4 Months

It's been about 4 months since my last post.  I'm not exactly sure why I haven't posted, but I imagine it might have something to do with denial.  This post was supposed to come a lot sooner and it was supposed to be very short.  You know, something you could fit on a postcard like, "The weather is beautiful in Remissiontown.  I wish you were here.  The End."  Unfortunately, it's much longer than that and it's not all good news, but there is lots to be hopeful about as well.

IL-2 face

Since August, I have had some of the best and worst days of my life.  At the end of August, I spent 7 days in the ICU at UW Medical Center receiving my first round of high dose IL-2.  These would be some of the worst days.  The doctors and nurses kept telling me that they hadn't seen anybody do so well with the side effects.  Of course, they weren't the ones in the bed with the racing heart, low blood pressure, nausea, itchy skin, diarrhea, lack of appetite, fever, 25 lbs of extra water weight or, frankly, the cancer.  That sounds mean and I don't mean to be; everyone there was awesome and they were all hoping for a great outcome.  It's just that if I was doing well, then I can't imagine what it would have been like to have a severe reaction.  Anyway, I managed to receive 13 of the 14 scheduled infusions that visit which was very encouraging.  We went home for a week of rest and recovery knowing that seven days later I would be back in the ICU for another 14 scheduled infusions of IL-2.

The biggest difference between the two visits had to be the anticipation.  Before the first trip, I was actually a little excited to get the ball rolling and really start attacking the cancer.  Before the second trip, I knew what to expect and knew that the reactions would be worse.  So that week in between was nice because I was relaxing at home, but there was always a dark cloud on the horizon waiting for me.  The second visit was worse, for sure, but not nearly as bad as it could have been.  In fact, I was able to receive all 14 infusions which surprised a lot of the staff at the hospital and they told me that they never see a patient have more infusions in their second visit.  That sounds encouraging, right?

With the sibs at the O's playoffs

Anyway, after we left the hospital which was in the middle of Sept we had about 6 weeks of time to wait to see if the IL-2 had any effect.  That gave me some time to have some of the best days.  There were several visits from great friends and wonderful family and a great trip back to Baltimore (my hometown) for a fantastic weekend with old friends and Oriole playoff baseball (who would have thought?)!  Cold beer, steamed crabs and old friends made for some great medicine.  In case you were wondering, the cancer diet may have taken a vacation that weekend as well.

Just when it seemed that everything was back to normal (remember the denial I mentioned at the beginning?), it was time to head back to see Dr. M to see if the IL-2 had the desired effect or any effect at all.  Well, it turned out that I was not a 6 %er. The IL-2 had no effect at all.  Actually, the new scans revealed additional tumors.  Yippee.....

Then it was time to begin the second leg of our journey to Remissiontown.  In case the IL-2 treatment was ineffective (it was), back in August I had some T-cells harvested and sent to the lab to replicate and supercharge so that at some point in the future I may have them reintroduced to fight the cancer.  This was in preparation for a clinical trial to have adaptive T-cell therapy in conjunction with a regimen of ipilimumab.  We have been pretty excited to be part of this study since we found out about it.  It was good to know that we had options after the IL-2.

Anyway, we were ready to start that the Monday before Thanksgiving.  As a requirement for the trial, I needed to have a brain MRI to be sure that I did not have any active lesions.  Guess what they found in the MRI?  No, not a big empty space.  There was a tumor about 2 cms in diameter in the left side above my ear.  Good news, we found it early.  Bad news, no trial.  That really hit me like a ton of bricks.  We had really gotten geared up for the the trial and were ready to get started.  Now we had a serious roadblock.  We also had to make a big decision.  I could either have brain surgery or have gamma knife radiosurgery.  We met with another doctor, this time it was a neurosurgeon, Dr. Steadyhands to weigh our options.  He told us that the surgery (here's a video describing the surgery starring Dr. Steadyhands) was pretty straightforward, but that the tumor was in a spot that presented some risks of damage to my language center and complex association (my wife would argue that that is already damaged).  On the plus side, with the surgery, the tumor is removed and gone for good.  Dr. Steadyhands also described the gamma knife procedure for us as well.  Basically, about 200 beams of low dose radiation are focused precisely on the tumor in an attempt to halt its growth and potentially kill it.  The plus side of this is that the procedure is much less invasive, but the results won't be known for several weeks.  The tumor is still there and would need to be monitored with MRIs on a regular basis.  Did I mention that we found out all of this information on the day before Thanksgiving?  Well, my wife and I had to make a big decision and cook a turkey, so we were swamped.  By the time the bird was being carved we had decided on the gamma knife, but weren't able to talk to the doctor until the following Monday and that seemed like forever.  Luckily, we had our friends and family to distract us with a wonderful Thanksgiving holiday.

Getting ready to go under the Gamma Knife.

That takes us to December.   Whew....  We started the month with the gamma knife.  It is really weird to think that they were going to seriously mess with my brain around lunch time and I'd still be home for dinner.  The worst part of the day was getting the frame attached to my head.  Let me explain.  In order to be sure that the gamma knife is as precise as possible, a metal frame is attached to my skull and then locked into the table that I on which I lay.  This both for the MRI that is done for precise mapping as well as the procedure.  The frame is attached first thing in the morning and then I get to spend the rest of the day Hannibal Lechter style.  While the frame was attached, I was able to provide my wife a great deal of entertainment by attempting to eat a tuna melt sandwich.  The actual procedure only took about 40 minutes and was completely painless.  If I wasn't the patient, I would have been completely awed by what was able to be done.   The recovery was also pretty painless although I did experience some headaches and still have some numbness and tingling on my scalp from the anesthetic that was used.

Some swelling a couple of days post-gamma knife

The best part of the whole thing is that at my next appointment with Dr. M, she told us that she thought we could still get into the T-cell trial.  Woohoo!  I would only be eligible though if the brain tumor had been stabilized.  And we won't know that until the follow up MRI.  Naturally that wasn't going to be scheduled for about four weeks--Dec 28th.  This made for a long Christmas season, but again, I was buoyed by the love and support of my family and friends.  Also, Jenn let me off the Cancer diet for the holiday, too.  Seriously, how am I supposed to stay away from the cookies?

My cells!

That pretty much brings us up to today.  Right now, I'm laying in a bed in the Clinical Research Center at the University of Washington Medical Center as the nurse is hanging the bag that contains my supercharged T-cells to be infused over the course of the next hour.  In preparation for this moment, I have had another MRI that verified the stability of the brain tumor (Hooray for gamma knives!), a dose of cytoxan (a chemo drug) to prep for this infusion and one dose of ipilimumab.

This leg of the journey will take us until March.  Let's all pray that it ends with me sending you a postcard about the weather in Remissiontown.

Heading to the Spa

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!

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.

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.

Mayhem on a Molecular Level

As I mentioned in my last post, I started radiation treatments last week.  Quite frankly, so far I haven't noticed a difference unless being in more pain counts.  Actually, that's not fair.  The radiation oncologist, let's call him Dr. Zapper, aka the Cancer Ninja, said that I may experience a little more pain before things started to get better.  He said that initially we may inflame the tumor (Great, let's make it mad) which in turn would put more pressure on my spine which would in turn cause more pain.  I should be starting to feel some relief by the end of this week.

The whole radiation process is pretty simple and I don't feel a thing.  I'm driven to my appointment, I wait in the waiting room, I'm escorted to the radiation room, I take my shirt off, I lay on a table for 15-20 minutes, there's some buzzing, I get up, get dressed and drive home.

I am expecting some side effects to kick in soon, but so far it just makes me feel pretty tired.  I'll probably get some sunburn, which I find very ironic, and also a pretty sore throat due to the proximity of the tumor to my esophagus. So I suppose it could be a lot worse.

Dr. Zapper, aka the Tumor Assassin, has also informed me that 4 weeks of radiation is a compliment to me.  If I was older, was in worse shape, had other health issues or was in more dire straits, he would have recommended a much more aggressive and shorter approach which would not have been as effective.  With the 22 doses that he has prescribed, we are able to attack the tumor with a sniper rifle instead of a hand grenade.  This approach will allow us to minimize damage to other tissue innocently standing by.

Everything sounds great, but the reality is that the radiation treatment is kind of like taking cold medicine.  We are doing our best to treat the symptoms, but aren't doing anything to attack the cause.  That comes later with the immunotherapy.  In the meantime, I will be a good patient and keep very still on the table while Dr. Zapper, aka The Irradiator,  creates mayhem on a molecular level.  As he said, "I'm fighting evil, so you don't have to."

Beginning

"This is a devastating diagnosis."  That's what the oncologist said two weeks ago.  I was in his office for what I thought was a throw away appointment to get the results of a CT scan.  Instead, he sat me down and told me there are several spots on the scan that concerned him (brain, spine and lungs).  He continued to tell me that I was most likely looking at stage IV metastatic melanoma. 

After the follow up tests confirmed the diagnosis, everything has changed.  All of our energy is now focused on fighting and beating this "freaking disease" (that's what the oncologist called it).  The statistics are really crappy, but as my high school basketball coach always said, "Stats are for losers." and I am not a loser.

We have taken control of everything that we can take control of.  My wife, Jennifer, is spear-heading my new diet which is now all organic, non-dairy, non-sugar, mostly non-fat and without red meat.  (It's bacon I miss most).  We have also done tons of research on treatment options and, with lots of help, tons of research on doctors and treatment facilities.  Also my parents have rented a home nearby to be close so that they can help however we need them to.

Now what?  Additional testing did reveal some relatively good news.  An MRI showed that there was nothing in my brain (insert your own joke here).  However, the tumor on my spine is actually pressing against my spinal cord and that is the most immediate danger.  I've already started radiation treatments to halt its growth and relieve the pain that I'm having.  That will continue for the next four weeks.  After that, we will move into the immunotherapy portion of the fight.  More on this later.

In the meantime, I am so thankful for the amount of support and love that has been thrown my way since this has started.  I am so blessed to have so many wonderful people in so many places thinking of and praying for me.  If love could kill this cancer, I would already be cured.