Monday, August 27, 2012

On Expectations & The Non-Existent How-To-Deal-With-Cancer Handbook

There's something about Summer. I've always loved it. The warmer weather, the weeks of sunshine, the flowers, shorts and dresses, pleasant evenings spent outside until late, beach walks, gelato and flip flops. If I could have my way, I'd live somewhere where the temperature never went below 21 degrees Celsius. I'm just that kind of gal.

The very presence of Summer has kept me quiet on the blog side of things. Well, that and I really was giving myself a breather from writing. I found myself needing to cope quietly in the last month. Go easy and not do too much or take on a lot. It has been a tough while and hard to find a good balance. Chemo side effects are lingering and some are worse now than when I was going through treatment. It has been very discouraging and I have found it tough to be positive and chipper. This has resulted in many "fake it till you make it" moments.

I am trying to go easy on myself. I know I have been through a lot and now comes the time to process it all I guess.

Thankfully I have found some little corners of joy in being creative, playing my piano, spending time in the garden and a few other simple happy things have helped me ride the little waves that are my good days.

Instead of writing I have been doing a bit of personal art therapy where I have challenged myself to do some artwork each day. So far so good. I enjoy doing it once I get started. I will choose a random subject quite often, other times I will do Illustration Friday's weekly topic and some days I will create something that been consuming my thoughts. Whatever I create, whether it takes 5 minutes or an hour, it helps me get going in my days. Gets me creative. It keeps me doing. Something I lost for awhile so I am pleased to be getting that back.

I started this personal challenge of art therapy on a day where I was feeling very depressed. In hopes to help heal from the traumatic times that have passed. It has been really difficult though. Since finishing chemo in July I really did become quite sad as I mentioned before. These feelings of melancholy have unfortunately stuck around.

When I saw my oncologist in early August she said it is very common and normal for this to happen after treatment... the same thing my chemo doctor here on the Coast has warned me of as well. I had been go go going for so long and have had so much constant care for weeks and weeks. To suddenly stop seeing a doctor every week felt weird. There are feelings of despair, abandonment, loneliness, uncertainty, anger, frustration and of course, the big one… fear.

Everything to me right now could still be cancer. Lumps. Bumps. Sore bones. Chest pains. Suspicious nodes. I had several appointments in August to prove these fears otherwise, which thankfully…yes... everything is OK that we know of, although I do have a mammogram and an ultra sound in September now on my calendar… I will feel much better once it is over with and both tests come back clean. Fingers crossed.

At this point, I should not have any cancer left in my body. I could very well be calling myself a "Cancer Survivor" now… I have a few times claimed to be one. I want to be this. Forever. But when I use this term I feel hesitant.

As other women with breast cancer know, the term Survivor can so easily be taken away from us. When I hear of women who have recurrences, young women with aggressive tumours like mine who get a second primary cancer, people who have just finished chemo and find out soon after that somehow the sneaky f-ing cancer has taken up residence elsewhere in the body and it's now stage IV… all of these cases are so incredibly sad, upsetting, disturbing and freak the living crap out of me. I feel awful for these women who have fought so hard to get through it and end up having to deal with it all over again. I fricking hope for my life that I am not going to have to face something like this ever again.

But this fear is there. It is with me every day.

Even though the chemo treatments are finished... It doesn't mean I am finished with breast cancer. It is now apart of my life. The aftermath of it is unlike anything I expected. I once couldn't wait to be where I am at this point but it is almost more depressing now than it was before. The only thing that makes this OK to me is that I am always being told it is a normal feeling. As long as the painful mood doesn't last for many consecutive days. Which in my case, luckily I don't go longer than a three before I finally have a break through and feel hopeful again.

And then the cycle continues. Good one day. Bad two. Good one day. Bad three. Good one day. Bad two. And so on and so on.

Some mornings I wake up feeling really positive first thing and I talk myself through the day, reassuring that I'm supposed to be happy and enjoying whatever it is I am doing, not allowing a glum mood to overtake me. Lately there are more days where I struggle than days where I am care-free. On a good day I can wake up pumped, excited for my plans with my first thought before getting out of bed being "F&^% you cancer! You're not taking away my day." hehe…for real, I have actually yelled this with conviction in order to really instill it in my mind. And as a result of my loud proclamation, it often causes my cat Abber to shoot straight up off the bed, poofing her tail up like a racoon and turning her ears back in 'take-flight" owl mode.

On a great day like that I totally feel sure that I will never have another cancer diagnosis again. I will never have to deal with chemo, surgeries or any of that crap. I'm done with cancer after this one encounter. Never again.

And those days rock. Because I feel alive and I feel strong and positive and like nothing will stand in my way.

But when a shitty day arrives say good bye to all of that. There is no hope. There is no positivity as I lay in my bed, aching and sore already before I even get up out of bed. And I completely shut down before I even put my feet on the floor. I am convinced that cancer will rear it's ugly stupid piece of shit head one day...If only I knew when. I lie there imagining it all and try to force myself to start my day. It's 10:30 am and I have to at least TRY to take care of myself by eating breakfast. Plus Abber is meowing for food. Better get the cat fed. Thanks to her whining I don't lay there for another hour.

By the time I have had my morning shake and tea I am fully accepting my imminent young death (where, if I am lucky, I will live to be in my 40s at least). I wonder if Mike and I will have had a child. Think it's not fair to do that and scratch that idea completely. And then I visualize what life will be like for other people without me here. I think about what I could do to better prepare them. How to organize my stuff so it's easier for Mike and my family.

And then I bawl my eyes out.

I picture all of my things being given away to people. Donated. Or kept for a story to tell. I think about people I know who have died from cancer. I remember their pain and discomfort. I wonder if stage IV hurts. I wonder if I will go crazy. I think about funeral songs. I wonder how scared I will be. I wonder what will happen to soul. I imagine being told I will need chemo for the rest of my life. I picture having to have another MRI. The thought of that confined space sends me over the edge. I fear bad news. I fear suffering. I fear dying. I fear not existing. Panic hits. And I lose it. I totally melt down and use a lot of kleenex.

These are hard times.

Cancer can get ugly. It is all the things you're not supposed to talk about and then some.

Luckily I am not completely derailed all the time! Because if I were, I'd be doing some serious counselling on a regular basis. Which is fine if it comes to that, I just would like to hope that it won't come to that.  And for now, the times I do feel I am getting a bit out of control, I do have some amazing healers to turn to who have helped coax me back into the world of NOW.

I think what makes this so hard for me lately, other than the fact that the chemo side effects seem worse now than before, is that I feel robbed that I have had to face something like this at my age. Statistics have demonstrated that younger women are the ones with the more difficult to fight breast cancers making my fear thermometer sky-rocket.

It especially doesn't seem fair when it happens to you in your 20s and breast cancer is something that used to just be something found in women over 50. This isn't right that breast cancer is happening to us young ladies more frequently. Even my plastic surgeon Dr. Van Awesome acknowledged the latest increase in young patients she has had and said that there are is a lot of research going into trying to determine WHY it is happening more now in women under 50... and women under 40 even since it seems that is where the numbers are increasing. (I could go on a tangent about my personal opinion on this but I will restrain myself as it would probably result in a sour mood and I don't want to end up grumpy when Mike gets home!)

While most other 20 and 30 year olds I know have their health, their hair, are travelling, having children, going on road trips, being active and enjoying life... I am making a choice as to whether the risks of 28 rounds of radiation outweigh the benefits of going through with it.

Yes, I am coming to terms with the fact that I will be doing radiation. I'm getting ready to voluntarily have radiation to my chest starting in the next few weeks. Where we know 10% of my lung will be damaged permanently. Where there is a chance I could develop a heart problem, breathing problem or thyroid problem. Where a contra lateral cancer might be a side effect because there is a higher cancer risk in younger people getting rads to their chest. Where lung cancer could occur 7 - 10 years down the road due to the radiation. Where all of these horrible things could arise 3, 5, 10, 15 years down the road. Because we are trying to treat what I have just had now.

All because .4 mm of cancer in one of my lymph nodes and the grade 3 tumour. The most aggressive and fast dividing grade for breast cancers.

How does one be OK with saying yes to radiation therapy? How do you accept it and just do it and not look back or over think the 'what ifs'? How do you not worry? How do you have faith that it is the right decision? How do you accept that whatever will be, will be? And be OK with the choice. Do you take the risk of NOT doing it? There's a chance there are micro cancer cells left over that need to be killed off still. Even after chemo, they are still pushing radiation on almost every women I know who has had lymph node involvement. Because we are young. Because we have the high grade tumours. Because, as one of my doctors said to me… "Unfortunately, you have so much life ahead of you. There is a greater risk if you do not have radiation."  And yet there is risk in doing it.

Yes. Unfortunately I have so much life. (Major eye roll.)

Unfortunately yes… being young and having a grade 3, highly estrogen receptive positive cancer the risk of it coming back is great. Almost every young woman I have met who is dealing with breast cancer has the high grade (3/3), estrogen positive (8/8) (and now too frequently HER2 positive) breast tumours.

So they throw it all at us. The cookie cutter treatments. The chemo protocol drugs… Doxorubicin, Cyclophosphamide, Paclitaxel, Docetaxel, Letrozole, Herceptin. The Goserelin "harpoon" ovary suppressive injections. Neupogen to keep our bones making blood. And we do them. Because if we didn't and it returned we would kick ourselves. But then even after all of the precautionary measures… after surgery, toxic chemotherapy, well above the "safe" level of radiation beamed at our chests, hormone therapy and any added lifestyle changes we have made to combat it… cancer can still be present. And if it's not actively there, it can still decide to return later.

And that's where that term Survivor comes up again. Even though we make it through that first crazy emotional roller coaster of that first year… Even though we do all of the treatments and get out on the other side and our oncologists tell us we are cancer-free… we don't "technically" get the shiny gold Survivor medal until we are 5 years out from diagnosis. Or is it from treatment? I don't even know. Either way, if we make it to the 5 year mark we can breath a grateful heavy sigh of relief that the first part is done. Because it's that first 5 years where there is a greater chance of it coming back. And then on to the 10 year mark. If only we can make it to that. And even after that we aren't really told we are out of the woods until 15 years has gone by cancer-free.

Of course we are all different and every cancer story is unique. Not all people get a secondary cancer. Not all develop a recurrence. But because you had it once, the nightmare of it stays with you. Cancer is never over. You're never done with it once you have had that diagnosis.

I know over time it gets better. Other women who are 5+ years out from their treatments have said it does get easier over time and that the first few years are the hardest. Even my oncologist stated that I am not going to really be emotionally over this and feeling 'normal' until 3 - 5 years from now. She also wanted to warn me about the months and years to come. "Lower your expectations." She said. "Whatever you imagine happening. However you picture your life after this, however you picture people being, when the treatments are done and you have recovered and are ready to get back into regular every day 'new normal' life beyond cancer… lower your expectations."

What she was saying I knew was good advice. If you don't have expectations you can't get disappointed. Maybe that's why I have had to entertain the idea that breast cancer may one day kill me and not be overly optimistic...just in case.

But lowering expectations... Easier said then done and I still didn't really want to hear it. Not now when I am already dealing with mood swings, side effects from chemo I thought would be gone by now on top of the post traumatic stress of the whole ordeal. The last thing I want to hear is that things might get even more annoyingly difficult to move beyond this. I already feel like an alien. I already feel like I am alone in many ways. No one really understands. No one actually gets how desolate the island of cancer can be.

The only people who really really get it are other people who have had or have cancer. It's comforting to have cancer friends, chemo buddies, 'breast' friends… people who just KNOW, and you don't have to try to explain anything.

But it is also sad too… this community of cancer illness. It is hard because we all want so badly to have hope and to know it's all going to be ok. To find comfort in each other. Together.

And we are genuinely saddened for each other's story. We feel the other person's pain. We cry for each other's situation, pray and send positive thoughts to them each day. We know the other person's fears and worries. We don't think a concern is ridiculous or a fear is irrational. There is not judgement. There is no comparing. No down-playing of some body's feelings or worries. No brushing off or trying to get them to 'see the positive' in something rather than just listening. No one tries to "One-Up" the other by saying their kind of tumour is worse than someone elses.

I don't know if it's because we have all had to think about and prepare for the possibility of our lives being shortened that it has made us more aware… Or maybe it is that we really do know how precious life is now and appreciate everything all the more. I am not sure what it is exactly other than the obvious fact of having cancer in common. I just know that together, we are different. We're not the same as we once were. We're not the same as someone who hasn't had cancer. Whatever the chapter we are in our own personal unique battle… whether in the phase of numbness, anger, resentment, fear, despair, positivity, faith, courage or hope we cancer peeps have all once 'been there'.

And we just get IT.

I guess that is why sometimes it can be hard for people who have never had a diagnosis like this to feel comfortable around someone with cancer. Not knowing what to say. It can be hard finding out someone close to us has an illness like this. People don't always know how to act. Some pull away and retreat. Some people disappear entirely. Some people imagine it were them and can't handle it. Some people don't want to allow any negative thoughts of illness or death to affect them and their family. Some people see this as a chance to finally get close to the person dealing with the illness. Some people feel bad they weren't the best person they could be and want to step up and offer support. Some people are afraid to show vulnerability. Some people just want to feel helpful. Some people stop calling. Some call all the time. Some people feel obligated and pressured to make an effort. Some people think cancer patients are no fun anymore so they don't bother with them. Some are fully comfortable around the whole issue and want to do anything they can to be there. Some have a loved one who passed away from it and want to volunteer. Some can unconditionally offer love and support while others can be selfish and act like they're the ones with the illness. Some people are weirded out and awkward. Some people ask questions. Some people avoid talking about it. Some people don't want to accidentally insult and others can make the mistake of mentioning someone they knew who died from cancer.

Whatever way they deal with it, however they react or don't react for that matter… I know the feeling of not knowing how to be around it. I once didn't know how to be. Didn't know what to say. Didn't want to say the wrong thing. Felt helpless. Felt like it was best if I didn't say anything at all because that might be better for the person going through it. Because I wasn't comfortable.

How does one interact with a 'sick' person?

Suddenly someone has cancer and there is a divide. Nobody knows how to be around it.

It makes sense that it is this way. Heck, the people WITH cancer don't know how to be about it either. Getting cancer makes someone so highly sensitive and emotional. Our hormones are all outta whack, we're fighting to live, we feel like we're 95 years old, we're bald, have no eyebrows, lost body parts, lost or gained weight, have burns, feel weak and ugly. A grocery store visit can stress us out. Having to travel can cause anxiety. We don't always want to be seen. We get looks from strangers. People stare. We've got chemo brain. We're forgetful. We're slower. We feel shut out. Forgotten. Nervous if there's too much attention drawn on us. Lonely if there's no attention. We worry about looking tired. We cry at the most ridiculous things. Are sensitive to all the ribbons on products in the stores. We don't laugh at something we once thought funny before. We don't fit in.

It's SO SO SO hard to adjust to all of this. Life is different! We're different! And It's not bloody easy.

Us and them. Them and us. There is really no bridge. Which makes things difficult at times. On both sides, I know.

Sometimes not knowing how to be or what to say around the whole cancer 'thing' is OK. Not knowing how to be is sometimes enough. Because it's totally normal. And so hearing from a long-lost friend or even a close friend that they didn't know what to say. This is all enough for us. We appreciate the honesty in people when they offer it up. It makes us feel somewhat apart of the 'normal' human being group and less like the elephant in the room.

Being afraid to cry in public is a new normal. Feeling like you have to stay strong and don't want to break down in front of a friend going through cancer is normal. Not wanting to inadvertently alienate is normal. Not wanting to draw attention: Normal. Feeling out of place: Normal. Things, people and relationships changing because of cancer: Normal.

One of the big things I noticed with getting cancer is that I am more honest and say what I feel (ha, no surprise there thanks to my plan to blog about it all!). But seriously, I have talked to other cancer friends and have agreed that we do say what we feel more often than before cancer. We say what is on our minds. We call people on things. We speak out. When something is promised and we don't get it we demand it. We tell the waitress the food was bad. We ask for something if we need or want it. We listen to ourselves more. We are not as afraid to say things out loud for everyone to hear. There is less holding back.

We didn't ask for this cancer crap. We didn't want to be different. We're still human. We just have a different perspective now and so we get things off our chest (pun not intended) and ask when we actually truly want something.

I never thought I'd say this, but thanks to cancer I am more open and sometimes bluntly upfront which I am grateful for. Cancer has a way of bringing about the raw truth and honesty in the people forced to be fighting against it. It has nothing to do with the 'cancer card' and feeling like we are entitled to share our honest opinion whether it's welcomed or not. It's about living like we mean it and being true to ourselves. With honesty, sincerity, truth and self-respect. Life could be too short for us not to be this way.

There is no defined correct exact way that people should react to finding out someone has cancer… likewise with finding out you yourself have cancer. There isn't a guide to follow when you get this kind of diagnosis. There is no straight road easy to follow handbook that explains how it's all going to be. Nobody taught us how to react to the news. There was no warning that your diagnosis might affect the people around us in a way that might impact our lives. There is no instruction manual on how to now move forward without feeling like we have a sticker on our forehead flashing the word "CANCER". No one showed us how to have courage, fight and continue on each day. But we do it. Because that's what we have to do to keep going. There is no other choice but to be strong.

If it were happening to you, your aunt, a friend or neighbour, they too would muster the courage and develop their own strength and get through it as well. Hunker down and get it done. Close your eyes and fly at it. Dry your sad tears and soldier on. Bawl your flipping eyes out, tell it like it is, seek your truth, scream at nothing, pray for a world without it and get through the best way you know how.

There are good days and there are bad days. Nobody said it would be easy. But we get through and we keep going. Living each day today however we can manage. Always hoping for tomorrow.


  1. oh man I just want to give you a big hug now! will write you an email instead...

  2. Iamyourfriend....

    don't ever forget that.....

    BIG hugs... this stuff is not easy...and I stand by my feelings... YOU are far too young to be dealing with this ...

    Trite, yes. Sincere? YOU BET.

    Warm hugs and lots of love,


  3. I just left the links to three bloggers under your note on my blog... Also sent them a tweet with your blog, too. Read Katie's recent blog.....

    Great place to start...

  4. In many ways you are saying, "I don't know how to DO this...". And that's ok. Either way, you continue to walk into it with the guts of a lioness as well as put yourself out there by fearlessly speaking from the heart. And that is more than enough.

  5. Hi Ashley,

    My name is Katie and I was diagnosed at 26 years old. I finished treatment in September and so much of what you say rings true with me.

    I always say I know have cancer of the mind, they may have removed it from my body, but it will always be in my mind.

    I saw that AnneMarie posted a link to my blog (which was so sweet of her) but I am also always up to chat/vent/bitch/discuss breast cancer.

    Are you on Twitter? I have found it super supportive. I'm @lovlykatielumps. Otherwise we can connect on our blogs.

    Know that you are not alone and what you are feeling is so unnormal for a 28 year old but so normal for a 28yr old breast cancer survivor.

    Thinking of you, xoxox

    1. Hi Katie, thanks so much for your message. I loved your post where you spoke of Brené Brown. I am not on twitter but will be able to stay in touch via our blogs. Thanks again for reaching out, I look forward to reading your story. xxoo

  6. Ashley,
    Hello my sister from another mister! I got a Tweet from AnneMarie and whenever @chemobrainfog tells me about another one of us - way too young to get this disease - I'm happy to say hello, but only sorry that you have joined our unfortunate "club". Katie and AnneMarie are two of my favourite peeps, so I'm glad you have now connected with both of them.
    I was 30 when I was diagnosed with a grade 3 tumour and can relate to the grind of treatment you are slogging through. It is not easy. But, we are here - to support you. I'm on Twitter at @afreshchapter. If you ever want to chat/vent/cry, let me know.
    Sending you big ass Canadian hugs and hoping each day gets a little easier (although, let's be honest, there are some dear God why is this happening to me days that I know you still have to slog through). The bright side (if there is one) is that it DOES get easier. Slowly and surely.
    I'm happy to know you and happy to connect any time.

    1. Hi Terri, thanks for reaching out! It's so good to connect with other young ladies like you and Katie. And you're Canadian too! Bonus! hehe... Im not on twitter but will check out your blog and be in touch that way. I look froward to reading about your experience. Talk soon. xxoo