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 BECAUSE 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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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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