Myeloma Survivor Olivia Chin Shares Her Journey Of Thriving, Writing A Book (Love, Olivia) & Indulging In Chocolate
BY OLIVIA CHIN I am Olivia Chin and I was diagnosed with multiple myeloma around March 2009. Prior to diagnosis, I had incredible pain in my feet and legs. About two or three years after diagnosis and post transplant, I found out that the pain was actually from rheumatoid arthritis! My path to diagnosis wasn't simple. I spent a year in my local area seeing over 20 physicians, all of whom misdiagnosed me - including an oncologist and an arthritis specialist. My bone marrow biopsy was misread by the diagnostician in my local hospital. In despair, I went to Cornell in New York City (which is about four and a half hours from where I live) and they found amyloidosis first, since they assumed the bone marrow biopsy done locally was correct. I was scheduled for a stem cell transplant. About a month prior to the transplant, my oncologist in New York City asked if he could do another bone marrow biopsy for no medical reason besides intuition. That is how I was diagnosed with myeloma. I had never heard of myeloma before but for me it was good news because myeloma and amyloidosis have a better life expectancy than just amyloidosis. It felt as if I was given a reprieve! Because the stem cell transplant was scheduled based on the diagnosis of amyloidosis alone, I went right into it without any prior treatment. Afterwards, I went on Revlimid and dex. After a few blood clots and 11 TIAs, I went off of everything. Then there was a massive flood in our area. I believe the stress drove me from partial remission into active myeloma. I went on Velcade and dex. I have been on this regimen for over three years now and I am considered to be in VGPR (very good partial response). Currently, I go to two groups: the primary one is Weill Cornell - The Myeloma Center in New York City. And I still go to Broome Oncology, which is nearby, and they administer chemo and check vitals, CBCs and such. I chose to go to Cornell based on recommendations back in 2008 from a friend who administers clinical trials. She asked nurses at various hospitals in New York City and came up with Cornell. My transplant went smoothly. Revlimid less so - I ended up not being able to speak for periods at a time due to blood clots in the brain. I eventually had a stent put in an artery behind my left eye. Emotionally, it was a roller coaster. I wrote a book (Love, Olivia) with my physician at Cornell. He wrote the brief medical overviews of the different phases of treatment; I wrote about the emotional journey. It chronicles everything from knowing something was wrong but not getting any answers from the local physicians, and ends with the day about three years post transplant when I realized at bedtime that I did not think about myeloma at all throughout the whole day for the first time! My husband is here for me. During my transplant I did not want anybody with me so I faced it alone. My husband was working and taking care of the kids so I did not want to burden him when there was really nothing he could do. I have some wonderful friends who provided care for my family - at the time, my kids were ages eight and ten. I stayed in New York City by myself for three months. My husband, brother, and other friends visited, but mostly I was by myself right after the transplant. When I came home, my husband was very attentive and so were my kids. I still go to most appointments in New York City by myself - it is easier for everyone. Ironically I stopped working in 2007 to take care of my kids. I was fine at the time. I was a manager of avionics software development for Lockheed Martin. I also could have run for Volunteer Mother of the Year. By mid-2008 I could barely walk and used a scooter frequently in the house due to pain. I also had my own business doing party planning, balloon decorations, and gift baskets. About four months after my transplant, my business partners told me they wanted to stop working with me because they were afraid I was going to die, and they were afraid of the financial and probate aftermath. Now I do balloon decorations for not-for-profits for the cost of the balloons and donate my labor. Here is a photo for an arch we did for The Discovery Center. The theme was the Wizard of Oz. The biggest challenge about my treatment was mentally disassociating from my volunteer activities. I was involved in many committees and projects and I stopped doing all of it in order to reduce stress. Because of this myeloma journey, I am a better person, better parent, and better wife . I decided to:
- Reduce most of the stress in my life. I only do the things I have to do, and then the things I really like to do.
- Stop associating with people who were dragging me down.
- Make my family feel cherished.
I do not wish cancer on anyone... but cancer made me look at my life more closely and made me make critical choices. I also decided that my issue with my weight was a moot point, and so I eat whatever I want whenever I want! I gained about 10 pounds, but that is all, and I am so much happier now that I can eat chocolate without any misgivings! Throughout treatment and beyond, I was sending Emails to close friends and family all along the way, and people kept telling me I should do something with the Emails. So I cleaned them up, asked my Cornell oncologist, Dr. Tomer Mark, to co-author, asked the director of Hope Lodge Manhattan to write the forward - and voilà! A book is born! I worked on the book during the three months I was in New York City and for a few months after I got home. The book is about hope. It is funny and poignant When it was done and I got the first copy, I read it and realized it was also a book about food. This is the synopsis on the back cover of the book:
From diagnosis to discoveries and decisions, author Olivia Chin has had experiences that would make others give up, but she has faced them with optimism and a sense of style. She has had her share of ups and downs, but has managed to continue her journey with humor, grace, courage, humanity, and a smile on her beautiful face. Olivia's story is synonymous with survivorship; it is a source of inspiration to her family, friends, the medical community, and others in need. In this book, she speaks to the importance of finding answers, having a community of support, and always keeping hope alive!
I wrote the book primarily for my children. I thought the way I dealt with cancer and the treatment would be the best way for them to know who I was. I did not think I would still be here today! I wanted them to know the stuff I was made of - how I dealt with fear, death, courage, and love. Love, Olivia: A Stem Cell Transplant Story is available on Amazon and Barnes & Nobles websites. An Ebook is $3.99 on Amazon, software cover runs about $11, and hardcover runs about $28. If anyone wants one, it can be ordered at your local bookstore as well. Most of the sales have trickled in from people with a myeloma diagnosis, although we had quite a number of sales from the makers of Revlimid! I recommend it to anyone getting a devastating diagnosis of cancer within the last year or two, anyone getting a stem cell transplant, or had a transplant recently. A gentleman contacted me and thanked me for the book - and he has prostate cancer! These days, I am in VGPR (very good partial response). Velcade got me here. Three years ago, I was so bad, I was incontinent, I was not able to get up even one stair, and I was on about 12-15 Percosets a day. By 4:30 in the afternoon, I was in so much pain, I rolled around in a computer chair! I was given two shots sub-Q of Velcade before it was FDA approved (cost of $9,8000 each!!!) and it saved my life. My advice to those with myeloma:
- Find a myeloma doctor you trust. Ask around, get advice on who to see. I don't care if this doctor is well-known or not - I think trust is a big factor as to whether you will be comfortable with the treatment prescribed. You do not want to be second guessing your doctor. There are a thousand posts on the internet. You can read all of them and go nuts. You have to find the right doctor for you - which may not be the same one for someone else. Make sure he or she is in the myeloma business and myeloma only.
- Take a good look at your life and forget everything that bugs you or stresses you out. Tune it out. Focus on the best things in your life - your loved ones, your dog, chocolate - whatever. You will need all the strength you can muster, both physically and emotionally.
- There are so many things I could say here, but basically get someone who can make intelligent decisions about your medical care, and then take control and care of your own self.
- Eat good chocolate. Drink wine. Enjoy life. Be thankful. Or you could just stick to eating good chocolate.
Today, my medication is Velcade sub-Q and dex. My biggest side effects are fatigue, neuropathy, and water retention. I have been on Velcade for over three years and the effects are cumulative. I sleep a lot. I try to ignore neuropathy. I drink tons of coffee - it is a diuretic that does not affect the kidneys, and it helps both the fatigue and the water retention. I basically look at it this way - moaning and groaning about the side effects is a waste of time and effort. Velcade and dex have saved my life, and they are keeping me on the right side of the grass. If that means I have to deal with side effects, so be it. I do miss skiing. I miss walking everywhere. But I have found other joys. I cook gourmet meals for my family. I am writing a cookbook. I make jewelry. I swim in the summertime outside. I treat myself to massages (not too deep!). And did I say I indulge in chocolate? Pass the chocolate over and nobody will get hurt. Love, Olivia Chin