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.