Tuesday, April 13, 2010

I'm not ok - I've been faking it.

Wow, three blog posts in one week!!! I guess I have a lot to say or maybe I have been very contemplative lately.

I read a blog of fellow cancer survivor today. We met online and although we have never met in person, I consider him a friend. Reading his blog was emotional for me. He wrote so many things that I have felt, it was like he was tapped into my feelings. It is filled with emotion and thoughts around his cancer, his recent relapse, treatment and what if any future he has. It reminded me of my past few posts, especially about hope being scary.

I get so much support from my online friends that I have met through Planet Cancer, Facebook and Twitter. We may have not met in person, but I feel as the majority “get it” and therefore inspire me all the time. Reflecting on my friend’s blog and some comments made recently by the people in my life, I wonder if I have been completely honest with people about where I am at physically and emotionally.

Writing this blog is a great release for me and often is a complete stream of consciousness. As you know I have worked very hard for the cancer to not control my life and I am committed to making every moment count. I wonder if by trying to be positive I am giving off the wrong signals to my friends and family. I want the short time that I am able to go with my friends to be filled with joy; I find it hard to really talk about how I am feeling. After a few comments from friends about how good I am looking, and that I must be feeling great, it dawned on me that in not wanting to fill our time together with complaints about how I feel, I have not shared the truth about what is going on with me. Am I doing a disservice to them and/or myself? I think some people have the impression that I am actually getting better since I do not complain about my physical health. It is now obvious to me that my sunny/fun/smiley attitude is giving people the opposite message I should be. Sometimes when people ask me how I am doing, I respond with “I’m crappy” They often say you can’t tell by looking at me. My response then is “I fake it well”.

I was getting frustrated with some of the comments people were making about how good things are going, how I have lots of energy and that I seem really happy. For I while, I felt like screaming “are you really looking at me”. Then it dawned on me that my coping mechanism s to get through every day is giving them false indicators and because I don’t want the time we spend together to be sad, I don’t talk about the reality of how I am really doing.

I am a very functioning person, I always have been and I keep a lot close to my chest, not wanting to impose what I am feeling to others. So I have been faking it and obviously doing a banner job at it. In order to get the kind of support that I need, I am going to talk to some of my closet friends and let them know what has really been going on.

Someone made the comment the other day that I am sure taking a long time to die and asked me if I was getting better. He meant it to be funny, but I wonder if there wasn’t some element of truth in it. I have lived twice as long as we thought and on the outside I don’t look as sick as I did while undergoing treatment. But looks can be deceiving.

So here I am going to let it all hang out.
Most days I feel like crap. I am always super exhausted. I don’t get much quality rest. Even when I nap it is restless. I rarely stay asleep for more than two hours of a time. I have horrible night sweats and hot flashes throughout the day. It seems I am either cold or hot – no in between. I have horrible headaches every day. I almost always feel short of breath. I cough when I laugh (which sounds funny – it really is not funny at all) and it is a painful cough. It makes be not want to laugh. I don’t use my cane around the house because it is a pain, but I can’t go out to the store without it. The little bit of walking up and down the aisles at the grocery store wear me out. While my tailbone is getting better, I am still on a lot of pain. I only have one chair and pillow where sitting for any amount of time is comfortable. I use a rubber cushion to help be sit in the car or on hard seats, but this is only comfortable to 20 minutes max. Walking, standing for longer than a couple of minutes and bending over are painful still. It is not the sharp pain from before, but an ache that won’t go away.

The tingling in my left arm and leg has increased and I seem to have it all the time and it not just a numbness, but a painful tingle that radiates from my fingers up my arm and my toes up to my hip. I have been having a lot more joint pain and between the shortness of breath and the painful joints, walking up my parent’s stairs is very painful, yet I find myself doing it several times a day – a lot more then I should. My memory is awful. I sometimes can’t remember was I was doing half an hour ago. Forget knowing what movie I watched the night before. I struggle to find the right words and if it is not written down, it does not happen. Most of this has been happening for a long time, and I have learned to function the best as I can with it, so I do not bring it up.

Above I talked about the physical stuff, but did not even touch on the stuff I am dealing with mentally and emotionally. Moving in with my parents was hands down one of the hardest things I have ever down. It has been a huge adjustment losing my independence, giving up my house and getting it ready to sell. I miss driving, I miss sitting alone in my condo and reveling in the quiet and doing whatever I like whenever I want. I miss being able to go out at the last minute if I feel like it whether it be a movie or starbucks. Everything has to be pre arranged and I have to depend on someone to get me there. Going through my possessions and sorting them to be given to friends, charity, garage sale and what I am not ready to get rid of has been emotionally taxing and very painful.

Then of course there is the emotional toll the disease is taking on me. My health is declining every day. I see it even if most people don’t. I have been facing my mortality for a long time and in many ways have an acceptance of it, but I still grieve everyday for what I have lost and how much I hurt. I am depressed and between feeling like crap and feeling down there are many days I want to stay in bed. Quite frankly, I am sick of being in pain and not being able to live my life the way I want. I am making the best of it, but that does not mean it is not hard and it does not hurt.

I don’t think most people really get what I am going through and I guess it is my fault. When asked how I am doing, I tell people that I am hanging in because I am not sure they really want to know the truth. So I have not given my friends and family an opportunity to know what is going on and how to support me.

I am going to try to much better about sharing what is truly going on, but I hope my friends and family will be able to realize that I am really hurting, physically, emotionally, mentally and spiritually.


mama2duke&beck said...

Oh wow. I am so glad you were honest and 'let it all hang out'. You don't need to hold it in for us ... we need to hold it together for you!
I cannot imagine the range of emotions you are faced with every minute ... but please know that we are all here for you; to listen, to yell at, to laugh/cough with, and to just be a presence. I know many, many people support you and while I'm sure that feels good, sometimes you just need to barf it all out and have us understand and clean up the mess. :)
Cancer sucks. But, even in your weakened state, you are still an inspiration.
xox Lisa Boylan

Joan said...

Hey, Allison - Good for you....the rest of us whine over much less stuff....you have our permission to do so, too ! Not that you have to ask OUR permission - but I am so glad you finally gave YOURSELF permission !! I think that by doing so, you gave yourself more control...faking it can be exhausting, and saying what's REALLY on your mind can be so cleansing...we are your friends, and we can take as much as you need to dish out. You don't need to 'fake it' with us....we still see you as a strong, caring, spiritual person who we are proud to include in our 'family' of friends. Big hugs - Joan

Kris said...

Way to put it out there Alli! I think in reality you have been open and honest but have also been faking it, something I think lots of people with chronic or terminal diseases do. While I realize that I don't fully know your situation, I hear you when it comes to how people perceive us compared how we are really feeling and dealing. Can't tell you how I too have gotten tired of hearing people tell me, "Well, you look fabulous and no one would ever know you have cancer." Yeah, really? Well, you should see me first thing in the morning and in the middle of the night, or how about in the shower some mornings when I let the feelings, fears and tears flow?!

Your openness and ability to share your introspection have been a blessing to so many of us who have met you and read your blogs or talk with you. At the same time, you need to be allowed to also share the dark places and thoughts as well as the realities of what living with, and dying from, cancer are like. Perhaps one reason you've been given this extended time (in addition to your own amazing will to live) is so that others may learn from your experiences and be helped along their own paths.

I wish I could make this easier for you in some tangible way. Know that I'm out here praying and cheering for you every step of this journey.
More hugs,

Trish said...

as I've long said---people want you to be better, so any little opening to think you're "healed" and they are in. I stopped telling some people some of the tougher things---because they then think I'm dying next week. You can't win that "game". When I was Dx with secondary leukemia I chose NOT to tell anyone other than spouse, clergy and less than a handful of friends. It was too much to hear them all freak out "Omigawd, what next?! Are you going to die of this?!?". Yeah, that was my thought too, but thanks for sharing and being so helpful!

Do what you need to do for you. Period. If that means "faking it", then fake it. If it means telling people the truth about how you feel, tell them so they'll get off your back. Hard to drag people around like that---all it will do is tire you out faster.

occasionally I tell people the truth. usually it is a clerk who monotonally asks "how are we doing today?!", to which I explain "I'm a cancer and chemo patient, I barfed up breakfast, can't feel my left foot and my joints all f**king ache, thanks for asking!". Works better on those who aren't emotionally involved with you outside of commissions. ;-)

btw, your neuopathy is normal, well, "normal" for patients who have had chemo.

Blair said...

Allison...who you are for me is one courageous lady. While you do not have a choice in what is going on inside your body or even how you feel at times, you do have a choice in what you share with others. I honor you in your anger, your sadness, your hope, your lack of hope, your high moments, your low moments. No one can possibly understand what you are going through. It is your journey. Please let me know how I can support you. Love, Blair

Sandy said...

It broke my heart to read your post. Everything you said I heard from my husband when his health was declining. The sad part is that he only told me those things and never ever said anything to anyone else in his family or to his friends. I applaud your courage to say exactly how you feel and I pray that every day there is something to bring a smile to your face and make you happy to be alive one more day.