It has been a long long time since I have written on this blog. So much has happened over the last five months – some good, some not so good – that I kept pushing off writing this. It just seemed so overwhelming.
So – over the last five months we sold our home in Piedmont, purchased a home in Davis and moved our family. We were very sad to leave our wonderful community of Piedmont and the Bay Area, but we are excited about the future in beautiful Davis. The town is lovely and our neighbors are incredibly friendly and inviting. Of course, the reason that we moved is because I started my new job at TechNet in Sacramento.
This past week, Kenra Professional flew me out to Indianapolis to speak once again to their all-company meeting. As you probably recall, last winter they announced that they were going to roll out a charitable giving effort in coordination with the Rapunzel Project to help cancer patients save their hair during chemotherapy. As you are all aware, I was able to keep my head of hair by using cold cap therapy. Since my weekend is filled with soccer games and a huge “to do” list, I have decided to use my speech to Kenra to update you on my physical and mental status - rather than delay writing any longer.
I know that it may be a little long – but heck, you haven’t received any posts from me in a very very long time. So – I’m making up for it!! I promise to keep everyone more in the loop going forward. So here is the speech….
Good Evening,
It is my honor, and quite frankly, my thrill to be with you this evening. It is good to be back with my Kenra family. As many of you know, it has been a very long (almost) 4 years for me. I understand that there are some of you who are not familiar with my story – and for those of you who have been following me through my blog – I apologize profusely for not having kept up with writing my story. So – I’ll try to give those of you who don’t know who I am a little snippet of my journey and for those of you who know me, I’ll tell you where I’m at on this cancer rollercoaster.
My cancer journey began in January of 2008, when I was traveling in Iowa for the famous Iowa caucus. As a political junkie I had always wondered what the Caucus was all about.
Unfortunately, I never got to experience the Caucus – on that fateful Thursday night I was at Mercy Hospital in downtown Des Moines, in excruciating pain. I had no idea what a difficult road lay ahead. They found a blockage, and told me they needed to operate immediately. Two days later, I woke up to a prognosis of colon cancer – and it had spread.
Well, so began my fight. Since that night that I was diverted from campaigning for Hillary Clinton to campaigning for my life, I have had my colon re-sected twice, a vaginal re-section, a radical hysterectomy, an ostomy bag, a reversal of my ileostomy, and more radiation and chemo than any human body should have running through it. On top of all that, my candidate didn’t even win.
But I have fought hard. I have turned to eastern medicine as well as western – incorporating acupuncture, herbal medicine, yoga and a host of other modalities into my healing regimen.
If you look at the statistics, I should be dead by now. I was told that those who have the advanced cancer I had have a slim chance of living very long. But as you can plainly see – I am far from dead. I am vibrant and very much alive. So the big question is – why? Why have I thrived when so many others lose this battle? I can’t say that I’m any stronger than, say, my friend who lost her valiant battle with breast cancer. My oncologists were world class but then again, my oncologists sadly lose patients, too. Yet against the odds I live. And I know that I’m incredibly lucky to be here, talking to you.
I’ve heard many stories about cancer patients with devastating prognoses who have such an overwhelmingly strong will to live that they beat long odds. I believe I am one of these patients. I have two little girls who are counting on me to be there when they graduate from high school, when they walk down the aisle, when they bear their own children. Failure is simply not an option.
So this is what I’ve done. I’ve taken my treatment into my own hands. No, I’m not injecting myself with the chemo drugs, but I have been to multiple doctors for second and third opinions. With the blessing of my doctors, I’ve modified my regimen of care based on the latest studies, which I read avidly. And through this battle, I have become the single biggest expert on my own particular cancer, and often find myself sharing the latest information I’ve discovered with my oncology nurses (who may be humoring me, but I think they’re really interested). And I think that is what’s working. Studies have shown that time and time again, those patients who take control of their lives and engage thoroughly in determining their treatment are far more successful than those who simply allow things to be “done to them.”
And that, my dear Kenra friends, is why we are here today – we are going to help others take control in their fight with cancer. We are going to do this by helping them look at themselves in the mirror and not see sickness. We are going to help them look as normal as possible to their children and grandchildren. We are going to enable them to decide who will learn about their cancer and not have the information broadcast out from their bald scalps. We are going to let them have this little victory over cancer. Cancer is not an easy opponent – but trust me – it is no match for the penguin cold cap! (Just look at my head of hair – heck – I think I have an even thicker head of hair after my chemo!)
As you’ve heard time and time again – keeping your hair is not about vanity. It’s about so much more. And you, at Kenra, get that. It is impossible for me to express how meaningful your devotion of time, love and money to helping people save their hair is to cancer patients as they are going through the most challenging time of their lives.
As I was thinking about this speech, a thought crossed my mind about the impact of taking control. For those of you who have not had cancer (and I pray that it’s nearly, if not all of you) let me tell you what it’s like to tell people that you have cancer – it’s devastating. Every. Single. Time. And you try to be nonchalant because you’re sick and tired (literally sick and tired) of the tears, the hugs, the “I’m so sorrys”, but you can’t help but notice “that look.” The look that says - you’re about to die.
It’s the fear that flows out of everyone that I tell that takes my breath away – yes, it still continues to overwhelm me. But here’s what’s different about my cancer. Inevitably, people look closely at my hair and exclaim “but your hair – you have hair?! How is that possible? And then the conversation shifts. It shifts to how I am fighting – and how I am winning. When they see that tangible example of how I have successfully taken on the battle with cancer’s desire to take out my hair, they seem to have more confidence in me and my ability to win the war. And when others believe in me it makes it all that much easier
for me to believe in me.Let’s think again about that study - that study that shows that people who take control over their cancer are more successful in fighting cancer. But when you’re bald – you’re a walking billboard. You can’t hide that you’re suffering, you can’t decide who you tell. You are continually being given pitying looks – people looking at you like you’re not going to survive and that your children will be motherless. The pain in the telling forces some people to remain homebound instead of venture out. Giving women (and men) their hair is giving them the gift of letting them decide if they’re going to tell their cancer story. It’s giving them a choice. My Kenra friends – by giving them that gift of choice, you are helping them to fight their cancer.
Unfortunately, my journey is not yet over. For those of you who saw me in March, I was praying that I would conquer this disease – that I’d return to complete health and get to see my children and my grandchildren grow up. But, that comfort will continue to elude me.
At the end of June my cancer reappeared. I have about 18 mm in my spleen and 5 mm in my rectum (it’s a good thing that most of you are done with your dinner now!) It’s not a lot of cancer – but it’s still there. My oncologists added yet another chemo drug to my regimen. So I’m now on two types of chemo – one kind is infused every 3 weeks and one kind is taken orally. I’m glad to announce that both my CT scans and blood work from just 2 weeks ago are showing that my cancer is not growing – that we are managing to keep it in check. We are in a holding pattern – continuing to poison my body and watch and wait.
It isn’t easy living with this disease. After I licked it the first time, I just assumed that I was done. I had straightened out my priorities (I stopped working until all hours of the night or working weekends so I could focus on my children). I felt like I had learned what I needed to learn so cancer would just go away.
But – as you now know – it wasn’t over. And it will never be over. Each time I get a scan, I hold my breath – for days. Another cancer patient described what it’s like beautifully and I’d like to share her words with you….
“Waiting for scan results is possibly the most difficult part of being a cancer warrior. Yes, chemo is tough, and getting sliced open in the O-R is no walk in the park, but at least the truth is out there and we warriors are looking our nemesis straight in the eye. There is a definitive nature about battling cancer. There is nothing but speculation while you wait for scan results.
When you don't know whether "the cancer" has taken up residence in your bag o' bones, the challenge is unique. It's not a physical challenge but a mental one. You try not to speculate about how your body feels ("Is this really what having a little cancer in my gut feels like?") yet you can't help but become uber-sensitive about everything you're body is doing. You try not to think about your upcoming appointment where you'll learn your scan results but those thoughts pop in your head anyway. It's a challenge to live in the moment when you're worried about the future.
I've countered the "scanxiety" with a few affirmations, thoughts I repeat to myself every time my mind starts to mull over my scan results and their implications. I reassure myself that no matter what the radiologist's report says, I feel great. I tell myself that even if I have to restart chemo, I am awesome at it and will handle it even better this time around. And, above all, I remind myself that cancer will not stop me from doing the things I want to do in life. These thoughts calm me down and rejuvenate me, making me all the more formidable of a cancer-killing machine. This disease sticks around sometimes, but the trick is vowing to stick around even longer.” Yes, this is my life. Unless they find a cure, I will be fighting this disease – radiating and poisoning my body – for the rest of my life. And I pray it will be a long life. I was told recently by an old Chinese doctor, “Eve – unfortunately, with the medicine today, you will never be cancer free. However, you will learn to co-exist with your cancer.” And, according to Dr. Hu (don’t you love the name?) – I can live many many years co-existing…
In my non-cancer life – I am thriving. I began a new job in April as the head of a tech-industry association in Sacramento. This was not an easy career shift for me – since I knew nothing about tech – and I was hired to be one of the leading voices of the tech industry in the State. Just to make my life even more difficult, I uprooted my family and moved them from the Bay Area to a town near Sacramento to be closer to my work. And – on top of it all, I had surgery to take the bag off of my belly in the middle of it all.
Before I learned of my cancer in 2008, I was close to leaving my job and starting my own consulting firm. In fact, I was 3 weeks away from quitting. I felt like I needed a new challenge. However, once I learned about my diagnosis I felt it was best that I remain at my job and heal there. I guess that I could have just stayed in my comfortable job for the rest of my career. That would have been the easy route. However, having a diagnosis like cancer and having it come up again and again, made me think – life is too short. I don’t know how long I have, but heck, even if I’m in my last years, I need to show my children that I didn’t give up and resign myself to a job that no longer challenged me. I needed to teach them that no matter what your circumstances, you continue to reach for the limits and enjoy every moment. And so I left. I took a job that challenged me. Do I regret it, even on the days that chemo has wiped me out? Or even on the days that I’m in pain? No. Because I am living my life to the fullest. I feel blessed to say that I have no regrets.
My Kenra family - what you are embarking on is nothing short of magnificent. You, as a company, have decided that the sky’s the limit. You are making a conscious decision to help save not only cancer patients’ hair, but their dignity and, in many aspects, you are helping them to save their lives. As a company, you could sit back and just focus on your P and L. You could assume that there are charitable organizations that are set up to help others and that isn’t your role. You could leave it to others to care. But you didn’t. You stood up and are proclaiming to the world “we want to help. We not only get the importance of this effort, but we are going to dedicate our resources – both in money and people – to helping those who are in need.”
When I found out that I was going to lose my hair, I was very fortunate. I not only had someone tell me about the cold caps but I also had the resources to use them. What you are doing will help on both fronts. Your campaign will not only educate the public but will also help those who may not otherwise be able to afford it. Granted, the Penguin cold caps aren’t guaranteed to work for every cancer patient under every single cancer treatment - but it worked for me and I know that it does work for many many many cancer sufferers.
We know that the Kenra/Rapunzel partnership can’t cure cancer, but it is going to have a profound impact on those who are fighting it. Your charitable efforts reminded me of a quote that I once heard that I wanted to share with you.
Edward Everett Hale once said “I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”
Thank you for doing what you “can do.” Since I plan to have many many more years on this earth - I hope to remain actively engaged in your efforts going forward. People say very cavalierly that “every day is a gift.” However, as I pop my chemo pills every night, I am struck daily with how true that sentiment is.
I look forward to the day that losing ones hair during chemo is no longer assumed. I strongly believe that it will be through your efforts that that day is coming soon. I am deeply honored to be with you this evening and cannot express my gratitude for your generosity of time, of resources, and of spirit.
Thank you.
