooner?". The answer is of course, of course. How could I not think of those things? But here's the thing: it doesn't matter. I'm not going to dwell on trying to figure out the answer to why this is happening because it's not going to change the fact that it is. We need to focus all of our energy on the fight ahead and trying to figure out why this is happening to us is not going to help. I would love to find meaning and I hope to someday, but I'm not going to dwell on it or feel sorry for myself.
Monday, August 6, 2012
Where's the AAA Triptik?
One of the things about having this disease, that doesn't have a proven roadmap, is that there seems to be a lot of potential routes to get to Curedville. That's great. The problem is that most of the routes that point to Curedville end up as dead ends (Is there a different term I could use, please?). To be honest with you, if we can only find our way to Remissiontown, I would be pretty psyched. In fact, I wish more people lived there.
We've been spending a lot of time over the last couple of weeks learning about the different routes available to us and trying to make a decision of which way to go. Our medical oncologist (I'll introduce you to her later) is kind of like our navigator. She has presented us with a couple of options and explained to us the possible roadblocks, detours and bumpy roads that may lay in our path. By the way, she's been fantastic with us so far.
The first leg of our journey will involve some pretty serious drugs and a couple of extended stays in the hospital. After I'm finished with my radiation treatments (which are beginning to show some results in the form of less pain), I will immediately begin the immunotherapy interleukin-2 (IL-2). I'll be in the hospital for 5 days receiving up to 14 infusions of IL-2 followed by a week at home and then back to the hospital for 5 more days and up to 14 more infusions. This one could prove to be a bumpy leg of the journey with some pretty serious side effects including low blood pressure, irregular heart rhythms, accumulation of fluid in the lungs, fever, vivid dreams (sweet) and very rarely death (not so sweet). The response rate to high-dose IL-2 ranges from 10% to 20% and approximately 4% to 6% of patients may obtain a durable complete remission and be long-term survivors. In other words, there is a 20-60% chance of durable remission if I have any response rate, but there is only a 20% chance of that. That should clear it up for you if you are Yogi Berra. Seriously, it would be pretty sweet if this route took us directly to Remissiontown.
Turns out that there are some routes that are not available to us at all. Some treatments require that I and/or my cancer have certain characteristics. One of them is a very new drug that in order to be effective, my cancer needs to have the BRAF V600E genetic mutation (If you want to know what that is you'll have to look it up yourself since I'm not a doctor). The drug is called Zelboraf and it has shown to be very effective at extending the lives of those with metastatic melanoma. That is very exciting news except for the fact that I have tested negative. Sorry folks, this road is closed.
Luckily, we do have another highway that is open to us. This one involves a treatment called adaptive T-Cell therapy. Basically, my own t-cells are harvested from my body, cultivated in the lab and supercharged (my term, not a scientific one) and then introduced back into my body. At the same time, I would be given another drug called Ipilimumab (or ipi for those not so nimble of tongue). This is another form of immunotherapy and has shown some very promising results also. If necessary, we will be heading down this road after the IL-2 leg of the journey.
I'm convinced that we will get through this. Don't get me wrong, I know that things are going to suck for a while. There are no shortcuts. We'll make wrong turns, run out of gas and wish the road was smoother and shorter, but we will make it to our destination.
We've been spending a lot of time over the last couple of weeks learning about the different routes available to us and trying to make a decision of which way to go. Our medical oncologist (I'll introduce you to her later) is kind of like our navigator. She has presented us with a couple of options and explained to us the possible roadblocks, detours and bumpy roads that may lay in our path. By the way, she's been fantastic with us so far.
The first leg of our journey will involve some pretty serious drugs and a couple of extended stays in the hospital. After I'm finished with my radiation treatments (which are beginning to show some results in the form of less pain), I will immediately begin the immunotherapy interleukin-2 (IL-2). I'll be in the hospital for 5 days receiving up to 14 infusions of IL-2 followed by a week at home and then back to the hospital for 5 more days and up to 14 more infusions. This one could prove to be a bumpy leg of the journey with some pretty serious side effects including low blood pressure, irregular heart rhythms, accumulation of fluid in the lungs, fever, vivid dreams (sweet) and very rarely death (not so sweet). The response rate to high-dose IL-2 ranges from 10% to 20% and approximately 4% to 6% of patients may obtain a durable complete remission and be long-term survivors. In other words, there is a 20-60% chance of durable remission if I have any response rate, but there is only a 20% chance of that. That should clear it up for you if you are Yogi Berra. Seriously, it would be pretty sweet if this route took us directly to Remissiontown.
Turns out that there are some routes that are not available to us at all. Some treatments require that I and/or my cancer have certain characteristics. One of them is a very new drug that in order to be effective, my cancer needs to have the BRAF V600E genetic mutation (If you want to know what that is you'll have to look it up yourself since I'm not a doctor). The drug is called Zelboraf and it has shown to be very effective at extending the lives of those with metastatic melanoma. That is very exciting news except for the fact that I have tested negative. Sorry folks, this road is closed.
Luckily, we do have another highway that is open to us. This one involves a treatment called adaptive T-Cell therapy. Basically, my own t-cells are harvested from my body, cultivated in the lab and supercharged (my term, not a scientific one) and then introduced back into my body. At the same time, I would be given another drug called Ipilimumab (or ipi for those not so nimble of tongue). This is another form of immunotherapy and has shown some very promising results also. If necessary, we will be heading down this road after the IL-2 leg of the journey.
I'm convinced that we will get through this. Don't get me wrong, I know that things are going to suck for a while. There are no shortcuts. We'll make wrong turns, run out of gas and wish the road was smoother and shorter, but we will make it to our destination.
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