Thursday, November 29, 2012

La La How The Life Goes On

It's been a busy November. A few days after Mike and I returned from our mini getaway my Mum arrived from Ontario followed by my older brother Nick arriving from New Brunswick. It was kind of like a little family reunion here at our house. Nick and I hadn't seen each other in close to 9 years, so it was really an over-due get-together. It's amazing how family can go so long without visits... but I guess that's what happens when you're scattered across the country like my family.

The time I had while they visited was very therapeutic... it was really nice to spend time with my Mum and older bro. Together again for the first time in so long. Travis even came down from Squamish on the weekends to hang out with us. We spent a lot of the time at appointments, organizing rooms in the house (thanks Mum), eating good food and playing 4-player Super Mario on the Wii. It was great distraction for me having company for 3 weeks and thankfully the distraction didn't end when they left last Sunday...

...Yep, the good stuff continued into the evening because I was lucky enough to get to see Paul McCartney at BC Place. I am a pretty big Beatles fan, so I was beyond excited to get to see one of them perform live. Mike, my Dad, Judy, Uncle Ben and Mamka all were in awe of Paul. He really rocked right out... I still can't believe the guy is 70 years old. It was an amazing experience and I am just so thrilled to have been there to see him and hear the music live! Awesome!

With all of these distractions going on it has been easier to find my smile this month. Sure, I have had my share of tears in between and have found some low moods creeping in, but I really could not have asked for a better month of November to help keep me afloat post-treatment.

The fact that I received good news with all of my scans and procedures has also helped me feel a tiny bit more at ease. I currently have no real reason to believe that I have cancer in my body, although we never really do know for sure. But all of the tests came back good... no signs of cancer (some early signs of degenerative stuff in two vertebrae are apparently why my spine has been sore... I'll be getting another bone scan in 6 months to monitor, but the radiologist is pretty confident is doesn't look like early signs of cancer spreading).

Even though these last few tests came back good, I just have to hope that there isn't a rogue cell lying dormant waiting to take up residence elsewhere in my body. It scares me to think of the woman I have met who have had this happen... sometimes it happened soon after treatment ended, sometimes it was 2, 5 or 10 years later. And it can be a second primary breast cancer in the other breast that can occur or the same breast cancer but metastasized to the bones, lungs, brain or liver. Or it will be a leukemia from the chemo? Or lung cancer from the radiation? Or endometrial cancer from the Tamoxifen? Once you have it once, you're never really in the clear from cancer. It sucks that the treatment needed to knock cancer out, can actually cause cancer later in life. Making decisions to do such treatment and having this knowledge is like having to jump off the edge of a cliff with an anvil attached to you.

It's pretty obvious, clearly, the worries, anxieties and fears are still there fresh and all up in my face each day. I no longer currently think "I am dying." When my spine hurts now I know the bone scan came back clean. But I am still in a state of hyper-sensitivity to any sort of new pain or ache that occurs. I miss the days where having a head ache, sore lower back or chest pains didn't send me in a paranoid "Is it cancer?" frenzy. I miss being care-free and not worrying about whether or not my body will betray me. Some days I can live quite free of the nagging thoughts and actually think "Hey, maybe I will be one of those people who just had cancer once." But then I think I am kidding myself... To me, it is dangerous to think this way... to be too optimistic to me is to be in denial. I can't block out the idea that it may happen again. I just wish I knew. And if it were to happen again, I wish I knew when. And if it was going to happen again I wish it would wait until I have lived a full life and come back in my 70s or 80s.

Having thoughts like these every day can really do harm to my mood. And how could it not? Feeling tired and sluggish all the time hasn't been helping my spirits either. Fatigue is a big pain in the butt that I am told lingers long after treatment. It makes sense really... I just pumped my body with toxic chemicals, damaged good cells and radiated the crap out of my chest. I need to give my body time to rebuild and heal itself. It's almost like being born again. Not as drastic as someone having to have bone marrow transplants where their entire immune system is brought down to zero (on purpose), but in a way completing any kind of treatment really is like a reboot to the system. Physically, mentally and emotionally. Chemo brain is real! I just read an article about it the other day... made me feel a little less crazy and thankful knowing that my forgetfulness is really caused by the treatment I had to go through. I have definitely noticed I am not as alert or 'on it' as I once was and for the perfectionist control freak that I am, that can be really frustrating. I am constantly having to spell check and re-read and look up how to spell words. I even use wrong words in sentences or just completely blank on what I am talking about.

It's no surprise that feelings of discouragement, fear, guilt, anger, anxiety, depression and sadness are emotions that come up for me on a daily basis. Having been doing some mood boosting therapy and cognitive exercises online I have been able to identify that I have been lacking joy in my life ever since diagnosis. Duh - No shock there. But now having finished treatment I am left with this void. A part of me is missing and I feel broken in so many ways. I no longer am the same person I was before all of this and it is a cold hard reality having to come to terms with this. Thinking of the past few years, looking at old photos no longer gives me a feeling of happiness. Fond memories are now met with a sadness. And thoughts of my future are filled with uncertainty, fear and even dread.

Since we humans tend to either live (in our minds) in the past or future most of the time, it makes it really hard to find some neutral thoughts that don't trigger some kind of sadness or anger in me. I can't remember what the different stages are of shock but I know anger was supposed to be number 2 in line. Apparently I was supposed to go through denial and then anger right after my diagnosis and yet it seems I am just dealing with anger now for the first time since I was told I had cancer... knowing we are all different and each individuals experience is unique, I find it funny that there are actually pamphlets out there telling us cancer patients when we might end up feeling a certain way... Having said that, I know for many of us, it is the after treatment part that is most difficult to move past. That is pretty evident.

While I have just spent 10 months in damage control mode... surgery, IVF, chemotherapy, radiation... every one around me has held their breath hoping I would make it through. And now that treatment is finished every one around me has exhaled, and to them, it is over. Ashley beat cancer. She is cured. She is cancer-free. Now we can move on and forget it all happened and we can all go back to living  life.

Life does go on. It is business as usual for most. But not for the one having just been through cancer. I know I used the post-war analogy before, but it really is on par with what it feels like to come out of cancer treatment.

The stress just endured, the trauma, the scars, the anxiety, the physical side-effects, the thoughts on death... heck, this is a total over-share but who cares: I fricking thought I had a dropped bladder recently because I felt like it was always full no matter if I peed or not... had pelvic exams, ultra sounds and for some reason my bladder was not 'working' properly. It wasn't emptying like it should (something only really common in older folks not someone who is 29 years of age)...

Ya, turns out I can't relax! Turns out I have been so stressed out that my body is always tense and therefore I can't relax and have felt like I need to pee all the time even after having gone to the washroom.

This little bit of information regarding my inability to fully let go was kind of an eye-opener. I knew that cancer had scarred me. I knew that I wasn't able to bliss out effortlessly. I knew I couldn't do guided meditations on my own anymore like I used to before surgery. I knew I was struggling with finding a balance in my 'new normal' since treatment ended, but I didn't realize just how much I wasn't allowing myself to breath and chill the eff out. The phrase "I didn't just survive cancer to die from stress" comes to mind. And that is what I am trying to learn to cope with.

This recent realization has shown me how much effort I really am going to have to try to put in in order to rebuild and heal my life... slowly but surely... gently and patiently... and the first step is really to make sure I find something that gives me joy every day. Without joy I am a shell. I am just a girl trying to survive being a survivor. There is no purpose and no meaning. The only problem is that I haven't quite figured out what does give me joy as a cancer survivor. There were things that used to... no longer on the table or bring up too many bad emotions.

Finishing treatment for me really has been a mix between post traumatic stress disorder and an identity crisis. It sounds like what could potentially be an exciting fresh start to most... but to me it is daunting, scary and unknown. I don't know how to start... don't know where to go... don't feel like I have a direction and sometimes let those fearful thoughts in that say "What if it comes back... then what?" "Hurry up and figure out your joy so you aren't wasting any time worrying before the cancer comes back." and "Well if it's coming back anyway it might just be best not to rebuild too much because it will make it that much harder leaving."

Suddenly simple things like what dish to make for company or whether to use the pretty napkins take on an entirely new view. Wondering what activity will be most memorable with your family visiting incase you die in a few years. Going through clothes and knick knacks and putting them in the Salvation Army pile because it will be less stuff family has to sort through when you're gone. Deciding whether to conserve your energy or whether you should push yourself to make the trip because "You may not live to be 30"...Feeling guilty sleeping so late but knowing you need it. Wondering if it might be smart to organize accounts and passwords for your husband NOW rather then when it's too late (just so it's done! Just incase!) Hearing of babies being born, wondering if it is wasteful holding on to the bibs you bought a year ago cause they were cute and because you assumed you'd get to have kids soon. We should get a Christmas tree this year because what if there are only a few more for me to celebrate. And what about the new fireplace you need to invest in cause the current one is busted? Probably best to get it now so it's dealt with and Mike won't have to worry about replacing it when he is stuck with the house on his own.

Yep, tedious nagging little choices where cancer has caused dark and negative thoughts. Everyday decisions are now met with a new meaning and it is both stressful and depressing. But hard to ignore and not actively take part in.

I know the answer is to simply just live. Live fully. Do things that make me happy. Find that joy and just DO things. Don't let cancer define me. Don't let it bring me down. Don't let it consume my days.

But this is so easier said then done. No amount of warning could have prepared me for how difficult survivorship is.

While I try to discover who I am now everyone around me has moved on. While I am trying to pick up the pieces and just now try to emotionally come to terms with what the heck just happened to me, everyone else is expecting me to go back to normal. When the oncologist visits go from every week to every month to every three months and then eventually to six... When people say things like "You don't look sick" but you actually feel like shit, are exhausted but really are just putting on a show for people... When people assume and put pressure on you to bounce back quickly... When you constantly feel like you have to justify your lack of energy and effort... When you yourself feel guilty, lazy and like you can't meet your own high expectations. When what you thought post-treatment would be like and it isn't...

Defeating. Sad. Isolating.

This is where I am at. I am in the middle. In that space between cancer patient and cancer survivor. Not knowing how to move beyond the treatment. Feeling lost, incomplete and fragile. Wishing I could just miraculously wipe out the emotional trauma of it all and move on. Wishing I could just be insanely happy and grateful that I am alive today without having fear and sadness kickin' back in my rear view mirror. Wishing that every day it wasn't such an effort to get by. That it could just be easy.

I can't imagine what the last month would have looked like if I hadn't had company to help keep my mind off of things. The thing about family is that you can still have your rough days... You can break down and show your emotions (or at least I do). There's a balance of distraction and allowing feelings to occur that makes being around family a lot easier I think. And it makes me afraid of what the next few months might be without that every day distraction, compassion and support. Knowing I will be coming up to the anniversary dates of so many horrible events that I wish I could just erase from my mind terrifies me.

But for now all I have is today... My life is continuing... It does go on. I am just trying to sort it all out and make sense of it.  Deal with the emotions. Figure out the anger. Trying to tame the irritability. Talk down the anxiety. Speak with professionals and potentially entertain the idea of an anti-depressant. Come to terms with my new body. The scars, pains, low energy levels, fears of dying young and dark clouds that shadow over me... Challenges I never thought I'd be dealing with at this point in my life... but they're here and it's my reality.


  1. Damn, girl! I just said almost all this to Tom last night. Except I added the survivor guilt to it. Has that hit you yet? I am glad you smiled, even for a time, it stregnthens the heart and encourages the soul. I keep saying "I am not surviving, I am living". I a so tired of getting the "You look great" when I am so tired and feel yuk. But we keep going, right? Much much love to you. And BTW you are a great writer and you name is perfect to be on the cover of a book:)

    1. Oh AM... I totally hear you with the guilt. It comes in many different forms doesn't it?
      Thanks for reading and leaving such a thoughtful comment. You always know how to make me smile! :)

  2. It is as if you have been reading my mind. So impressed that you shared. I try to mask it to others. To them, we won, game over, time to move on. If only they had a clue! I am grieving my previous life. There is such truth to ignorance is bliss. Just know that you are not alone charting this new territory we call our second chance. We definitely seem to be on the same page. Keep your head up! Prayers to you finding joy in each day!

    1. Thanks so much for writing. Ignorance IS bliss!! It is comforting to know I am not alone with these feelings. I really appreciate your positive thoughts... sending them to you as well. Hugs.

  3. Ashley - You said everything I've been feeling and more. I think for most of this year I've been on auto drive just trying to survive and get this cancer out of me. Now that I am "cancer free" everything should be OK right? Well, it doesn't feel OK. I too posted how every pain or discomfort I feel, I automatically think how it could be my breast cancer that spread. I can't help it! Kevin mentioned when I talk about the past I say, "back when I had my own boobs," and that everything is now categorized as pre-cancer and post-cancer. I can't help it! It's where my mind is constantly. I think this is something we will have to deal with for quite some time, but I hope it eases as time passes. I've missed your posts and am happy to see one today! - Jess

    1. Hi Jess, thanks so much for your message and encouragement. It made me feel so good to hear you were happy to see me posting. It is so helpful to know that what I am going through is normal... It makes me so sad that there are so many of us young ladies dealing with this but at the same time I feel lucky that I am not flying solo on this crazy roller coaster ride. Thanks for popping by and chiming in that you too have been feeling these things. I too think "before cancer" and "after cancer"... It is like we are a new breed of human now given a second life. Lots of love and strength to you. xo

  4. Ashley, wow, that post is incredible. Truly you have been there and back and unfortunately I understand all that it takes to be a cancer survivor. Your talent in expressing your feelings is wonderful. Just sorry we have to meet under these circumstances. Hugs :-)

    1. Thank you Michelle... Sometimes you just gotta let it all out and put it on paper... or in this case, on my personal blog. I was so happy to read that you will be going away soon. It is SO important to take that time after treatment to decompress and distract your mind from all that has happened. Much love to you. xo

  5. I'm so glad to hear you got to spend some lovely time with your family. SO important. I'm so happy to live with my parents at the moment. I don't know what I'd do without them and I also break down on a regular basis ;)
    After being diagnosed I realized right away my life would never be the same and that I would be scared of cancer the rest of my life. The stories of other woman out there having to deal with it more than once are breaking my heart, not to mention the ones that were taken away from us. How do you cope with such a thing?! I have no clue. All I know is right now, once you finish treatment it definitely isn't over. And a lot of people aren't going to understand that probably. But I'm always here for you! XXX

    1. It really is important to be with people during treatment. I am so glad that you are able to stay with your parents and have ppl look after you! I don't know what I would have done if I didn't have all the friends and family spending those worst chemo days with me.

      I am here for you too Ciel! I think of you daily. Hope you are coming out of the dark hole today. xo

  6. Courage, surrender, moving on, acknowleding where you've been and where you are, laughter and tears - what a precarious balance you are walking through. Much love and grace.

    1. thanks so much for this Kimberley... Really appreciate your words. xo