Hello 2012. It's nice to meet you.

                I sit on the precipice of this new year in the quiet comfort of my apartment.  New Years has always been a complex holiday for me.  On the one hand I think it is silly how much stock people put into the new year being a “clean slate” or an opportunity for new resolutions.  After all, if we need to make changes should not personal growth and evaluation be an ongoing process that does not hinge on one particular day?  Also, do the things that dirty our slate, so to speak, not make us who we are?  And if they are so bad that we need to be rid of them, do we honestly believe that in just the simple passing from 11:59 to 12:00 that our personal evils will be wiped away to be forgotten and forgiven?  Of course not, and yet this holiday is charged with the electricity of those hoping for new beginnings and a better year...those hoping to change who they are…who they will be.

                And maybe I find this holiday so confusing, because on the other hand I still manage to get caught up in this seasonal internal reflection despite how I feel about it.  I find myself thinking on my failures of the past year.  I find myself making goals for the year to come, and mostly just hoping, as always, to find myself a little better off than I was the year before.

                Traditionally, by this time I have acknowledged the passing of another year without being published.  Another year of not working toward a degree.  Another year of not being as physically fit as I had hoped.  Another year of not seeing family and friends as much as I would have liked.  Another year of not enough money put into savings…the list could go on.  I look for any improvements I may have made, and focus on goals to make the next year count more.  I expect each year to be better than the last and for me to have made it farther along on my self-imposed life timeline of accomplishments.

                However, this year feels different.  Where in the past I had expectations, this year I feel none.  One thing this past year has taught me is that I do not know what to expect out of life, and if I believe I do I can very easily be made a fool.  Where in the past I acknowledged the passing of another year without meeting goals, this year I simply acknowledge the passing of another year.  Another thing this past year has taught me is that sometimes just the passing of time is a big enough thing to remark on.

                And so maybe this year I did not get published despite sending in a couple of works.  Maybe this year I did not go back to school despite the steps I had taken to start again.  Maybe this year I’m walking away the most out of shape I have ever been.  Maybe this year is ending without as much financial padding as I had hoped.  But also maybe for the first time I am okay with all of that.  Maybe I can acknowledge it has been one hell of a year.  But maybe I can say I am alive and well and here to see another year, and maybe, just maybe, that is enough for now.

Star Light, Star Bright

                I had no intentions of posting this blog.  It is unpolished and simple because at the time I wrote it I barely had the emotional energy left in me to type these words.  But now that I am feeling better I believe perhaps it is right to leave it as it is.  I have had three people tell me they offered my blog to someone they know who was diagnosed with cancer, and that some amount of comfort has been found here.  I am honored to think the telling of this journey may have helped another.  It is for this reason I have decided to post this entry.  It is for those who are battling cancer, those who will and those who are finishing.  It would have helped me in a time of darkness to know I was not the only one…

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Star light, star bright

if I made a wish tonight,

you would not grant me my peace of mind.

For you are just a star in a mass of black,

And I am just a girl wishing you were more;

wishing everything was a little more.

                I was working a few weeks ago when I saw one of my old regular customers sitting in a chair watching me.  He was looking at me curiously and I stole glances trying to decide if I should walk over and say hello.  Our eyes locked and I realized he was trying to figure out how he knew me.  He knew I was familiar, but also strange. 

                When I got home that evening I looked in the mirror and tried to see what he saw.

                “What must I seem?” I asked. 

    “What must I seem?”

                I wished someone had told me I sometimes would not be able to recognize myself.

                The past month has been as close to true hell as can be had on earth for me.  No one tells you what life is like once your treatments are winding down post cancer.  No one ever said, “If you thought chemo or surgery was rough, wait until your emotions kick in.”  No one ever said, “Post traumatic stress can come in all shapes.”  Or at least no one said it until I was too far in to hear it.

                I’ve been wishing on stars for as long as I can remember, but never with as much desperation as this past month.

                I wished there was a definite answer.

                My depression started with a visit to the doctor.  We were discussing my future appointments, and I asked him when my first scan would be scheduled to make sure I am cancer free.  He told me we would not be doing any scans.  Apparently one of those scans is equal to getting 150 chest x-rays at once.  Given my propensity for cancer, should we continue to do scans, he would be guaranteeing me cancer from the machines alone.  We would do blood work every visit which may alert us if there is a problem, but ultimately I was instructed to “listen to my body.” 

                I wished I could trust my body.

I do not know how I am supposed to listen to my body when I no longer know my body after chemo.  I also do not know how I am supposed to listen to my body, when everyone said how strange it was that I could feel my cancer the first time.  The very fact that I could feel pain and swelling from the tumor is what made every doctor I saw assume it was not cancer.  It seemed to me that waiting until I felt something could be the same as waiting until it is too late.

For the first time since April 1^st I crumbled.  I felt so angry.  So sad.  So disconnected from the outside world.

I wished I could feel as happy as everyone thought I was.

I had thoughts that were unwelcome as my mind explored darker places than it ever has before.  When I would see kids playing outside of my apartment I would think, “They don’t even know there are things ahead of them like cancer,” and I would feel genuinely jealous of their ignorance. 

I had nightmares about either Adam or myself dying.  I would wake up crying and I would not be able to stop, because I knew my nightmare would one day be a reality. 

When certain people tried to tell me that Adam and I were not alone in this battle I would feel angry at them, because they would get to go home and not think about cancer if they so chose, but we actually had to live it.  I never would wish anyone to live it, but I was angry at the emptiness of their statement, because I felt so very alone. 

Almost every day someone would tell me something similar to, “My aunt’s best friend is a 17 year survivor,” and they would smile as I stared back at them.  I did not appreciate that this cancer survivor had lived 17 beautiful years.  Instead I thought that if the cancer survivor’s best friend’s nephew knew the exact number of years it had been, then they are clearly still watching each year pass with bated breath.  I did not believe I could hold my breath that long.

When people would tell me how strong or brave I was I would inwardly scoff at their words.  I would think, “If they only knew what I was feeling they wouldn’t say that.  No, they would be ashamed of me.”  And I knew it was true because I was ashamed of myself.

Every time someone said, “You must feel so happy,” I felt like a freak.  At first I strove to rejoin the world I knew pre-cancer, but everything felt different.  The world had continued living while I was sick and I hated the world for leaving me behind.

I struggled with anything I felt was meaningless.  I had trouble listening to people’s accounts of drama or keeping up with small talk, because ultimately I felt most things were trivial and petty compared to the bigger picture of the world.  I wished so many people would hold in their unnecessary words and just let a little more silence fall on the world of those who wanted to think.

I felt unable to cope with violence or negative behavior.  When I left the house I saw anger or hate or ugliness lurking in so many interactions and I disliked those people for making the world feel so unwelcoming.

And so I hid.  I hid from facebook.  I hid from email.  I hid from my blog.  I hid from family and from friends.  I worked while counting the hours until I could just go home and be alone, and when I did go out I practiced my smile in front of the mirror until I had almost convinced myself it was true.

                I wished I never had cancer.  I wished it so much I would cry from the pain of wishing.

                Then one very lucky day I was talking to man whose wife had battled breast cancer years earlier.  He asked me questions and listened to my story.  He wanted me to talk and it felt good to talk, because I felt he genuinely wanted to know any detail I was willing to share.  I could see the remembered pain in his eyes as he thought of his wife and when I finished he said to me, “You look so brave, but I know right now it is the hardest it has been.”

                I was so startled by his knowing that I simply stared at him.  He smiled and patted my shoulder. 

    He said, “All I can tell you is that it is what it is.”

                His wife had gone through the same emotions I was experiencing once her treatments were winding down.  He told me it was a big battle for her, but eventually you just have to realize that wishing will not change what has happened, and he was absolutely right.

                Ultimately, for whatever reason or no reason at all I had cancer.  I may have cancer again.  Nothing I can do is really going to change that.  But I would like to know that whether I am moving on from this world in a year or in eighty years that I didn’t waste any of that time being bitter or wasting my wishes on things that cannot change.  I would like to know that I have found some peace in what has happened.  Some happiness.  Some contentment. 

                This was not an immediate cure to my depression, but it was definitely the first step in the right direction and since that day each of my days have gotten a little better, and each of my thoughts a little brighter.  And if I find myself late at night wishing on the stars, I am no longer wishing that I never had cancer.  

                I am wishing for the strength to move past it. 

A Celebration!

          I wanted to give an update that there is much to celebrate!

I found out that I do not need to have any radiation!  This was a huge weight that has now been lifted off our shoulders.  The radiation specialist explained that with certain types of cancers radiation can help reduce the risk that the cancer will begin to re-grow on the chest wall.  It turns out that with my specific type of cancer radiation would neither help nor hurt my chances of the cancer coming back, so it would be needless treatment for me.  I guess in one way I could have hoped to learn that radiation would reduce my risk of a recurrence, but I am honestly just happy to know it would have no effect and to cut it out altogether.  In one appointment we avoided six additional weeks of treatment, pain, discomfort, fatigue, daily appointments and some very serious internal and external permanent side effects.  When the doctor gave his decision, I literally exclaimed, clapped and almost started crying I was so relieved!

Today is my last day of steroids!  While I have developed an intense love/hate relationship with steroids I am excited to see them go.  I am thankful that they have allowed me to manage this chemotherapy with more ease.  Taking them has offered me some good days over the past three months that I otherwise would not have experienced.  But I will not miss the sleepless nights.  I will not miss the wild food cravings.  I will not miss the frantic steroid energy that cannot be calmed.  I will not miss the swelling.  It takes six months for steroids to work out of your system, but slowly the side effects should start to fade.  My oncologist says the swelling will go down over the next four to six weeks and the other side effects will wan as time passes.

Yesterday was my last chemo treatment!  I’m not sure the knowledge of this has actually hit me yet.  I think I will be able to grasp it more firmly once I come through the side effects of this batch, but I am so very excited to know that next Thursday morning Adam and I will not be driving to the cancer center.  Next Thursday morning I will not be drawing blood.  Next Thursday I will not be hooked up to any poisonous chemicals.  Wow.  All I can say is wow.  It’s been since April 1^st that I could say, “I have no chemotherapy in my known future.”  It feels both of yesterday and years ago. 

It was a sweet and exciting appointment with also a hint of sadness.  Everyone was so happy for us.  The nurses signed a card and brought me cookies.  The patients that traditionally share our Thursday morning appointment remembered that it was my last day and offered their warmest congratulations and well wishes.  I’ve really enjoyed getting to know my chemo nurse, and I have a nurse friend who works for an oncologist in the same building so I will miss seeing them on Thursdays, but I think I could find a better situation in which to share their company.

Really, the hardest part was saying goodbye to another particular patient and only because I could not find the right words and so I left things feeling less than settled.  She is a woman who had breast cancer and now is going through cancer all over again.  Her diagnosis is that she will not beat the cancer and she is taking chemotherapy to buy her some more time.  It was an awkward interaction at best despite the genuine feelings of warmth, care and compassion we have for each other’s situation.  Her wishing me the rest of my life to be cancer free, and me knowing the she will never again have the same experience of walking out of that room with treatments done and hope for a future.  I will not be able to describe this experience well enough here and now.  I think perhaps it touches on too many feelings and thoughts that have not fully processed, so I’m going to leave it at that. 

But in the end, as I signed my chemo nurses “completed chemo” book and walked down the long hallway I felt as if I was graduating.  In a way I was.  I have finished something that has brought me more knowledge and education and truth than any classroom has.

I still need to have my ovaries removed and my port-a-cath removed.  These are two things I should be finding more out about on my next oncologist appointment on the 10th, but I’m hoping to get those completed as soon as possible…and then?  Then we celebrate some more. 

Thank you all so much for everything you have done to help us get this far.  And thank you for celebrating these milestones with us!

Marbles

                I had a dream, if a dream is what it can be called.  It was more of a memory or a feeling of a time both not long past and a lifetime gone.  There was no story other than the glimpses from a time already told, not even a full year in the passing.

                It was autumn.

                I stood in the kitchen of our last apartment, preparing dinner and talking to Adam as he played with Maggie at the island.  It was simple, and loving and autumn.

                I talked on the phone to my brother, and we laughed at our own personal goblins when laughing was still enough to ease the anger.  It was healing, and fun and autumn.

                I smiled at Adam as we stood outside in the cold night air, surrounded by friends and drinks and stories.  It was exciting, and belonging and autumn.

                I battled orcs and drakes with Adam until three in the morning while sitting at the table in our sunroom.  It was playful, and comfortable and autumn.

                I drove down the road with my windows down, not because the air was cool, but because it was slightly too cool.  It was invigorating, and refreshing and autumn.

                I laughed as Adam, Steve and I spilt a case and delved into solving the problems of life, work and the world itself.  It was comforting, and entertaining and autumn.

                There were so many memories.  Brief glimpses of small yet significant time filled with family, friends and life. 

                I had gone to bed feeling sad, although I could not name what was weighing on me.  I felt like I was missing something when nothing seemed to be missing.  A shadow of nostalgia when no memories came to mind.  Maybe it had been the slight chill in last night’s air.  Maybe it was because I had stood outside staring at the moon thinking on the season to come…whatever it was, it awakened an unnamed sadness until I dreamed a dream that would name it.

                At first I thought I missed these specific memories.  Last fall was a beautiful season filled with so many wonderful times.  But then I realized that none of these times were things that could not be done again this year.  No, it is not the events that I missed, as much as I had loved them, it is the feelings they gave me as they occurred.  It is the simple, the loving, the healing, the fun, the exciting, the belonging, the playful…all of them wrapped up in one autumn that I never thought would end. 

                But, no, even that was not quite right.

                Those feelings are not what is missing.  They are still here, but something is different.  And when I really push myself to find what is no longer here, the best way I can describe it is innocence.  An innocence that I did not know I had, until it was already gone.  The events have not changed.  The feelings have not changed.  I have.

                The change is not all for the worse.  I have gained.  I have learned.  I have grown.  But I have also lost.  And even when I am thankful for the things this past year has brought me, there are still those nights where I feel the cool breeze of the upcoming fall and I stop and remember.  There are still those nights where I miss how it used to be so much it is hard to breathe.  There are still those nights where I remember a life that feels both familiar and foreign, and I wish I could go back just one more time, to feel the way I felt before I changed, and the world seemed to change with me.

Jack-in-the-Box

                Sometimes I feel like I am six again.

                I remember the jack-in-the-box.  It was fairly beaten up and abused, but the paint that remained suggested some flowing pattern of reds, blues and yellows.  Swirls and dots.  Maybe birds and flowers.  A happy box with a little crank and a sweet tune.      

“All around the mulberry bush…”

I would smile.  I would giggle.

“the monkey chased the weasel.”

I would happily sway to the calm rhythm of the lullaby.

“The monkey thought ‘twas all in fun.”

Everything would be fun.  Everything would be okay.  Everything would be alright.

“Pop! goes the weasel!”

                And in that moment when the clown would come shooting out of the latched hid, all that contentment and all that peace and all of that happiness would be brought to a quick and shuddering halt.  I would be jarred out of the sleepy and twinkling tune to find the clown’s abrasive smile bobbing up and down as my heart thudded and my palms sweat…How could that monkey forget about a popping weasel?

                Sometimes I feel like cancer is that jack-in-the-box.

                I find myself forgetting sometimes that I have cancer.  When you first get diagnosed your whole world becomes centered on the disease.  It is all you can think about.  It is all you can plan for.  You crave normalcy, but your mind will not let it happen.  My husband said it perfectly about a week after the diagnosis,

“When everyone is talking to me about it, I want them to change the subject.  But as soon as they do, I can’t figure out how they could possibly talk about anything else.”

Maybe it is the fact that we have been dealing with this for five full months now, and cancer has just become a part of accepted life.  Perhaps it is the fact that I am so preoccupied lately with over-due projects or preparing to fully re-enter the work force next month.  It could be that I have tried to put myself out in the world more and in the company of those I love.  Maybe it is because I have finally stopped fighting the side effects of the chemo and I just flow with it now…but sometimes I can forget.

Sometimes I feel like it is good to forget.

                We are such happy monkeys as we chase our weasels around the mulberry bush.  We get caught up in the fun and we allow ourselves to be lulled into the security of the sweet tunes of a life we live, but only in pieces. 

I do not pretend to know if this is good or bad.  It is easier to forget for a time.  Life is not cancer, after all.  Life is why you fight cancer.  But then you forget and things seem to slip.  You do not do everything as you should.  You forget to sit down.  You forget to take it a little slower.  You forget the things you should not be doing.  You forget to stand up.  You forget to move a little quicker.  You forget the things you should be doing.

                Sometimes I feel like it is good to remember.

                But I can only hope that there is enough balance in between the forgetting and the remembering, because I am always reminded in the end.  The lyrics have changed, but the tune is still the same.

“All around the reality bush…”

I am sitting in a room playing a game with friends and feeling so happy and content.

“The girl chased the fantasy.”

Adam and I are curled up on the couch together talking of life and love and feeling safe.

“The girl thought all could be normal”

I am running errands.  I am working.  I am laughing.  I am living.

“Pop! goes the cancer.”

                And in that moment there is fierce chest pain.  There is a nose bleed.  There is a weakened knee.  There is a phone call from a doctor.  There is exhaustion.  There is a concerned question.  There is a person staring at me.  There is a person judging me.  There is a scar.  There is a sudden sadness.  There is a sudden anger.  There is a sudden desire to fight.  There is a confused mind.  There is dizziness.  There is a hot flash.  There is any one of the thousand little things that say, “Hey.  You have cancer,” and once again I am that little girl whose heart was thudding and palms were sweating.

                But in those moments Adam and I look at each other and we say, “Finding the new normal.”  And when Adam is not by my side I chant it in my head, “Finding the new normal.  Finding the new normal.  Finding the new normal.”  And I remember, and I forget.  And I remember, and I forget.

                Sometimes I feel like life is never knowing if one is better than the other and hoping for both.

A Lesson in Tact and Cancer Support Guidance

This post is a blog of do nots.  It may sound like a bit of a rant, but I also think you might find it to be entertaining.  Read this posting with two very important things in mind.  First, it was not you.  J  Do not assume it was you and if you think there is some crazy chance it was?  It was not.  Second, these interactions are literally the exception.  While I may have one of these encounters they are in the midst of ninety nine other interactions that are absolutely beautiful and filled with love, encouragement and support.  I just feel that they, as well as the good, hold their own place in this journey of cancer, and so I’m including them here to vent, to share a more whole picture and to laugh…because it certainly deserves a good laugh…Enjoy!

1.)  The Miss Port-a-Cath Pageant

              I was recently approached by another woman who was newly diagnosed with breast cancer.  She had her port-a-cath put in about a week or two previous and asked if she could see mine.  I said sure and pulled the collar of my shirt aside to show her.  She looked at it and said, “Mine doesn’t look that stretched and gross,” with a look of mild disgust on her face…First of all, my port-a-cath does not look gross, and even if it did, it is saving my life which makes it pretty freaking beautiful so maybe you need to reconsider your perspective on what is gross.  Second of all, my port-a-cath is more visible, because of my thin frame as opposed to others who may have a little more cushion for the device.  That is common sense.  Third of all, I’m sorry, but yours had better be freaking diamond studded or something before you think you have any place to tell another person that your port-a-cath is more attractive than theirs, and I seriously doubt it is.  Fourth of all, just don’t be rude.

2.)  The Divine Secrets of the Ta Ta Sisterhood?  It's A Club You've Gotta Know The People To Get In

               A couple days ago I got cornered talking to a woman I hardly know, and who hardly knows me when she looked at my chest and asked, “So when are you getting your new boobs put in?”  This sadly was not the first time a stranger has asked me about my boobs, or lack thereof.  Anyone reading my blog can assume I am fairly open about my cancer and my treatments, but there are a couple things to remember if you wish to be tactful in your questions.

                A.)  It is easier for me to talk about personal things over a blog, because there is a clear disconnect with internet communication.  It is a tool that allows me to let some people who I do not intimately know into my world, and have them get some answers to their questions without feeling awkward.  Outside of my blog, I am as comfortable discussing my boobs with strangers as you can probably assume I am.  Perhaps ask yourself, "Have I been stopped recently by a stranger and asked about my boobs?"  If not, then you may want to resist doing it to other people.  Now obviously, if I know you, if you are someone that say has actually spent time with me as a real person and you are curious about that process and my decision, then I am a lot more at ease talking about it so do not fear you have ever asked too much.  As a matter of fact, most things I enjoy talking about as long as it is an open, un-judging discussion with people with whom I feel safe.  However, if say you only know me, because someone pointed me out to you as the girl with cancer or because I have served you coffee before, or you do not even know my name please respect some boundaries and maybe show more interest in how my health is as opposed to whether or not I have boobs.

                B.)  People should stop assuming I am getting reconstruction and stop being shocked when I tell them I may not.  Reconstruction is not as easy as say getting a cavity filled in a tooth.  A cavity is much easier to fix and it is needed for your physical health.  That would be an easy decision in my opinion, but people seem to think breast reconstruction falls along the same lines and this is not true.  It is a major decision which involves a lot of emotional, psychological, physical, and financial consideration.  Most of the time, I lean toward not doing reconstruction given my particular cancer, mind, body, relationship, beliefs, perception…the list could go on and I could also change my mind tomorrow.  Maybe most women seem to have some sort of reconstruction done, but that does not mean it is what all women should do and it certainly does not mean it is what I am going to do.  I see both choices to be very valid choices, and if you do not…well, not to be harsh, I do not really care.  That is why you have your own boobs to make decisions about, so you do not have to judge mine.

3.)  The Song Should Have Went "You Say Hello, You Say Hello, You Say Hello, You say Hello, You Say Hello, I Say Goodbye."

                I get phone calls and texts from people wanting to check in on me and that is a really good thing.  I have so many loving and supportive people in my life and I feel so blessed by the relationships I have.  That is not a do not.  What is a do not is taking those phone calls and texts to some weird possessive level.  If you have tried to contact me and I have not returned your contact within a couple hours it really is not acceptable to start blowing up my phone demanding to know if I am okay or what I am doing or if I am somehow mad at you.  I really do not understand this response and it stresses me out like crazy, because I certainly do not want you to feel in any way slighted, but I also do not understand this reaction at all and you have switched over to annoying me.  Why take something so sweet and simple as a check-in hello (that you know I always return) and turn it into something stressful on both parties? 

                Let us really consider for a minute the three reasons you believe have kept me from responding:

                A.)  I’m not okay….

                                I understand you being worried, because I have cancer and would like to know I’m handling it well, but my first reaction to this is to remind you that cancer does not make people disappear.  Just because I did not respond to you within a couple hours does in no way mean I have suddenly keeled over without warning.  Now, let us even suppose it could.  Would continuing to text and call repeatedly when I am obviously not okay enough to respond help you solve this riddle?  Of course not.  If you are worried I am too sick to answer my phone why would you keep trying to reach me through my phone?  That is just silly and you are letting your imagination get away with you.  Now I will give you some credit and acknowledge that there is some small chance that something has happened and I am not okay.  If you are close enough in my life that you call and text regularly, do you not think you would find out about it?  Maybe you would not know right at that second, because clearly I cannot use my phone to tell you, but certainly you would find out as soon as someone was able to tell you.  Maybe you should assume the opposite and know that I am okay unless you have been told I am not.  And if I am not okay?  You will find out when it is time to know and not because you sent ten texts or messages, but because I would respond to the first one as I always have and always will…when it is time.  Maybe I am not okay and I just do not feel like talking about it right then?  I do have that right, I believe, especially when I have always been someone who will talk about it when I’m ready.  Basically I am saying…chill out.  Stop panicking.  If I was okay before, I am not now when you start blowing up my phone freaking out simply because I did not immediately answer you.

                B.)  What could I possibly be doing?....

                                This one is the worst in my opinion.  It is very insulting to me that some people think because I have cancer I literally have nothing going on in my life other than sitting and waiting for them to call or text.  I do in fact still have a life and I have the right to be busy.  It should not be so completely shocking to you that I could possibly not be able to answer my phone at every given moment of every given day.  And let us say that I am not out running errands or hanging out with someone or working or writing or talking to someone else or cooking or cleaning or showering or playing a game…let us say that I have literally just curled up on the couch and turned on a movie.  Well I have the right to not answer then either.  There is nothing wrong with that.  It does not mean anything about you, my feelings for you or question our relationship…No.  It means I wanted to watch a movie and will call you when it is over.  It really is that simple.

                C.)  I’m mad at you….

                                This one I saved for last, because it is the craziest to me.  I can understand if you call or text and I do not respond for a few days.  Absolutely.  Ask me what is going on, because that is not like me.  However, after only a couple hours?  Really?  It is enough to make me wonder if you have done something I should be mad about and I just do not know it yet. 

                                Another reason I do not understand this one is because anyone who knows me knows it is incredibly hard to make me mad.  As a matter of fact this was a topic that came up the last time I played a game of True Colors with some friends.  I was voted the least confrontational, because stuff just does not bother me that way.  If something happens I assume there was a reason.  I follow a very simple rule when looking at people who are in my life:

If a friend does something that bothers you, consider for a moment if this is normal behavior for them or not normal behavior for them.  If it is normal (which it rarely is) then instead of judging them for doing it and being who they are, question yourself for not being a strong enough person to just acknowledge differences you cannot accept and walk away.  If it not normal, then instead of being mad, assume there has been some mistake or trouble that can be fixed, because it is clearly not them and not intended.  There is no need to create stress in friendships beyond that.

                The last reason this reaction baffles me is that another thing most people know about me is if something happens that breaks through my friendship philosophy and I really am mad…well you already know about it.  Because when I get mad, I really get mad, and it is not the kind of mad where I just do not talk to you for a few days.  If I am ignoring you, you know exactly why, exactly what I have to say about it and exactly what needs to be done to fix it.  Of course these are crazy rare occasions, but yes they happen and no they are not quiet moments spent avoiding your text.  If I am mad then I feel you need to know why or the whole thing is wasted and nothing can be fixed.  What is the point in that?  Basically what I am saying is if you have to ask me if I am mad then I am not mad, and you should probably already know that if you text and call me regularly.

4.)  Your Opinion Has More Weight When It Is Not About Mine

               You all already know that I am on steroids, and the steroids make me very hungry.  A natural response to being hungry is to eat more food, which I have been.  A common side effect of eating more food is gaining weight, which I have been, barely.

                Now this can be a sensitive subject, because most people are uncomfortable with the idea of gaining weight and knowing there is very little they can do about it until they are done with treatments and off of steroids.  No one likes trying on their clothes and having them fit a little snugger.  No one likes looking in the mirror and seeing a slightly puffier face, but it is also just part of what I am going through, and it is not enough of a concern for me to bother starving myself when my body is so adamantly demanding food.  So my normal reaction is to make jokes and to remind the people who are eating with me as I reach for my third helping that it is just the steroids and I should be done shortly.  Most people smile and tell me to keep eating and remind me my body needs it and say any of the hundred perfect things people would say in that situation.  I really appreciate that and it warms my heart to have such wonderful eating companions.  However there are others who think they need to take another approach.  Please do not be one of the people who say things like:

“Are you sure you want to eat that?” as I am fixing a mid afternoon snack between lunch and dinner.

“How much weight have you gained?” as I describe my delicious meal to someone.

“You’re face looks like it has gained weight,” as I munch on carrot sticks.

“You’ll be able to start working out again eventually,” when I simply say hello.

“Didn’t you already eat a big dinner?” as I ponder the temptations of frozen yogurt.

                I guess my biggest question is what are you possibly hoping to gain, other than making me feel bad and self conscious by saying these things to me?  Do not be rude.  Do not judge me.  Do not take a girl who is already aware of the side effects of her steroids, and is battling with that knowledge as she makes every single meal choice and point out to her the very things that concern her the most.  Steroids make me so hungry that the physical act of eating has become one of my biggest excitements of my every day.  Do not take that away by trying to make me feel food guilt.

                Keeping in mind that I have nothing to justify to you, I still will point out some very simple things.  In the first six weeks of chemo, I have actually only gained three pounds so far which is very good.  The “weight gain” you see is actually uncomfortable swelling and bloating from the steroids, so thank you ever so much for pointing it out to me and making me feel fat at the same time.  Shame on you.  If you think I look heavier, just smile, tell me I look good even if it is a lie and hand me a damn piece of pie, you fool.

5.)  A New Take On Personal Customer Interactions

              My final one is from the time period when I was first diagnosed, but it is a funny one so I wanted to share it.  When I first got diagnosed with cancer there was a whirlwind of doctors and nurses and aides every single day that I was meeting for the very first time.  I was amazed at how many people in the medical community happen to be customers of my store.  So many people recognized me as the girl who serves them coffee and would comment on my café and customer service.  When I told my boss this she asked, “How do you feel about it?  Is it awkward?”  I said, “Well it depends.  Sometimes it happens while I’m in the waiting room and it is really awesome and I like it.  Other times it happens while I’m sitting in the exam room and it’s awkward, because...well…I’m naked.”  I know medical people are just naturally more comfortable around naked people, but I want to share a thought on patient comfort.  If you see a girl who serves your coffee and you want to tell her hello and talk about her shop, let the poor thing get dressed for it first.  She is proud of her work, and glad you come in regularly, but does not want to think about the fact that you are one of her customers watching her get naked and get examined by a doctor.  It is kind of embarrassing. 

  So, there are only five here and I could have gone on a bit more, but I think this entry has already turned into another long one for you to read.  I hope you have enjoyed this list of do nots and maybe found them to be humorous if not helpful.  I also want you to know that to be fair, I have made quite a few mistakes myself in the realm of cancer tactfulness and I have learned a few personal do nots I should not have done to you!  This will be the next post and I hope you will enjoy them as well.  J

Finding the Strength in Never

                One of the most common questions I get as a person with cancer is, “How much longer until you are done?”  It by all appearances is a simple question, but it is probably the hardest question I am asked on a regular basis.  There are two answers to that question, and while I find myself almost always spouting out the timeline for my current treatment I walk away feeling as if only half of the story has been told.  I walk away feeling less than honest with myself and I walk away feeling stressed by the need to keep things so black and white in a world that is no longer direct timelines and quick answers.  I walk away feeling like I have given the easiest of answers simply because I do not want to sound negative, but who am I protecting?  It’s not me, because the true answer is one I’m very much okay with, and it is not you, because I feel you genuinely want to know. 

                For those of you that really are asking me, “When are you done with your current treatment plan?” I will tell you.  I have nine weeks of chemotherapy left.  I have six weeks of radiation after that.  I must get my ovaries removed shortly after.  No, I have not decided about reconstruction, but I am not eligible to consider it until next year, so I still have time to decide if I will be traveling down that road or not…

                But I do not believe that is what everyone is asking…at least not in the wording, “How much longer until you are done?”  Or maybe they are asking a simple question, but they just do not realize it is not that simple for me.  Either way, I’d like to give you all the real answer that plays itself out in my head as I walk away wondering why I gave you my stats when they have very little to do with your question.  It is the real answer to that question that kept me from sharing my pathology report, because I was afraid people would not see the whole picture and feel like the answer to that question is, “Soon.”  They would be wrong and I was not ready to explain.

                The real answer is never.  I will never be done.  For some reason I do not tell you this, because it sounds kind of scary and daunting, but in all honesty it is really an okay place to be.  It is a place I need to be.  It took me a long time to accept this answer, and as soon as I did I was a much happier person for it.

                Finding out you have stage 2 bordering on stage 3 cancer is scary, but it is also very doable.  Almost immediately you are set up on a whirlwind of treatment plans and finding answers to your many questions.  Before you know it your game is set and you know your path and you feel a real sense of being able to beat cancer.  Obviously you have some nagging thoughts and concerns.  This is only normal, but for the most part, or at least in my experience, determination washes over you.  You can do this.  You will win.

                The hardest blow did not come until I found out my genetic testing came back positive.  I found out that cancer is literally built into my DNA.  My body actually lends itself to having cancer, and to a certain extent one must admit that treatments both traditional and alternative while amazing and promising cannot guarantee a winning battle against the very genetic make-up of your body.  Yes, I still knew I could do this.  Yes, I still knew I would win.  But what I no longer could find peace in was that this would be a lasting victory.  I struggled with the knowledge that I could go through so much to beat cancer just to have my DNA start this process over again. 

                I am in no way saying I am definitely going to have cancer again.  But I am also being realistic when looking at the numbers.  When I talk about long term success rates, do you know that those are measured by five years?  You have successfully beaten cancer according to the studies if you did not have a relapse within five years.  However if you get cancer again in six years your percentage does not factor into the studies.  That is not a part of the success rate.  Given that I am 28 years old, I have a lot more of life left in me to only hope to be cancer free for five years.  The fact that I got cancer at such a young age actually means that I have a much longer window in which my DNA can start rapidly producing cells again.

                I am also being realistic that there is a chance of recurrence, because there is actually a high chance of recurrence within the first year and then a slightly lower, but still high chance for recurrence in the three years after being diagnosed.  It is just a part of having cancer.  Cancer can be a stubborn little monster.

                There are many reasons this terrified me.  The first is the knowledge that with each relapse into cancer there are certain drugs you have already maxed out on.  For this current battle against cancer I have gone the absolutely most aggressive route.  But these are medicines your body can only handle so much of before they will kill you.  Chemotherapy is poison and you can only take so much of each type before there is more damage than good.  So this means if I have a relapse, I will not be eligible for what is currently the most aggressive treatment.  My options become a little more limited.  You can only take my type of medicine once.  You can only have a double mastectomy once.  You can only have your ovaries removed once.  And if you will remember from an earlier post you can have these things removed and still run the risk of getting breast and ovarian cancer again.  I fully believe that the medical community is always coming out with new and amazing medical treatments, but they are not such rapid developments that it means a person who relapses will have endless options.  There is no endless pool of treatment discovered yet.  With limited options and less aggressive treatments comes lower success rates, for as much as those are worth.

                I was also scared, because I hated the idea of knowing that cancer would always be lurking over my shoulder.  Every bump, every node, every suspicious feeling or spot I would be questioning, “Is it cancer?”  I could not imagine a life of peace when every ailment sent me flying to the doctors and waiting for life altering news, because I cannot trust my DNA to take care of my body the way it should.  I could not imagine a life of happiness if I was always worried that I would have to go through all of this again.  Most of you know that I had three suspicious biopsies in the six months leading up to my diagnosis.  Two of these were for completely different types of cancers that are not connected to breast cancer at all.  Not many people know this, but I’ve already had to have a suspicious spot on my gums looked at while doing treatments for breast cancer.  Luckily it came back as nothing, but the whole time I was freaking out, because if it had been cancer there is nothing they could do about it until I finished all of my current treatments, and none of my current treatments would even touch a different type of cancer.  Not many people realize that there are different drugs for different types.  The type I am on does wonders for breast cancer, but would not stand a chance against throat cancer for instance.  If I’m already running into suspicious activity before I am even done dealing with this current cancer it made me feel very scared for the future.  Living in fear of what could be was not my idea of living and I was worried there would be no other way.

                It turns out there was another way.  I was determined to try and ignore these fears, and I told myself that this was it.  I had cancer.  I was going to beat cancer.  My life was going to go back to normal and everything would be fine.  If someone asked me, “How much longer until you are done?” I gave my timeline and tried to convince myself I believed it…but at night I would still lie awake in bed and worry.  When I was alone my thoughts would wander back to the what-ifs and the percentages and my age and my DNA and I would feel so scared.  I knew I was afraid of being wrong and having to handle being told again one day that I have cancer.  The war has not ended.  I must rejoin.  I must polish my battered war gear.  I must call on my diminished resources and walk onto the battlefield with still pink battle scars, when all I wanted to do was go back to the way things were before.  I wanted my normal life back.

                One night of many nights Adam and I were discussing my fears when he said the words that I was most afraid of, and yet they inexplicably offered me more comfort than I had felt in a long time.  He said, “I think it is safe to assume you will have cancer again.  This is not a journey that will ever be over.  There is no going back to normal.  There is only finding a new normal.”

                I sat dumbstruck waiting for this news to come crushing down on me.  I waited to feel the fear I had been battling for so long to consume me, but it did not come.  Instead of being terrified of the what-ifs I was relieved to just know.  The answer to everyone’s question including my own was, “Never.”  Simply never.  Cancer is in fact a part of my life and my DNA and age suggests it will always be a risk in my life and a part of my thoughts.

                I talked to my brother and he said the exact same thing to me.  He knew the answer all along as well, and knew it was not something to be afraid of.  He said, “It is knowledge that empowers you.  Now you know.  There is no worrying.  There is no denying.  It is your life and now you just decide what to do with that information.”

                As soon as I accepted the facts that I already knew…well I know it sounds crazy, but I was okay with it, and this is what I want people to know when they ask me how much longer until I am done.  I want to be able to say never without them thinking this is a bad thing.  It is not.  It is just a part of my life and not only am I happy to know it I have found strength in knowing it, because it has forced me to stop waiting on the life I had and start developing the life I will have.

                Do not get me wrong.  It would be foolish of me to say that I am no longer afraid of cancer.  No one wants to have a relapse, but I feel more prepared for a relapse now that I am not denying its likelihood.  It makes me more aware of the steps I need to take to be happy, content, prepared and ready when my body decides it is ready to fight this battle once again.  It has made me delve further into all types of therapies that can be followed.  It has made me think about alternative life choices.  It has made me more aware of my body.  It has made me realize that a second cancer is no more an end of my days as this first one is.  And if there is a third or fourth?  So be it.  I will be ready.  I will be more conscious of the things I need to look for to make sure I am always staying ahead of it.  I am replacing denial with vigilance, and the one suits me much better than the other.

                Accepting my genetic testing has brought more light to my previous strange and obscure health problems of the past.  Adam said it perfectly when he told me, “The thing is that you get sick and when you get sick you really go the whole way.  But you survive.  You always survive.”  And I am here to let you know that he is absolutely right.

                So the next time you find yourself about to ask me how much longer I have until I am done I want you to know the answer to that is never.  I will never be done, because my DNA says I am going to have cancer, but that is not a negative thing because it also means I am never done fighting it either.  I am a survivor and a fighter.  I always have been in every aspect of my life and it is a quality embedded so deeply in me that I can only venture surviving is set right there in my DNA too.  The doctors may not have a way to test for that yet, but if they did they would not just see the CANCER written in my genes…no, they would see CANCER-FIGHTER.  This may never be over, but I will fight and I will survive, and that is why I am no longer afraid.

Simply Put

            This will be a four part post of updates.  I am working on several other detailed posts that will be up soon, but I have gotten some responses that have lead me to believe a general update is very much needed and I absolutely agree!!  Here is it is:

1.)

 I’ve started chemotherapy again.  As a matter of fact today was chemo dose 3 of 12.  Originally I was scheduled to do a drug called Taxotere every three weeks in large doses.  This was changed last minute and I am doing smaller doses of a drug called Taxol every Thursday for twelve weeks.  With the last chemo I had such low drops into chemo madness and then slowly worked my way to feeling normal again.  With this new set up I should be able to maintain a more continuous state of not feeling great, but not have the devastating and obliterating experience of taking large doses at once.  I really couldn’t be happier with this decision, because I was honestly very nervous about re-starting chemo after that last treatment and how much I struggled with it.  This drug is cumulative, so I will get sicker as I go, but so far it has been very manageable!  I’m not experiencing any nausea!  I feel fatigue, some bone pain, headaches, some throat pain and just a general feeling of ickiness, but nothing to a degree that has not been manageable.

                It helps that I have to take steroids on this chemo.  I take the steroids on Wednesday, Thursday and Friday.  Wednesday is this crazy day of wild manic energy where I feel like super woman.  I’ve never been a fan of steroids and I would never recommend people take them unless necessary, because they can do some horrible things for your body, but I must say that Wednesdays I feel fantastic.  Thursdays I take my chemo with a large dose of steroids, and I feel mostly fine.  I still have more energy than you’d think a person who just took chemo should, and I feel happy and content.  Friday begins a battle between the chemo and my last day of steroids.  I have hours of crazy steroid induced activity and hours where I can’t move a foot from the couch without feeling exhausted.  Saturdays and Sundays seem to be the hardest, but that is okay.  I am pretty much out of it those days, but I don’t mind because so far they are the only bad days and they still do not even touch the horrors from the previous chemo.  Once Monday hits I am tired, but I start rebuilding my strength for my next batch of steroids on Wednesday.

                There has not been any crazy chemo brain, just slight fogginess.  There haven’t even been any crazy antics to write about which is good news when you think about it.  I’ll make sure to keep you all posted on how things progress, but you should know I’m actually handling this chemo much better than the last one so far.  So yay!  J

2.)

                I’ve returned to work!!!!!!  My doctor cleared me to work every Wednesday since as mentioned above I am on steroids that pump me full of energy.  I go in and do all of the paperwork for the café for the week and it feels so good to be back.  It honestly feels like coming home.  I have missed everyone there so much and to be a part of that network of coworkers and customers again has really done wonders for my spirits and happiness.  As you all read in my last blog I was craving the normalcy of returning to work, and it was definitely something I needed even if for just one day a week.  It feels good to be productive, helpful and using my business skill sets again.  Thank you to everyone there for all of your support and to the people who gave me encouragement as I tried to figure out a way to return!

3.)

                It is time for me to share my pathology report.  I’ve had my report since the end of June, but I have only shared it with a few people.  My pathology came back completely clear!  After surgery they sent everything they removed in to be tested to see how well I responded to the first chemotherapy.  They could not find any trace of the tumor left!  Not only is this not all that common, but it adds a nice bonus to my percentage success rate!

While the results of my report are very good, I was scared to share them.  I still have a long road ahead of me.  It is best to think of the tumor as a factory sometimes.  The factory may be shut down, but all of the products it produced while operating could still be floating around in the environment.  This fact, combined with the fact that my genetic testing came back positive, means that despite no tumor I must still complete the full treatment plan.  I still have to do the 12 weeks of chemo.  I still have to do the 6 weeks of radiation.  I still have to have my ovaries removed.  I was worried about people being overly excited that I had won such a large battle, when the war is still not over.  However, I have come to the belief of, “The hell with that.  I’m kicking the crap out of this cancer and I want you to celebrate with me.”  I also know that every single one of you have been in this battle with me and I want you to know that we have accomplished something great so far.  It does not mean that future tests will come back negative, so I didn’t want to get people’s (including my own) hopes up too high, but for once I got a freaking test that wasn’t more bad news and I just wanted to say, “Awesome.  Pure and beautiful awesome,” and to share that feeling with all of the people who have been by my side.  Thank you and thank you for sharing in this battle with me.

                There is another reason I have chosen not to share this until now, but it is a much longer topic that I think warrants an entry on its own so I’ll discuss that later…

4.)

                I wanted to thank everyone for their responses to my last blog.  I was really in need for some advice and changes, and I was touched by how many people found themselves’ facing the same fears I was experiencing.  Since that blog I have put a lot of thought into my life and my choices and I have come up with some answers that have offered me immeasurable peace.  As with number three, this is too in depth of a topic to post on an update blog, but I am happy to talk about it with anyone and you might see a post soon about it.

                Please keep checking my blog.  I have so many different things I’m dying to talk about, but I really was way past due for a simple update.  See you all again very soon.  J