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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I’m stuck in no-mans land

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I’m in the middle zone now. I fatigue easily and need to rest a lot but feeling better from the surgery (reached the 6 week mark!) and the nausea is much better from the first treatment. But I’m anticipating next week’s chemotherapy appointment and my hair is starting to thin. I’m not super sick right now but I’m not a healthy person either, the middle zone. I don’t look sick either which is even more confusing, for me and everyone else.

I feel strong, I feel weak.

I want to go be outside with the people, I want to hide in my bedroom.

I want to engage with the world and email people back but don’t know what to say, I want to lose myself in a novel or movie.

I want to start a zillion projects and get work done, I want to sleep all day.

I want to shave my head now and get it over with, I want to keep my hair for as long as possible.

I want to feel grateful for so many things, I need to feel the pain.

I want, I want, I want, I want to wake up and have it be September 1, 2014.

It’s such an odd experience, the middle zone. I’m trying to stay in the present and roll with my feelings while staying positive. A delicate balance for sure.

While stuck out here in no man’s CancerLand, my hair is starting to thin. I thought I’d be prepared to find so many hairs on my pillow but I didn’t anticipate feeling like a deer-in-headlight: The HOLY CRAP IT’S HAPPENING.

The post I really wanted to do this week was about feeling grateful.  I met other cancer patients on Monday at a yoga class at the Moores Cancer Center and man, my journey sounds like a piece of cake! Well, no one else has three cancers at once but some of them have gone through chemo for YEARS. They were incredibly insightful and shared all kinds of resources with me – which is why I went to the class. Felt good to speak with them.

So, I’ll end this with a list of what I’m grateful for: catching the cancers, how well I’m healing, my family and my friends for taking such good care of me, my support network, all the people praying for me, all the people who donated, the excellent care I’m getting at UCSD, health insurance (thank G-D for that), my strength going into this thing, my lovely apartment, the California sunshine, my nutritionist colleagues who are advising me, the fact that I found the ONLY wigmaker in the U.S. that makes them from your own hair, the Internet – learning how to create eyebrows from YouTube! All my Facebook peeps rooting for me from around the world!

I’m going to keep thinking about my Grateful List because the reality is that despite the crap situation I’m in, I could not have better luck right now. I may be a bald lucky person going through chemotherapy but still incredibly fortunate, nonetheless. I can do this.

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Words that are hard for me to hear

I must blurt it out. It’s hard for me sometimes to read all the notes and comments telling me how strong and positive I am. That doesn’t mean I want you to stop! Quite the contrary – it’s very powerful for me to keep reading them. I just want to be truthful. Hear me out.

The reason why is that I often don’t feel strong OR positive. I feel like sharing what I’m going through with you is my lifeline to sanity right now. I must do this. I have to tell you the truth of it or it will sit inside of me and eat away just like the cancer. Sounds more dramatic than it really is. I simply need to share the truth of what I’m going through in order to get it OUT and feel a semblance of emotional balance and a link to the outside world.

The other alternative is sitting alone, isolated, not sharing, not asking for help and becoming depressed. That’s what happened when I had melanoma and it sucked big time. I don’t recommend it. I promised myself that if I ever got sick again (figuring it would be years and YEARS from now), I would handle things differently.

Such a challenge to share my thoughts and feelings publicly but now, it feels essential.  I need to share the truth that I don’t always feel positive or strong, especially now that reality is setting in. I’ve been in survival mode the last couple of months. Getting ready for surgery, setting up caretakers, closing down work projects, healing from surgery, getting ready for chemo, getting a wig, researching nutrition…it goes on and on.

But now? Now, I sit with these chemicals in my body and it’s becoming REAL. My body will never be the same. My life will never be the same. I cry as I write this. I don’t want to project this happy, smiley cancer patient all the time because that’s just a fraction of how I’m handling this. I do feel upbeat a lot of the time and so incredibly grateful that they caught it when they did, and my caretakers, my doctors, my health insurance, my support system! So many things to be grateful for. But I also feel super sad at times. I’m trying to avoid the pity parties – and mostly successful. But sometimes I have to throw one for just a little while. And then I cut it off and try to do something that will make me feel good.

Your comments and words pull me out of these sad moments, remind me that I AM strong. That I am positive. That I can do this. I mean, if hundreds of people are saying the same thing, then it must be true, right? That’s how powerful your words are for me. They are helping me STAY positive and strong. Even if you’re far away, your words penetrate through this invisible wall that we all feel around ourselves when we are sick or going through something horrible. Otherwise, I’d be sitting in this sick bubble, by myself with only my own thoughts running around my brain – not good. You are making a HUGE difference for me. I need you to know that truth too.

So many things to consider in this new life and body. I’m still mourning the loss of the old one. My life will never be the same. And having Lynch is super scary now. But eventually, I’ll move past it and I’ll settle into a new normal. I’ll get there. I can do this.

Thanks for listening. Lemon out.

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