Thursday, November 28, 2013

Thanksgiving 2013

If I allow myself, I can have a splendid wallow in the muck of all the tough things I am dealing with.  MS.  Stage 4 cancer.  Severely diminished financial status.  Worst of all, most painful of all, estrangement from people that I love.  People I will always love and miss terribly.

There is a big however, however.  (giggle)  I am surrounded by an incredible, amazing, brilliant aura of love and support that is indefatigable.   This network includes childhood friends from growing up in the Bronx. My beloved cousin Steve, a stable, affectionate presence since I was born.  Classmates ranging from grade school to grad school.   Friends from my days as a young mother and La Leche League leader.  Friends from a lifetime of jobs, notably B. Dalton Books, The Asbury Park Press, teaching childbirth classes at Jersey Shore Medical Center, Healthnet.  Friendships that grew through our children’s friendships.  Friends from church.  Friends who used to be neighbors.   Friends I met through other friends.  Fellow writers.  These are true friends, not acquaintances.  These are people who have cried with me and for me, joined in prayer with me, laughed with me, shared their love and lives and individual gifts with me.  Most importantly, these are people who have never let me forget I am loved.  They bring light and joy to me as effortlessly as you would take a breath.  And when I express amazement and gratitude at their friendship, they express amazement that I am surprised.  It is a funny, continuous circle of “You love me?!?!  But why?!?  You are the one who is wonderful.  No, you are the one who is wonderful!  No, you are the one who is wonderful!”  And on and on.

Make no mistake, I have many, many low moments.  I am no Pollyanna.  Constant pain is overwhelming and can obliterate all sensible thought.  Fear of the unknown, of the future, or of the lack of a future, sneaks up on me, leaving me breathless and sick to my stomach.   Thinking of the losses I’ve experienced can make me bitter and full of self pity.  Animosity from people I love has been astonishing and heartbreaking.  There are many desperately down times and I have to struggle awfully hard to rise up.  Some days I barely make it.  But awareness of the incredible affection and sincerity of the dear ones around me holds me up, keeping me from sinking completely.  I know it sounds corny, and the phrase has been in more than a few song lyrics, but they give me the strength to keep going when there is so much threatening to drag me down.   

It is the dedication of all these remarkable people that gives me the capacity to say I have SO much to be thankful for.  Because I truly do.  I hope all of you reading this have as much to be grateful for as I do.

Happy Thanksgiving!! 

1 Corinthians 13:8


Did you like what you read? Let others know. Thanks!

Friday, November 22, 2013

Praying/Laughing Friday

I met someone the other day that I believe is one of those people God puts in your way for a reason.   Although he was an utter stranger, he knew something of my struggles.  And he gave me two words of advice for survival:

1)      Pray 
2)      Laugh

It was as simple as that.  He swore those two efforts are what got him through his own difficulties in the past.

So I am going to try to make this a once a week thing.  Praying/Laughing Friday (I know, I know, it is an awful title; I haven't been able to think of anything clever).  Even as I type that I think about all the things I think are funny that would seem horribly sacrilegious paired with prayer.  I also think of all the weeks when I have no idea it even is Friday.  But I am going to give it a try anyway.

(P.S.: Anyone with a better title idea or other suggestions are welcome.)


For today I have just included some quotes from the Bible that have always been a struggle for me to follow.  Love my enemies?!  I want their faces to fall off and their tongues to fall out.  Ok, maybe just the tongue part, they can keep their faces.  But love?!

According to Jesus it is cut and dry:

Luke 6:27-28

27 Jesus said, "But I tell you who hear me: Love your enemies, do good to those who hate you, 28 bless those who curse you, pray for those who mistreat you."

And just how is love defined, anyway? 

1 Corinthians 13

13 If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 3 If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails.

13 And now these three remain: faith, hope and love. But the greatest of these is love.

As I said in my last blog post, it breaks my heart personally and globally that we human beings do not treat each other better.  We’re all guilty of it, although I do know some people who seem exceptionally benevolent. 

So here is my prayer for this Friday: Pray for those who mistreat you, because love never fails.


What I have attached here should be a public service video for parents.   

When my boys were little, I was a total nutrition fanatic.  I made my own snacks.  I only served wheat bread (when the boys had white bread for the first time, they thought it was cake.)  After I found out Ryan had traded his homemade granola bar for a Twinkie at school, I actually wept.  Yep, I was ca-ray-zeee.  And I turned my boys into the world’s worst eaters.

By the time the girls came along, I had pretty much given up and let them eat what they wanted.  And wouldn't you know, they developed varied and healthy food choices, all on their own.  So I fully support Bill Cosby’s philosophy in this hilarious video. 


 Did you like what you read? Let others know. Thanks!

Saturday, November 16, 2013

We Often Hurt the Ones We Love. Even the Ones We Don’t Love. So Why Do We Do That, Anyway?

Online today I read an interesting statement.  “When someone tells you they are going to be brutally honest, “ it was observed, “they usually mean they are going to be more brutal than honest.”  It was a timely remark, as I have recently been on the receiving end of just such a verbal mugging.

Days before I was scheduled to have a malignant tumor removed from my left breast, I received an e-mail from someone I loved and trusted implicitly.  It had been a while since I had heard from them, but I hadn’t really given it much thought.  It never occurred to me that something was wrong, I just figured they were busy.  Then I discovered accidentally that this person was upset because I hadn’t called them after they had some minor surgery.   When I learned this, I sent an e-mail to apologize.  I tried to explain what had been going on in my head and I asked, affectionately, if we could put this behind us and move on.  Under ordinary circumstances, I told them, of course I would have called.  But the circumstances hadn’t been ordinary.  I had just discovered I had cancer and I was out of my mind with fear.  One of the worst aspects of chronic and/or serious illness, I have found, is how it can take over your life.  While you are acutely ill, it is easy to become very self-centered.  I had multiple sclerosis, lymphedema that had crippled my legs, a gall bladder abscess, which left me with a drain coming out of my abdomen and, now, metastatic breast cancer.   I can no longer drive or walk more than a few steps.  I am in constant, debilitating pain.   My career and financial security have gone up in smoke.  With all this swirling around me, I was consumed with anxiety and depression.  So this person’s surgery, relatively minor but, of course, important to them, just did not register on my radar screen.

I am ashamed and embarrassed to be so self-absorbed, but my friends have expressed their understanding and have been supportive and patient with my preoccupation.  They know this isn’t my usual nature and they are helping me ride it out as I find my way through this health nightmare.  Unfortunately, unbeknownst to me, this one person had no such empathy and had been nurturing a horde of grievances for months.  They were just being eaten alive by their growing anger.  So they decided this was the perfect time to let me have it.  In response to my conciliatory e-mail, under the guise of ‘being honest’, their devastating reply contained a list, with dates, of my many, many, many faults and failings, going back over a year.  This was written with such venom and bitterness I was literally left breathless.  I was horrified by my perceived crimes, which included my selfishness, my hygiene, my weight, my housekeeping, my decision making, my life choices and my parenting.  I was even faulted for having cancer. 

I was stunned by the malice.  And grieved that I had been so out of touch that I had no idea this person had harbored such a consuming rage.   Unaware, I had readily trusted them with my most private thoughts, welcomed them into my home, believed we were the closest of friends.  Yet all the while they were seething with resentment, blame and judgment that gradually escalated into a frenzy of 1600 furious, wounding words.  Nowhere in the message did they mention having any sympathy for me, there was only blame for how my misfortune angered and embarrassed them.  My friends all offer, constantly, to help me with shopping, cleaning, laundry, or just keeping me company.  And they do all these things for me cheerfully and generously.  But another notable omission from the e-mail was any indication of a desire to assist me in any way, except by telling me what to do and what I had done wrong.  It actually had been like that for years.  But because I loved this person, I had chosen to turn a blind eye to that.  Now, in the face of this brutal verbal attack, I realized how blind I truly had been.

Almost immediately, the shock and hurt of this censure set off a myriad of MS symptoms, which happens when I am particularly stressed.  A course of IV steroids is what helps a bad MS relapse, but as I was heading into surgery, this was out of the question.   I realized I had to deal with the situation with compassion yet as much distance as possible.  I was devastated that I had upset this person so much and, just as bad, had been so clueless about it.   I sent a brief email in response.  I did not even attempt to defend myself against the accusations, which were a ranting mix of exaggerations, unreasonable expectations and flat out fabrications.    Here I was at one of the lowest points of my life and this person chose to make sure I knew they thought I was a gross, unsanitary, obese, selfish, slatternly embarrassment.   I knew it would be pointless to initiate a debate and defensiveness was not what I wanted to communicate anyway.  I wanted to express my shock and sadness at having been so out of touch.   I couldn’t hide my distress at this terrible battering by someone who purported to love me.  I ended my message by telling the person I would pray for them.  I was praying that they would receive some relief from the incredible anger they were holding.  But I added, to my sorrow, please do not contact me again, as their malicious words were simply too hard for me to move past in the foreseeable future.

As the days passed I was haunted.  Especially now that I have Stage IV cancer, I have been giving a great deal of consideration to the life I have led and the life I am leading.  Life in general, actually.  What possesses a person to launch an attack like that on anyone, never mind someone they supposedly love and someone who was terribly ill?    What did it take to choose the ugliest of words, the most wounding accusations and fling them out there?  Why would you want to intentionally hurt and embarrass someone, anyone?  Why do people deliberately and casually do mean, even cruel or evil, things? 

This whole concept prompted me to do some online reading.  It was no surprise to find there are practically as many reasons as there are people.  But, excepting severe mental illness or brain damage, a few common scenarios bubbled to the top.  When it is a one-off thing, fairly uncommon and out of character for the perpetrator, probably the most simple explanation is that the sender is just plain old garden variety mad and is lashing out in retaliation.   For people who are chronically abusive, elemental theory makes a case for low self-esteem.  You feel bad, so making someone feel worse will perk you right up, the kick-the-dog-syndrome.  It is crucial to some people that they feel “better” than those around them, prettier, thinner, more attractive, more successful.  If you are looking down on someone, you must therefore be superior to them.  Feeling superior helps to temporarily mask feelings of insecurity and anxiety.  And feeling superior is essential to their self-worth.  Another possibility is personality disorder, especially narcissism.  For a narcissist, it is all about them.  With little to no empathy for others, they often don’t even realize how hurtful their words and behavior are.   There is the sad/mad deal too.  The person feels sad or hurt but really has never learned how to express that in a mature or effective way.  So they lash out instead of discussing the issue.

Who knows what the thought process was behind the terrible, hurtful message I received?  No matter what the cause, what is sad and scary is how common and accepted meanness is, whether it is being rude to a waitress, not holding a door, cutting someone off in traffic - or writing a wounding e-mail.

I read Hannah Arendt’s “Eichmann in Jerusalem: A Report on the Banality of Evil” while I was in college over forty years ago and it made a huge impression on me.  Clearly my experience does not compare to the Holocaust and I know Arendt’s reputation has declined over the past few decades.  But the phrase she coined, “the banality of evil”, from the first time I read it, has stuck with me.  Even though some now denounce it as a cliché, I believe it is an apt and accurate definition.  Evil acts are not always, or even usually, done by drooling, crazed maniacs.  Much of the cruelty in this world is perpetrated by ordinary, and ordinary looking, every day people.  People who look just like you and me.  In fact, they often have been people just like you and me.  And, I realized as I was analyzing the question, in at least one case, it was me. 

I had a dreadful, bitter disagreement with my brother about two years ago.  We had not been close for a long while.  At the time, I believed he had acted badly over something that had been important to me and I told him just what I thought.  I told him with few words, but, to my disgrace, they were well chosen to inflict as much pain as possible.    He replied to that message, but I didn’t read his response, so I’ll never know if he responded in kind or kindly.  I was already ashamed that I had been intentionally spiteful and I did not want to perpetuate the negativity, so I deleted his reply unread.  We haven’t spoken since.

I want to tell him how sorry I am, perhaps by post card, as he probably wouldn’t read a letter.   But I wonder if such a gesture would be more self-serving than anything.  We all know, unfortunately, being sorry or saying I’m sorry does not undo the hurt we inflict.  You can’t erase those words once you’ve seen them or heard them or sent them.  The damage is done after they’re out there.  Human beings have such an enormous capacity for goodness and compassion.  How horrible that so often we choose to be deliberately hurtful instead.  We do terrible things to each other on both a personal and a global scale.

My mother once gave me this piece of wise advice:  never, she said, put in writing something you would not want to see on the front page of the newspaper.  Although, sadly, I did not always follow her caution, she was absolutely right.  If anyone else ever saw the horrible e-mail I sent my brother, they would be shocked and I would be mortified.  Because no matter what he had done, no matter how angry I was, there is no excuse for the awful things I said to him.  A reasonable adult would have stuck to the facts – I don’t like what you did and I thought it was hurtful.  Instead, much like the malicious message I received, I went for the maximum cruelty factor.  It diminished me.  It made me an instrument of hatred and discord.  This is no news bulletin: if more of us thought before we spoke, the world would be so much of a better place.

In response to one of any number of atrocities in the world (how grossly ironic that I cannot remember which one it was) I created this banner for my blog several years ago:


Why is this so hard for the human race to do?

I will miss the person who hurt me so badly, but our relationship has been irretrievably damaged.  While I am getting over the initial shock, the betrayal of trust has left me sad and wary.   At the very least it has given me a lot to think about regarding the way we all treat each other.  As I move forward, I hope I can remember, and model, my own words.


Did you like what you read? Let others know. Thanks!

Monday, November 11, 2013

A Vineyard of Whine

I lay here in the semi-darkness, in a shabby, aged, not particularly clean hospital room.  It is the middle of the night.  Although I can hear the sweet sound of rain that I love, the bed is lumpy and hard.  I've been moved up from the ER, where I had spent many miserable hours, feeling so, so sick. My roommate snores. Am I ever going to sleep in the same room with anyone who does not snore, for Pete's Sake?!?! Apparently this room is across from the staff room.  About a half a dozen voices chatter cheerfully in Tagalog.  A couple of residents earnestly discuss their futures, marriage and vacations.  And I still, after 8 years of MS and a previous lifetime of ridiculous good health, cannot believe I am here.

I started feeling worse than usual a few days ago.  I was super weak and had the chills.  I just couldn't get warm.  My poor, lymphoma-ruined legs could not swing up onto my bed.  The pain level was through the roof.  The area being radiated every day was beginning to feel sore and a little cluster of blisters had already developed on my neck.  My restless leg syndrome, usually so repsonsive to the medication, was resisting for a change, with that awful sensation extending up to to my arms.  And, my personal, most humiliating favorite, incontinence, was complete.  Ahh, the wonderful world of multiple sclerosis.  I was changing my clothes dozens of times a day.  And, as shaky and wobbly as I was, that was no easy feat.  Finally, this morning, after a nightmarish night of unsuccessfully trying to make it to the bathroom on time over 20 times (yes, an unbelievable 20+ times), I curled up in bed and wept.  I gripped my rosary and murmured the words I have known for almost my entire life.  But in my head I just kept begging God to end this horror, the constant pain, the mortifying dependence, the fear, the worry.  Then I slept for about twenty minutes.  A record.

When I woke up Mary Kate was standing over me looking horrified.  "You HAVE to go to the hospital!" she demanded.  It only took me seconds to agree.  She called the ambulance, her husband went out to wait for it and I just sat in misery.  I was escorted by two kind EMT's and two professional, serious paramedics. They found my blood pressure was 200/110, which won me a free, speedy trip to the ER. And so here I am.

I felt like the dog's dinner. They started me off with a huge dose of IV Solumedrol.  Slapped monitors on every inch of skin.  And I could not get comfortable for even five minutes because the whole bathroom thing was hanging over my head. I had no idea what the plan was, but at least I had a commode next to my bed.  And, while the setting here is pretty gross, scruffy and neglected, every single staff member has been incredibly cheerful, sympathetic and helpful.  They offered things before I would even think of them.  They offered to do things before I knew I needed them.  It is indeed the little things that make a difference, but actually these acts of patience and kindness were huge.

The plan now is to do an MRI of the brain and spine.  This could be an MS exacerbation, a pseudo-exacerbation caused by a virus (which ramps up MS symptoms but is not a true relapse) or, so wonderful to hear, further metastasis of the breast cancer.

Two lovely, kind ladies just stopped in my room, volunteers from the hospital's ministry program.  I am having such a hard time not being sad and scared, but in the few minutes we chatted and prayed,
these women were truly inspirational.  They were pleasant, down to earth and simply beautiful in so many ways.  Every encouraging word they said about not being afraid really hit home.  I still have to work on it, but God sends His light to me through people like this and my wonderful, generous friends, old and new.

I am counting on healing, hoping against hope I will be healed.  But if I am not, I pray for acceptance and grace, for courage and dignity.


Did you like what you read? Let others know. Thanks!

Thursday, November 7, 2013

The Fight Begins

All treatment that I’ve received over the past eight years for MS was designed to slow the progression of disability.  Some of the meds didn’t work, some I declined because of potential side effects.  Tysabri worked for a while.  But as my condition worsened, I decided to go off of it.  It had been four years.  There were no studies available about being on the drug for that length of time.  I figured, why stay on something potentially dangerous that wasn’t helping anymore anyway?  As powerful and as serious as they were, all of these medications were really designed primarily to address quality of life issues.  Not that quality of life is not important, certainly.  It is meaningful and has enormous value and power.  But I would still survive.

Boy how the game has changed.  All the treatment I am receiving now is designed to literally save my life.  This is a tough concept to wrap my brain around.

I started radiation treatments last week.  I go every weekday and will for a total of approximately 35 sessions, or six weeks.  The initial set up took a long time while they measured and tattooed and drew little dots.  But now the sessions take less than ten minutes each.  It literally takes as long to get on the table as it does to receive the treatment.  I have to undress to the waist, get on a gown, get out of my wheelchair, pivot around to the table, sit my bum down in a designated spot, get both feet onto a step stool to push back more onto the table, then one tech supports my back and shoulders while the other swings up first one leg, then the next, as I cannot raise them myself.  Then I need a minute or so to catch my breath before they get started.  One day we were so intent on getting me set up, we completely forgot about getting my shirt off!  And I have to tell you, I have been single for a long time.  I have not had a parade of Romeo’s through my bedroom.  Therefore I had little concept of how shabby my underwear was until I had multiple people beholding it.  For that matter, I had little concept of how shabby my boobs were, either, until I had an audience.  Despite respectful staff, dignity, decorum and self-deception fly right out the window when you have breast cancer.

After approximately 7 minutes, we have to do the whole thing again, in reverse.

It sounds so simple, but it really is exhausting.  Shoot, these days everything is exhausting.  

I am a firm believer in the power of the mind over matter.  Because you do not feel or see anything with the radiation, it is hard to remember this is a process designed to eradicate the cancer, that these invisible beams are, hopefully, destroying the malignant cells.  The first few sessions I was just numb with the horror of what I was undergoing.  Then at the beginning of one session I started thinking “Kill!  Kill!  Kill!”.  That actually made me giggle.  It made me think of Arlo Guthrie in “Alice’s Restaurant”.


Funny, but not a good fit.

So now I am trying to imagine beams of healing lights seeking out the cancer and making it disappear.  That is definitely more comforting.

I started the hormone treatment last week, too.  I am mortified to acknowledge that at 59 I am still not in menopause.  Yep, you read that right, 59 and fertile.  Talk about horror.  Although that may account for my youthful beauty.   lol  So I have started injections that are supposed to rapidly bring on menopause: hot flashes, mood swings, the whole shebang.

Tick, tick, tick…still waiting.

So there we have it, the battle for my life has started.  Before I was fighting to stay mobile.  In retrospect, that seems almost frivolous.  Now I am fighting for more time.  I must believe I will win, although it is a struggle to stay positive, as I am so scared.   I am ashamed to admit I am scared of suffering, of indignity, of missing out on so many wonderful things.   I am having a hard time praying, so I am incredibly grateful for any prayers you might offer on my behalf.  I especially want to pray for renewed faith, for strength and courage.  At the radiation center and the oncologist’s office, I am surrounded by brave, serene people.  They are my role models.   Wish us luck!


Did you like what you read? Let others know. Thanks!