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Tuesday, September 25, 2007

Update On My Sister

My sister Amy is cancer free now according to her latest PET scan. It is great news. She gave a speech the other day at San Francisco City hall to city and county employees on charitable donation options. The topic was about her journey the last six months of dealing with Non-Hodgkins Lymphoma. Here it is uncensored. BTW, here is a link to her blog, I Choose Hope

Hi all, hope you're having a good weekend. Since some of you have asked to hear the speech I gave on Thursday, I'm adding it here. It is a long read...but I hope you enjoy it.

I’d like to thank the Leukemia and Lymphoma Society for inviting me here to speak to you today. My story is relatively new…

On Monday, March 5th, 2007, I heard words from the doctor that no one ever wants to hear. “You have cancer.” The doctor was calling with my CT scan results and said, “You should come in to the office today.” I knew it wasn’t good news if I had to go in. Like the principal ever calls you in the office for being a really good student. You just know it is trouble.

I really didn’t think it was possible that my nagging little cough could actually be cancer. Cancer? No way. Seriously, not a chance. I liked the other possibilities much better: acid reflux, bronchitis, allergies, or asthma. I’m young and healthy. I don’t smoke. There is no history of cancer in my family. I eat pretty good food and drink wine occasionally. Other people get cancer. Not me. I hear about friends of friends getting cancer. I watch specials on Dateline of people that have cancer. Really old people get cancer. Smokers get cancer. But there it was, staring me right in the face and waving hello. It was cancer. I wanted to close the door and make it go away. Pretend we never made eye contact.

That day was surreal. I figured I would leave my primary care physician’s office and head straight to the hospital for a biopsy, and start treatment later that week. By Friday at the latest. Cancer is serious, right? It would all move quickly, and I would be better in no time. I would suddenly be a VIP at the doctor’s office, and the red carpet would be rolled out. I would arrive to the hospital and someone would be greeting me in the parking lot, waving me in… “Hey Amy! Over here, we heard you were coming!” Not quite the case. It took a few days to even get an appointment with an oncologist. Wait, what? I am going to have an oncologist? Me?

Later that week, I arrived to the Palo Alto Medical Foundation and made my way to the Radiation and Chemotherapy wing. It was an out of body experience. The patients in the lobby probably all had cancer. I made awkward eye contact with some of them. It felt like arriving at county jail to serve a sentence for a crime I did not commit. I wanted to ask them, “What are you in for?” There were nice baskets of beanies and scarves for people to take.

I was with my friend Jillian. Thankfully, she was there to help lighten the mood. She made jokes like, “You really won the cancer lottery, Amy.” I said, “Cancer lottery??” She said, “Yeah, I was researching Hodgkins disease and it has great odds of survival. So, you’ve gotten the best kind!” The best kind. Lucky me. Was there really such a thing as good cancer?

My name was called. I went in the exam room and put on my first of many paper gowns. I sat on the exam table waiting for my oncologist to come in. Minutes later, she walked in. I was shocked. She was my age. Thirty five. Wow. I expected her to be much older. And for her to be a him. It was the first cancer stereotype that was broken for me. A young woman doctor is going to save my life. How cool.
From the morning of March 5th, I never felt like my life was going to be ending anytime soon. It wasn’t possible that it could be the end. When faced with the finish line earlier than expected, there was no choice but to turn around and run the other way. Cancer may have knocked at my door, but I wasn’t going to let it in. Seeing it through the peek hole was enough for me to know I couldn’t let it in to stay.

Dr. Priya began to outline the facts for me. Percentages, odds, risks, side effects, treatment protocol… We reviewed my scans and she showed me what cancer looked like. I first pointed at something that I thought looked really bad, “Oh no, what is that big thing?” She said, “That is your aorta. That is a good thing.” After that point, I didn’t make any more assumptions about pictures of my insides. I became a student of Dr. Priya and just listened. Jillian diligently took notes while I asked Dr. Priya questions that ranged from “Am I dying right now?” to “Will I still be able to have kids?” and to the simplest of questions like “Am I going to lose my hair?” She put her hand on my hand, looked me squarely in the eye, nodded her head, and said, “Yes, you’re going to lose your hair.”

Well, that did it. I burst in to tears. Finally, there were the tears I was expecting. I seemed to be comfortable with the medical and scientific facts. But losing my hair? Noooo! Not my hair. I said “But my hair is my X!”

I left the doctor that morning and drove home. I began to think about losing my hair. I was consumed with the fact that I would lose my hair. Never mind that I had Stage III non-Hodgkins lymphoma invading my body, I was going to be bald. My life was quickly spiraling out of control.

Quick. Get some control back. How can I get some control back? I decided to throw a party. If I was going to lose my hair, I wanted to turn it in to something positive. Invite all of my friends and family … have some good food and drinks … dance and listen to great music … and have my head shaved. Then the idea kept on growing. I was really getting in to it. Let’s get some people to donate some cool stuff and have a silent auction to raise money for Leukemia & Lymphoma Society. I’m clearly not the only one experiencing a lymphoma diagnosis, so let’s raise some money for a charity that I believe in.

Oh yeah, sidebar: I first joined Team in Training in January 2000 to run a marathon. I wanted to complete a marathon before I turned 30. If Oprah could complete a marathon, so could I. I raised over $5,000 with relative ease. I ended up injured before the race, so I never completed that marathon. But, I decided to try again a year later. I signed up, raised another $5,000 and completed the Anchorage marathon in June, 2001. Three weeks after my 30th birthday. It was such a great experience with the Leukemia & Lymphoma Society, that I did it again two years later. Another $5,000 for the charity and another marathon under my belt. Honolulu was a blast.

Back to the day in the doctor’s office, with Jillian, the one that told me I had won the cancer lottery. She says, “Wow, what karma you have. Think about all of that money you have raised for Leukemia & Lymphoma Society!”

I was completely puzzled. “Huh? Train for the marathon, raise money for the cause, and then…get the disease? If that is the karma I have, I will never raise money for a cancer charity again!!”

She explained, “No, think of how you will benefit as a patient now. The money you have raised for them has helped them to advance research, take care of patients, and offer support that you will be needing.”
She was right. I had to get Leukemia and Lymphoma Society in on my party idea. I called the San Francisco chapter and the red carpet was immediately rolled out. There it was! The cancer patient red carpet I was dreaming about. It was like when you’re in a really long line at a bar and the bouncer calls you to the front of the line and lets you in – and then waives the cover charge. I was being treated like a cancer VIP. Everyone I spoke with started the conversation with “How are you feeling, Amy?” They cared. They were compassionate. They were respectful of my situation and sensitive to my feelings. And mostly, they were thankful for me to reach out to them. It is like they want to be able to do their job, which is to help people like me.

And let me be clear, I was 1,000 times more thankful that they were there for me to call. Within a few hours, they put me in touch with a woman in the East Bay that was a survivor of exactly what I had. Right down to the specific type of non-Hodgkins lymphoma of which there are around 30. It was such a welcome for me to speak with someone that knew and understood what I was experiencing. My family and friends were all being wonderfully supportive, but I really could not take one more person telling me, “I know you are going to beat this.” I needed someone that truly understood my feelings of fear and anxiety. Someone that had walked in the shoes I was about to put on. Hearing her say, “I know what you are feeling right now” was a tremendous comfort. She really did know. And she was OK. She lived through it all. The baldness, the medicine, the range of emotions, the reality that this can happen to anyone. And it did happen to anyone. I was suddenly ‘anyone’.

My head shaving party was the best night of my life. For real. What could have been a depressing day at the hair salon was turned in to an evening of celebrating life with all of my closest friends and my dear family. Friends from all over even flew in for it. I felt inspired and proud that I had such strong support from my team. This team was going to help me get through what was about be the most difficult and challenging chapter of my life. About 100 of us packed in to The Horseshoe Tavern on Chestnut. If you have been there, you know it is a small place. We set up a silent auction and had items donated from all over: a signed pin flag from the PGA Championship was donated by Tiger Woods; concert tickets with VIP access were donated by the Dave Matthews Band; my employer donated 2 tickets to the 2008 Grammy’s … I quickly learned that people really want to give. We just get busy in life, and forget to give to others. It isn’t that we do not want to, we just need to be reminded. We raised over $20,000 that evening, and the money is still coming in. I have even received donations from complete strangers that have read my internet blog about my journey with cancer. That evening, 18 of my male friends and family all stepped up and let me shave their heads too. It was a blast. We all laughed, we all cried. The honor of shaving my head went to my own little sister. The person that donated the most money that evening received the honor, and she got her employer to donate $5,000. We climbed up on the pool table, everyone in the room cheered, I tilted my head back and she shaved it. It was a lot less traumatizing for me once it was actually over. The night was about celebrating life and raising money for a great cause. Some of us just happened to shave our heads, too.

I will never say that getting cancer is a good thing. It isn’t. It is a terrible thing to have to experience. But what I will say, is that if you look hard enough, there are silver linings to it all. Organizations like the Leukemia & Lymphoma Society help make the experience a little bit easier. They relieve some of the burdens that patients are facing. They make a difference.

I am excited to share I was declared in full and complete remission after only two cycles of chemotherapy. May 7th was the day I received that news, and I cried, and cried, and cried the happiest tears of my life. I spent the rest of my summer in Palo Alto, finishing up my chemotherapy and a then a month of daily radiation treatments. Words cannot describe how difficult this was, physically and mentally.

But, we have a choice in every thing we face. Hope, or despair. I choose hope. I will choose hope for the rest of my life. I hope you do too.

Thank you very much for your time today.

It gives me tears reading it. If anyone still wants to donate to the Lymphoma Society, you can do so here. Lynn's raised almost $3k so far for her Team in Training San Francisco Marathon and we still are a month out.


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