Fundraising on both coasts!

West Coast Marathon Event for The Leukemia and Lymphoma Society
We are very appreciative that Ed's cousin Sue Wyckoff Mehrwein and her husband Jim have included Edward on their Team in Training homepage for an upcoming half marathon in Eugene, Oregon. Check out Ed's picture and story on the Team in Training website;
http://pages.teamintraining.org/oswim/eugene11/teammehrwein

A message from Jim and Sue;
"Walking to Save Lives - Welcome to Mehrwein's Team In Training home page.
We are training to walk the Eugene Half Marathon as members of The Leukemia & Lymphoma Society's (LLS) Team In Training. All of us on Team In Training are raising funds to help stop leukemia, lymphoma, Hodgkin lymphoma and myeloma from taking more lives. We are completing this event in honor of all our personal friends and family members who are battling blood cancers. These people are the real heroes on our team, and we need your support to cross the ultimate finish line - a cure! Please make a donation to support Team Mehrwein's participation in Team In Training and help advance LLS's mission. We hope you will visit our web site often. Be sure to check back frequently to see our progress. Thanks for your support! Jim & Sue Mehrwein"

Ironically, we are making plans to visit Ed's beloved Uncle Don (Sue's father) in May near San Francisco, and we are meeting up with Jim and Sue at a family reunion. We are very honored that they have included Ed on their team, and commend them for their major fundraising campaign and amazing running feats!

Remember to check Ed's blog for upcoming information on the "Go Out and Make it a Great Day!" Race on June 5th on the East Coast!

Monday, February 28, 2011

Dear diary:

A setback?

I have begun over the past week to experience some rib pain in my right side once again.

It's not excruciating, like it was last March, April, and May. It has not affected my activities, or my sleep. It's not even worth taking pain killers for it.

But inevitably, concerns begin to arise. Am I suffering a setback in my recovery from multiple myeloma? Are my bone lesions and blood and marrow cancer returning? Or have I just been too active, trying to get chores done? Have I unconsciously slept in an uncomfortable position, or simply moved wrong? One sometimes hears people with bad backs say this. Could it be true in my case as well?

All the emotions and worries of last spring and summer begin to come back to me. I toughed it out well then, at least I think I did. Will I have to do that a second time? How often can one be beaten down and still come back? Do I have enough fuel left in my gas tank to make this trip again, if needed?

The good news is that I should not have to wait long to find out. It so happens that I have an oncologist consultation already scheduled for this coming Friday, plus an IV infusion of meds that includes Aredia, the bone-building compound. I won't have to wait long to get answers to my questions and be treated for problems. What's more, I have a second appointment with my stem cell oncologist the following Wednesday, where I'll have the opportunity for the same.

Good timing.

And there's other favorable news. Today is the last day of February. With March always comes hope for better weather and a brighter day. Even if a bad storm happens to pass through, its effects are quickly dissipated.

With that realization, my spirits are already lifted.

Being Ed's caretaker is the easiest job in the world. Oddly enough my alter-ego "Nurse Cratchett" has been totally unnecessary. Ed consistently remains cheerful, upbeat, positive, and very thankful for everything he has. Hence the amazing recovery. I am totally convinced that Ed's recovery is due to his amazing spirit, and the good vibes from all his family and friends.

I also need to reiterate what Ed has expressed since the onset of his diagnosis. Thank you just doesn't seem to do it! There isn't a day that goes by that we don't think about and appreciate the many acts of kindness. Every call, card, gift, meal, Facebook message, and words of encouragement are appreciated. Not to mention holiday excursion gifts and a huge team of Tamarac rakers!

How can one repay such kindness? Simply by paying it forward. Our first way to accomplish this is by working hard to support Heidi Bentley Barcomb's Dragonfly Experience half-marathon and walk on June 5th, in honor of Ed for the benefit of NYOH Capital District Cancer Resource Foundation funds.

This was the charity that Ed choose because it helps strapped Capital District cancer patients with much needed funds for their treatment. We witnessed a lot of needy patients during Ed's treatment and stem cell transplant ordeal, and this organization is vital. A start to pay it forward.

We already know there is an army of supporters that will participate in this "Go Out and Make It a Great Day Race." Anyone who would like to help out can keep track of the developments on this blog, or on Heidi's websites at: heidibarcomb@thedragonflyadventure.com and the Facebook group "The Dragonfly Adventure."

NYOH Foundation http://www.newyorkoncology.com/
Capital District Cancer Resource Foundation is a not-for-profit foundation created in March 2000 to help provide funds for daily living and support services for Capital District Region residents undergoing cancer treatment.


Finally, I wanted to share the the lovely article that was published in the Frost Valley YMCA Camp Fall newsletter concerning our experience with the "Chillin In The Catskills" Cancer Retreat Conference held last October: (Click on page 4)
http://content.yudu.com/Library/A1pyld/FrostValleyLifeFall2/resources/index.htm?referrerUrl=http%3A%2F%2Fwww.yudu.com%2Fitem%2Fdetails%2F249278%2FFrost-Valley-Life--Fall-2010

"A man's growth is seen in the successive choirs of his friends" - Ralph Waldo Emerson
We are truly blessed to have your friendship and support!

Tuesday, February 8, 2011

It's a bitterly cold and blustery day here in Rexford, NY. Perfect for staying indoors, and taking stock of where I am and how I got here.

Job 1 is to make sure that I lose no ground. I've come so far. I must resolve to pay close attention to all my doctors, heed their views, and adhere to their recommendations. Stay on top of my medication schedule and my nutrition, and try to listen to what my body is telling me. Begin to crank up my exercise routine, and build and restore my body. Realize that my days as an "Olympic athlete" are over (snicker-snicker), and move now at a more reasonable and productive pace. Do all that will prevent retreat.

Just as important: thank those who helped and supported me. The army that backed me up would have routed Genghis Khan. It starts with my wife, daughter, and sister, and continues with my brothers, step-mom, in-laws, step-children, cousins, aunts, uncles, nieces, nephews, other relatives, and all my friends. It has been said that the gift of healing is fostered by a supportive social network. After thinking of all those mentioned above, I realize now that I couldn't help but achieve remission.

Part of that army was the huge team of friends who contributed as well. The number of phone calls, letters, visits, lunches and dinners out, e-mails, Facebook greetings, and well-wishes has been uncountable. So many sent greeting cards, gift cards, books, magazines and magazine subscriptions, food, desserts, favors, and blessings my way that I began to feel like a pasha on the Turkish throne! From Peter, who hand-knitted a prayer shawl (it obviously worked!), to Linda, Bill, Barb, and Frank (who gave till it must have hurt), to the wonderful forty friends who showed up to rake my lawn (and the countless others who would like to have been able to come but couldn't), to those who contributed to and arranged for a wonderful new picnic table for under my tree, knowing this would permit me to relax and recover outdoors.

Some have arranged for us incredible vacations, real time to heal and relax. To Ann, Sandy, Tom, and Judy we owe a huge "thank you" for two wonderful weeks at a stunning beach front condo in Naples, Florida (I highly doubt there is a more beautiful spot in the world). How does one repay such generosity for THAT? Also in Florida, Scott and Marsha, my in-laws, were incredibly generous with their home and their culinary talents (they should have their own TV show). Even more heroes helped us reach Florida. Aaron and Kristie made their own bed ours, a huge sacrifice. It was a great time to visit with John and Jan, treasured brother and sister-in-law. Hearts were lifted.

To Sue, we owe much for healing time-outs on Cape Cod (a great place to clear one's head and heal the bod. She has the key to a balanced life!). And a wonderful long weekend at Salem, Massachusetts, filled with tales, laughs, beverages, food, and road trips was hosted by Richard and Rich. Thanks to all!

The list goes on and on. They are all unthankable, due to their sheer numbers, and for the monumental contributions they made to my recovery. What words could possibly be adequate?

Finally, I must mention the incredibly competent medical personnel who treated me. Please know that at no time did I ever doubt that you would succeed, and at no time did I ever question your course of action. You were all that convincing, that professional, and that powerful. And it's obvious that you deserved my trust. I hope it showed. You made it an incredible ride.

You all got me to where I am today. Thank you!

Friday, February 4, 2011

Remission!

I have arrived! Today's oncology appointment represented the culmination of all that I have sought and achieved for the last ten months. The "R" word! Season over! The Stanley Cup of the Myeloma League. The World Championship ring at the dramatic conclusion of the Oncology Playoffs. Yogi Berra jumping into the arms of Don Larsen. Champaigne flowing like waterfalls in the Cancer Clubhouse.

Blood tests this morning show no sign of the myeloma in my system, and all organs functioning at optimum level. No question it's a major milestone. Remission Control announces remission accomplished!

Oddly I feel rather neutral about it all. I expected the news, and rather judged myself to be in remission a long time ago, despite my lack of a medical degree. I didn't even brag about it at first when I arrived home today. Why? Well, while I don't feel fabulous, I have felt better over these recent months than I have in a decade. Furthermore, I've always known that I have a bit of an iron constitution. In addition, I've all along had great confidence in the team that was working behind me, from my chemo oncologist and his staff to my stem cell oncologist and his team as well. I've had access to the best and the latest in treatment. I could feel the improvement while the weeks sped past (or should I more accurately say, crawled past). And I had extraordinary help and support from family and friends. What cancer could possibly outlast all that?

So the doctor's announcement truly did not strike me as a big deal.

But there are some things I must always keep in mind. The right to fly the latest championship flag over Peck Stadium lasts only as long as the off-season. My health will need to be monitored, probably for the rest of my life. Cancer always gets the opportunity to try for a comeback come the next campaign, and make a stab at tarnishing my trophy. What's more, I continue to consume huge amounts of medication, and I must admit a hint of trepidation here, as my liver and kidneys face a constant barrage and the meds cruise through my body searching for a disease to attack. Finally, the damage to my bones will probably always be there. The days of carting around sheetrock or tossing shovelful after shovelful of wet snow over my shoulder are gone forever. I will need to take the steps and invest in the machinery to make myself independent in alternative ways.

I say it's a small price to pay.

So let's cheer. I've won the Vince Lombardi Trophy of the Oncological League. And on Super Bowl weekend.