Dear Cancer…letter to you

Dear Cancer,
I want to hate you. I do. I want to KICK your ass with everyone cheering me on. FIGHT FIGHT FIGHT you as the enemy. I want to beat on you with a baseball bat, gloved fists, booted feet. You have stolen seven organs from my family in 18 months. You have halted my life. Cut me open, raw, 7-inch scar left in your wake. Toxic drugs plunging through my veins. Shrunk my beloved palate and plate. Messed with my hormones. Forced me to quit working. Changed so much of my life. You’re still stealing from my dad. You’ve already taken enough from my sister. I want to hate you.

But I can’t. I can’t hate you. Ohhhhhhh, how I want to hate you. I want to hate you like any soldier wants to hate their enemy. Fired up, guns loaded. Until that moment when you look into the enemy’s eyes and realize they’re the same as your own. And the hate is gone, just like that. Changes everything. Because you aren’t a foreign bacteria. Nor a parasite from South America. You are me and I am you. My own cells, gone rogue. My own CELLS transforming, converting, MUTATING into poison. You’re certainly smart little fuckers. You know how to feed, grow, and spread so intelligently that nobody can stop you even after billions of dollars have been spent trying to destroy you.

How do I hate you when you were once healthy little cells, lovely little mitochondria intact and functioning normally? How can I hate something that sprouted from my own DNA? The same DNA I share with my wonderful family? The same DNA that makes me a fast runner like my dad and share the same voice as my sister? Hating you would be like hating my own sick child. I can’t.

I can’t hate my own little cells. And now, I don’t have the energy to fight you even if I wanted to. I have to allocate my energy every single day. I have to make conscious decisions about every single activity, each bite of food, which exposure to germs. E-v-e-r-y-t-h-i-n-g. Because you have taken over my life. It would be easy to become resentful – bitter and pissed off. But then I think of how I would treat a sick child, no matter what they had. How I would rub their forehead, make them chicken soup, let them watch cartoons. And I realize I have to do the same thing for my own little cells. I have to care for you, all of you, cancerous or not. I have to nurture you back to health. I have to feed you good food. Watch silly Youtube videos that make me laugh. Keep my body and mind as strong and positive as possible. That’s how I’ll win this war. Nurturing, laughing, loving.

You’ve taken a lot from me this year. But you have also given me hard-earned wisdom. And one nugget I’ve taken to heart is to not waste energy fighting, especially an enemy that does not exist. If I can – and I’m really struggling to do this but determined – I want to love and nurture you back to health, little cancer cells. I want to learn how to make you whole again, for me and for my family. I want to stay in the light, not cross over to the darkness. More than anything, I want to live. Which is why I can’t hate you, Cancer. You are me and I am you. I’m going to love you back to health, dammit. I can do this.

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I don’t want to be ashamed

Lately, I realized I was ducking my head when I passed people in public, especially when I had a hat on that revealed my bare head. Embarrassed, the cancer patient, I looked down and away. Not always but enough times for me to notice. And then at my oncologist, there was an article in some cancer magazine about Kathy Bates going through cancer twice and her quote caught my eye “I realized it wasn’t necessary to hide. Nobody should be ashamed to have cancer.”

Was that why I didn’t tell anyone when I had melanoma in 2011? Is that why I was hanging my head when I passed people? Because I was ashamed? Screw that! I didn’t even realize that’s what I was feeling until I saw that quote. Last night, I went on a walk to the beach with a friend (because thankfully I live in a city where I can DO THAT, sooo grateful) and my head was hot. For the first time in two weeks, I took my hat off in public. Nobody even glanced at me! Granted I still have some hair – not completely bald (yet?). But still, it’s pretty bare. It was liberating to realize that I don’t need to hide! I don’t need to feel embarrassed or ashamed! Ridiculous, isn’t it? But based on how many people are calling me brave, I’m not alone in feeling ashamed to share my diagnosis, or my pain. Why is that? Why are ASHAMED of going through something hard in life when it happens to everyone at some point?

Having cancer sucks. No doubt. But the best thing about it is gaining perspective. And realizing how resilient we really are. I remember thinking it was the end of the world in January when they said I had to lose part of my colon. Ha! As the news kept getting heavier, everything before it seemed smaller and less significant. That’s how I feel about a lot of things now including the hair loss. While it’s still hard for me – granted I still have eyebrows and lashes which is pretty awesome – it’s shifted my perspective on: a) what makes me feel beautiful (lots of other things besides hair!) b) what I appreciate about my body – I have never in my life been so damn grateful for eyebrows and lashes! c) how much I can really handle which ends up being quite a lot.

This last point has been on my mind lately. Many people are struck by my attitude throughout this experience. I realized that having a chronic age 17 to 26  helped me pick up a lot of coping skills. While other people came of age in prime health, I grew from kid to adult as a sick patient. I think that and the melanoma experience taught me how important it is to just ride the wave. Sometimes life sucks and sometimes it’s awesome. Most importantly, I learned that I can HEAL. I defied the doctors the first time by healing my colon which they said I could never do, I got strong again the second time after barely walking for four months, and I WILL DO BOTH AGAIN THIS THIRD TIME. I must believe that.

The other huge lesson I’m learning this round is to not be ashamed! The difference between my melanoma experience and this bout is HUGE. That was intense but this is technically way worse. And yet I was way more depressed that time. This time, I’ve felt a lot of emotions but not that dragged down depressed feeling. And I think a lot of it has to do with opening myself up and sharing my REAL experience and my REAL feelings. Bates is right. We shouldn’t be embarrassed. I have cancer right now but I have no reason to duck my head. Or hide. It’s simply something I’m going through right now. So, now when I walk by people with my bare head peaking out, I just smile and say hello. So what if I’m bald? I can do this.Bald_Original

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Losing my hair is weird

I’ve been through so much, I thought losing my hair would be the least of it. I figured I’d rock some cool hats from my huge collection and have some fun. A couple months and it will grow back! I think bald heads on dudes is super sexy and Sinead O’Conner pulled it off so beautifully. No biggie, right?

But it sucks! It’s this horrible external reminder of what I’m going through. EVERY TIME I LOOK IN THE MIRROR, I’m being reminded that I’m a CANCER PATIENT CANCER PATIENT CANCER PATIENT CANCER PATIENT.

I know that it shouldn’t seem like a big deal. I would think that if I wasn’t the patient. I mean, really, who cares? It’s only temporary. It will grow back. But it IS a big deal. I feel ugly and weird looking. I’m crying as I write this. And I know I shouldn’t complain because my eyebrows and eyelashes are still intact! When I have a hat or scarf on, I look pretty normal! And it’s STILL really upsetting.

I still have SOME hair but it keeps falling out – and it’s so thin that there was no point in keeping it anymore. The little hairs everywhere were driving me nuts. So, it was shaved away. I feel so exposed. I feel odd without color on my head after being a redhead, and then brunette, my entire life. I feel like I can’t hide what I’m going through. Before, while running errands, I could pretend to be normal. Not anymore. I know that I’m still getting used to it – it’s only been a couple of days since the shaving. And I WILL get used to it but it’s been a lot harder than I anticipated. I literally gasp every time I look in the mirror. I think the hardest part is that I don’t feel like ME. Who is this person looking back at me?

On the upside, my body is feeling strong on my Non-Fatigue days. Fatigue Days are tough – your brain is awake but your body feels like lead. You can’t do anything but just stare at the wall, incredibly boring. But I do feel like I turned a corner with my digestion and overall strength. I put on a couple of pounds and have decent energy on my precious good days. And I am slowly starting to engage with the world, which feels amazing after being in lock down for so long.

My bald head conflicts with the growing strength of my body. I know I need to suck it up because the reality is that my hairless head is the only way you can tell I’m sick. Wait, that sentence doesn’t even sound accurate. That’s the strange thing. I don’t FEEL sick. Just realizing this…maybe that’s why the bald head is so hard for me. I felt pretty healthy before the surgery which is bizarre if you think about three cancers growing at once. But I haven’t felt “sick” this entire time. Now, I LOOK like a sick person. Makes sense that it would be upsetting. In my face, literally.

Overall, though, I’m told I’m lucky I’m holding up so well for being halfway through. I start my fourth cycle next week. Most people are super beaten up by now. I don’t know why I’m doing okay. Good diet? Acupuncture? The supplements? Greek genes? I have no idea. But I’m grateful for it. I need to get my wig cut and styled. I think that will help. And get the hang of scarves. But the whole thing is pretty shitty and shocking. Somehow I will get through it. I can do this.

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What if you had 2 years to live?

It’s been a hectic few weeks, hard to write. I don’t have a clear vision for what I want to share today. I’ll give an update since people seem to like that and then see what flows out of my fingers…. Always so much on my mind, so many things happening. Quite a few good days, some grumpy days. Just muddling through.

I switched to Scripps Hospital for chemo which I really like.  I learned that I don’t have the scary reaction to taxol (anaphylaxis) but like 15% of patients, I have non-life threatening reactions. It’s like the difference between a deathly allergy to peanuts versus a rash from eating dairy. They still give it to me over a longer period to decrease the reaction – but I’m safe – won’t die from it which is always a plus. I’m lucky I can tolerate it because taxol is the best drug to beat ovarian cancer. Those pesky cells can escape the pelvic area and become impossible to track versus colon cancer which you can check through biopsies. Blerg.

Most of the time, I try not to think about what this means. I had a lovely conversation with a friend who told me that my experience gave her the motivation to end a relationship that was no longer healthy. She realized how life short is. If nothing else, I hope that this does remind people how life short is and to not wait until “one day” to follow a dream or make a change. For the most part, my attitude is: of course, I will beat this thing and live a long life! But then I think about how f#&@ed my immune system must be to get a chronic disease as a teenager and four cancers in three years. I sometimes walk down that road in my head – what if it comes back in a few years? What if they told me to get my affairs in order? The same thing that ran through my head during the three months I had melanoma surgeries and they kept finding more. These thoughts during the melanoma are what motivated me to move back to the west coast, choose a more relaxed lifestyle, and live closer to family.

I can’t help but wonder: What would I do if they gave me a short time to live this time around? I try not to get morbid but instead use it as an opportunity to chisel away at the unnecessary crap in my life. What would I prioritize if I had only a short time left? What legacy would I want to leave behind? What work would I finish? What would I discard? How would I spend my free time? What would I say to the kids in my life? Where would I travel to? I haven’t answered these questions but they make me think about what I really, really want in my life.

For the most part, I do believe I can kick this thing. My dad’s mom lived until 88 and she had 10 cancer operations due to the Lynch gene. She died of dementia related symptoms! I have access to such incredible information and so much support from the alternative medicine community. I’m very interested in nutrition and genetics which I’ll share more about later. I think that the reason this is happening is because that’s the next path I’m supposed to be on. Helping patients in our health care system and finding ways to give them access to much needed information makes me excited to get back to work. The rest is fuzzy but I’m certain this experience will inform my next career chapter. And I’m pretty sure it’s going to be a LONG chapter, right? I have a lot of work to do! And kids to watch grow up. Stupid Lynch. Going to kick it’s ass. I can do this.

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Julie & The Cancer Story

This was posted on the YouCaring site that my family created for me – gives an outline of what happened. The other blog posts are written by me in first person!

THE STORY:

After a long recovery from three surgeries to remove melanoma in her leg in 2011, Julie moved from New York City to San Diego where she was ready to embark on a new life. Unfortunately, in November, 2013 she learned that they found a cancerous polyp during her routine colonoscopy. Julie has a history of Ulcerative Colitis (UC) and a sister and father with Lynch Syndrome which is a genetic mutation and puts her family at risk for at least four cancers. (Her younger sister, Laura had colon cancer at age 27 and her dad, Marv recently had stomach cancer but thankfully, both are doing well today.)  Because it’s presumed she has Lynch, along with a history of UC, doctors will remove a large section of her colon. While she was dealing with this diagnosis, they discovered large, solid masses in her ovaries which they believe is cancer but won’t know for sure until they are surgically removed on March 14, 2014. If it is ovarian cancer, we are praying it’s early stage. They will also be removing her uterus because she is also at risk for endometrial cancer. UPDATE: Julie was diagnosed with Stage 2/3 Ovarian Cancer and Endometrial Cancer. She started chemotherapy on April 18, 2014 and will continue through August, 2014.

THE HEALING:

Julie was diagnosed with Ulcerative Colitis when she was only 17. When she realized that mainsream medicine would only suppress the symptoms but not heal the disease, Julie began studying how to improve her immune system through diet and alternative treatments. Despite being told that UC is “forever”, Julie managed to heal her colon after ten years of being sick. She knows firsthand what a difference a nutrient-dense diet and ancillary treatments can make. Julie wants to build up her strength and recover quickly from her surgery so that she can get back to teaching cooking classes to kids and training others how to become health educators!

THE FUTURE:

Julie has worked tirelessly on behalf of children and families for the last fifteen years and is a devoted auntie to eight nieces and nephews (plus many more kids). We need her to continue her important work and playing Chutes & Ladders with her nephew who never lets her win. Julie is already thinking of ways that she can transform this difficult diagnosis into an opportunity to help others in similar situations. Giving back to community and finding meaning in this challenging experience keeps her going, as does your love and support.

 

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I thought I’d heard the bad news already

I keep writing these positive blog posts in my mind, especially earlier this week when I was feeling GOOOOOD. I had four days in a row of feeling positive and physically stronger! Man, it felt awesome. I was going to write about staying positive during crisis. I managed to stay Zen when I found out that my new insurance, Blue Shield of California wasn’t covered at UCSD. Okay, that’s not true. I was really upset last Friday until I went to my acupuncturist who was incredibly reassuring. She suggested that the reason my insurance wasn’t working was because I was supposed to go to a new doctor. As soon as she said it, I knew she was right and then I felt Zen. Ha! Didn’t last long.

I met my new doctor at Scripps – who I really like but she gave me some heavy news. Super modern doc: gave me info and then asked me what I wanted to do (yes, I’m capable of making decisions regarding MY body, thank you). She also shared details about the ovarian cancer which I appreciate learning – but it was very intense. It’s a rare, aggressive clear-cell type which they don’t have a ton of data on. They aren’t positive which chemo drugs are best because it’s rare. Woah. I know this may sound strange but it never occurred to me that this could kill me. Perhaps my brain just couldn’t handle that possibility until now. Or, maybe I thought that the Stage 2 meant I was safe. My surgeon did not remove lymph nodes which would indicate whether it was Stage 3 or not. Maybe that would have changed my perception of how much danger I’m in. I don’t know.

Well, you can imagine my Zen mindset went out the window after THAT meeting. I kept it together in the consult but broke down crying in the car. I keep forgetting that I must ALWAYS bring someone with me to these appointments. But I thought I’d already heard all the bad news I could hear! She had posters on her wall about Lynch Syndrome which scared the crap out of me. The only reassuring details were the low percentages next to the long list after the four main ones – Lynch patients have 80% chance of colon cancer, 12% of ovarian, stomach and endometrial are high percentages and the rest are below 7%. Still. I won’t share the list with you since my posts are already such a buzz kill. Keep intermarrying, people! Mix those genes up!

Then I remind myself that I have a lot of things going for me: I’m in one of the BEST areas of the WORLD for medical care. I have a LOT of resources for nutrition and alternative medicine. We may have shit genes in my family but we have hearty Mediterranean constitutions to combat them. I must keep picturing myself healthy like I did when I had the ulcerative colitis. Will myself healthy.

My outlook has changed a lot – let’s get that chemo in my body and kill these buggers off! I don’t want those aggressive little f#&*(% floating around my body. It’s not my time to go – not now and not any time soon. I plan on kicking around this planet for many more decades. Still. Scary as hell to hear this information. It’s our worst nightmare, right? What I’m going through is what we all dread. Keeping it together as much as possible and enjoying my last days of normalcy. I can do this.

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