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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I’m glad cancer gave this to me

It’s a funny thing, perspective. I’ve certainly gained more of it over the years. But there’s nothing quite like the gift of perspective that cancer gives you.

I had a dream last night that I was with a crowd of people and we were going through old boxes of stuff. There was a recycle box, garbage box, and “keep box.” We were deciding what to keep and what to toss.

Since I’ve done this more times than I can count  in real life with all my cross-country moves, it felt very familiar. However, this dream clearly didn’t have to do with actual “stuff” as much as it had to do with “baggage.” I noticed in the dream that I kept tossing everything out. I didn’t feel like I needed the old dishes, clothes, etc. anymore. I can’t remember the particulars of what I threw out but I do remember helping other people toss out their old stuff.

The best and worst thing about having cancer is that the rest of the world falls away. I’m sure there are other life events that cause a similar sensation (having a baby, sick family member) where you develop tunnel vision and you quite literally stop sweating the small stuff. That small stuff doesn’t even make it onto your radar. Which sucks because that small stuff is what makes us feel normal and part of everyday life. But it’s also beautiful because you realize how insignificant most of our worries and thoughts are throughout a regular day.

What, you’re cutting out three of my organs? And I need to pump toxic chemicals into my body for several months after that? Okay, that I need to worry about. (Or, do I? Can I just roll with it? That’s for another blog post!) I honestly can’t remember other things I was concerned about before this happened. I know I had a bunch of them because I love to worry. But I will take this opportunity to view cancer as a gift if it helps me not stress out about things that will work themselves out whether I focus on them or not.

I guess I’m looking at cancer as a time saver in addition to helping me gain perspective. Time is so precious right now. I have only so many good hours and good days, that I have to be careful about how I spend my time thinking, talking, feeling, who I’m with, what I’m doing. I can only pick the top priorities right now. That’s what it’s giving me – the ability to see what’s truly a priority.

We waste so much time! Worrying about stupid things, doing things we don’t want to do! How often do we step back and say “is this really, really important? Should I spend my time doing or thinking about this? ” Or, do we say “you know, I’m really going to think through whether this [worry, project, meeting, job, relationship] is a priority and if it’s not, I’m tossing it out. NOT WORTH MY TIME.” Bummer I had to have this happen to recognize how precious our time is – but glad to finally comprehend it.

Lemon out.

 

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Trying to let go of the fear (and mostly failing)

I know it’s normal to be afraid of chemo. But my rational brain keeps telling me that I shouldn’t be afraid – so many people have been through this and are doing great now! But this fear is different than anything I’ve felt before. Every time I think of the IV starting, I feel a pit in my stomach. So not my style, as one friend put it. I’ve jumped out of a plane, scuba dived with sharks, traveled foreign countries on my own – even lived through a bombing in Israel and managed to get on a bus after that. It’s not like I didn’t feel fear at any time – I did – but it didn’t feel like this. Never like this.

I do remember one huge fear. In my twenties, I was afraid I’d never heal the Ulcerative Colitis that doctors said I’d have “forever.” For nine years, I didn’t know when it would come back!  But I just remembered the moment I made a huge shift that marked the end of that disease. It boiled down to letting go of of the fear of getting sick. I forgot this memory until now so maybe writing about this is more cathartic than I anticipated.

It was right after the bombing and I was incredibly upset – understandably. I remember thinking that if there was ever a time I would have a stress-induced colitis flare-up, it would be then. I ran through all the probable scenarios: prednisone (steroids that I hate), possible hospitalization, not being able to eat. But I remember standing in my cousin’s Jerusalem apartment, shrugging, and saying “oh well if I get sick, I’ll deal with it” and somehow I released this fear I’d lived with for years. I knew I would survive all those scenarios. Maybe knowing true fear – being in a war zone? – suddenly minimized the fear of getting sick. I don’t know. The disease petered out over the next year and I’ve been in remission ever since. (Mind you, I was doing a zillion healing things for my body at that time in addition to this change in perspective. Healing did not happen overnight at ALL.)

I have done it before – released a HUGE fear. I can do it again. The trick now is to let go of the fear of something I have NOT EXPERIENCED YET. I’m struggling with it for sure.

Perhaps my wise 12 year old nephew is right when he told me “it’s the cancer you should be afraid of, not the chemo.” Maybe I need to look at the big picture and recognize that my fear of this temporary treatment is not serving me because ultimately, it’s going to save my life. Like my fear of having a colitis flare-up, it’s small in the face of getting blown up or dying of cancer. It’s a teensy, weensy little fear that I can shrink with my mind at any time. Perhaps I should imagine the fear as a stone – and instead of it being this huge boulder, I’m shrinking it to this tiny rock. A rock that I can throw away at any time because it’s small enough for me to toss aside.

Or, my Uncle Larry, who went through chemo in the 80′s suggested, think of it like an athlete: chemo day is game day. Focus on preparing for it. Think strong. Create a routine. Go into your own world. Focus. I like this outlook. Everyone develops their own mindset to deal with this. I guess I’ll figure out mine.

It feels good to share my fears with you guys. And your advice helps A LOT. I’ve never been a public sharer but for some reason, this doozy of a diagnosis has helped me shuck that pride aside and ask for help. I’m glad I did because I’m learning a lot from all of you and from the experience of being vulnerable.  26 hours and counting. I can do this. My new mantra: I can do this.

Happy Passover & Happy Easter. Love, Jules

 

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I’m freaking out about chemo

26 days A.S. (after surgery)

I’m usually pretty stoic about my health problems and treatment. When I had a tube put down my throat at 11pm in the hospital because I wasn’t moving anything through my sleepy intestines (ileus), the nurse was astounded with how I handled it. She said most people cough or gag and I just sat there silently even though it felt horrible. One benefit of being a patient for so many years is knowing how to suck it up. Please, any designers out there, please create a new nasogastric tube for hospital patients. You’ll make a zillion dollars while helping patients not suffer. Win-win.

Anyway, I found out this week that I must start chemo next week. So soon! I thought I had a couple more weeks. Apparently, I have a better chance at survival (eeks) if I start chemo earlier than later.

I burst out crying when the doctor informed me yesterday. Once I process news, I handle it well. But I hadn’t processed this and it feels too soon!  Or, maybe I just need to start since anticipation is always worse for me than the reality. But still, I don’t have time to boost my immune system! I CAN’T HAVE RAW VEGETABLES & FRUIT (arrgh, first summer in California)! I don’t have time to get any work done! I don’t have time to write thank you notes to everyone! I won’t be able to fly for 5 months! For many people that doesn’t sound like a big deal but I feel physically uncomfortable if I don’t have a purchased plane ticket (my gypsy blood). Plus, that means I won’t be able to see my precious nieces and nephews in Seattle that are too small to fly to California. That’s the toughest one.

Thankfully, I have a car now and can ROAD TRIP on my good days. So many cool places that I can get to in Southern California. The doctor said to continue my life as I would normally. I hope I can still work on my computer. I have given up on teaching cooking classes or trainings this summer because I can’t book them ahead without knowing which days will be good or bad.  Urgh. I love working. That’s another big bummer. I’m trying to believe I’ll have minimal side effects but I am so sensitive to so many medications, who knows what will happen. This is what scares me the most. My sister was so sick during her six months of chemo…

I’m also tripping out about losing my hair! My eyelashes! My eyebrows! How strange it will be. To be a bald woman. What a perspective on things it’s already giving me. Taking my hair for granted! Such a seemingly small thing. But so huge to our identity.  I’m getting a wig made out of my own hair (bob or long? I can’t decide) next week. Weird. Any advice on how to handle this experience is welcome.

I don’t want to do this. I really don’t. I mean nobody wants to have chemo. But that’s the overwhelming feeling I have. Very scared. I know I’ll make it through and it’ll be okay. But still. Every three weeks for five months – a total of six treatments. I have to get my head on straight. Let go of the fear. It’s hard to do but I know it’s a must. Everyone tells me chemo is a mental game. Positive outlook is a must. I can do this. I have to believe that. I can do this. I can do this. I can do this.

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Every day I have a choice

I’ve been talking to other people who have gone through chemo. And they are teaching me about how important it is to keep my mind in the right place. It makes sense: it’s the only thing I have control over right now. My body is not my own right now. My body currently belongs to the UCSD system which scans, pokes, injects, and removes organs from it. This is my current reality.

The only thing I have complete sovereignty over right now is my mind. Man, it would be so easy to slip into the “poor me” mentality. Slide right down that rabbit hole into bitterness, frustration, anger, resentment. That slide is just there, tempting me with it’s negativity bubbling up from all sides. But I did that when I had the melanoma and it didn’t serve me. Didn’t do shit except make me feel shittier.

This time, I’m making a different choice. For one, I’m telling people what the hell is going on. What a difference it makes! To ask for support and THEN RECEIVE IT. Not so easy to receive help when I much prefer giving it. It’s an art, receiving help. One that I’m getting better at but still fumble with from time to time. I don’t recommend having to go to that extreme in order to learn the lesson on receiving help! Although it certainly was effective….

The second thing I’m doing is making a conscious effort to change my mental game. I choose what’s going up on the big screen in my mind. I hold the remote, I can change the channel any time. Every morning, I realize, I have a choice. I can stay on the negativity channel – start thinking about how incredibly messed up this situation is and how frustrating it is that I have to go through it. Or, I can go to the sunset and beaches channel and think about how this is just a blip on the radar of life. How lucky I am that I have such an amazing support system. How fortunate I am to have REALLY good doctors. I watched a commercial last night about paralyzed veterans and it hit me that I’m going to GET BETTER. It’s likely they will get all the cancer out of me. Not everyone else gets better. This is short-term pain for long-term gain. I don’t want to go through chemo. Not. At. All. But if I’m going to do it, I’m listening to my friend, Jackie Stolber’s advice and staying in the positive realm. It’s not easy to stay on this channel. But it’s all I got right now and I’m sticking to it.

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