And so, the Psyche Struggles

It's been a long time since I've made an entry in here.  I have realized recently that cancer is about more than having a disease.  It has been about a year and a half since my diagnosis.  I can't believe that much time has gone by already. I can't believe it's been that long since cancer has essentially taken over the way I live my life.  Not necessarily in a daily way, but more in a futuristic way.  It seems that what it comes to planning future events, the first thing to come to mind is not excitement, but instead, how will that event effect my health.  I try and try to plan a trip to MN, and keep coming back to that "I can't do that" part of the play.  Instead, my mind becomes stuck in a "what if I need a doctor, how will this stress effect my health, what if I'm ill the day we are supposed to leave," never-ending loop.  It's almost like being a teenager again, in the sense that before I can plan, instead of checking with my parents, I must 'consult' with my cancer first. And there are actually times when my oncologist tells me that "this may not be in your best interest right now," like, for example, when my brother passed away. I was told it wouldn't be wise to postpone my next chemo.  In retrospect, I should have looked into getting chemo in Minneapolis, but then again, the after-chemo side effects would likely lead me to postpone my return flight until I was able travel without too much discomfort.

Healthy people make plans without stopping for an instant to think, what if I get sick, what if I need to be hospitalized? I know there are doctors in my home state, and excellent cancer facilities.  And I know that if I need to be hospitalized, does it really matter if it's in Tucson, AZ or Minneapolis, MN.  But the disease has somehow managed to erase the logic from my mind and replace it with fear and uncertainties.  If a healthy person had these thoughts, we might consider them hypochondriacs, or neurotics.  We may even (unkindly) tell them to stop being ridiculous and get on with their lives.  Ironically, when you have cancer, you are not allowed the luxury of a simple fix to this solution.  At least not for me.  There are some people with cancer who can throw all caution to the wind and take their chances.  That just doesn't seem to be me.

New Normal....Huh?

"What's it like living with cancer" you may ask.  Or should I say want to ask.  Most people just ask how I am feeling, or say, gee, you look great.  No one has ever asked me what it's like living with it.  I imagine they think it's an inappropriate question, but really, it's not.   My dad always said "If you don't know something, ask."  I think he was right.  People can choose not to answer, but no one should be offended by an honest question.  How else do we learn?

One of the phrases a cancer patient (I refuse to say victim) learns fast is "you will adjust to your new normal."  I reject that statement.  You do learn to live with it, but you never learn to adjust to it.  Why?  Because there is nothing normal about this new way of life.  It's difficult to make plans for future events, because I never know what may happen between now and said future event.  If I buy airline tickets now, I buy travel insurance in the event I have to cancel.  I get nervous being far away from my doctor.  She knows me, she know my medical history, we have bonded.  She has become the friend I never wanted to have, but I am lucky to have her.  If people say they are flying out to visit, my first thought is always "what if I don't feel well then?  I don't want to ruin anyone's vacation."  That's my new normal response.  My normal response would have been "oh goody, I just can't wait to see you.  We'll do this, this, and this, eat here and there, maybe play some golf, etc."

Every ache and pain is a worry....what is that, more cancer?  Things I normally wouldn't have paid one bit of attention to now set off alarm bells.  My doctor has always said "don't hesitate to call me if you have concerns."  Well, no, I don't think she'd really want that....there are days I'd call her six times!

Then there are insurance issues.  The first thing I looked into when I was diagnosed was coverage for 'mental health issues.'  I wanted counseling, because if a cancer diagnosis isn't a good reason to seek counseling, I don't know what would be.  I have a good policy, so I didn't expect it to be a problem.  Wrong again!  I discovered that mental health issues aren't covered.  Huh? Really?  No coverage for counseling????  Nope!  I also found out that this is not unusual in most policies.  So, I conclude that many insurance companies obviously don't consider one's mental health an important piece of one's overall health.  See how wrong they can be?  Left out in the cold again.  Fortunately, I found a fantastic group of women online.  This is a group only for women with an ovarian cancer diagnosis.  The downside is, we are from all over the world, so we cannot meet face-to-face.  The upside is, the door is always open, 24/7, and we all have had the same thoughts, felt afraid at times, shared each others victories and defeats in a way that those lucky enough to not have cancer could never understand.  This is one scenario in which the old adage "you don't know if you haven't walked in my shoes" totally applies.

Every year that we age brings with it a little more loss of our naivety.  This is universal; it happens to all of us.  As we are celebrating yet another birthday, a bit more of that naivety is chipped off.  It happens slowly, so we hardly notice it and it really doesn't cause much alarm, still, we are aware of it happening.  A cancer diagnosis doesn't just chip away another piece of that.  It totally rips it all the way off.  It's gone and we are left without that protective shield.  I hate being totally robbed of all of my naivety.

And, I hate waiting for the other shoe to drop.  Another unwanted part of my new normal.

And then there is the way it changes the lives of your loved ones.  No one, and I really mean no one, wants to bring that kind of change into someone's life.  I don't want people to worry about me.  Worrying is useless, accomplishes nothing and doesn't change anything.  It just brings anxiety and discomfort, neither of which I want to inflict on my family and friends. "Regular" life does enough of that on it's own.  I don't want to add to it. So, to my loving family and friends, if you are reading this, please don't worry.  Much more helpful would be prayers, sending good vibes, and/or healing thoughts, to whatever or whomever you call upon during difficult times that would be much, much more appreciated.  I have my loving husband who holds me in his arms when I need it, and through him I feel the warmth of all of you.  What more could I ask for?

These are just a few examples of what it's like to have this new normal.  I'll get used to it?  Realistically, no, I don't think so.

Having said all that, it is NOT all gloom and doom. There is yet another old adage that I hold onto these days, and that is, when life gives you lemons, make lemonade.  And I do.  And yes, even in this new normal, I can and do still laugh, and still find joy in each day. Because life is worth living to it's fullest, even in the difficult times.  It's still mine to live as I choose, and I choose to wrap myself up tight in all the good it can be.  I've learned that when that blanket slips off, it can actually be picked up and put back on again!  It's good to learn that.

No Storm Waves, for Now

Yesterday was my first re-check by my doctor after three months chemo-free.  The technical update is CA125 elevated by 3, no need for concern were the first words I heard.  After my exam, I was given the "everything seems good" and we are still clinically in a 'good place'.  Since I am currently feeling good, with the exception of a few on-going chemo side effects, we will continue on another 3-month no chemo cycle.  What I learned yesterday is that even though the chemo drugs are out of my system, the after effects can remain for quite a while.  She did not seem overly concerned about mine, just instructed me to keep an eye on things and call her if anything changes.  I can do that!  I must say that there is not one part of me that misses those 6 to 7 hour days of infusion.  As wonderful as the chemo nurses are, and as comfortable as they make it for all of us there, it's really not a great way to spend the day.  There has been a positive to those days, however, and that is that I met some wonderful people there.  People who know what it's like to be me, who have and are still going through it.  People with whom I put no disguise on for. That doesn't mean that it's all doom and gloom with them.  Quite the opposite.  We talk about things other than cancer, we tell stories about our lives, and we even laugh. But if I happen to be having a day where I'm feeling scared, or down, or just tired of it all, I don't have to hide that.  My friends just nod their heads in understanding because they've all been there. That comforts me, because there are times when I'm with 'normal' people that I feel like I'm on the outside looking in. And I feel an obligation to appear upbeat and feeling good so as not to worry people. Sometimes, that is exhausting. This disease can do that.

But, enough of that.  For now, the waters are still, and if there was a beach nearby I'd roll up my pants, take off my shoes and enjoy the feel of the gentle sea washing up and over my feet.  But since this is the desert I'll just settle for enjoying the beautiful spring desert blooms, the lovely days and the beautiful sunsets over the mountains.  And I'll thank God for the opportunity to do this.