For Dad on Father's Day

Sea Fever

I must go down to the seas again, to the lonely sea and sky,

And all I ask is a tall ship and a star to steer her by,

And the wheel's kick and the wind's song and the white sail's shaking,

And a grey mist on the sea's face, and a grey dawn breaking.

I must go down to the seas again, for the call of the running tide

Is a wild call and a clear call that may not be denied;

And all I ask is a windy day with the white clouds flying,

And the flung spray and the blown spume, and the sea gulls crying.

I must down to the seas again, to the vagrant gypsy life,

To the gull's way and the whale's way where the wind's like a whetted knife;

And all I ask is a merry yarn from a laughing fellow rover

And quiet sleep and a sweet dream when the long trick's over.

By John Masefield

Happy sailing, Dad.

It's All About Waiting...

John's having a very good day, with a minimum of side effects from the drug cocktail that he now takes daily. I'm happy to report that his lung is back to normal and he was released after four days in the hospital. They will do further routine monitoring over the next few weeks, but it looks like the air leak is healed and we will be flying home soon. Lesson learned...one that most of us already know...stay away from Cedars Sinai, or any hospital, if you possibly can! Even routine procedures have risk, and human error is possible even with the most skilled medical team. (Exception to this rule: Mayo Clinic in Rochester, where human error is almost nil! Why? Because they are superhuman!) It's amazing to think that John was walking around with a collapsed lung for two weeks and didn't even know it...a testament to how strong a guy he is! This would have stopped most people in their tracks!

He began the chemo regimen on Thursday, which consists of three different drugs taken orally. The goal is to stabilize heart and lung function and reduce levels of Lamba light chains, also known as amyloids, in his bloodstream. The amyloids have been on an upward march and the hope is that we will see significant reduction over the next few months. We will return to Mayo on August 15 for reevaluation. At that time there will be a determination as to which treatment plan is optimum given John's condition in August: chemo-only or transplant. The key issue in that determination will be the overall strength of his heart; if they feel he is doing well on chemo and the amyloids are declining, John may opt out of the transplant process altogether.

So once again, we wait. Then we wait some more. It's all about maximizing results and minimizing risk...and waiting!

Hope everyone's having a great weekend and we'll write more very soon!

Obstacles in the Road

As we knew from the start, the process of transplant is highly complex and one learns to be patient and adaptable. After several days of testing, the transplant team has advised that we delay the transplant for 2-3 months over concern that John's heart function is outside of the required parameters. Specifically, we need to reduce the level of a heart enzyme called troponin, which is a biomarker of cardiac injury on a cellular level. In John's case, this injury is the result of the amyloid deposits that are making his heart muscle less elastic and therefore less efficient at pumping blood. They are recommending a new chemo combination, which in many patients reduces troponin levels after a few months. These drugs are taken orally and thankfully can be taken at home. John will be monitored every two weeks through a blood test, with all results going directly to the Mayo team. Though we were very disappointed at this news, it is not uncommon for patients to experience delays in the program due to unforeseen complications. At least two other guests here at the Transplant House are here for their third evaluation after having been delayed in similar circumstances. We know that staying focused in the face of an ever-changing challenge is key, and we are hopeful that the new drug regimen will give us good results.

In the meantime, John's screening chest x-ray showed he had a badly collapsed lung and a significant amount of fluid. The assumption is that when Cedars drained fluid from his pleural cavity a few weeks ago, they put a small hole in his lung. The good news is that they discovered it here at Mayo and the very excellent pulmonary team sprang into action. After four days in the hospital the hole has almost completely resolved on its own (without surgery) and the lung has expanded to normal size. John is breathing better and we are hoping that he will be released from the hospital within a few days. He will have at least two follow-up visits with the pulmonary team, as well as with the cardiology department.

So that's it in a nutshell! Thanks to everyone for staying in touch...we'll keep you posted on this week's events!

Where Body, Mind and Spirits Soar

John and I arrived Tuesday in beautiful Rochester, Minnesota, ready to begin a week of evaluation and to prepare for John's next treatment phase. We are happily ensconced in our home away from home - the amazing Gift of Life Transplant House. All residents here are awaiting or have already received a stem cell or solid organ transplant. Their stories are all amazing. Our room is on the third floor of this 1909 house, overlooking a tree-lined street that is postcard-beautiful. Many of you have asked for the snail mail address, so here it is. Just address any mail to us, care of:

Gift of Life Transplant House - Room 64
705 Second St. S.W.
Rochester, MN 55902-2986

We are excited to see old friends here in Rochester and to once again be awed by the standard of compassion, care and expertise by all those at Mayo Clinic and Transplant House. The gorgeous sculpture pictured here is entitled "Man and Freedom" by Ivan Mestrovic; it greets all those who are fortunate enough to walk through the main lobby of the Gonda Building and is one of our favorite works of art here. Below it in the same area is a grand piano, where patients as well as accomplished musicians are invited to play. At Mayo, one is always reminded that the Mayo brothers strongly believed in the idea that art and music nurture the spirit and enhance the healing process. They worked tirelessly to take medicine to a higher level and were some of the first to practice integrative medicine before the concept even had a name.

The testing has gone very well and we are looking forward to meeting with the head of our transplant team, Dr. Gertz, on Monday. Thanks to everyone for your good wishes and special thanks to all those at home who are making it possible for us to be here. We couldn't do it without you.