I AM LIFE

INTERNATIONAL AMYLOIDOSIS MYELOMA AND LYMPHOMA FOUNDATION

Alice Chen
Alice Chen

 

 

 

A Miraculous Second Chance in Life


Alice Chen

 

March, 2008


 

Foreword

 

In late 2006, former Houston Asian Chamber of Commerce Chairwoman Alice Chen discovered that she had developed a rare and potentially fatal disease called amyloidosis.  In the course of her treatment, she also found out she had developed thyroid cancer that eventually required surgery and radiation therapy. 

 

A year later, Alice has miraculously recovered and returned to the Chinese community in which she had been active for over 25 years.  Having been given a second chance in life, Alice decided to dedicate her life to those most in need of help, but do not know where to turn to.  Her plan, with the support of volunteers, is to launch a multi-lingual web based cancer support network, which she hopes will provide the much needed help for cancer patients in their battles with cancer.  The purpose of this article is to tell her story and hopefully inspire others to support this endeavor.


 

Life as I knew it

 

Nothing brings clarity to life better than a close brush with death. My year long battle with cancer made me realize that life is unpredictable, and what happened to me can just as easily happen to anyone. I hope that, with my experience, we will all come to believe that we are but visitors in this world, and we should do our best to help and care for each other while we complete this journey together.  

 

Until a year ago, the story of my life was unfolding just as I had hoped for.  Following a traditional path, I had studied hard as I was growing up in Taiwan, came to the US for graduate school, finishing with a master degree in finance; started a family with a husband with a PhD degree, built our careers, and brought up two outstanding children.

 

Accomplishments seemed to come to me naturally as long as I worked hard. I had no formal communication training.  But since I love radio broadcasting, I ended up hosting a weekend Chinese community program for 6 years. My financial planning career was growing, evident by the various awards I received.  Serving the community has always been my passion, which led to services as the chairwoman of the Houston Asian Chamber of Commerce, Asian community representative for Congressman Al Green and as the only Asian board member of Houston PBS, playing host for the annual membership drives on the air.

 

Life was hectic but fulfilling.  I was known as an energetic person.  I was generally in good health.  Even in those rare occasions that I came down with minor illness.  I seemed to bounce back easily.

 

Discovering Amyloidosis

 

All this changed in October of 2006 and my life was turned up side down.  I started to feel tired and sluggish and I was noticeably losing weight.  Routine tests showed that my urine protein level was too high.  Three months of intensive testing, from blood test, MRI, PET Scan to kidney biopsy, followed.  Finally, I was referred to have a spinal tap, a frightening prospect just by the name of it.  I was tired of testing and the fear of not knowing at this point was indescribable.  But I was still optimistic that the doctors would have a solution.

 

The first time I heard of the term 'amyloidosis' was a week after the spinal tap.  I still remember the way my doctor delivered the bad news.  He told me that he wished I 'just had cancer' and amyloidosis was far worse than cancers.  He continued to explain that it was such a rare decease that he did not know what the proper treatment was and he was not aware of any specialists in Houston that he could refer me to.  I was in such a shock. My mind was a blank.  I didn't think his words even registered.  

 

The 'verdict' was rendered right around the Chinese New Years, the busiest and most festive time of the year for the Chinese community.  I was exhausted.  I was in despair.  But I did not have the heart to give my friends the bad news, nor did I want to let my community down.  So I went to the various functions as expected.  As my husband drove me around, I was secretly biding my friends' farewell, thinking that this might be the last time I would see them.

My darkest moment came in the Minnesota winter.  With the help of my daughter and son-in-law, both happened to be medical residents, I learned through them that the only medical faculties specializing in diagnosis and treatment of amyloidosis were the Mayo Clinic in Minnesota and the National Amyloidosis Center in UK.  An arrangement was made for the M.D. Anderson Cancer Center in Houston to coordinate my treatment locally, with specialist support from the Mayo Clinic.  But a new team meant a new round of testing.  In February, my daughter accompanied me to Minnesota for a whole week of non-stop tests and examinations.  As I moved from appointment to appointment, my mood was black.  I was numbed from both the endless process and the freezing weather outside.

The decision came down to bone marrow transplant or chemotherapy.  My health could no longer sustain me for the transplant.  So I chose the latter, knowing that the outcome was by no means certain.  Having my daughter by my side for the decision was a blessing.  Her support made the decision so much easier.

I regained hope as I returned to Houston in March to prepare to start chemotherapy.  The spring had come.  The warmer weather, the support from family and friends and the familiar surrounding gave me new hope.  Looking out the window at the blooming Azalea in our backyard, I realized that I still had much to hope for and I must fight on.

 

Amyloidosis

 

Amyloidosis is a group of rare and potentially fatal diseases that occurs when an abnormal protein called amyloid deposits in one or more organs.  Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and the gastrointestinal tract.  The exact cause of amyloidosis is not well understood.  Signs and symptoms of amyloidosis vary depending on the organs affected with some patients having no symptoms at all. The wide range of signs and symptoms makes amyloidosis difficult to diagnose.   In addition, amyloidosis has a very low incidence rate of about 8 in a million in US.   Thus, many family doctors are not familiar with this disease, which can further delay the diagnosis and treatment.

 

 

Surviving Cancer

 

The key for becoming a cancer survivor is finding the right medical team.  Dr. Michael Wang, my attending doctor at the M. D. Anderson Cancer Center, was from Shandong Medical College and a very caring and skilled physician.   He took time to explain the process and side effect of chemotherapy to me.  He was very careful, rigorous, and disciplined in designing and adjusting my treatment procedure.  Dr. Wang was often away for international conferences.  But he always scheduled my chemotherapy during the periods that he was in Houston.   He was aware that I suffer a great deal from the side effect of chemotherapy, so he paid close personal attention to the process.   Once, a resident physician discharged me out of the hospital over Dr. Wang's objection.  I ended up with a high fever that night and had to be returned to the emergency room.  The episode convinced the residence of Dr. Wang's better judgment. 

 

The extensive care and support of my husband, children, friends and doctors sustained me through the 5 months course of chemotherapy.   Finally during one visit in July, Dr. Wang showed me a medical chart with a smiling face.  In an exciting voice, like a kid, he explained to me that the test results have shown remarkable changes in my body, and that all indices have returned to normal ranges; and that my amyloidosis had been successfully controlled with chemotherapy!!   I still have that medical chart posted over my desk as a daily reminder of my miraculous second chance in life.
 

Not the end of my story

 

Sadly, overcoming amyloidosis was not the end of my story.  I always like ice skating.   To celebrate my recovery, my son accompanied me to a nearby skating rind to re-live the happier time we had together.   Unfortunately, a collision with a group of teenagers sent to me to the ice.   Whether it was the side effect of the chemotherapy or my lack of exercise for a year, I ended up with a fracture in my leg, a surgery and was laid up for a month.   When Dr. Wang called to inquire about my recovery, I was embarrassed to tell him about my accident and that I misunderstood his word of 'back to normal', which  probably did not include risky exercise like ice skating.

 

Physicians were aware that amyloidosis patients often developed thyroid problems. In a follow up appointment in August, my internist, Dr. Shuiwei Gao, noticed a small tumor in my thyroid.   A biopsy, which I thought was routine, revealed that the tumor was cancerous.   Dr. Sherman and Dr. Evans, two renowned thyroid cancer specialists in the M.D. Anderson Cancer Center, promptly performed a thyroidectomy, which was followed by radiation therapy.   The four hours operation, though routine, was another blow to my body.   I was on no-salt diet for a month after the surgery and I will have to take thyroid hormone replacement for the rest of my life and have a follow-up examination every year.

 

My second misfortune with thyroid cancer brought home the importance of early detection in cancer treatment.  Depending on perspective, because of my amyloidosis, I was fortunately monitored closely at M.D. Anderson Cancer Center, which allowed the thyroid cancer to be found early and treated promptly.  For most cancer patients, the worst nightmare is finding cancer after it has metastasis, which complicates treatment and greatly reduces the rate of survival.   In my case, The M.D. Anderson Cancer Center clearly lived up to its reputation as the number one hospital in cancer treatment and its vision of 'Make Cancer History'.


Friends and Family


Surviving cancer takes more than medical treatment.   The will to live and fight on comes from the patient and the support of friends and family.   Not surprisingly, some of my friends did not know how to react to the news of my illness, and simply became distanced.  The support of the majority, however, was heart warming.  They visited me.  They sent encouragements, flower, books and even teddy bears.

 

My illness brought out the tender side of my husband that I didn't know existed.  To my eye, Patrick has always been an 'engineer', pursuing life as if it is a series of 'projects'.  As an engineer's wife, I at times wondered where his priorities were; was it his job, his computers, his daughters or me.  As I became ill, he spent many long hours accompanying me to appointments.  He held my hands at my bed side in the hospital, fearing that I would simply slip away in the middle of the nights.  It was the many little things.  When he told me that after 30 years together, the thought of living without me was just unbearable, those were some of the most romantic words to me.

 

My children changed their life to take care of me.  My daughter and son in law moved to Houston to be close to me.  Their first daughter, my first grand child came in last August, was another reminder than I had so much to live for.  My son spent so many hours before and after school in my hospital room I was starting to worry that it would seriously affect his pursue of becoming an ophthalmologist.  It was a relief when I learned that he passed the exam for his license.

 

Even with all the support, battling cancer is a lonely pursue.  So it was particularly hard for me when I lost two friends to cancer during this period.  Chi Wang, a talented painter, discovered that she had developed pancreatic cancer around the same time I had my amyloidosis diagnosis.  She published an open letter in the local newspaper entitled 'Alice, don't cry' to urge me to fight on before she passed away. 

 

Former Taiwanese Chamber of Commerce Chairman Wen-Shin Wu's cancer 3 years ago was in remission when I discovered mine.  He was my mentor, my hope.  He taught me how to face the sudden changes that I needed to make to survive the treatment; how to first develop a new perspective to make the changes possible.  He shared his experience with me, gave me advice on how to handle the side effect of chemotherapy.  He left me several encouragements in my voice mail when I was too weak from the therapy to even talk to him on the phone.  In the June of last year, when he discovered that his cancer has relapsed, I met him in the M.D Anderson cafeteria.  He was still so optimistic that only 3 courses of treatment were required.  Then he was suddenly gone two weeks later while I was recovering from my leg fracture.  I was in such a fragile mental state, my family was afraid to give me the news and let me attend his funeral.  So I learned of his passing in the newspaper and lying in my bed on the day of his funeral, shedding tears for both of us and wondering what was going to happen to me.    



Caring and Helping Each Other in This Journey


We all have to come to term with the end of life.   Professionally, I am a financial planner, specializing in retirement planning.  I prepared an estate plan for a client with a large life insurance last year.  He passed away only a few months later.   Before he died, he asked his family to be sure to thank for completing his estate plan, so he was able to leave without worries.   He was 70 years old when he passed away.  I remember having regret for his early passing, then reflecting on my own situation of having amyloidosis and having to face mortality in my 50's.  My illness was a reminder of how un-predictable life is and that death is a certainty we all have to face.  It is just a matter of time.

 

Seeing the other patients as I moved in and out of the hospital deepened my sense of the fragility of life.   The most heart wrenching cases were the young patients moving about with oxygen masks and tanks.   Once, I was in the children section because of high fever, a side effect of chemotherapy, when the regular sections were full.   I met this angle of a girl of 8 years old in the hallway.  She was active and lively.  She told me her dream was to go to Harvard, meet a prince on a white horse, fall madly in love and has four children together.  The day before I was discharged from the hospital, I went by her ward to say goodbye.  I was shocked when the nurse told me that the little girl had died. She passed away with such a beautiful dream of a life before her, but never had a chance to find out.  I just broke down in tears.

 

I learned to derive strength by helping and caring for others.  Before my first chemotherapy treatment, I was sitting in the waiting room, nervously wondering what to expect, worrying if the nurse can locate a vein in my arm.  I remember feeling really cold.   Then an old gentleman who must be a volunteer in the hospital stopped by, handed me a blanket, held my hands and calmly said to me:' don't worry, it will be over.'   I could sense the genuine care in his voice.  I was so touched I could barely hold back my tears. Later on, as I went to the hospital for my thyroid cancer treatment, whenever I saw a patient sitting there feeling sad or crying, I always make a point of stopping by to express my concern and offering help.  The show of concern seemed to help me as much I hope would help them.

 

'Live healthier, live hopefully and die prepared' was the message of Power of Hope I attended last September.  Power of Hope is the annual gathering of cancer survivors at the M.D. Anderson Cancer Center.  More than 600 people across the U.S. attended the three days meeting.  Cancer survivors shared their experiences battling cancer.  We gave encouragement, expressed concerns, and provided supports for each other.   Doctors presented advices on follow-ups.  One speaker referred to the survivors as the lucky ones. Compared to other more sudden causes of death, he said, cancer patients tend to have more time to say goodbye to their love ones and plan for their family.  The health of the cancer patients are so closely monitored, they may have a healthier life style than many of the 'healthy' people.

 

At the close of the meeting, the chairman of the meeting called on the cancer survivors of 5 years, 10 years, and 20 years to stand up for recognition. The last person stood up was a 50 years' survivor.  She was diagnosed with cancer in her 20th.   She was still very healthy and in high spirits in her 70's.  After the standing ovation, she simply said: 'see you all next year'!


Dedicating the Rest of My life

 

As the year 2007 drew to a close, looking back to the road I traveled in the last 12 months, I suddenly had the realization that it was no longer important to ask 'why me? with these diseases?' The real question should be 'Is there a purpose that I was given a second chance in life, and what should I do with it?'

 

This epiphany led to the idea of a web based support network.  The main reason I had a second chance was the timely access to the right information and resources.   I was fortunate to have my daughter and son-in-law helping me find the specialized medical care I needed.  I was seen by some of the best doctors in the field.  They made the correct diagnoses and put me through appropriate treatments.  With limited medical knowledge, compounded by language barrier, this kind of timely access may not be as readily available in general in our communities.  Since the treatment of cancer is a race against time, and often a long distance race, finding the right treatment and support near one's home location, is probably one of the greatest challenges a cancer patient faces.

 

A web based support network, I think, is the answer to this challenge.  With the web based support network concept, information would be made available with a multi-lingual website.  An online support system would coordinate diagnoses and treatment resources where they are most appropriate or local to the patients.  For example, a patient maybe able to be seen and be diagnosed in the US, then return to China or Taiwan for long term treatment where they have insurance coverage. 

The vision for this network is to start small, with a foundation on Amyloidosis, Myeloma and Lymphoma to be staffed by volunteers for providing information service, or free medical clinic is the US.  The website would begin with English and Chinese, with additional languages added later.  In the future, this foundation would be expanded to include medical teams located in US cities such as New York, San Francisco, Los Angeles and Boston, and eventually in international locations such as Beijing, Shanghai, Shenzhen, Taipei and Kaohsiung.  Services would be coordinated through the online system and provided locally. 

 

We are off to a great start in working toward this vision.  A foundation called 'International Amyloidosis/Myeloma/Lymphoma Foundation' (IAMLF, or I AM LIFE) has been established and registered as a Non-Profit 501 (C) corporation.   Some of the cancer survivors and their families have pledge financial support.  We will need volunteers with language skills and medical training to establish the multi-lingual website and the online support network.  With additional funding, we may be able to create radio programs with call-in services, or have a foundation to provide financial assistance for those without medical insurance coverage.  The goal is not to leave out anyone with no place to turn to for help.

 

The road ahead is still full of uncertainties.  Like everyone else, I can't tell how much time I have left.  Surviving cancer is not a triumph by itself.  If I have learned anything from my experience, it is the importance of sharing what I have learned and devoting myself to helping others in need.  Imagine the good we can achieve if, with this network, patients can have access to timely information, accurate diagnoses and proper treatment in places where they can also receive support from families and friends.  If only one person can be helped by this foundation, I think the effort would be worth while.  I am going to devote the rest of my life to this goal, and I hope you will join me in this endeavor. Please e-mail me at alicechenmdrt@gmail.com.