Thursday, June 14, 2012

Back From Sunny Seattle

Hanna and I just returned from Seattle yesterday and are still in recovery mode after a quick journey from coast to coast and back.  I was discharged from Georgetown after a week of chemo on Friday and then on Sunday we headed to the Evergreen State for our Monday consultation and tours of the Fred Hutchinson Cancer Center which is a part of the Seattle Cancer Care Alliance (SCCA).  After a smooth flight we rented a brand new red Ford Fusion to cart ourselves around Seattle.  We were impressed with the SCCA house lodging, which is a part of the Cancer Center and an apartment complex for patients and caregivers.  It has a  zen garden, media room, library, common lounges and each apartment has a small kitchen.  The people were great and it was a perfect place to get some good rest before a very long day on Monday. 

Monday started very positively when we met an older gentleman on the shuttle who was back for his 7 year follow up after his bone marrow transplant.  He had great things to say about the center and the whole transplant process.  This guy really was inspiring and helped fill us with all sorts of good positive vibes.  The clinic is an extremely efficient and well-oiled machine that cranks out transplants like crazy.  Our first appointment was with Dr. Paul Martin for our initial consultation.  He is a brilliant doc who has been working in bone marrow transplants for over 35 years; however, he did not have the warmest bedside manner.  He was definitely a statistics guy and spent the first good hour dwelling on the percentages associated with transplants and going into way too much detail about the technical aspects of what exactly takes place.  He didn't give us any information that was new; it was just his matter-of-fact way of talking about numbers that was extremely overwhelming and very depressing.  After a whirlwind of numbers and details, he told us about all the wonderful benefits of having the transplant in Seattle.  This place has been doing transplants since they were invented and all of the doctors and nurses focus 100% of their time on the care of transplant patients.  The whole building is designed to give people who need marrow transplants the best shot possible.  After a tough start to the day, Dr. Martin echoed a thought that we have had since the beginning of this whole journey.  He said, "For you, percentages do not matter.  You will either be 0% or 100% and there is no reason that you will not be the 100%".  We're hanging onto that.

After meeting with the doctor, we met with a financial representative who was wonderful and will help us through the mountain of insurance paperwork and everything along with relocating.  Then a nurse gave us a tour of the clinic which included a library, cafeteria, many lounges, a kitchen stocked with food and drinks for patients receiving treatments, and a business office where you can use computers, printers, fax machines and whatever else you might need while you are there.  Around every corner was another person welcoming us and making us feel like we would be taken care of and loved during our time there.  It is inspiring and hopeful to know that our care will be so comprehensive and that there truly is a building full of people that will help us through every step.  Knowing that all of the patients there were going through similar treatment gave me a new sense of hope that we'll all be fighting this together.

Having enough cancer talk for the day, Hanna and I were ready to explore Seattle a bit before heading back to the airport to catch the red eye back to DC.  Developing our habit for beating the odds, we had a beautiful, clear, and sunny day to check out the city.  We walked around Pike Place Market with drinks from the first ever Starbucks, ate kabobs while catching some sun in a beautiful park overlooking the water, and took the touristy trip to the top of the Space Needle.....which was extra amazing because of the clear day.  We had great views of Mt. Rainer, the entire city, and all of the distant mountain ranges.  The last stroke of luck for the day came at the airport when we got moved into the exit row for the long flight home which translated into actually being able to sleep all of the way.

For now the search is underway for a suitable bone marrow donor.  Being of northern European descent is an advantage since the matches are tied to ethnicity, but it is still like trying to find a needle in a haystack.  It is so important to have a massive pool of potential donors so that everybody that needs a match can be paired.  If you have not joined the marrow registry yet, it is really simple and can be a lifesaving choice (I can't stress that enough).  My match finding process should take 4 to 6 weeks and, in the meantime, we will be back in DC waiting and continuing to get chemo at Georgetown to keep me in remission.  If a good match is found, we could be headed out for the 3 to 4 month process sometime in July.

This whole situation continues to be terrifying, overwhelming, and exhausting; yet, at the same time, it has affirmed the power of prayer, the importance of hope, and the amazing force of love in this life.  The love of my beautiful wife, my family, my friends, and complete strangers continue to force out and overpower the sadness and fear when they try to creep in.  It gives me hope and makes it clear that my success will be 100% and that.......

ALL Will Be Well

"Say you were standing with one foot in the oven and one foot in an ice bucket.  According to the percentage people, you should be perfectly comfortable."

“Love is the foolishness of men, and the wisdom of God.”

Thursday, June 7, 2012

A Bedside Update from Georgetown

Since I last wrote we have been speaking with people from the University of Washington and the Fred Hutchinson Cancer Center out in Seattle to make plans for moving forward.  The first step is to head out there for a consultation.  My amazing bride Hanna and I are leaving on Sunday for a quick one day meeting where we will meet everybody in Seattle and get a better picture of what will happen next and where we will be spending 3 or 4 months.  We are really excited because it will make this whole next leg much more real (that and we will get to see the first Starbucks and maybe toss a fish or two around the market).  We will meet with doctors, nurses, financial representatives, the donor search team, and take tours of the outpatient and inpatient centers as well as the long term housing options that are affiliated with the hospital.  It will put us in a much better place toward knowing what we are about to step into. 

In the meantime, Dr. Broome, as well as the docs out in Seattle, want to make sure that my leukemia stays in remission so I have been admitted at Georgetown all week getting another round of chemo.  This is more preventative than anything but it is the same regimen of drugs that I received last month here at Georgetown.  The timing of our permanent trip out to Seattle depends on how quickly an unrelated donor can be found from the bone marrow registry and how quickly everything gets set for us out in Seattle.  After we get back from our consult, I'll recover for a week or two from this chemo followed by at least one more round here at Georgetown.  Ideally, after that next round of chemo, things will be ready in Seattle and we will be able to head out sometime in July.  It feels good to know that all these balls are rolling and that we are getting closer to a final step and a FINAL CURE.  Until then, patience, prayer, perseverance, and positivity is the name of the game.  The odds are slim of being a marrow match with somebody so the system runs best for everybody if there are tons of people registered to be donors.  It really saves lives and is not much of an ordeal for the donor.  If you haven't, I encourage everybody to look into getting typed so your name gets on the registry (it's a simple cotton swab on your mouth - totally painless).  The registry is the resource that helps save people's lives all over the world.  How cool would it be if my situation helped save someone's life who needs a transplant just like me?  Get more information about becoming a donor at Be the Match Registry here:

I can't say enough about the support system that has helped Hanna and I through every step in the last 3 years of my battle with leukemia.  Since June 8, 2009 when I first got the news, our support has never wavered.  We've had visitors, meals, cards, phone calls, and a massive amount of love sent our way.  These are the things that make the day to day manageable and inspiring.  A huge thanks to my cousin Vikki who has organized a fundraiser that will help us with our expenses as this battle heads west to Seattle.  Her support and the generosity of everybody who has donated is overwhelming, and we are forever grateful.

Well, my day at the hospital is passing along with excessive amounts of the game show network and crossword puzzles so I guess I better get back to this episode of Lingo!  I will be discharged tomorrow and then off to Seattle on Sunday!  Much love, God bless, the fight goes on and......

ALL Will Be Well

“Abide in peace, banish cares, take no account of all that happens, and you will serve God according to His good pleasure and rest in Him.”