TIP FOR BLOOD CANCER PATIENTS: If you have a PICC line, do your best to take good care of it.  I highly recommend purchasing large plastic gloves that can fit your entire arm and tying two rubber bands tightly around to prevent water from entering your line when you shower. You can find these at medical supply stores or ask your hospital if they have any readily available for you to take home. I can’t stress enough that it is absolutely vital you do as much as you can to minimize potential infections.

A typical PICC line

A Friend Indeed

By: Hester Hill Schnipper

Hester Hill Schnipper, a licensed independent clinical social worker, is a breast cancer survivor and the chief of oncology social work at Beth Israel Deaconness Medical Center in Boston. She also manages an online breast cancer support group on the hospital’s website.

It can be painful and difficult to learn that a friend has cancer. You may feel that you don’t know how best to help or even, sometimes, what to say. You want to support and love your friend, but you may not know how. What’s more, your friend may seem unreceptive, easily irritated and generally not herself.

When a friend has cancer, the usual rules and responsibilities of a close relationship change. No longer will you have a 50-50 or even a 70-30 connection. Instead, for the duration of your friend’s treatment, you will need to carry at least 90 percent of the friendship, and your needs will come a distant second.

There will be times when your friend wants to speak only about cancer, and other times when he does not want to hear the word. So although you may think that the details and problems in your life are unimportant to someone who is struggling through chemotherapy, there will be times that your friend will be desperate to have a normal conversation and want to hear all about your job or relationships. How will you know which time is which? Listen to your friend’s cues.

Here are a few specific suggestions that may help you support a friend with cancer.

1. Wait for your friend to bring up details about a pathology report or staging. Don’t ask questions; let him take the lead.

2. Refrain from asking about the prognosis or, after treatment ends, whether the doctors know if the treatment has worked. (They don’t. Only the safe passage of time will answer this question.)

3. Remember that saying things like, “Anyone could be hit by a bus tomorrow,” is neither reassuring nor helpful.

4. Respect your friend’s individual experience. Do not tell her about others who sailed through chemotherapy or, alternately, suffered each day of treatment.

5. Send cards and e-mails and call often. You want your friend to know that you are thinking about him, and that he does not need to get back to you soon – or at all.

6. Call your friend if you are nearby or when heading out to run errands and ask if she needs anything.

7. Drop off a meal or do a carpool run or care for her children. A fabulous resource is www.lotsahelpinghands.com. This is a private way to organize useful help among friends and community groups online.

8. Offer to do something specific rather than saying, “Call me if you need something.” And then offer again later.

9. Send a small care package occasionally. This can be bubble bath or a couple of cotton scarves or trashy novels or some other small treat.

10. Ask your friend if he would like you to visit or if, later, he might like to come visit you. Dont assume that you know the best time to get together or when he most needs company and support.

Be ready to be flexible. Most important, stay close. All cancer patients find that some so-called friends abandon them after a diagnosis. Cancer can last a long time, and people move on. Good friends are those who are with us for the duration, who listen carefully and who say, “I’m here.”

Meet Teresa Li. Close friends and family like to call her Teri. She’s been happily married to her husband for 37 years and currently has two beautifully grown children.

Teri and her family

A couple of years ago at an APAMSA (Asian Pacific American Medical Student Association) National Conference in Washington, D.C., she and her husband, Dr. B Li, gave blood samples to join the National Marrow Donor Program. Never in a million years would she have even imagined that she would need to be on the receiving end of a “gift of life” from someone else. On February 10, 2010 Teri was diagnosed with AML (acute myelogenous leukemia).

I was incredibly astounded to hear from AADP (Asian American Donor Program) that she still has not located a marrow donor match yet. According to her Facebook Group, Teri writes quite eloquently that education has always been her passion. She has tutored in inner city schools, taught Navajo children in New Mexico, and been a continual source of inspiration to youth in the Midwest.

In her spare time, she volunteers at food pantries and shelters for women. She’s also affiliated with the Children’s Hospital of Wisconsin. The list doesn’t end. While she is going through a major diagnosis, Teri also takes care of her father-in-law who just turned 90 years old this past May.

Please take the time to share Teri’s story with your friends and family. If you are a high school teacher please think about encouraging your seniors to join the registry when they turn 18. I urge you all to take 10 seconds out of your life to begin circulating the following website … especially those of  you who are social media experts: http://www.teamteri.org

It continues to baffle me that I have completed 8 rounds of high-dosage chemotherapy as of late June! My health care team and wonderful friends have celebrated with me during the most crucial and joyous moments. My body is recovering diligently, but slowly. My immune system is still quite fragile.

I am now transitioning from consolidation treatment into maintenance therapy by essentially taking oral chemotherapy pills (methotrexate and 6 mercaptopurine). This will last 18 to 24 months roughly as an important preventative measure to ensure that I will never relapse again. Luckily, my health care team will be watching and monitoring my dosages carefully so that I can maintain an excellent quality of life.

Speaking of life … I will be resuming my plans to become a licensed teacher. I am on my way to pursuing a dual Master’s degree in Education with teaching credentials in one full sweep!

At the same time, the tone of this blog will change in the upcoming weeks and months ahead. I’d like to continue writing for other patients in need by introducing their stories to the public. I’ll be sharing information about tips and suggestions I have learned along the way to maximize patient advocacy and care. I am looking forward to working behind-the-scenes with the Asian American Donor Program (www.aadp.org), Asians for Miracle Marrow Matches (www.asianmarrow.org), and the Cammy Lee Leukemia Foundation (www.cllf.org) to encourage as many university students and other young adults to join the National Marrow Donor Program registry.

I am extremely proud to say that Team Janet has collectively recruited 4,537 new donors to the registry. Only 10, 463 more people to go! While it may take several years to reach 15,000 donors, it’s a goal that still remains of utmost importance to me.

Even though I’ve gone through a harrowing experience that has changed my life completely, I’d like to think that I’ve emerged from it with a new perspective. You have a whole new appreciation for everyone and everything when you’ve nearly had it all taken away from you. Thanks for indulging me; I am ready to crumple up my sleeves and advocate!

Janet is currently in a similar situation to former UCLA basketball coach John Wooden, receiving critical health care and undergoing intensive treatment. This is her reality now. She will be going on a hiatus from writing as she receives medical attention from specialists on a host of issues that have occurred because of her treatment for acute lymphoblastic leukemia. Side effects of her chemotherapy treatments mean her liver is “very angry right now” and she doesn’t know about the condition of her kidneys. ALT and AST levels are extremely high. Her LD levels are very high too. She is currently coping with peripheral neuropathy and is limping on one leg. She is also coping with a lot of anxiety and is finding it very difficult to sleep and gain rest. These side effects, and others, are the real battle scars that chemotherapy leaves. On the outside she may appear to be a very
young 23-year old woman, but on the inside she has gained the maturity and insight of someone closer to 45 or 50 years old. Janet uses everything she knows intellectually and what she’s learned in life lessons to communicate with her health care team.

For the moment, the “Commander-in-Chief”/Head General of Team Janet has elected to wage furious, albeit private, warfare. She asks that you please keep her in your prayers, and protect her as big brothers and sisters. Know that she is doing everything she can to gain and keep control of the situation and is frequently strategizing with her health care team and specialists to protect her health and save her life. She has asked us to write and communicate this to you under her alias for the blog.

Sincerely with much gratitude,
Team Janet

I find it most fascinating (with a lot of empathy and an attempt at understanding) when I learn about patients who attempt to keep a brave face through it all while they’re trying to deal with a set of different cards life has given them. Here’s a list of 14 topics running through my thoughts at this current moment in time on Monday morning, Memorial Day 2010:

1) incurable cancers

2) different economic backgrounds – from the rich to the poor, lower middle class, upper middle class, even prisoners (yes, I have seen prisoners at the hospital and a couple have been just a few doors down from my room)

3) lack of access to healthcare, access to healthcare

4) when to push and grovel a.k.a. fight for the things you need and then when to silence that voice because it’s actually better to stay quiet

5) English as a Second Language

6) difficulty of categorizing young patients from 18-24 years of age – are they pediatrics, are they adults?

7) cultural differences, religious beliefs, spirituality

8 ) alternative medicine, integrative medicine, traditional Western medicine, how other hospitals practice internationally

9) the attraction of hospital business to outlier case studies

10) how to address the immunity of doctors from being jaded and how they “metabolize emotions” in the profession

11) there are days I want to just sit at the clinics and ask my physicians if I could just follow them around, observing the doctor-patient relationship from a third-party perspective

12) there are days when I want to conduct candid interviews with my health care team to understand how their roles impact their lives and how they must emotionally cope with the loss – how some do I better than others by distancing, how some quietly vent in a special room over patients regarding frustration, sadness, anger, annoyances, etc.

13) figuring out the hospital system and how it works – my findings are… kindness, respect for one another, honest answers, and friendly assertiveness.

14) here’s the kicker of them all: dealing with leukemia in a developing nation with lack of basic health care needs.

As you can probably tell, I am a bit crazy and nerdy, but when “trained” under the social sciences … it’s the first instinctive thing I do. I ask why and would love to do some “studies” on this. I have a feeling my physicians and nurses who are reading this now will laugh a little at my ridiculous behavior

Cancer is pretty stupid, I'll have to admit!

For now, please enjoy the following review of a scholarly article in the Oncology Nurse Edition. It provides a pretty well-summarized glimpse into my experience as a young adult fighting a blood cancer. I hope this speaks for all young adults going through the same trials and tribulations!

(Credit: www.planetcancer.org)

ONCOLOGY Nurse Edition.
Vol. 23No. 11
The Odo/Potter Article Reviewed
By Heidi Schultz Adams
Founder / Executive Director, Planet Cancer
Advocacy Co-chair,
LIVESTRONG Young Adult Alliance
Austin, Texas | October 9, 2009

This is a review of an article appearing in ONCOLOGY Nurse Edition.

There has been a growing recognition in recent years that young adults with cancer are a distinct demographic group with unique needs, issues, and challenges related to their age and developmental stage of life. Cancer at this time of life is unexpected, and young adults are generally unprepared to manage the experience of a life-threatening illness. As the authors point out, it may take all of their attention and capacity to master this steep learning curve and get through treatment. Then, upon entering the post-treatment phase, the enormity of what they have endured can suddenly hit home, and must be acknowledged and dealt with as they try to reorient and reintegrate themselves into the world of work, school, friends, and family. Indeed, for a young adult, the impact of cancer does not stop and may even become more overwhelming following the end of treatment.

Odo and Potter do an excellent job of cataloguing the many ways that cancer survival impacts a young adult’s life, organizing them into three primary categories: physiological, emotional, and practical. The multiple issues in each area are outlined, with the most significant ones explored in more depth and brought to life through poignant personal statements and descriptions given by young adult survivors.

In discussing the physiological impact of young adult cancer survivorship—including fatigue, scarring, cognitive changes, loss of fertility, and sudden onset menopause, among others—the authors summarize the many potential concerns of this group with the phrase, “loss of healthy self.” Indeed, the challenge of addressing the needs of young adult cancer survivors could be framed as a search to help them redefine and regain the “healthy self” in all three primary areas—physiological, emotional, and practical—through the successful integration of their cancer experience into their post-treatment lives.

The authors also relate the emotional impact of surviving cancer to the disruption of natural developmental tasks of the young adult, such as establishing independence or solidifying a not-quite-stable identity. The loss of innocence and control, along with the specter of uncertainty and existential questioning, may lead to a heightened sense of vulnerability and isolation from family and friends who do not understand the survivor’s altered worldview.

In terms of practical concerns, in addition to relatively straightforward challenges such as education, career, finances, legal rights, and insurance, Odo and Potter point out how the interruption of normal development gives rise to more complex challenges for the young adult survivor, such as public vs private disclosure and goal-setting.

This article is commendable in its detailing of the many ways that a cancer diagnosis can impact the life of a young adult survivor. However, the number and breadth of issues included only magnifies the lack of programs and resources offered by healthcare professionals to help the young adult cancer survivor. In fact, young adult survivors themselves have been the primary initiators of programs and services for their age group, including online and face-to-face peer support communities; scholarship programs; camps; retreats; and other organizations addressing specific diseases, issues, or lifestyle challenges.

The authors end on a hopeful note, pointing out that despite the many challenges, young adult survivorship also presents opportunities for growth and hope. In order for this hope to be fulfilled, the current knowledge base must inform the development of appropriate interventions and additional resources that will help young adult cancer survivors to integrate their cancer experience into their lives and regain that ever-elusive “healthy self.”

If you are in the LA area and would like to help out during the event (they still need lots of help!) please contact Gloria Chi of A3M at

I’ve done nothing really except e-mail from behind a computer. There are a lot of unspoken heros in this journey between family, friends, and strangers alike. But when honestly wonderful things come out of a situation like this, I can’t really ignore the potentially good and well-intentioned P.R. it can do for other cancer patients. While the whole issue is centered around the fight against Mr. Luke/Leuk, the whole matter is now about CANCER.

“In the next few years, cancer will surpass heart disease as the number one cause of death in the United States. Every year, more than 1.2 million Americans will be diagnosed with cancer, joining the 8 million who are presently living with this disease. Statistically, cancer is as common as acne and as ubiquitous as a male-pattern baldness.”

– Comprehensive Cancer Care: Integrating Alternative, Complementary, and Conventional Therapies. By: James S. Gordon, M.D. and Sharon Curtin

Enjoy the letter and please forward it to any friends and family you know. There’s something I want to make clear though: I desire no fame, no “celebrity status”, nothing. I had to sit down and figure out what is happening to me because I’ve assumed a face behind this for the university demographic, besides minority Americans. As soon as I heal over, I will be quick to change all my warfare uniform (a.k.a. hospital clothing) back into civilian attire, if you know what I mean. I wanted to assure you of the intentions behind all this, I guess, because it’s all suppose to be good … perhaps you can take it as my personal “revenge” against cancer.

I’m going to begin Round 7 out of 8 chemotherapy in less than a day with delayed intensification beginning with chemotherapy soldiers dexamethasone, vinchristine, and aspariginase …  but with a lot of motivation and reciprocal inspiration from everyone who cares. Thanks so much.

“I like to think, sometimes, that I come from a fairly unique background. I’m part of a 5% ethnic minority population here in the States, a 2.5 generation girl with an American-born Chinese father and a Hong Kong immigrant mother, bred into weekends at Jade Villa dim sum and shit-talking Cantonese aunties. I spent seven out of my first 11 years sweetly indoctrinated by evangelical Christians, in classrooms mixed with both pastors-in-training and quasi-Chinatown gangsters.

A one-of-a-kind story in some circles; in California and here in New York, it would probably elicit a shrug at best. What’s more extraordinary about my circumstances, though (I think at least) is the particular culture of the people that have come to surround me in this little life I lead.

You can say you’re born into a family through no conscious will of your own. You can say the friends you call your best just came to you by chance. This is probably the case with me, too. Like a sort of gravitational field pulling in dust and debris, gradually settling together into asteroids and moons in a calm and steady orbit, I guess people have settled into my life this way too. But what’s common among most of them, something that has inevitably pervaded my worldview and life decisions, is this urge to help, well, the world.

Okay, everybody wants to help the world, kind of.  Everybody wants to reduce carbon emissions, eat less meat, give aid to starving kids in Africa — that’s all fine. But the people I grew up with, they’ve adopted the principle of helping others full-on. It’s more than reading about a natural disaster and donating $50 before returning to your coffee (not that there is anything wrong with that — provided the organization you’re donating to is legit and doesn’t have massive overheads). It’s a life dedication – for some, in occupation; for others, in just plain everyday life. I’ve probably never really told any of them how proud I am of them — my father, who was a civil rights lawyer for thirteen years and uses his social justice principles in all the work he does now running a city government; my mother, always bringing in kids from China to have a chance to study in the U.S. and personally taking care of all the visa requirements; my social worker roommate who squares off with troubled kids on a daily basis; my sister, a former student organizer and feminist/queer rights advocate who once told me her one goal was simply to “help women”; my boyfriend who has a searing distaste for white collar crime and is working his ass off through law school to make sure companies stay in line; all the students in my graduate program who have worked with child soldiers, given up two years of their lives for the Peace Corps, volunteered for refugee assistance, and campaigned for changes in development policy; my group of friends back home who are all focused on benefiting society in some way through medicine, biology, law, policy, and technology. It’s really not so much the profession or the action – anybody can have a job or do something and say that it helps society in some way or another – but it’s the attitude taken, and the way that responsibility is weighted against other things.

Four years ago, when I was alone in Burma, a monk I had met at a famous pagoda in the then-capital city turned and asked me, “When you graduate from school, what are you going to do to help people?” And he proceeded to tell me stories about monks who had gone into the woods in order to teach children, risking and often suffering from malaria in the process.

I don’t remember what I answered, or if I even had an answer.  I’m still not entirely sure. I care about a lot of things – rising inequality and unemployment, free speech, journalist protection, violence against women, education, warfare, international development. I’ve studied all these things. But what am I going to do? is the $16,000 question. And I can’t tell you how many times my dad has hammered this question into me growing up — In what way is this privileged existence I’ve afforded going to somehow dedicate itself to helping someone else?

Still figuring it out.  But with a social circle like this, there probably is no better environment to figure it out in.”