Monthly Archives: August 2011

“The reward of suffering is experience.” – Aeschylus

Aeschylus was the founder of Greek tragedy. And he sounds like a real downer to have at a party.

People continue to tell me how brave I am and how much they admire my strength and how handsome and funny and humble I am (okay…not so much those last 3). I get a lot of “Looking at you, I’d never know”. And, especially, people want to know what you learn through the experience of having cancer.

I like Aeschylus’ quote. I think he sums it up nicely. You live, you learn. I think we spend a lot of our time not learning, not experiencing. We are busy. For me, right now, the world has gone from being slow and anxious while I’m in treatment, to flashing by as I rush to get school papers done or complete projects or run around doing errands. And soon, my world will shrink again to the size of a hospital room. And it will slow down to a crawl as I deal with my next transplant. There is little time in the real world for reflection. And health issues force us to slow down, re-prioritize and experience more.

So, what have I learned?

I have little tolerance for fools. I find people more frustrating than I used to. Although I try to have a deep respect for people, if something happens that causes me to lose that respect, I try to move on. I also fight more – I fight for my rights, for the rights of others. I fight for opportunities. I don’t take no for an answer, at least not on the first go-around. While, at the same time, I try to practice patience for the things I can’t control – traffic, PET scans, weather.

My memory is selective. I only have a vague recollection of my experiences the past 3 years…indeed, the past 35 years. There is something to be said for hanging on to the suffering, to the pain. It is a deep learning experience when you are going through it, but the mind tries to put that pain behind once it is time to move on. I find that both a relief and a disappointment. For all the pain and all the discomfort, there is something about the experience that I want to hold onto.

Recently, Jen and I went through a big lesson brought on by the generosity of our friends and associates. It is important to me that I share this lesson. For us, this has become an elephant in the room.

Exhibit A

A couple of weeks ago, Jen and I were handed a big surprise. Apparently, friends of ours organized a fund raising drive for us. They did this without asking and attempted to keep the whole thing anonymous. So, we were handed a letter, signed by Anonymous, that wished us well and supported us on our cancer journey. Attached to this letter was a check, also signed by Anonymous.

The generosity shown by this “Anonymous” group of people was shocking. And, to be honest, a little off-putting. Let me explain our side of this experience – and the lesson we have learned…

First and foremost, we are grateful. We have always tried to be grateful over the past few years. Whether it is a card in the mail, a gift certificate for food delivery, contributions to UCLA hospital in our name, donations to the DVD drive, rides to doctor’s appointments, lasagna delivered to our door – we have always been deeply, deeply grateful. Our friends and family have demonstrated depths of caring that we never thought we would witness. In times of crisis or hardship, the amount of support that can come from those close to you or those whom you hardly know is incredible. This generosity gives me hope and strength and inspiration.

Many, many people have made themselves available to give us help and support. We have been lucky (so far) and we haven’t needed too much in the way of outside assistance (other cancer patients aren’t so lucky). We have always tried to direct people’s goodwill towards places that serve the most good.

However, even those people who mean well, sometimes cause a little harm along with the good. People want to help – we would feel the same way if the situation were reversed. But people also need guidance. In their eagerness to be helpful or caring, they lose sight of the fact that they don’t truly understand what it is we are going through. I think all cancer patients (and pregnant women and AIDS patients and anybody not ‘normal’) share this feeling. It is part of the process of needing help, of being ‘different’ – instead of being the person who is providing the caring.

There is so much that I can no longer decide for myself. I am at the will of doctors and hospital schedules and PET scans and medicines. It is important to us that we keep control over certain aspects of our lives. One of these areas of control is maintaining our privacy and managing other people to suit our needs and our schedules.

So, we were definitely stunned when an Anonymous donation found its way into our lives.

Of course, we understand that this gift is meant with ‘good intentions’. Of course, we understand that people want to show their love and support for us. Of course, we are deeply grateful and honored that so many people in our lives have rallied together and gone above and beyond for us. Of course, we accept this gift in the nature it was intended – to help us in a time of need.

However, right now, we don’t need the money. We didn’t ask for it. We’re not even allowed to thank or acknowledge the people who generously gave it to us. And now we are responsible for it. This makes me uncomfortable.

We thought long and hard about what to do with the money. Although we are on solid footing now, we can’t predict the future.

It is important to me that I share with you our plan: We put it away in case a day comes when we do need the money. I may lose my health insurance. Medical bills may rise. My recovery from my stem cell transplant may prove more difficult than we expect. Who knows what will happen?

The money is in a separate fund. There it will sit until the day we either need it or we can pass it along to a worthy cause.

There are many, many cancer patients I know who aren’t as fortunate as us and I know they can benefit from the money. Those without insurance. Those who have lost their job. Those who cannot afford healthy food. Those who travel long distances to get the best care. Those who spend days, weeks, months away from their homes while they recover. Along with my burden, I like to think I carry a little of their burden with me as well. And, as much as you want to help me, I want to help others.

You may not see the elephant in the room. But it has been standing over my shoulder for a few weeks now.

Consider this blog post a reflection of our deepest, deepest gratitude for your generosity – to all of you. Those who donated to this cause or to any other. And to those of you who haven’t donated a thing, but continue to send us supportive comments or think about us once in awhile or pray/meditate on our behalf.

Thank you. Thank all of you for being our friends, family, audience and supporters.

In other, brilliant news – My latest PET scan is clean and I am green-lit for my allogeneic stem cell transplant. My brother has his flight booked (paid for, in part, by the Anonymous donation) and UCLA is working on scheduling and formalities. Tuesday I go in for my pre-screening tests (PFT, Echo, EKG, lab work). Hopefully, by the beginning of October, I will be locked away in a hospital room at UCLA, tubes in my arms, getting ready for the most challenging treatment yet.

Does anyone have any change for parking?

SGN-35 just approved by FDA

A benefit to all Hodgkin’s patients.

SGN-25 approved by FDA.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm268781.htm

League of Extraordinary Caregivers

I spent last week on a retreat in Canada. The experience was quite empowering and profound.

The retreat was given by the Callanish Society: http://www.callanish.org/

It is run by a group of women who have no limits to their compassion and tenderness. Throughout the week, they involved the participants in a number of different techniques which helped us cope with our individual situations, including yoga, music, art, group therapy, food, relaxation, Qi Gong and so, so much more. The staff are all working professionals and highly respected in their fields,  yet they take at least 4 weeks out of the year to run these retreats and basically donate their time.

Honestly, I don’t even have the words to describe how incredibly uplifting and powerful the Callanish experience was for me.

The team of caregivers were the warmest, most caring, loving and supportive group of individuals I have ever met in my life. They break down the barrier between doctors, therapists and patients. They embrace life – all the joy and all the pain – and they demonstrate through their own actions how anyone can lead a rich, rewarding life…even when facing some of the toughest challenges any human being has to endure.

Just to be touched in a caring way by another person is a jolt to the system to someone who is used to being poked, prodded and poisoned. To be listened to, instead of having a doctor come running in and out of the examination room. And also to listen, to fully understand that you are not alone in your experience. That we all share the same hopes, dreams, concerns and fears. To reflect on one’s life even while you are reflecting on your death. To be open and honest. Self-reflective yet open to others.

My experience at Callanish will stay with me for the rest of my life.

Also, I was honored to be the first American to attend the retreat. Usually, they reserve the retreats for Canadians, and for good reason. If word gets out about Callanish, then the whole world will be beating a path to their door. They made an exception for me based on the timing of my situation (preparing me physically, mentally and spiritually for my stem cell transplant in October). Also, they were deeply touched by Jen’s emails and discussions. Once again, Jen has shown new depths to her level of caring.

Whether at the beginning of one’s cancer journey or at the end, in remission or without a cure, male or female – the coping techniques taught by Callanish provide strength and support for those who suffer with this terrible disease.

I’m searching for ways to incorporate some of the lessons into my home life, and I’ve found a great resource in Los Angeles in the Cancer Support Community on the Westside: http://www.cancersupportcommunitybenjamincenter.org/

The CSC provides free yoga, Qi Gong, group therapy and other classes for cancer patients. An incredible resource in my own community.

Lastly, I must make special mention of one component of Callanish – the food.

They provided 3 of the most delicious, nutritious and wonderful meals for us every day. The cooking staff was just as much a part of the experience as the doctor, yoga teacher and world-renowned musician. From the cooks whose day jobs is analyzing how nutritional choices affect the blood to the dishwasher, an architect with a deep love of poetry to the sous chef, who attended a Callanish retreat many years ago when dealing with her own cancer experience and she never left. Although there was no direct connection, the Callanish menu mirrors the advice of David Servan-Schreiber in his book Anti-Cancer: A New Way of Life. Jen and I have embraced this book in our attempt to live a healthier, cancer-fighting lifestyle and it was incredible to taste such delicious food, prepared with so much love, that I could feel making my body stronger and healthier. Eating at Callandish was a humbling experience as I really understood for the first time the power and influence of the food we eat.

Oh, and the location wasn’t too bad either: http://thebrewcreekcentre.com/

The setting, the food, the people, the experience. This what health care should be like. Callanish is more powerful than chemotherapy, radiation or any kind of medicine.

Even after 700 words trying to tell you about my week – I have no words.

Callanish – Thank you.