Tag Archives: anger

The day of the cardinal

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Flonase, I believe is the culprit that sent my head into pain.  A postponed doctors appointment for my 3 month steroid shot, and a low key day.   And, get this.  Dreaming of The Obama’s.    Do you see my eyes rolling?   Any of my close friends I’m sure find the later very amusing.

Taking a break from roosters, moving onto birds, and I’ve struggled with this cardinal. The last thing I was painting that I didn’t like (a rabbit) became a turtle.  This cardinal’s fate may very well be another tortoise!

Agitated tonight, tired from the headache that now has settled into a raw stomach.   This, too, shall pass!   Onward.

I think tonight I’ll start my 30 day free trial for Hula.  I need a distraction.   The Golden Girls are always good for a laugh.   What’s alarming is that I am now the age that they were when the season started.

So it’s looking like a career painting animals is out.  (Was not my goal, I’m being sarcastic), but I’m angry that it isn’t coming easy for me.    Who am I kidding.  I’m angry at most anything right now.   I’ll sign off before I say something really bad!

Hope you have a nice weekend!

 

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Hell’s Bells

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Tuesday evening I went and visited a close friend who was going in for surgery Thursday, hoping to offer her support, comfort.  Instead she offered it to me, as I dealt with what is probably IBS, or a spastic colon.   Washcloths on my face, laying on her bathroom floor until the pain subsided.   I pulled it enough together to come home and deal with the last two hours of it.  While doing this, I was also calling my mother to find out what time her appointment was Wednesday, she is being treated for advanced kidney cancer (her 3rd cancer).  MGH (Mass General Hospital) in Boston MA basically saved her kidney, thus her life.  She lost her other kidney to cancer a few years ago, and before that, advanced colon rectal cancer.  She was scheduled for surgery in November, but we had to cancel because I wasn’t fit to drive her.  One of my struggles is insomnia.   They go in and check out the ureter, kidney, laser off any tumors, and place stents.  She gets anxious, and misunderstood that she could now accept phone messages, and they had called her back 8 times.  She deleted them.  So after calling oncall service, I learned that we needed to be there at 11:15. Great.  I can hopefully get enough sleep.

Arrive at my brothers in NH to pick her up at 8:00, he tells us to take his car, because mine has no heat.  That was kind of him.  But my brother smokes in his car, and I get very sick when I’m around it.  But you do what you have to.  We arrive early, 10:45, check in.  We aren’t there too long before they call us in.  I look back at the large waiting room full of people, guesstimated, probably 60 between patients and their caregivers.  Everything was going well, until 12:15 came, and my mother who hadn’t eaten since 7pm the night before was getting irritated (who wouldn’t?).  At 4:30 they came and said “We’re going to take you to the o.r. now.   I wished her well, and hiked down towards the cafe.  The hospital is like a maze and fairly confusing, but I’d managed to learn my way around a few years ago upon my own stay there.  Upon reaching the entrance to the cafe the beeper starts beeping.  I need to go back.  Up I go.  They made a mistake.  It was now postponed until 6:30, then 7:00, then 7:30.  Ended up we waited for a total of seven hours before they took her in for surgery.  I’ll skip the whole ordeal because frankly, I don’t want to revisit it.  An hour and a half later I get a call from her doctor, NO CANCER.  Words most people would be delighted, overjoyed, very grateful to hear.   I was.  For a split second, and then I got angry.  Strange reaction, eh?  One I didn’t expect.

I texted my sister.  “Do you remember when they told Dar (kid sister) she was in renal failure and would fall to sleep and pass in her sleep?”  (If only that happened.)  She was afraid to sleep particularly that first night after being told, the next morning she awoke, and was so angry she was slamming cupboards.    “That anger is what I’m feeling right now”.

Every hospital, every surgery, test, procedure, every waiting room brings back very painful memories.  One would think it would get easier.  I had brought plenty things to keep me busy, but my mother nothing appealed to me, and I kept busy by talking to my mother and trying to keep her from walking out. (She has done that before).    Selfishly also because I knew it would be on me again, if this happened.    I was now in that large waiting room by myself.  They were closing the unit.  Someone came with her bag of things and brought me to another building, another waiting room.  One of the “conference rooms” where they pull you in to tell you dreadful news.   But there was no dreadful news.  I had already heard from her doctor.   Why was I feeling so emotional? So angry?   Where was my gratitude?

A few minutes later someone came to get me, to sit with my mom who had gotten VERY sick upon awakening.  The usual naseau meds that we ask for in the o.r. were no longer enough.  So they administered another drug, but only half dose because they wanted her to be able to get in the car so I could drive her home.  And by this time, this unit was shutting down.  Thankfully it worked. and rather quickly she bounced back, she wanted to be out of there as much as they did.  So I went to go find my brothers car (we use valet, it’s cheaper for patients than the garages), they had closed.  So I went to the parking garage that they advised me to, got the car and off to the Main Entrance to pick up my mother who was VERY uncomfortable.  Starting enroute, I was trying to navigate and help make her comfortable, she was all over the seat, wanting to put it back.  It’s not my car, I don’t know how to do it.  I text my brother, and my phone dies.  It dies.   It had been fully charged an hour before.  Where had all the battery life gone?  And the four year old iphone doesn’t always charge when I want it to.  Every attempt takes about 20 different times before it starts to charge.  Now, in Boston, with a patient, I missed a turn, lost my way, and I’m lost, with no gps (phone).     Anxiety is through the roof.  I’m trying to calm down, I pray, I ask my angels to help me, and my mother needs to now lie in the back seat.  So I find what I believe to be a safe place (?) and she maneuvers the doors and crawls into the back, my whole knapsack and pocketbook spill out on the back seat.   Also want to mention that the drivers side headlight is much less bright than the passenger side, I was having a very hard time seeing.  “There is no need in getting angry, it isn’t going to help, Donna”.  I said “I’m not angry, it’s fear.  I’m petrified.  I am lost, in Boston, without a phone, in the middle of the night with a sick mother”.  This lasted about 30-45 minutes until I found 2A.  During this time my mother wants me to stop so I can get her back in the front seat because she determined how to put the seat down.

I’m on Rte 2, I try to calm down, adrenaline rush that has my head throbbing, and feeling like I was going to get sick.  She is now calmer, lying still, hungry.   30 minutes later I arrive at our normal stopping point, and get out of the car to find the money that once was positioned nicely in my purse, in my knapsack.  We order, I just get a drink.  She is eating, and I’m driving looking for a route to NH that I’ve only driven a couple times. She lives in NH, I in VT.  And she wants nothing of coming to my house, nor would I, I would want to be home in my own bed.   We find it, we think, now mind you, it’s pitch black, no street lights, I know I’m not where I’m supposed to be, nothing is familiar. (As familiar as it could be at dark).  I’m praying, looking for civilization.  This lasted for another 20 miles, finally found the route and brought her home.  I arrived home at 1:45am.

I sit on the couch to unwind, each time I close my eyes I see cars coming at me.  So I try to meditate and release the angst.  Decide on a glass of chocolate milk.   I drink the milk, and so begins the cramping and repeat of the night before.  This time, thankfully, I’m home, on my own bathroom floor.  Two hours later it subsides.  I crawl into bed, turn on the tv, and my legs start cramping.  Up I am again.  At 6am I’m finally ready to fall asleep, which I did. Set the alarm, call my mother at 10 “Go back to sleep, I’m okay until afternoon”.  Three hours later  I wake to the alarm at  and look at my phone which had miraculously charged to 60%.  There is a text telling me my girlfriend made it through surgery, it went well.  I smile, I thank, I praise.  I’m up, jump in the car, picking up her meds, some meals for her, and a freshly baked raspberry pie.

She is happy and grateful to see me, and was thrilled about the pie.  We have a piece together.  Calm, peace, gratitude set in.  And something else, familiar, but couldn’t yet define it.   I get into my car to drive home and it hit me… STRENGTH.   My strength returned only 2 times more powerful.   Okay, all is well, now you can rest, now you can wholeheartedly offer praise, and thanks.   All is well.  My family is blessed with a nice holiday season.  Two more cancers survived this year.  We are fortunate.

I arrive home, look at my cell (which charged up to 30% this morning) “Unknown Caller”.   “Hey Donna!  Calling to set an appointment for your mothers next surgery in six months!

I breathe, mumble about pouring salt in a wound, and then laugh.  I can do this.  I’ve got this.   Thank you Lord!

 

Sometimes

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Sometimes something happens, or you witness something that gets you in touch with how normal, or abnormal your life is.  I think life can be very difficult.  That is not to take away from all the beauty, and triumphs, but there are times when I find it hard to face my days.  I think we all experience this to one extent or another.  I’m not saying that I’m any different than anyone else when it comes to challenges, lessons, and choices.  But I do believe I do not handle it as well as many others when life throws me curve balls.   Or am I being unrealistically hard on myself, yet again?

My sister texted something to me the other day that really made me realize how crazy the life of a family with two gene mutations, and an extinguished list of cancers can experience.   Multiple diagnosis’s, treatment, appointments.   I find it overwhelming, and have now for a few years.

Currently two members of my family are considered in cancer treatment.   What remains (minus two who lost their lives to it), are survivors themselves, trying to make the most of their days cancer free, while supporting those going through yet, another battle.

I was burned out with this four years ago.  I.mean.burned.out.  But still, I forged through, being primary caregiver to my elderly mother with her third diagnosis. I think it has become acceptable and expected that I am the one to do this.  And that angers me.   My health isn’t optimum, nor is the life of a single woman trying to make it in New England easy.  It’s hard for everyone now!    If you know not financial frustrations or inadequacies, then I applaud you, but I also wonder if you can fully understand what it’s like to live through this.

I’ve had contractors in and out of my house since November, the whole process actually starting in September.  It is old.    My house is filled with piles of things that have been misplaced, shifted for work.   I’m actually surprised I haven’t ripped someone’s head off with this stress, alone.  But I choose to focus on the good of it.  The work that has been needing to be done for years is getting done.   So when I start to feel the stress of the situation, I’ll purposely sit and look out one of the new windows, or look at the changes that are happening, and it’s nothing but positive.

I’ve come to learn that it’s the conglomeration of, the accumulation, the consistent and longevity of struggles that takes it toll on me most.    I dive into whatever it is I need to, or I deem necessary, but it’s very hard to maintain it after so many years OF IT.       I’m resentful that once again, my life is twisted and turned upside down, without true acknowledgement from those who offer moderate support.   That is not to say that there are not excuses, or reasons, I’ve also learned with resentments that it really doesn’t matter about that… the bottom line is, here I am, again, responsible for a loved ones care.   But I will always do what I can for my parents.  This is who I am, and I while sometimes I wish I could blow off this responsibility, I know deep down, I could never do that.  This is what life has handed us, this is what we have to get to, and through.  I’m in.

Tomorrow I will leave my house at a time I usually am going to bed, and will drive the long distance to Boston, hitting both rush hour traffic hours.  I will sit alone, and wait to hear how my mother’s surgery went, and the status of her cancer(s) and what care will be required.     I will play, once again, the familiar cat and mouse game with her doctors eyes, her surgeon, trying to determine from the look on her face, before I am approached, the verdict of all.  And the past 14 years of family diagnosis’s and struggles will all come back to me.

Then, late afternoon, thankfully I was able to rearrange my appointments (for the minimum of 8th time), to see MY oncologist, for the first time in almost two years.    There are issues that will be addressed, and I’ve no doubt I myself will be heading back to surgery, but I will make that this summer.  It isn’t anything pressing, hopefully.   I will arrive home probably 13 hours or more from the time I left, and I will not be able to sleep.  My head will be filled with possibilities, both good and bad, and while my body will crave sleep, it just won’t happen.    It will be two days before I am “normal” (if I can ever be called normal) again, just in time for the clock to roll in the 13th anniversary of my kid sisters passing.    Anyone who has loss knows that the body knows long before the head of upcoming anniversaries.  Am I right?

My own diagnosis was 7 years ago on the 1st of April, and it was two long grueling years for me.  Boston no longer scares me, nor does driving in it.   But that doesn’t mean it isn’t exhausting.   And it’s not like these trips can be doubled with museums, or fun things.   There is no time.

As a cancer survivor, I do not dwell on what I have been through.  Like the work that is being done on my house, I try to collectively gather all good, and sit my ass in front of those facts.   I am alive.   It is hard not to “remember” or think about it, each day when I undress or dress, the scars are always there as a reminder.    And while I am now (hopefully) still in remission, there isn’t one appointment of any of my family members (all survivors, too) that we don’t have in the back of our minds…. What is this?   Will this turn out to be another diagnosis?   Another life altering experience?  More fighting?   But I’m here to tell you, every day in life is a fight for me.  A fight to hold onto the good, the positive, and continue with and through that which I need to do.

I will do this, get through this, in spite of my own struggles with major depression (which I’ve learned to not really share on) and fibromyalgia.     I will do this in spite of my own need to work, and to get some composure back into my home.

I don’t know what tomorrow will bring.  None of us do.  I do hope for the best, and after being in a potentially very bad accident yesterday, walking out of it unscathed, I am hopeful that tomorrow may and will offer good things.

“Oh Donna, you’re strong!” I’ve been told on numerous occasions in my life.  Yeah, I am strong.  I have walked through some very difficult terrain and made it out the other side.  I am strong because I have to be.  I have high expectations of myself and others, when it comes to family.  But with every new diagnosis or responsibility I start out on the path strong, and knowing,  I am one step closer to falling.   It’s just the way it is.

I have also learned in my life that acceptance?  Acceptance is key.   In order to be at peace, even among st all the challenges, I need to find acceptance.  And sometimes?  Most times?  That journey begins, first with willingness.    It also comes much easier when I know I have done and am doing my very best.   I can’t nor should I ask anymore of myself.   When I lay my body down at night to rest, knowing many times sleep will not come, I can feel good about myself and my involvement, my commitment to help my parents in the twilight of their years.   For me, it’s not only the right thing, it’s the only thing to do.

 

 

 

 

 

 

My dad

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In a couple of months my father will turn 81.  My father, a Navy vet who served his country, sent home money to his parents to help raise his younger siblings.  He is one of six children, the second oldest.

He and my mother had five children together.  Their oldest, my sister Karen, took ill at the age of six with meningitis. From that diagnosis she spent months in a coma, came out of it with the ability to only move her eyes. Intensive rehab brought her back from that, but she started seizing, (Seizure disorder) having numerous grand mal seizures a day, which reared her paralyzed on her left side, unable to speak, walk. The seizures slowly and continually kept taking from her.

My father became an apprentice, and learned to be an incredible carpenter.  He did this so that he could build a home for us.  He (and my mother) built two beautiful homes. He worked more hours in one week then I’ve probably ever put into a job in a month, and I don’t consider myself lazy.  A very meticulous carpenter, and a house filled with four other children, weekend runs to pick up my sister and bring her home and back, proved difficult for everyone, including Karen.  The more seizures my sister had, the more it took from her.   I cannot imagine having a child and having such an awful thing happen to her.  I cannot imagine what it must have been like having made the decision to turn your very ill and medically needy daughter over to the ward of the state.   I remember judging my parents.  Asking them “If I get sick, will you send me away, too?”   Now I cringe at the very thought of asking that.  I cringe at the slightest thought that they could have chosen better.  Who the hell am I to ask such a question?   How much their hearts must have hurt.  But responsibility of four other children, and having worked night and day to pay off medical bills that today would have been covered by insurance, my parents made a difficult choice.  A choice that I believe was right for Karen.  A choice that I now believe gave me and my siblings, a more “normal” life.  If you can define normal.

My father has a wonderful sense of humor.  My whole family does, really.    And no matter whose company I am in, it is with my family that the laughter is the strongest, loudest.   I learned at a very young age that laughter heals.

My father became a plumbers apprentice and then went on to work for a company who sent him (foreman) and his crew many hours away, which they drove back and forth each day.  My father made a good living.  We always had a balanced nutritious meal on the table, a warm bed to sleep in and even “space” of our own.  We never needed for anything, and were taught that it was because of my fathers hard work, that we had the good life we had.    We also were taught that we lived in the best country in the world, and that our freedom is due to the many men (and now women) who served our country, many whom never made it home.  It’s sort of ironic how the man who gave most of his life to a job for his family, had at one point became invisible, absent.  But working for this company enabled him to give his children a good life, a good start.   His absence was only because he was working to give us this.  The company didn’t appreciate him.  They offered his little for pension.  But he kept going, day after day, for his family.  I know not how to live so selflessly.

He was our loudest fan at softball games, my brothers hockey games.   I always knew I was loved, and while I didn’t agree or like some decisions he made, including ending a 27 year marriage to my mother, I humbly have long since realized, I have no right to judge him or her on that, either.  What do I know about

He and my youngest sister, Darlene, were particularly close.   He admitted to the three of us remaining children last year “Okay, okay, Darlene was my favorite!”   He looked at us like it was an awful thing to say, only to find the three of us bent over laughing.   No shit, Sherlock!   The truth is, they were great buds.  They fished together, they did so much together.  It is nice to look at pictures of the two of them together.   The way Dad looked at her, she was “it”!   And this is not to imply he doesn’t love us, or look at us with swelling pride.   They had something very special.     I remember sitting next to my sister when she made the phone call to dad to tell him that her cancer treatment wasn’t working.  She said “I’m so sorry dad”.    I recall a conversation she and I had, one of our last and she said “You know Donna, he came to every ball game of mine”.  She was talking about after my parents split.  “He would get there late from work, but he always came”.   I am teary eyed thinking about her smile when she said that.  For whatever he didn’t do right (you know what I mean), being her loyal, faithful fan made it ALL right.  My sister was an old soul.  There was and would never be any jealousy there.  She was ALL OF OUR favorite.

I’ve spent a lot of time reminiscing of late.     I do not know what it is like to be my dad.    I know what it is like to watch him age, lose physical and mental strength.  I sometimes have to look away so he doesn’t see my tears.  And yet, I know how very fortunate I am that at the age of 53, I still have both my parents.

I always thought I knew it all.   And for a long time I chased “his approval” foolishly.   That ended about a decade ago when I was unpacking my van, having been travel teaching.  He was helping me.  I pulled out a new painting and he looked at it, didn’t say anything, just looked.    I was tired, disappointed that he didn’t respond the way I wanted him to.  “Am I EVER going to do anything that makes you proud?”  I said with the sharpness of a razor.  I will never forget his expression.   His jaw lay on his chest.  It was that very moment I learned, my dad would probably never shower me with the compliments the way I once wanted him to, but he was proud of me.  And the chip I had on MY shoulder that day, hurt my dad.   “Of course I’m proud of you, Donna.  I love your artwork, I think you are very talented and I’m proud of all of my children.”   I have not, nor will I ever again question his pride for me.     I am SO over judging my parents on anything.  Thank God!   And now, I am working on doing the same for myself.   The crap we get into our heads!  It’s static!    It’s all just frigan static!

It’s funny as I age and realize just what an ass I have been in my life.  I’ve put my parents through some major worry, particularly when it comes to depression and mental illness.  I remember my second hospitalization.  My sister was with me at the phone.  She had brought me a teddy bear, I named him “Arthur”.  I think I was 24.   “Dad, I need to tell you that I’m in the Brattleboro Retreat.   I am getting help for my depression”.   “You have to pull yourself up by your boot straps Donna!”.   Of course I took that wrong, and he, being the age group that he was, wasn’t as educated on mental illness as he is now, 30 years later.     I was so hurt and angry.   Now I know, in HIS head and heart he was fearful.   My father “pulled himself up by his boot straps” over and over and over his entire life, to give to his children.    His heart, his head spoke from his experience in life, to hide the fear he had of what I would or have done to myself.  He wasn’t judging.  He was saying the only thing he knew to do!

I’m not sure why it’s taken me all these years to figure out how intelligent both my parents were and are.  And as I watch them losing ground, I am fearful of losing them.    I’ve been single for over a decade now.   My dad has always been there for me, to help me in any and all ways he can.   “I’m sorry, Donna, that I was focused on your brother’s education, and not yours.   I ignorantly thought that you girls would be taken care of, in marriage”.      There was once a time, and probably too long a period of time, that it angered me that I was raised with this mentality.  That the only way I would have a home is to have a husband.   But that has long since passed.   I am responsible for my choices.  I am responsible for marrying children, two of them!  I am responsible for where I am in my life.   If I had to do it all over again, I would have sought out college.   I know I could have made better choices for myself, could be financially secure, but I’ve also come to realize that even that isn’t as important as being a good person.   Doing my best, day in and day out, and living within the morals that I was raised and were taught.    The day I bought my house out from my ex-husband was one of the proudest days of my life.  I AM responsible.   I AM who I am because of the stable childhood I was blessed with, I learned the importance of family, and while I have no children or even husband of my own, I sometimes think about how difficult it is to keep my head above water.   I take pride in caring for and giving my animals a wonderful home.   And that is NOTHING compared to what my dad gave.    I am the strong woman I am today BECAUSE of my experiences.    I understand, now, why at the age of 30 when my 10 year marriage ended, how come that was so hard for me.  Because I felt like I was nothing without someone.    Oh my god have I grown.  Thank God!    And for all the things I thought my mom or dad did wrong, they did TWENTY TIMES that right!

I’ve watched my parents bury two daughters, their oldest and their youngest.  No parent should have to bury a child, but sadly, well, too many do.  I’ve watched both my parents battle cancer, and seen the anguish and hell it brought them to watch their three remaining children battle it too.     My dad has not had an easy life.  Like all of us if he had it to do over again, I’m sure he would have made some different choices, but my dad?  He’s only human.   My dad has led a good, honest life.  He knows what it is like to work hard for your family, to start over, and he will always remain “our father” in worry for his children.  My dad, what a great human he is!  He is visiting with my sister right now in NC.  I know he chose fathers day visit to mask the fact that I am his new favorite!   🙂

I have been blessed in life with an honorable man as my dad.  He really is my hero.    I am very grateful that I have had 53 years with my dad.   I am the good person I am today largely due to the good person my dad is.  Thank you dad.  I love you and you will always be my hero, and I, your little girl.

Tall goings vs short comings

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The past week has been trying, challenging, and disappointing to me.   In reviewing this week I know why I have had the desire to build a cabin in the woods and live far away from others.  Safe from the harm of insincerity, of cruelty, of pain.

As a kid my mother used to tell me “If you have one true friend in the world, you have it all”.  Well, it took me almost 50 years to figure out that my mother did in fact know what she was talking about throughout my life, and that this statement of hers was beyond truthful.

I was never really close to a lot of people.   A high school sweetheart whom I’d rather swallow mosquitos than spend time with now.   As an adult I have happened along many wonderful people, many to which I call my friend.    What does being my friend mean to me?   Well, what does it mean to YOU?

Life is about growth.  This I believe.   If I have to be under foot or on the phone with someone every day, every week, every month, it will never work.  Why?  Because right or wrong, I keep a distance for myself, for my own sanity, for my own protection or self preservation.     I’m not unique in my experiences, I’ve been hurt, burned and bruised by others.    For me I would rather put my energy into my art, my talents than risk losing another piece of my heart.   Sadly, I do not want to be like this.   I don’t believe that is what God would want from me.  Every day I struggle with the choice to let others into my life, into my heart.

Today I was crushed when someone I thought was a friend slammed me into a corner, accusing me of something that I am not guilty of.   Wow!   At first I took it with my tail between my legs.  A few minutes later I was ticked off and hurt.   Anger is hard for me.  I am learning how to deal with it.  In past I have swallowed oodles of food or whatever other addiction I picked up or vacillated through.  None of them work anymore.  None of them fill the void of loneliness, of heart-break, of fear.    I believe it’s supposed to be this way.  Why?  So that I can once again climb into the cart of self improvement, or growth.  So that I can live, learn and laugh through the many trials and tribulations that life dishes out.    I have fought against black and white thinking my whole life.   Either something really was, or it really wasn’t.   Finding the grey areas have taken time, patience.  There is no quick fix to this.  This thinking, as destructive as it can be to myself, I am realizing is also destructive towards others.   We all have our shortcomings.  We all have our challenges, our struggles.

My life will go on.   I will heal from the hurt as I always have.   I will continue on the path that I’ve worked on the majority of my life – self improvement, growth.   I will learn from this, and with God’s help, I will not let this take me back a few steps unless it is to gain momentum to move forward.

Today is no different than the lessons of yesteryear, perhaps a bit of a refresher?   Today I will drop a few tears, say a few prayers and tomorrow, when I awake, hopefully I will feel better.  Life goes on.  Life always goes on even when you think it’s cruel, when you’ve experienced an enormous loss and still, the birds chirp.  How can that be?   This is life.  This is a lesson in life.  Some of us get it sooner than later.   Either way, it doesn’t change the lesson, but the intensity of it.

Yes, I’m angry.  I’m very angry.  My therapist would tell me this is good.   I am sitting with this anger, sitting with this disappointment.    Such is life.  Such is life.

 

 

So this is anger?

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As I sat down in my usual spot in my therapists office I said “I don’t want to be here”.   She smiled…”Well, let’s talk about that!”

The night before I had been in touch with a cousin whom I haven’t seen in decades.  I wanted to let her know about our Uncle’s death and to talk about family genetics, thus, cancer history as I could let her know what we’ve been through which may and hopefully help her, her brother and children with early detection.    Not sure if I would hear from her, I was pleased when I saw she had replied to me.    Good old facebook.

Her reply resonated through my entire body and settled into my bones.  Her brother, my cousin, died in 2003 of cancer at the age of 48.  This is the same year my kid sister died at the age of 38.     It was too late to call my mom but I did.  When I told her she was really quiet.  Mom?  “Yeah I’m here, that is just horrible, just horrible”.

I walked around my house for a few minutes not being able to settle into a chair.   I felt numb, my chest was heavy and numb.
When I sat at the computer to pound out my emotions, my feelings, or to at minimum try to understand them, I couldn’t keep up with what was flashing in my head.    I was reacting physically, I felt like I had been sucker punched.   Why am I reacting this way?  Not that it wouldn’t be difficult to hear a cousin died of the same hereditary disease that has grabbed my family with its sharp talons.  What am I feeling?  I could not figure out what emotion, what feeling I was having.   A fleeting thought went through my head… “Anger?”

Stoic, and in a monotone voice I shared with my therapist what I had learned about my cousins.   I felt my foot tapping and could feel my jaw clench as I was speaking.   I love my therapist, she is great and has helped me so much in learning to first identify my feelings, and how to cope with them.    She asked the questions I was afraid she would ask, which I guess is why I didn’t want to be there.   She leaves no stone unturned, trust me.   Still feeling sucker punched only worse, I thought out and quickly planned my route to the bathroom should these feelings come UP.  Sure felt like they were going to.

Anger?  Do you feel angry?   I thought about it as I replied “maybe”.  The word that came out of my mouth and surprised me was “Powerless”.   I rarely use that word and it rings the tone of Step 1 in 12 step program.   I’m not even sure all that was said and by who, but I remember the words “unjust, unfair, cruel”.    With this I learned that I was angry.   “No wonder you didn’t couldn’t identify the feeling, Donna, it’s new for you!”  How cruel that my cousin, too, died too young.  How cruel that his sister has had to walk through life the past 10 years without her brother, her only sibling.   Another mother out living her child, having to bury him.  How insidious.

Oh trust me, I have had hissy fits and I know how to clean out a refrigerator and cupboards to help buffer the unpleasant feelings.  What I didn’t know was first, how to describe, name the emotion, but also, do so without running from it, stuffing my face so as not to feel it.   I am so not good at anger.  When my kid sister died I was hospitalized a few months later for “mood stabilization”.   I was miserable.  Broken and miserable.   I knew I was angry but I didn’t know how to deal with it.  I also didn’t know how to be “angry at God” that he let this happen to my family, cousins included.

I took a deep sigh and sat back in my seat.  “Yes, Yes I am angry.  I am very angry!”    Walking out of her office I still felt sucker punched, my jaw was still clenched, but I wasn’t as confused as I was when I arrived for my appointment, feeling like I had jumped on a hamster wheel and was stuck on it.  The more I thought about it the faster it went.  Both my therapist and I were pleased with my thoughts, decisions, to wait to talk to my cousin until I could pull it together.

We have made arrangements to talk this evening.  I am looking forward to talking to her, catching up, being in each others lives.   Perhaps I have information that may help her as we both swim in a gene pool you wouldn’t want to put spent fuel in.  Perhaps she will help me.  “Perhaps”, said my therapist, “this will help you both heal”.  Well, wouldn’t that be something!

I remember having the genetics testing done at Massachusetts General Hospital (MGH).   The doctor, quite serious, asked me if my parents had met at a medical convention, genetics.   I thought that was a stupid question given that I was in my 30’s when scientists identified the BRCA mutations.  Later, HNPCC or another name “Lynch Syndrome” which is hereditary colon rectal cancer.  I remember the look on the doctors face at MGH when I handed him the family history that my sister studiously gathered for her, the first in my family, gene testing.   It couldn’t have been more clear had his jaw been sitting on his chest.  I remember when the two idiot doctors in New Hampshire that stood over my brothers hospital bed 2 weeks from the day I was diagnosed, and told me that his diagnosis of two cancers had nothing to do with a mutation.   I cannot tell you the anger I still feel today.   I also didn’t hear them apologize when the tests came back from his second opinion at MGH and the first test they did was Lynch, and he tested positive.   Their lack of knowledge became ignorance and arrogance when they refused to listen to what knowledge we had. Breast cancer (2 different cells), ovarian cancer, uteran cancer, ureter and kidney cancer, colon, colon rectal, prostate cancer.   Every member of my immediate family including my parents have had cancer.   The list above is the cancer portfolio in MY immediate family.  ANGER!   How dare this doctor have the audacity to not even LISTEN to all that my family has been through, hence learned.  Five years later, to this day, I still could slap the shit out of their faces when I think about it.  Long gone should be the days when patients are loyal to their doctors, not themselves.  Long gone should be the days when a doctor’s ego gets in the way of a patient’s diagnosis and best treatment.    As angry as I remain I hope for him, a better doctor than he should he find himself on the other side of the patients table.

My parents have never been testing and have no plans to.   I think it would be futile and only serve to haunt them as to whom or which passed down the potential death sentences to their children.    With cancer on both sides of my family we have, and our doctors have guessed which came from where but of course there is no certainty unless testing is done.    What would be beneficial from their testing is to let family members from each side know which or what or both mutations came from, to know their risks, thus assist in prevention, early detection.

Today I’m more settled than I was yesterday.   I spent several quiet hours by myself yesterday thinking about what I had learned from my cousin and in my therapist’s office.   Tonight I will talk to my cousin and even though much of the news we have is sad, I hope we are able to find laughter for pockets of hope, for health.

KNOW YOUR RISKs!

 

 

Phillip Seymour Hoffman “cause of death”

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I just realized that the “official cause of death” for Phillip Seymour Hoffman has been revealed.  Yep, the barrage of ignorant jokes and comments are in full force.

My thoughts are with his family, his friends who now have been notified of the expected and not surprising “official cause of death” are not only reminded again, still raw to his death, but are now further pained with the senseless sad loss of their loved one.     Why?  How come?  What if?    His death is sad.  His death is tragic as are the too many others who have died of addiction, alcoholism.   Joke, laugh if you must, just don’t come near me.   It is sad, very sad as well as the too many deaths of other addicts.

Anger resurfaces for me.   Painful memories of loved ones plight and demise through addiction, with my own mental illnesses and societies both ignorant and uneducated understanding of what addiction is.     

Feeling the need to repost my first post on this subject, well regarding Phillip Seymour Hoffman.   Another tragedy… not just another person who overdosed.  How ignorant the comments that “he deserved what he got”.    The words “F OFF” come to the forefront of my mind.    Just wait until YOU experience such a tragedy, and you will.  You know why?  It’s a frigan epidemic.    Wake up people, educate yourselves and loved ones, PLEASE!

https://donnascullyblog.wordpress.com/2014/02/14/ignorance-addiction-mental-illness-phillip-seymour-hoffman/

On mental illness

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Perhaps it is because I have been afflicted with and affected by another person’s mental illness, addiction, perhaps because I see the ignorance of people who believe Phillip Seymour Hoffman killed himself, and isn’t worthy of mourning.   Perhaps I just can no longer sit or stand by and shut my mouth to the ignorance that flourishes around the topic of mental illness.

If you have never been affected by a loved ones mental illness, addiction, alcoholism, I am more than happy for you.  I am also in disbelief of your answer.     Perhaps this attitude is because I have been privy to too much pain regarding such.    Perhaps because I work hard every single day to cope within the spectrum of my mental illness, and am tired of hearing that mental illness, addiction, alcoholism is made up of the weak, the insane, the selfish.

I wrote an article last night on this, dropped it off this morning with the editor of our local paper.   It is lengthy, it is strong, it is spoken from a point of view of both one whom has lived through the agonizing life of a loved ones addiction, alcoholism.   It is spoken, truthfully, from the lips of a person who would like to high five my middle finger to those who believe this is not a disease.   It is spoken from my heart.   I will post it in a few days, would like to first give the newspaper the opportunity to print it.

I am passionate about this topic.   As much as I don’t want to acknowledge its existence, as much as I don’t want to hear of or know the consequences of addiction, I do.  I cannot walk away from it.  I cannot live in a bubble around it.

I wish that I was passionate about something fun.  I wish that I sit down and pound out a heartfelt article, comically about aging.  I wish that I have never seen nor lived to tell the sad stories of loved ones whom have lost their lives to addiction.

I was watching television last night, listening actually, when I heard someone say something very derogatory about Mr. Hoffman.   It reminded me of when I learned the news that one of the most important people who were in my life, one whom I loved and will always loved, died at 46 of addiction, of alcoholism.  “He did this to himself, no sense mourning for him”.   FUCK YOU!   That is all I have to say to those who are so small minded, devoid of any understanding of mental illness, and feel superior to those whom admit its existence in their or a loved ones life.

Anger, rage.   How dare anyone imply that the victim of addiction is not worthy of treatment, worthy of mourning, worthy of acknowledgement?

I have been caught in the talons of addiction.   Etched in my mind, in my heart are the memories of a loved ones fateful flight with alcohol.   I was once naïve, ignorant to it’s power.  I actually once believed that if he loved me, he would stop drinking….   If only… If only it was that simple.    Neighboring memories of friends whose child, children couldn’t understand why they see daddy, but it’s not him.  Why would he not want to see me?    The innocence of a child, the heartache of a child that cannot understand what we as adult cannot as well.

I need to sign off now.  My neck is tense, my foot is pouncing and my jaw is clenched.   I need to work through this anger.  I need to walk away and hopefully calm down, remember what it was like to be so ignorant.   Ignorance is bliss…

More later.

The angry stage of grief….

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This morning when I walked out to my car I was surprised to see my rubbish still there.  We are fortunate to have pickup.  Well, I looked up at my neighbors, no rubbish, another neighbor…no rubbish…. What the heck?  I go about my day, full of errands, first order of business was Fed Ex, second was Motor Vehicle Department which is always a joy.  Well, guess what????  We didn’t have to wait in line and what I thought was going to be about $80 turned out to be $20!!!  Wohooooo.  Our local satellite office has such nice women working there.  Much different from the headquarters…most are stoic, never smile and have the personality of a slab of meat….

Never knowing what I am going to discuss in therapy, today’s was a shocker to me.  I suppose because I just postponed an oncology appointment to January.   My therapist was quiet, listened, asking only a few questions, one being “When was the last time you spoke about this so intimately?   My answer….  At least four years, then I thought about it…. never.  I have never shared the traumatic details, the emotional weight of going thru breast cancer, two different types, in fact.  Tears flowed down my cheeks a couple of times, as I recalled more moments with my kid sisters treatment.  The topic then turned to recollections of my own journey.   In three words it would be “It fucking sucks”.  Mine was spread out almost 2 years because of complications, infections, yada, yada.  The emotional part I don’t think I have ever dealt with.  I did what I needed to do, got through it all with a sense of humor and with the help of friends who brought me to appointments, stayed with me through surgeries, helped out as they could.   My mother moved in with me for a couple of months, which actually wasn’t as bad as I thought it would be.  She was a tremendous help.   Given that my brother was diagnosed with two different types of cancer 2 weeks to the day that I was, and having drastic exploratory and corrective surgery, she was running the roads from my house to his.

Whenever I would feel down, discouraged, someone appeared in front of me that changed my perspective.  I remember one woman, had an arm removed, had a bone in her back removed, and she was determined to stay alive, keep fighting.   What the hell do I have to complain about?  Still, I had loss that I wasn’t addressing. Fibromyalgia complicated things.  It sucked, but I tried to keep a positive attitude and also educate other women through my journey.   I realized today something significant about my being a cancer survivor.  I have never gotten angry about it.   I bounced through the other four stages of grief, but I never got angry.   Perhaps that is why I am visiting this topic now.  I am starting to feel angry, four years after diagnosis, two years after treatment and reconstruction.   Anger is something I don’t know how to do.   I am pretty easy going, let a lot go by, but when I get angry it is hard for me to get out of it.   When my sister died, I was so angry that I couldn’t even stand myself.    A few months later my older sister called me and said something like “Donna, I love you, and I believe you need help with this, with coping.  Will you please consider getting help?” I did. I did. Ironically the psychiatrist who was assigned to me inpatient was the same psychiatrist I had seen for years.   After an evaluation, he said to me… “Donna, for as long as you have been my patient you have struggled with suicidal tendencies, ideation, thoughts…  Well, you have made progress.  You are no longer suicidal you are homicidal!  He was joking, of course.  The point he was making, however, was growth.  I was no longer harming myself or punishing myself for God knows what, I was angry, I was angry with Cancer, I was angry with God, I was angry at everything. I was lost in my anger.

I am now angry for my own journey.   What the hell did I ever do to deserve this?   Why did this happen to me, to my family?  I had convinced myself, well I still believe, that part of the reason was to educate women on early prevention, detection.  With the large number of women I encounter I could possibly help others.   Still, I’d rather have just educated them on painting, but this journey quickly became a side cart to wherever I was, wherever I went. I do not wish, nor will I stay in this anger.  I cannot possibly be angry, peaceful and serene simultaneously.  I have come so far, I have learned so much, I have gone through enough that I just want peace.  I want peace and serenity.   No matter how much weight I gain, or lack of exercise I get… my New Years Resolution for the rest of my life will be “Peace and Serenity”.    It has been a long journey to get here.  I still have shaky times when it flies out the window, but I have reminders all over my house.  The physical pain I feel on a daily basis reminds me, too, that all I can do is my best, that I have walked through the jungle jims of hell, and I am still here.  All I want is peace, peace and serenity.  I wouldn’t wish this journey on anyone, but I wouldn’t trade my personal growth for anything in the world!

My sister gave both my brother and I a medallion.  It means much to both of us.  This was the only thing my brother wanted to take from his car, the only thing he was worried about.  The other day I thought about mine and wondered where it was.  I hadn’t seen it in a couple of months.  Hmm, I’ll have to look for it when I get home.  Well, a few minutes later I pick my mother up at her apartment and she says “Hold out your hand, I have something for you.  I found it in the car, cleaned it up for you”…it was my medallion. I smiled, looked up and said “Thank you!” I am always given what I need.  I am always given what I need.  The timeliness of this is not uncommon in my life.   It’s rather nice, spiritually validating to me.

Saint Peregrine is on the front, and on the back, engraved artfully, beautifully reads this:

CANCER IS LIMITED
It cannot cripple love It cannot shatter hope It cannot corrode faith It cannot eat away peace It cannot destroy confidence It cannot shut out memories It cannot silence courage It cannot invade the soul It cannot reduce eternal life It cannot quench the spirit It cannot lessen the power of the Resurrection.

I will leave you with one of many comical episodes that I went through when I was doing all I could to fight this disease.   When I came home from the hospital after my second surgery (bilateral mastectomies, reconstruction), I was on some very heavy pain meds.   Two friends had stopped over to visit, mom made them lunch and they were sitting in the kitchen.   My mom asked me to come out and sit and try to eat something and visit with Robin and Bob. I did. A couple minutes into the conversation my friend Robin asked “Now what exactly did they do to you?”  I explained that they cut out the nipple and go from there.   She asked “Well, what did they do with your nipples?”   I looked at her and responded very quickly “They sewed them on my ass for traction!”   My mother said “It’s time for a nap!”

Oh and PS….. As I drove back into town approaching my humble abode I noticed my neighbors rubbish was out…. Um…. I guess I put it out a day early!

Aside

This morning when I walked out to my car I was surprised to see my rubbish still there.  We are fortunate to have pickup.  Well, I looked up at my neighbors, no rubbish, another neighbor…no rubbish…. What the heck?  I go about my day, full of errands, first order of business was Fed Ex, second was Motor Vehicle Department which is always a joy.  Well, guess what????  We didn’t have to wait in line and what I thought was going to be about $80 turned out to be $20!!!  Wohooooo.  Our local satellite office has such nice women working there.  Much different from the headquarters…most are stoic, never smile and have the personality of a slab of meat….

Never knowing what I am going to discuss in therapy, today’s was a shocker to me.  I suppose because I just postponed an oncology appointment to January.   My therapist was quiet, listened, asking only a few questions, one being “When was the last time you spoke about this so intimately?   My answer….  At least four years, then I thought about it…. never.  I have never shared the traumatic details, the emotional weight of going thru breast cancer, two different types, in fact.  Tears flowed down my cheeks a couple of times, as I recalled more moments with my kid sisters treatment.  The topic then turned to recollections of my own journey.   In three words it would be “It fucking sucks”.  Mine was spread out almost 2 years because of complications, infections, yada, yada.  The emotional part I don’t think I have ever dealt with.  I did what I needed to do, got through it all with a sense of humor and with the help of friends who brought me to appointments, stayed with me through surgeries, helped out as they could.   My mother moved in with me for a couple of months, which actually wasn’t as bad as I thought it would be.  She was a tremendous help.   Given that my brother was diagnosed with two different types of cancer 2 weeks to the day that I was, and having drastic exploratory and corrective surgery, she was running the roads from my house to his. 

Whenever I would feel down, discouraged, someone appeared in front of me that changed my perspective.  I remember one woman, had an arm removed, had a bone in her back removed, and she was determined to stay alive, keep fighting.   What the hell do I have to complain about?   But I did.   Having fibromyalgia complicated things.  It sucked, but I tried to keep a positive attitude and also educate other women through my journey.   I realized today something significant about my being a cancer survivor.  I have never gotten angry about it.   I bounced through the other four stages of grief, but I never got angry.   Perhaps that is why I am visiting this topic now.  I am starting to feel angry, four years after diagnosis, two years after treatment and reconstruction.   Anger is something I don’t know how to do.   I am pretty easy going, let a lot go by, but when I get angry it is hard for me to get out of it.   When my sister died, I was so angry that I couldn’t even stand myself.    A few months later my sister called me and said something like “Donna, I love you, and I believe you need help with this, with coping.  Will you please consider getting help?”    I did.   I did.

Ironically the psychiatrist who was assigned to me inpatient was the same psychiatrist I had seen for years.   After an evaluation, he said to me… “Donna, for as long as you have been my patient you have struggled with suicidal tendencies, ideation, thoughts…  Well, you have made progress.  You are no longer suicidal you are homicidal!  He was joking, of course.  The point he was making, however, was growth.  I was no longer harming myself or punishing myself for God knows what, I was angry, I was angry with Cancer, I was angry with God, I was angry with anyone else who crossed my path.    I got stuck in that anger for months.   What this visit was labeled was “Mood stabilization, depression”.   Yeah, I needed some mood stabilization, for sure!

Now I am angry for my own journey.   What the hell did I ever do to deserve this?   Why did this happen to me, to my family?  I had convinced myself, well I still believe, that part of the reason was to educate women on early prevention, detection.  With the large number of women I encounter I could possibly help others.   Still, I’d rather have just educated them on painting, but this journey quickly became a side cart to wherever I was, wherever I went.

I do not wish, nor will I stay here.  I cannot possibly be angry, peaceful and serene simultaneously.  I have come so far, I have learned so much, I have gone through enough that I just want peace.  I want serenity, and I want peace.   No matter how much weight I gain, or lack of exercise I get… my New Years Resolution for the rest of my life will be “Peace and Serenity”.    It has been a long journey to get here.  I still have shaky times when it flies out the window, but I have reminders all over my house.  The physical pain I feel on a daily basis reminds me, too, that all I can do is my best, that I have walked through the jungle jims of hell, and I am still here.  All I want is peace, peace and serenity. I wouldn’t wish this journey on anyone, but I wouldn’t trade my personal growth for anything in the world!

My sister gave both my brother and I a medallion.  It means much to both of us. This was the only thing my brother wanted to take from his car, the only thing he was worried about. The other day I thought about mine and wondered where it was. I hadn’t seen it in a couple of months. Hmm, I’ll have to look for it when I get home. Well, a few minutes later I pick my mother up at her apartment and she says “Hold out your hand, I have something for you. I found it in the car, cleaned it up for you”…it was my medallion. I smiled, looked up and said “Thank you!” I am always given what I need. I am always given what I need. The timeliness of this is not uncommon in my life. It’s rather nice, spiritually validating to me.

Saint Peregrine is on the front, and on the back, engraved artfully, beautifully reads this:

Cancer is limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot eat away peace
It cannot destroy confidence
It cannot shut out memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit
It cannot lessen the power of the Resurrection.
I will leave you with one of many comical episodes that I went through when I was doing all I could to fight this disease. When I came home from the hospital after my second surgery (bilateral mastectomies, reconstruction), I was on some very heavy pain meds. Two friends had stopped over to visit, mom made them lunch and they were sitting in the kitchen. My mom asked me to come out and sit for a minute, try to eat something and visit with Robin and Bob, so I did. A couple minutes into the conversation my friend Robin asked “Now what exactly did they do to you?” I explained that they cut out the nipple and go from there. She asked “Well, what did they do with your nipples?” I looked at her and responded very quickly “They sewed them on my ass for traction!” And then my mother suggested it was time for a nap!

Oh and PS….. As I drove back into town approaching my humble abode I noticed my neighbors rubbish was out…. Um…. I guess I put it out a day early! 🙂

The anger stage of grief