The Side Effects They Don't Warn You About......

When I was told I had breast cancer, I was sitting in a hotel room expecting to be told I had a strange, benign tumor that would need to be surgically removed.  While I knew breast cancer was a possibility, I didn't truly believe I would hear that.  I was too young, too healthy, and all the other things we associate with healthy.  The words had the same effect as if I had run headlong into a brick wall.  I cried my share of tears that day (and pretty much daily since then). I immediately began researching as much as I could online.  While I do not recommend this as much of what you find on the Internet is negative and makes you feel as if you have been handed a five year death sentence, I will also say it's unavoidable.  It's natural to look for knowledge and to want to understand what you're dealing with.  One of the first things I wanted to know was what to expect during treatment, surgery, etc.  What side effects could I expect, and what should I prepare myself for?

I posted a blog about side effects and what I had experienced so far.  I talk about side effects I am experiencing each week when I update my blog after a treatment.  These are all medical side effects associated with the chemotherapy treatments and medical problems they cause.  Such as neuropathy, chemo brain, dry mouth, etc.   While none of these are pleasant, I was able to prepare myself for them and to know what to watch for.  There was one area nothing I read prepared me for though--how a breast cancer diagnosis affects you emotionally and how it affects your life as you know it as well as those you love.

I've always considered myself a strong, independent person.  I like to do things for myself and know that I made it happen without depending on others.  While that strength has carried me to this point in my treatment and helped me to maintain better than most who go through this (as I am told), it has also been my biggest enemy.  I have a very hard time admitting weakness or the need for help, and I am discovering suffering in silence only leads to no one knowing what I am feeling inside, and therefore, they are unable to help me.  I don't want to whine or be a baby, so I say nothing.  I often find myself in physical pain to the point of silently crying.  I angrily wipe the tears away hoping no one will notice.  I do not know why I have such a need to hide when I am in pain or why I feel I need to hide it.  If I knew why, I would certainly change it.  I suppose it goes back to the desire not wanting to whine or complain.

I am not accustomed to being in pain on a regular basis.  Prior to my diagnosis, I was rarely sick.  Certainly never anything serious.  While I've had my share of surgeries and associated pain, I always moved past it and got on with my life.  I didn't dwell on it.  Being in pain day after day wears on you physically and emotionally.  It's difficult to enjoy anything when you are constantly in pain.  Suffering in silence, weather by choice or not, leaves you feeling alone inside that pain.  The biggest challenge I face is being in pain and trying to maintain a normal lifestyle.  I am still working full time, and I continue to try to do all the things for my children that I've always done.  I do not want my diagnosis to affect their lives anymore than it already has.  But no matter how hard I try to not let it affect them, I know it does.  I have always spent the evenings talking to my children about their day and what's going on in their lives.  While we watch the occasional TV show, we rarely make our time together about TV.  It's typically spent talking and communicating.  Last night, I sat on the couch; and my daughter was laying next to me with her head in my lap.  I was rubbing her head and patting her arm affectionally.  I kept trying to talk to her like we always do, but the pain coursing through my bones was so unbearable I was having difficulty putting sentences together.  I worked hard to hide how I was feeling so I could spend time with her.  I value every minute of every day I spend with my children--I always have.  But since my diagnosis, I think about it even more.  I can't help but want to make the most of whatever time I have with them.  It's an impossible thought not to have when you've been handed a cancer diagnosis.  As I sat there in so much pain I could barely talk, tears began streaming down my face.  I turned my head away so she wouldn't see.  The tears were bubbling up inside me almost uncontrollably.  I became angry.  Now cancer was going to take away time with my daughter?  I wanted to fight it and not let it win, but I couldn't deny how much pain I was in.  How tired my body felt.  After a few moments, I knew I had to go to bed.  I simply couldn't sit there any longer.  I kissed her goodnight at 8 a.m. and headed up the stairs to bed.  I've always kissed my children goodnight and made sure they were safely in their beds before going to bed.  It doesn't matter that my youngest is now almost 16.  I still kiss her goodnight in her bed then head to bed myself.  And here I was going to bed leaving her on the couch.  Such a small thing to some, but it broke my heart as I walked up the steps to my bed.  It was yet another thing cancer was controlling in my life.

Not only does the physical pain affect my life, but the emotional pain is just as debilitating.  Cancer has affected so much of my life as I knew it, and I am angry at what it has taken from me.  I can't just continue to live my life as I used to even though I try.  It's not as simple as that although people say "try to live your life as you did before".  That's great advice, but it's much harder to do.  Getting up at 6 a.m. for work, working 9 hours, rushing off to pick up my daughter then going to a movie until 1 a.m. simply isn't possible.  I don't have the energy or stamina for it.  There are times I can't even go to work, let alone try to do things after work.  When I do go to work, it's all I can do to go home and go to bed as I'm just too tired to do more.  So, maintaining a lifestyle as I had prior to my diagnosis simply isn't possible.  This change alone emotionally affects you.  Suddenly, your life is no longer yours to decide what you want to do. Cancer is making the decision for you.

The emotional effect this has is not something I can easily explain.  The feeling of not being in control of your own life is a truly terrifying feeling.  I often find I go from feeling confident about my prognosis to feeling hopeless in less than five minutes.  We all walk around in our lives with doubts and fears, and a cancer patient is no different.  Our doubts and fears just involve our health prognosis and survival rates.  Yes, I try to push those negative thoughts aside as I am well aware they are not healthy and productive; but at times, they simply get the best of you.  I believe it's normal to be afraid of the unknown; and it's simply impossible to expect a breast cancer patient to not fear the unknown or ever think about it.  The emotional roller coaster is not one we can control even when we try.

When I was first diagnosed, I was unable to sleep or eat.  All I could think about was the high reoccurrence rate the type of cancer I have has.  When I would finally fall asleep, I would have nightmares about dying.  I lost almost 10 lbs in a little over a week.  I asked my doctor for something to calm me down; and he prescribed Adivan.  The Adivan helped me through that initial hump and to accept the diagnosis, and I must admit it helped me.  However, I am not sure time itself wouldn't have provided the same result.  After a while, I no longer felt I needed the medication.  I did not want to spend the rest of my treatment taking anti-anxiety medication.  I wanted to avoid taking any more medication than absolutely necessary.  Upon speaking to my doctor, he advised I could stop taking it if I felt I no longer needed it, which I did.  I do not feel I had more or less emotional "breakdowns" after I stopped taking it.  The concept of the medication was to help me cope with my diagnosis.  Not live my life on it and not learn to cope with it on my own without medication.  Yes, I shed many tears, and I struggle with feeling sad.  But I also smile and forget from time to time I am sick.  As much as possible, I do continue to live my life.  I have had some very emotionally difficult times over the past few weeks, and I've been told by family members I should go back on my anti-anxiety medication.  I do not feel this is the answer.  I feel it's merely treating symptoms and not the problem.  I do not believe medicating a symptom will fix the issue causing the problem, and I truly believe the best "fix" is the face the problem head on and deal with it.  Facing a problem is never without tears, fears, and a bumpy road so why would I medicate myself and avoid the problem?  I believe everyone is different and medication is truly necessary for some.  I personally have made this choice regardless of how difficult it is.  I openly admit I get down and struggle.  Cancer has affected my emotions to a degree I've never experienced before.  My determination to gain control over my emotions is what keeps me going.  I believe allowing myself moments of weakness is the answer.  Provided I move forward from that weak moment, it's healthy.  It's necessary.  It's part of the healing process.

How the physical side effects affect your ability to continue your life as you've previously lived it and how your emotions are affected are BIG side effects that are not listed or talked about.  They are severely overlooked by physicians.  I am in contact with many other breast cancer patients, and we support one another because we truly understand one another.  However, I was not put in contact with these women by my physician or the breast cancer center.  Support groups, counseling, etc was not offered to deal with the emotional side of things.  Yes, there are brochures laying around here and there; but no one TALKS about it.  Of all the appointments we are given after diagnosis, not one helps us cope with the emotional side of things.  Why wouldn't this be an appointment that's made or at least offered via more than a paper laying in the waiting room?  Why is there an assumption that a patient who is already at an emotional low would reach out and make an appointment for themselves for help in this area? Rather than assume they will take care of it themselves, why not assume they need the help and provide it?

Healing the body has to start with healing the mind......