Monday, March 29, 2010

March 29, 2010 - Survivors' Tips from Dr. Laura Liberman

When I attended the Lymphoma Research Foundation’s national meeting in New York last fall, one of the most helpful presentations I heard was by Dr. Laura Liberman, a radiologist on the staff of the Memorial Sloan-Kettering Cancer Center. Dr. Liberman spoke not so much as a physician, but as a cancer survivor. She herself has been successfully treated for lymphoma.

She evidently gave the same talk again at a more recent event at MSKCC, and they’ve posted an online video of it. It’s just 30 minutes long, and is well worth it.

Laura’s experience was, like mine, one of tables being turned. As a pastor, I’ve visited with many cancer patients, and have tried to give them what help I could. She and I both found it disorienting, at first, to assume the role of a patient. In fact, the title of Laura’s book is I Signed As the Doctor – the first several times she signed consent forms for medical procedures, she made the mistake of signing on the line marked “Doctor,” rather than “Patient.”

Here are Dr. Laura Liberman’s cancer survival tips, a baker’s dozen:

1. Reach out to your friends.
Some people can’t deal with your cancer (it’s not in their nature), but many will be grateful for the opportunity to step up and help.

2. It’s OK to cry, but try to keep it to 20 minutes a day or less.
This is no joke. An oncology nurse gave her this advice. Laura actually found it helpful to try to fit her crying into that period of time (20 minutes at a stretch, four 5-minute crying jags, whatever worked). I didn't do much crying myself, being the typical male in our culture, but I appreciate the importance of giving ourselves permission to feel sad.

3. Ask people to pray for you.
Laura’s of the opinion that prayer, from any and all religious traditions, is a good thing. If nothing else, you may receive a sense of positive energy coming toward you, and it allows friends want to do something to help you who may have no other way to do so.

4. Find doctors you can trust.
You don’t want Dr. House from TV, she says. You want someone who’s empathetic as well as technically skilled

5. Take it bird by bird.
A literary reference to Anne Lamott’s book of that title. Lamott tells the story of how her brother was frustrated at the magnitude of his grade-school report assignment on “The Birds of North America.” Their father gave him the sage advice to “take it bird by bird.” So, too, with cancer. The big picture can feel overwhelming, especially at the outset. Take it one medical procedure at a time.

6. Be sensitive to your family.
Be honest with your kids, but don’t overwhelm them with more information than they can handle. Make sure your kids know you will still be there for them.

7. Be your own advocate.
Do your own research. Bring someone with you on doctor’s visits – not only to help you advocate for yourself, and also to listen for details you will probably miss. Laura suggests “bringing your own anesthesia” – not the big stuff you need an anesthesiologist for, of course, but she sings the praises of something called Gebauer ethyl chloride, a topical application you can get at the pharmacy with a prescription. The stuff numbs the skin; it’s what they spray on kids’ skinned knuckles in the emergency room. Emla Cream, she says, is also useful, though you have to apply it a half-hour before. Not every doctor, she says, is alert to the value of preventing minor pain, like that of a needle insertion, with such topical preparations. Bring the stuff with you, though, and the doctor’s unlikely to object.

8. Find silver linings (it’s an opportunity to get new hats!).
Laura says she indulged herself, when she was losing her hair, by buying herself an embarrassing number of fashionable new hats. People want to say “You look great,” she points out – but when they can’t, you can always ask them, “Do you like my hat?”

9. Discover your inner Zen.
By this, she means whatever it is that brings you to a place of inner peace. There’s an awful lot of waiting associated with being a cancer patient, and all that downtime can lead to excessive worrying. One friend advised her to pretend each doctor’s visit is a trip to the airport – if you don’t have to wait that long, you’ll be pleased. Get an iPod, she also advises – so you can listen to music during all those waiting experiences. Putting songs onto your iPod is something teenagers can do for you.

10. Keep your sense of humor.
Nothing about cancer is a joke, but if you can focus on things that make you laugh, that’s a good thing.

11. Play the cancer card.
Every once in a while, it helps to mention that you have cancer. Sometimes people will give you special consideration (she’s got a good story about this on the video about getting a cab in New York).

12. Savor celebrations. It’s not all about the cancer!
Celebrations are important at any time of life, but especially when you’re sick. “The way you make life good is by incorporating good stuff into it.”

13. Use your experience to help others.
Give back, pay it forward, or whatever you like to call it. This can help you feel you’re going through this experience for a reason

Good advice. Check out the video!

Saturday, March 27, 2010

March 27, 2010 - Post-Traumatic Growth

Well, well. Here’s a new psychobabble buzz-word: post-traumatic growth.

OK, it’s more than just one word, it’s a couple. It echoes the dreaded “post-traumatic stress disorder” (PTSD), although it ends up being a good thing, not a bad. Mostly, anyway. To get to the good, you have to slog through some pretty rough stuff.

I read about post-traumatic growth in an article, “Cancer’s Silver Lining,” by Don Vaughan, in The author lists “five common growth outcomes” of being a cancer survivor:

• A deepened appreciation of life.
• Enhanced relationships with others.
• An appreciation for personal strength and endurance.
• Setting out on new pathways or pursuing new interests and opportunities.
• Spiritual growth and development.

I’d have to say – with no trace of bragging in my mind, just gratitude – that I’m 5 for 5 on that list.

I didn’t achieve any of those things myself. They’ve been gifts.

Cancer’s not an experience I’d wish on anyone. But if you have to get it, you may as well make the most of it. As I wrote in a much earlier post, try to emulate Jacob as he wrestled with that mysterious adversary of his at the fords of the Jabbok. See if you can put your scary opponent into a half-Nelson until he dispenses a blessing or two.

Monday, March 08, 2010

March 8, 2010 - Hope on the Horizon

The big medical conference each year in the field of lymphoma treatment is ASH – the American Society of Hematology. This year’s conference, I understand, contained good news for people like me with indolent lymphomas – particularly follicular lymphoma. Check out this video interview with Dr. Dr. Ephraim Hochberg, Director of Clinical Lymphoma Research at Dana-Farber/Massachusetts General Hospital:

An Expert's Perspective on the Latest in NHL from Patient Powerr on Vimeo.

It’s encouraging to hear this lymphoma researcher speak of turning the corner and heading into the home stretch on some long-term research efforts. The longer my lymphoma remains sluggish, the longer my watch-and-wait treatment approach continues, the more likely it becomes that some new medicine will be available when I need it.

Saturday, March 06, 2010

March 6, 2010 - Going to a Different Place

Yesterday I spent three hours in the dentist’s chair – or, more specifically, the endodontist’s chair. It was the third session I’ve had in the past week or so, with one more coming on Monday.

I’m having a root canal done on a molar that’s developed an abscess. The tooth’s had a crown on it for years, so the doctor’s had to drill a hole down through the top of the crown and leave it open all week, to relieve pressure on the abscess and allow it to drain.

Dr. Donald Fahringer, the endodontist, is fabulous. He’s obviously highly skilled at his craft, and he’s very understanding of his patients. Each session begins with 4 (count ‘em), 4 shots of novocaine – slam, bam, one after the other. No messing around. None of this, “I’ll give you a little spritz of novocaine, and you raise your hand if it starts hurting.”

While it’s thankfully been a pain-free experience, it’s by no means been a comfortable experience. Sitting with your mouth held open for hours by a stainless-steel torture instrument topped with a latex dental dam, while somebody slowly rasps away at the inside of your tooth with tiny files, then peers inside your mouth with a microscope before rasping some more, ain’t exactly my idea of entertainment.

Fortunately, I’ve had a little experience with this sort of thing. Yes, I’ve had root canals before – but, it’s been many years, and none seemed to be as extensive a project as this one. The recent experiences that seem most relevant are my two bone-marrow biopsies - one in December, 2005 and the other in July, 2007.

On both those occasions, I instinctively knew I had to take myself to a different place – to be present, as I needed to, when the doctor needed to ask a question or to instruct me to turn a certain way, but otherwise I drifted off to a different plane.

During the bone-marrow biopsies, I randomly chose an object across the room to serve as a focal point, and focused my eyes on it, as I somehow burrowed down deep within my own consciousness. I can’t tell you how I did it, exactly, but I did it. I was there, but not there.

This time – with Dr. Fahringer’s permission – I brought my iPod into the chair, set it to pick songs randomly, and stuck the earbuds in as soon as he got started. I could hear and feel him doing things inside my mouth, unpleasant things, but I felt detached from the experience. I could just about hear his voice, over the music, when he asked me to turn my head toward him or open wider, but then, once I’d complied, I settled back into my own private la-la-land.

It’s one of the little lessons the cancer experience has taught me – not to mention the experiences I’ve had with contemplative prayer. Pain is real, discomfort is real, but up to a certain point, we have the power to influence the way those negative forces affect us.

All we have to do is go to a different place.