What I learned from almost dying

One year ago today, I learned I had two large masses in my ovaries. I was already a mass of anxiety about losing part of my colon. Funny how something sounds so terrible and then you hear even worse news…your mind keeps adjusting to the traumatic information. Rearranging it in some bizarre fashion so that you can attempt to process it.

At this point, I’m processing everything that happened by trying to release the painful experience but keep the lessons.

First, a quick update on how I’m doing:

Physically, I can’t complain. Tests have all been great. However, ovarian cancer is a scary one (I don’t Google it, no way) so I’m left with that nagging “what if” feeling that all cancer patients live with.

I still have to pace myself but I’m feeling pretty strong. Except for some minor neuropathy and fatigue, I have zero side effects from the chemo. I feel VERY lucky.

Mentally/emotionally, doing well. Truthfully, 2014 is a blur. Between the drugs and the trauma, I don’t remember a whole lot. I consider this a blessing.

In fact, I’m starting to consider the entire thing a blessing. Sounds wild, right? But I’ve been sick enough to know that there is always a lesson that goes along with an illness. So many lessons from this doozy but here is my current list:

1)   I learned how to be vulnerable. Like every other woman in America, I like to appear strong and perfect (ha!) – I got my shit together!! Yeah! Look how good I look in this Facebook photo that I chose out of 200 shitty ones! (Ok, I still do this, I’m a vain hippie, what can I say.) Man, it was difficult for me to share my story with everyone. But knowing I could be gone soon changed everything – I had nothing to lose. Sharing my ugly hospital photos? My Debbie Downer moments? My sadness? My fear? My freak outs? Not only was I not JUDGED for it, I was CELEBRATED for exposing them. Major eye opener. Share your pain, my friends. Share your pain. You never know who you’ll be helping by letting your shadows see the light. You’ll definitely be helping yourself, that’s for sure.

2)   I learned that it’s stupid to be afraid. I hide them well but I have many fears. Not physical ones – I’ve jumped out of a plane and scuba’d with sharks – mine were mental. What if I succeed? What if I fail? What if I made the wrong decision choosing career over family? What if I have another failed relationship? What if I have too little work? What if I have too much work? What if I make an ass of myself on social media? Nothing like knowing you might die – and die soon to make those fears recede. Now I tell myself: it’s all okay. It’s unfolding as it should. Trust myself and the Universe. Have faith that every moment – whether I judge it to be bad or good – is happening exactly as it should and will lead me to precisely where I’m supposed to go.

3)   I learned how to surrender. Sandberg says we should lean in. I lean so far in, I fall into an abyss in front of me. I need to learn how to lean back. Surrendering is not the same as doing nothing. Doing nothing serves it’s purpose at times. Surrendering is linked to receiving – they are both actively allowing things to come to us instead of reaching forward – AND ACCEPTING THEM. Surrendering is much more challenging (for me) than receiving or keeping the faith. It requires taking Good moments and Bad moments and allowing them to wash over you without shifting in thought or perception. The imagery that comes to mind is a flower that is hit with the wind and rain – it bends to the wind and absorbs the rain. The flower stem doesn’t bitch about it nor reach for the rain or crack from the wind – it just rolls with it.  Accepts the gift from nature and keeps on growing.

So much about cancer is fighting but for me, it was about surrendering and receiving – something I’m also not good at but was forced to learn this past year as well. It’s not succumbing as I thought in my younger years – it’s about yielding. Driving on the Road of Life and not fighting it when my car is suddenly shuttled to a new street. Before I’d try to get back on the original road – that’s where I’m supposed to be dammit! Now, I get it. Getting upset and trying to go back is a waste of time. Now I just keep driving on the new road and see where it’s taking me.

This new path I’m on, I admit, is scary since it was so unanticipated.  And I like to plan! But this time, instead of struggling for months – or even years to reconcile the hand I’ve been dealt, I’m trying to roll with it.  Even if the outcome is dire within a few years (which it won’t be), I’m trying to make peace with that too. If it’s my time, it’s my time. Being fearful is a waste of energy. And there are so many other things I want to do with that energy besides live in fear! Spend time with my loved ones, watch my baby bunnies grow up into amazing human beings, TRAVEL! Delve into my life’s work so that I can leave behind a legacy. That’s what’s about it for me now. So cliché but it’s really about making every moment count. I can do that. I can do anything. And so can you.

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Life is like seeing a wild tiger in the jungle

Sometimes I am able to step outside myself, for just a few seconds, and view my story like a bystander. HOLY SHIT. Wait, what? H-O-L-Y SHIT. You had how many? And THEN chemo…?” I can feel the horror, the near disbelief, the shock I’d feel for someone telling me this story. This story that’s mine.

And then it’s gone. And I try to think about it from someone else’s perspective again and I can’t.

All I can see is the view from inside. Which, don’t get me wrong, can feel pretty crappy sometimes. But overall, it doesn’t FEEL as bad as it sounds. Mostly it feels like a bad dream. Fuzzy around the edges of my memory – but fading by the end of day like most nightmares that wake us up in a sticky sweat.

Some days, the nightmare stays with me a bit longer. Other days, I nearly forget about it. Good days and bad days like everyone else. My highs and lows may be a bit more extreme than others right now but I can see the pendulum slowing down to an average day’s emotional norm. I still have a lot of processing to do. I know that. There was too much loss this past year to not grieve. But for some reason, it feels manageable. I guess this is one upside to getting older: feeling resilient.

Being resilient and being upbeat, however, are two different things. And people continue to ask me: how have you stayed so positive?

I’m curious about the answer myself.

Maybe it’s because I know (hope?) this happened for a reason – that it will result in me helping others in some way. Similar to how ulcerative colitis at age 17 landed me in the wonderful field of culinary education and working with kids. Totally worth the pain I went through. I love what I do.

Maybe it’s because my dad, sister, uncle, and many other family members have been through the same thing. Our cursed genes making this into some cruel rite of passage.

I kid you not, right after I wrote the above passage, my dad and I started chatting. Within minutes, we’re comparing our scars, bragging about our work outs, and what we’re able to digest.

This is our normal.

Maybe because it’s because I managed to stay physically strong – taking a page from my dad and walking laps in the hospital and now on a treadmill. Feeling strong keeps my brain happy. This helps me have lots of good days now. I can have a full day, several in a row, and not feel that murky undertow of fatigue waiting to pull me under until evening. Though, I still can’t do a full day and a full evening. A full day wipes me out, lands me in bed, in my pajamas as early as 7pm. But still, I get lots of good days now – and I cherish them.

Maybe it’s because I’m lucky to have access to natural medicine and recover so quickly. Three months out, I have a hairdo that almost looks on purpose, eyebrows, eyelashes, and nearly normal fingernails (they said it would take 6-12 months!). Neuropathy shows up for a spell every couple of weeks but even then, is hardly painful (others have it for years).

Maybe it’s because I feel like myself again. It’s like being away from your beloved home for months and months and all you want to do is sink into your own bed. That’s what it’s like to have your body and brain come back online after chemo. I feel like I’m at home again.

Maybe it’s because I get a do-over. A fresh start in a lot of ways. The cancer stripped me bare, shorn my hair, left me three organs lighter. Which sucks, of course. But it also means I get to reinvent myself. I love reinventing myself. It’s why I became an explorer of the world and have lived a mostly nomadic life.

Once again, I’m exploring new territory – but it has nothing to do with geography. I look in the mirror at this new woman and I don’t know her. But I do. It’s hard to explain. She is the woman I’ve always been but she is also a stranger. She has lived something few have, an adventure most avoid at all costs or don’t live to tell the tale.

She is also the woman I’ve always aspired to be. Tough, humbled, empathetic, fearless, joyful. She has been to hell and back. And now understands – on a deeply fundamental level – that life is never what you expect it to be. Strangely, this new perspective is much more liberating and less scary than I thought it would be. I finally get it now: life is just one, long unplanned adventure fill with both beautiful moments and terrifying ones. Some people will run into a tiger and shit their pants with fear. Others will stare in awe and wonder how lucky they were to get so close to this dangerous, majestic animal. It’s all about perspective.

I think it’s this perspective that’s carried me though the year. There are those moments where I feel the horror and sadness. But then, I stop myself. And remember how lucky I am to, hopefully, transform this experience into a something that will help others. And how lucky I am to have all these awesome people in my life. Most of all, I know how lucky I am to still continue on this adventure – so many others don’t get that privilege. Beautiful, terrifying, majestic, scary – that is life. I guess I’ve learned how much I can handle – which, as it turns out, is quite a lot. Bring it on, Life. I can do this.

 

 

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Reality is hitting me

Been awhile since I posted. So much has happened in the last month, it’s hard to wrap my brain around it let alone write about it.

I’ve been told that the post-chemo experience is a head trip. I didn’t understand how it could be as difficult as going through chemo but now, I get it. You’re stuck in this weird reality – what I call CancerLand – for so many months that you acclimate to it. You’re in survival mode. You do what needs to be done. And then you’re shoved back into the RealWorld as suddenly as you were dragged out. You feel exposed – literally bare-headed and a vulnerable immune system like a newborn baby. I’m not the same person as I was before – and I don’t know who this new person is quite yet. Other cancer patients say it feels like a rebirth which is wonderful and frightening at the same time. I feel happy that I’m done with chemo but scared of my next scans and reports. I feel relieved I get to start “real” life again but nervous I won’t have the energy to handle it. I feel excited to embrace life but petrified I’ll be told bad news again. I feel a lot of things.

If you know anyone else going through cancer – I hope you don’t but let’s get real – know that the post-chemo time is very fragile for them. They are physically beaten down, scared to meet with doctors, nervous to socialize and work again. It takes so much energy for us to engage in normal situations because our reserves are low. And our reality was focused on medical crap for so many months, that it takes awhile to adjust to small talk and silly conversations. I can’t wait until cancer doesn’t come up ONCE in a conversation. Joy!

All in all, I’m doing okay physically although I tire very easily. I keep having to adjust how much I do. If I go overboard, I can’t get out of bed the next day. It’s very difficult for me to hold myself back from going full steam ahead. But from what I understand, I’m in much better shape than most at this point. Fingers are slowly improving, hair/eyebrows/eyelashes are coming back! Like little flowers bursting out of the ground after a long winter. Never thought I’d be so happy to see eyelashes. Never cared for make-up before but now I can’t wait to wear mascara – simply because I CAN.

The hardest part is realizing that I’m not like the rest of the world anymore. Not even like other cancer patients due to this lame Lynch gene. I was at a workshop this weekend and one of the speakers happened to be from the organization, Nine Girls Ask? which was started by a woman who had ovarian cancer. Before the founder spoke, they showed a video with scary a*& stats, stuff I didn’t know. Things I wish I didn’t have to know. I don’t want to share them with you because they are pretty horrific. Of course, I was so thrown off guard that I started crying. Wondering again if I’m ready for the “real” world. Of course, people were so understanding. And the founder was thrilled that I had been given the chemo comfort bag that her organization creates. But I was a wreck afterwards. You can only imagine what it would be like to learn all these disheartening facts just weeks after ending chemo.

All this is heavy on the heart and the mind. But then I think about how the doctors told me I’d never heal ulcerative colitis – but I did anyway. Those numbers are just numbers, that’s it. Dying young just isn’t my style anyway. I’ve always seen myself becoming a feisty, old lady. I just need to hang onto that vision, the same way I held onto being healthy when I was sick in my twenties. I just pictured it, over and over and OVER again. Until it became true. I defied their predictions before, and I can do it again.

Fuck statistics. I’m not going anywhere for a REALLY long time. I can do this.

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The best thing about cancer

Nine days until my last chemo treatment. Only two Taxol appointments left and I’m DONE. It’s been a hard few weeks. I would have thought the end would be easier with the finish line in sight. But I’ve had some momentary meltdowns lately. According to the doctor, this is normal. Patients have “difficulty coping” at the end. All things considered, I think I’ve handled things pretty well, both physically and mentally. But I do have my moments.

My entire family was together in Seattle the last week of August and I couldn’t be with them – which was really, really tough. I ALWAYS go home at the end of August. The kids are out of school so it’s non-stop play and popsicles with Auntie Julie. To make it worse, my dad had to go to the ER that week because there was an infection in his incision. I had to sit on the phone, panicking and powerless to help him or my mom. Thankfully, he is doing great now. But that was super stressful.

Needless to say, by the time Labor Day weekend rolled in, I needed some fun and fresh air. Fortunately I was at the end of my cycle when I feel better. I was able to go out to dinner, spend time at the beach and escape to Carlsbad for a lovely one-night vacation. The best thing about chemo and cancer is anything that is NOT medical feels WONDERFUL.

I came back in good spirits for my last Big Chemo. Afterwards, while laying in bed recovering, I kept thinking: I can’t wait to have my life back. I can’t wait to travel, see my family again. I can’t wait to have my Wednesdays back. I can’t wait to work again (I know, strange but I love my work, probably more than I should). I can’t wait to get back to normal.

But then I had an epiphany.

I don’t get to return my life as it was in October, 2013. I don’t get to grow my hair back and simply step back into my old self. Sure, I will heal (fingers crossed) and work, go to the gym, run errands, all that. But I will never be the same again. I will never have ovaries, a uterus or all of my colon again. I will never be someone that’s never had chemo. I will never be someone that doesn’t have to hold their breath EVERY time I get a test or scan. I will never be someone that can forget to schedule a check-up. I will never be someone that doesn’t have a little voice in the back of my head, wondering, worrying, that it will come back. I’m sure that voice will get smaller as time goes on. It must. But it will always be there.

Fortunately, there are also beautiful gifts when living with these dark thoughts – IF we choose to see them.

I’ve mentioned it before and I’ll say it again. One of my favorite gifts is being able to prioritize and not sweat the small stuff. Another is realizing how lucky we are to have crossed paths with so many unique souls throughout life. How lucky am I to have met all of you wonderful people over the years and now have your support on this crazy journey?! What a cool and interesting life I’ve led! I see that now ONLY BECA– USE I REACHED OUT AND SHARED MY STRUGGLE. I didn’t realize I’ve been building this awesome network of people UNTIL I NEEDED YOU MOST. If I hadn’t gotten sick (and didn’t have FB…), I don’t think I’d realize what a phenomenal collection of fascinating and supportive people I’ve met over the years.

It is also a gift to see past the bald head and nearly hairless face – maybe 20 eyebrow hairs and lashes left –  and see the beauty behind what is traditionally considered very “un”beautiful. How silly those magazines are telling us we have to look a certain way in order to be beautiful. I can see now how ridiculous this is! I’ve met some very sick cancer patients that share such positive and extraordinary energy and emanate such beauty while speaking their truth. And I can’t help but notice meeting healthy, traditionally pretty people that spew negativity and superficialness. I think I kind of sensed this before? But not like I can now – I guess this experience can make us more sensitive to the energy people are sharing with us. And BEAUTY IS ENERGY, through and through. We can’t always choose how we look but we can choose what energy we share every single day, every single moment. Positive or negative. It’s a choice.

And every time one of you shares something positive with someone going through a struggle like me, you’re making a choice to make someone else’s challenge a little easier – add those all up and it’s a tidal wave of positivity, love and support.

I don’t get my old life back. That’s the reality. But I get to step into a new life, and dare I say, better one? I hope I can hang onto this beauty and insight I discovered while living at the edge. That the human experience can be such a struggle but without those challenges, it’s difficult to see the beauty. And most importantly, that I am not alone. Neither are you. None of us are. We have each other and that’s all that really matters in the end. I can do this.

 

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I want to quit chemo

The last couple of weeks have been both difficult and good. The anxiety of waiting on my dad’s surgery was super stressful, especially from afar. Thankfully, he is doing fantastic and does not need chemo! Huge relief. I skipped chemo last week because my brother and nephews were in town. What a wondrous feeling it was to have an entire week off and spend time with family! My fingers started to heal, my digestion improved, and my fatigue lifted. Best of all, I got sweet kisses from the boys. Certainly the best thing that has come out of this experience is how pure and lovely normal moments are. For certain.

The downside of taking a week off was having to go BACK. Maybe it was because my wonderful brother was here for me all week or maybe I just needed to let down, but there was a lot of crying and wishing I could quit chemo. It’s like taking a glorious shower after being dirty for months and then having to jump back into the mud. Blerg. I will continue, of course, but oh so tempting….

Many people have told me how much they have learned about cancer from these posts and I’m glad to share what it’s like. Lesson learned: the end of chemo is the worst. The anxiety at the beginning sucks balls, no doubt. But it’s at the end when the chemo builds up, that’s tough. Your body feels beaten down along with your spirit.  I get tired out of the blue, so tired my body feels like lead. I fell asleep in the middle of a UCSD cooking class (geared towards patients – I was not teaching it!) I get dizzy. My nails are tender and a funky brown. I’ve fended off the painful neuropathy in my fingers but dread it’s return. Before my week off, it was affecting my toes too which makes it uncomfortable to walk. Starting to get chemo eyes (usually dark brown circles but mine are red). Itchy, dry eyes, metallic taste in my mouth, no appetite. All the crap you hear you about but never think you’ll actually experience. But one shining light, I still have eyebrows and quite a few eyelashes. Stubborn Jewish hair finally comes in handy!!

I realize this is not a beauty contest. But it’s still hard for me to catch myself in the mirror while in public and realize that’s ME. This is happening to ME. For some reason, it’s been hitting me harder this past week than before. I have CANCER. I’m getting CHEMO. They don’t know if it will COME BACK. I’m a PATIENT ALL the time. My Rite Aid pharmacists call me by NAME. For Pete’s sake, I have my oncologist under FAVORITES on my phone. How much does that suck? I can’t wait to move THAT back to my general contacts list.

I had a couple of weeks where I didn’t cry but this past week, I couldn’t stop. I just want to quit the chemo so bad!

I really, really try to remain upbeat. I try to focus on the many positives in my life. But I confess, I’m envious seeing the happy summer vacation photos posted (please keep posting them because it does make me happy to see everyone having a good time!! Helps me visualize MY happy photos coming soon…just being honest about the twinge of envy). I’m jealous of people that have their health intact, hair on their head, laughing with drink in hand. I know all those posts are just glimpses into a much larger story – nobody posts the huge fight about lost luggage or the boredom after dinner. But I’m jealous of even those moments. Why? Because they are everyday life. If you’re fighting about luggage, then you’re not fighting for your life. And I envy that. I want it back so badly. I don’t care how badly my fingers or toes hurt, I will crawl my way back to good health. I will go on vacation without a care in the world very, very soon. I will sit on the beach and drink too many margaritas and jump in the ocean, laughing. And I will fight about luggage again one day…. I can do this.

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My brother Rick and me in my ‘hood, Little Italy. That’s 5 year old Jonah on his shoulders and the uncooperative Daniel’s head in back…. :)

 

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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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