Wednesday, October 24, 2012

I'm not complaining. Ok, maybe a little bit.

Oh where to start...

Fall Colors on the Angel's Rest Trail
I have been keeping some things to myself lately, mostly because I wasn't really sure how I felt about them, and partly because I really don't want to complain.  I mean really, what do I have to complain about?  I am alive.  I am much healthier than I was no so long ago.  I don't have to get chemotherapy every other week.  I can think much clearer than at the beginning of the year.  I don't have the gigantic emotional tsunamis washing over me every time I turn around.  I am in a much better living situation in a clean, subsidized apartment with nice neighbors.  I finally have gotten rid of all of the drama in my life from a very unhealthy relationship and that feels really good.  I have been realistic in my expectations of how long it will take to get over chemotherapy side effects by not expecting to automatically rebound back into full blown life yet by setting achievable goals and realistic expectations of myself and knowing my physical, mental and emotional boundaries.  It has been feeling great to volunteer and give back to the world without having to commit to 8 hours a day, 40 hours a week, something I know would simply not be feasible at this point.  I have been spending a lot of time with my family and my friends which feels wonderful.  I have also been spending time on me, detoxing with baths, juice, dry brushing, rebounding, eating well, avoiding chemicals, processed foods and other toxins, hiking, climbing, and other forms of exercise, trying to get my RBC, WBC, platelets, neutrophils and other blood counts back into the normal range.  It all sounds pretty good huh?  So what's bothering me?  I think I may have some of it figured out.  I also think I need to make an appointment with a professional therapist or survivor group just to get this verbally out into the universe and to get some non-biased feedback from someone who does not know me.

I was perusing some sites today, trying to pinpoint exactly what has been bugging me.  It is actually not one single thing I discovered, but a multitude of things stemming from one cause.
Drumroll please......CANCER

A fitting metaphor
I have been feeling somewhat depressed for a while now.  Ok, before you get the impression that I am ready to toss myself in front of a bus let me explain.  When I was diagnosed I was in shock at first, not wanting to even tell anyone because I didn't want to be handled with kid gloves.  A very short while later I decided that I was going to rally and tell the world, bring it to everyones attention that this young, active, healthy individual was just diagnosed with an extensive terminal illness.  I wanted to share my research on how to be even healthier with everyone so that they might not have to ever get the "you've got cancer" speech from their doctor.  I rallied hard.  I went through nearly 2 years of chemotherapy, all the while getting nutritional IV's to counter as many of the nasty side effects of chemo that I could.  I changed my diet, my lifestyle, took control of my health, saw a doctor on a weekly (sometimes more) schedule and did everything that I could to be proactive with regards to my health and wellbeing.  I had a huge network of friends and family to give me encouragement and support.  Nearly a year ago I decided against my oncologists advisement to stop my chemo treatments.  They were just becoming too much for me to handle and I felt like I was really coming apart physically, mentally, emotionally and in every way.  I literally felt like they were killing me and everyone else noticed too.  Since quitting chemo I have been slowly pulling all the little pieces back into place, leaving the ones out that no longer serve me and substituting better ones.  I have gone from seeing my oncologist every month, to every other month, to once in 4 months, and now I am at the point of getting another scan in January to check out what is going on inside of me.  This feels very unusual.  I was tossed into a tornado of doctors, scans, IV's, port placement surgery, biopsies, mammograms, blood draws, medical bills, nurses, oncologists, financial counselors, medicaid, naturopaths, and somehow I was still keeping up in grad school, putting dinner on the table every night, doing all of the grocery shopping, cleaning the house, driving myself to my chemotherapy/naturopath appointments, keeping track of all of my records, and all the rest of life.  Now I go see my oncologist...I'm in there for about 5 minutes trying to tell him all kinds of stuff (why does my liver hurt more now? why do I itch like crazy when my skin isn't dry? why don't I  have my female cycle anymore?  why do I have absolutely no sex drive what so ever? why am I so tired all of the time? why am I so sensitive to noise or smells? when do we do more liver enzyme tests?).  As you can see I most likely drive him crazy.  He doesn't have these answers, no one really does.  I feel like the whirlwind of treatment and hustling to beat down the tumors is over and that I am left with debris everywhere to pick up and piece back together again.

I have been asked by some "Hey, you aren't getting treatment anymore so that means you can re-enter the work force again, right?"
How about if I were to ask this, "Hey, the tornado is gone and your house is leveled to the ground so you are going to move back in though, right?"

It isn't that easy.  I wish it were.  But if everything were just that easy then it wouldn't be worth fighting for would it?

It is pretty awakening to find out just how close death can be.  Once you are told that you could die soon you realize just how much of an emotional burden this is to carry around with you.  Believe me I think about it every single day and appreciate just how fragile life is.  It is traumatic! Adjusting to that at first was all about fighting for my life.  I have put many days into this fight and am now emerging from the wreckage with most of myself still intact sorting through it all, piecing things back together little by little, slowly but surely getting there bit by bit.  The emotional roller coaster doesn't have as many loops, twists and turns as it once did but it is still a ride.

Fatigue has been a common companion for years now.  The fatigue brought on by chemo was debilitating but I powered through a lot of it by refusing to let it limit my life to my bed or sofa.  I still went skiing, hiking, climbing and did the things I loved.  My attitude was that if I might die it will be in the woods doing something I love and not in a bed hooked up to an IV.  This is also what kept things real for me.  Being outside has always been my favorite form of meditation, soul searching and head clearing.  Now fatigue still haunts me but in a different way.  Not so much in the way that I am physically slammed and glued to my bed or sofa although that happens about once a week still too.  More so in the way that comes and goes unexpectedly.  There are sometimes days on end where I am feeling pretty good overall and one day I hit the wall and am slumbering all day long with not even enough energy to cook a meal (can you say smoothie).  Some days I feel good, the next day bad.  There are days when I feel good for half the day and crappy for the other half.  It is really a mixed bag. You never know what is going to happen.  I have been learning to just cope with it and not to feel bad if I didn't get to whatever it was I had planned to do that day.

The simple pleasures in life
To look at me one would most likely never know that I even have had cancer (it's still there but last I heard it was still dead so I am sticking with HAD).  This makes for some very unusual and sometimes awkward situations.  The other day I was volunteering at an event and all of the sudden I had excruciating pain in my liver that took my breath away and stopped me in my tracks.  I just stood there clutching my side not knowing what to do or what it meant.  Luckily it passed and I didn't have to make an excuse to leave the event.  Just because I look "normal" doesn't mean that I feel normal or that everything is normal.  Just because I am not getting toxic chemotherapy does not mean that I am now cured or that I am feeling awesome or that everything just can happily go back to the way things were pre-cancer.  If anything I am more on my own than I have ever been.  I am not taking pharmaceuticals so that means I don't go see a doctor who wants to monitor anything anymore, meaning that I have to be receptive and responsive to my own body and what it is telling me about my state of health.  It means I have to be extra vigilant about my diet, exposure to toxins, exercise, sleep and over all health.  It means I need to listen to my body when it tells me it is at its limits instead of sucking it up and pushing through anyway.  It means that I have to be on top of my natural care and keep getting nutritional IV's (I can't get high dose vitamin C IV's anymore which are known to kill cancer, as they are just too expensive), taking my supplements, and doing everything I can in order to avoid ever having to be faced with making a decision about chemotherapy again.  To hear me talk you would not think that I am struggling with money, or pain, or health, or neuropathy.  I don't usually talk about those things unless I am prodded some.  When someone asks me how I am doing/feeling I will say that "I feel great" or that "I am doing really good" and that is not a lie.  I am.  I feel much better than I did 1 or 2 years ago, and I am alive and still in good spirits, able to love and laugh and see the beauty in every single day.  So overall, what do I really have to complain about?  Let's see: fatigue, lack of mental clarity/focus, chronic pain, neuropathy, financial stress (still living on $7/day), worry about the future/cancer recurrence/secondary cancers, lack of concentration, paying for treatments not covered by insurance, people thinking things are great and back to normal now that chemotherapy is over, how to move on to a new normal when you don't even know what normal is or if you even want "normal" anymore anyway...what if "normal" is what contributed to getting cancer in the first place?

I am giving myself a present.  I am giving myself time to fight my cancer and time to heal from it.  I am so happy to be able to give thanks for all of the things in my life that are so good and right and healthy and loving instead of only seeing what is wrong or what I am missing because of my situation.  I am choosing to focus on everything good and put my attention and energy there so that I get good in return.  The very day I was diagnosed I remember sitting in my back yard watching the trees and birds and thinking to myself "I may never see this again" and then instantly thinking to myself "NO! I will never see this again because this is one moment in my life and it has no equal."  This is when I changed my thought process from what I might not get to have/do to focusing on everything that I do have and can do.  This is another reason why it was so hard for me to write this post today.  It is why I have been kind of quiet on my blog for a while.  I really feel like I have no right to complain about anything, even though life is still quite the struggle.  I am not one to complain, especially since my perspective has been changed so drastically.  Today I had to get it out.  It felt like the thing to do.

In the meantime I am continuing to volunteer at various places, getting my feet wet again so to speak so I am prepared for a full time job when I have the opportunity and ability.  I am looking forward to ski season and getting to use my awesome birthday/early Christmas present from my mom and dad of a midweek pass to my favorite local mountain.  I get out and hike as much as I can when I can (even in the rain) when I feel good, fresh air is medicine for my soul.  I don't leave my house much except to occasionally meet a friend for tea or to see family as every time I leave my house it costs money (either money for gas to get there or money for wherever you go) and living on $7 a day will quickly teach you how to become self entertaining and resourceful and that staying home is often the best entertainment.  I continue to make mobiles to help pay for medical expenses at my naturopath and for a little extra gas money so if you want one please let me know.  They make great Christmas presents (hint, hint) :)

Here is a great article about cancer survivorship and issues cancer survivors face.  Many of these really hit a chord in me.  It felt good to find a sort of validation for the many feelings I have been having both emotionally and physically.  You may find some enlightenment in it as well.

I have also been thinking a lot about self love lately.  Doesn't it make sense that if we loved ourselves more, we would make better choices about our health/food/life etc, be nicer and more loving toward other people and animals and to our environment, ultimately leading to a shift in consciousness that could radiate out and become a revolution?

8 comments:

  1. Please never stop writing. You truly get it!

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  2. This is such a relatable post. From the bizzaro ‘why do I feel so sad’ feelings, the efforts to give ourselves time to recover (I love that tornado analogy by the way – absolutely perfect) to things going from bad to good to bad to good, and all the questions that never stop popping up. Terri, who writes at our community page, was saying just the other day how we can be fine one moment, and then out of the blue low the next. Life after cancer is something the hospital just doesn’t prepare you for life after treatment. (I mean the loss of a sex drive or ability to have sex, the tiredness, the expectations, the moments when we’re pumped to be living, the new relationships, the highs and lows . . . the everything.)

    But blogging is good and I’m happy to read that you are letting it flow in this post. If you ever want to visit our page, you are welcome to ask as many questions as you like. :) We’re just a bunch of ladies trying to figure out life during and after treatment, but we certainly are happy to try and discuss new ideas. In any case, I hope you find the vent that you need.

    ~Catherine

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  3. Catherine,
    Thank you so much for the kind words. You are right, the hospitals and doctors don't have a clue how it feels and if they do they aren't saying ;) I will stop by your page and check it out.
    Healthy blessings!

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  4. Well, you certainly packed a lot into this post! Like Catherine mentioned, I love the tornado analogy too. Wow, is that ever fitting. It's a good reminder to be a little kinder to ourselves isn't it? These things take time. Processing through all this stuff takes a lot of effort and a lot of time. Figuring out life post-diagnosis, post treatment or post-whatever, is really a tough challenge. Your feelings of sadness and uncertainty sound pretty reasonable to me considering all you've been through. I hope you do get to see a therapist. I wish everyone who receives a cancer diagnosis could see a therapist at least once. Anyway, good luck moving forward. I don't have much figured out yet either. I wonder if anyone does.

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  5. Nancy,
    Sometimes it is difficult to figure it all out. It certainly is no picnic. I often feel that I really have nothing to complain about, yet at the same time I have many needs that are not being met somehow. It is an odd place to be in as I am sure you too well know.

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  6. great article writer never stop.
    check out wallpapers

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  7. As I wound down a year of chemotherapy, I commented to my oncologist that I suspected the following year might be harder for me than what I'd just been through. No drama, no crisis - things "seem" normal, but will Never Again be normal - for better or worse. Onc looked at me and said, "you are a very wise woman, Erica."

    I've been working throughout treatment at a reduced schedule, and I'm trying to "bank" my energy so that I can get back to full time in January. Very stressed about that. I think I can, but I'm not fully confident.

    And YES to being outside! I spend some time every morning in the beautiful garden I built - watching the sky lighten, hearing the first birds call, cuddling with my cat or dog. Peaceful.

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