Wednesday, October 16, 2013

The Tattooed Lady



So.  Today, at the age of 59, I got my very first tattoo.

See if you can guess what it is:

This?




No?  How about this?




Hmmm…what about this charmer?




Ok, I’ll tell you….TA DA:




It’s that little black dot in the middle.  There are three others as well, but I can’t show you those because they include naughty bits.  They are the markers for my radiation treatment, which will probably begin next week.  I have too many co-morbitities to be a candidate for chemo, so we are hoping radiation, along with hormone therapy afterwards, will eradicate any errant cancer cells.  I will have a treatment every day, five days a week, for over six weeks.

In an icy cold MRI room, on a hard plastic table, I was set up for the procedures I will receive.  My arm was held over my head in a brace and I have to keep my head turned as far to the right as possible to avoid irradiating my face.  The area that was measured and marked off is relatively large, to include the lymph nodes in my neck and armpit.   Holding still for over a half an hour, my muscles started to spasm and then I was tattooed so the radiation can be aimed at the exact same spot each time.  Lying there, I had a few tearful moments as I was overwhelmed by the enormity of what was happening.  I still cannot believe I have cancer.   Oh, and we’re still pursuing the whole spot-on-the-liver thing, I have to go for another MRI next week.  I am just so weary of being a sick person.

I have to say, though, everyone at the Radiation Oncology Center was kind, pleasant and helpful.  My doctor is relaxed and friendly, he reminded me of B.D. Wong, except he is Korean, not Chinese.  He was incredibly reassuring and empathetic.

Who knows, maybe when all this is over I will treat myself to a new tattoo.  One of these would be my cup of tea.







My new theme song:






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Saturday, October 5, 2013

From the Deep End



It has been a rough couple of months.  And, as usual, my unhealthy coping mechanism is going to ground.

But writing this blog has been one of the most fun and rewarding things I have ever done and is definitely something I am not giving up on.  I have been jotting down a few ideas for posts and as I feel better I will work them up and get them on line.

I had the surgery to remove the malignant tumor from my breast last week and followed up with my surgeon yesterday.  I cannot say enough good things about her.  The first surgeon I saw had me frantic with fear due to my complicated medical history.  When I met with Dr. C. for a second opinion, her down to earth, direct manner was instantly reassuring.  She was frank about concerns over potential problems, but expressed confidence in managing them.   At the hospital for the surgery, I continued to be just bowled over by her easy going presence.  She was relaxed and cheerful and hands on, no chore was beneath her.  She even helped out pushing my bed to the OR, rather than waiting for the one whose job it was.  You just couldn’t help feeling assured by her all-around niceness.  I actually asked her if she had been a nurse before she was a physician, she was so unassuming, the antithesis of your usual I-Am-God surgeon.   She laughed and ascribed it to her upbringing and OCD.  More reason to love her.  She makes you want to be her best friend.  Or maybe marry her.

Not to be left out, my anesthesiologist was outstanding as well.  His clinical expertise combined with incredible compassion truly helped in easing my considerable fear of the anesthesia, in light of my lung complications.

Anyway, the follow up appointment was a mixed bag.  She got the whole tumor, which turned out to be the size of an egg.  While there were cancer cells in the margins, she believes she got it all out.  That was the good news.  I was surprised and dismayed to learn that after discussing my case at a meeting this week, the team felt chemotherapy could be necessary.  But with all my health problems, I might not be well enough to withstand it.  That was upsetting on both levels.  Then there is the radiation, which is the usual protocol after a lumpectomy.  I was really keeping any thought about the whole process at the back of my mind, it was just too much to take in before the surgery.  But now that it is imminent, the reality of what a trial it will be began to hit home.  Radiation is done five days a week, Monday to Friday, for six and a half weeks.  With my mobility issues, this is going to be tough.  It will be a challenge getting me there, it will be a challenge getting me on the table and it will be a challenge for me to lay on my back for a prolonged period of time.  As with everything else in my life, this will be really complicated.

Then I have the gall bladder issue.  I still have a biliary drain in, a constant source of discomfort and worry about potential infection.  But we dare not attempt the surgery, because God forbid I have complications, it will delay the breast cancer treatment again, as it has been delayed over the past months by all my health crises.

Sigh.

I am working at staying positive.  For one thing, I have a group of incredible, wonderful, loving friends behind me.  I am inundated by cards, phone calls, visits and well-wishing on Facebook. I am humbled by everyone’s faithfulness.   I feel as though I owe it to them to keep upbeat.  If they have confidence in me, who am I to be gloomy?




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Sunday, July 28, 2013

Not What I Expected


I never, ever thought I would get cancer.  Not in a million years.  But if I did, in my dreams I would be cool and dignified, tragically elegant, wan and heartbreakingly beautiful, facing my fate with courage and decorum.

Snort.  So much for dreams.

In reality, I am a blubbing, hysterical, terrified blob of a mess.  Instead of tissues, I have a roll of paper towels at my bedside to sop up my endless weeping.  The cancer diagnosis is bad enough, but the complications related to MS have me in a panic, mostly because my physicians are in a panic.  Panicky physicians do not inspire a tremendous amount of confidence.

Right now, though, the hardest challenge of all involves my children, who I adore beyond my own life.   For a variety of reasons, some logistical, some personal, at this point in time they cannot be together with me through this.  Of course, we always want what we can’t have and all I want is them.  ALL.  I.  WANT.  IS.  THEM.  My oldest daughter is doing what she can, but, in typical perverse fashion, the situation is too much for her and she alone is not enough for me.  We need to be together as a family.   Their being here would give me the confidence and assurance I need right now.  My courage, my strength, my reason for being, it all comes from them.   I want them here with me, I want to hold their precious hands.  I want their presence, I just want to look at them.  I simply want them.

But even typing those words feels like the most churlish dismissal of what I DO have, which is the most incredible network of support from friends and even people I don’t know.  My friends are the ones who drive me to appointments, listen to me cry, who show up at my back door with frozen drink treats, who tell me everything is going to be all right.  They are the ones who are storming heaven, sending me cards, calling me to tell me they love me.  I do count some family in there, especially my beloved cousin Steve, whose unconditional love has been a constant for my entire life. But for the most part it is friends, acquaintances, friends of friends, virtual friends from our blogs, these are the people who are here for me every minute of the day, radiating caring and hope.

Their campaign of love and optimism is irresistible and I am joining in.  I have never felt worthy before of asking for healing.  But I have been utterly inspired by the confidence that is enveloping me.  I am praying that the cancer has not spread, that the surgery will successfully remove it all, that my care givers will be skilled enough to get me safely through the surgery without needing a vent. 

In January 2004 I teasingly said to my kids “I am turning 50 in September.  I better be getting a pretty darn big party!”  And I did!  My sister and the four of them gave me a wonderful, fun surprise party.  My oldest son delivered a touching toast, stating his pride and love for me.  I was surrounded that day by love and laughter and joy.  It is inexplicable to me that things have gone so terribly wrong. While I am praying for a good outcome and future, more than anything I am praying for my children, that they may also be healed and strengthened and that we can come together as a family once again. 

I listen to meditations written by Belleruth Naparstek, a renowned psychotherapist who was a groundbreaker in the field of guided imagery.  I am focusing on two affirmations in particular to get me through this:

I can feel around me a protective cushion of energy containing all the kindness, good wishes, prayers, gentle smiles, and sweet gestures that have ever been sent my way.

And…

I know that I am held in the hands of God and I am perfectly, utterly safe.

And so I am.

 
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Tuesday, July 16, 2013

When Bad Things Keep Happening to Sort of Good People


Perhaps I am stretching it by putting myself in the Good People category.  I know so, so many people who are far stronger, braver, charitable and admirable than I am.  That is why I qualified it a bit, I am sort of good.  Pretty good.  Relatively good.   I do try.  However, those Bad Things, they just keep on a-comin’.

I found a lump in my breast several months ago, but with all my health problems and hospitalizations, following up on it took a back seat.  I finally had a biopsy last week and within a few days the results came back.  I have ductal carcinoma in situ, or, in lay terms, breast cancer.  It is the most common type and the chances are high for a complete cure after surgery, chemo and radiation. 

The problem is that the treatment protocol takes a tremendous toll on the healthiest of people.  And me?  I am not the healthiest of people.  Multiple sclerosis has sucked all the ‘life’ out of my life.  Secondary to MS I have developed crippling lymphedema in my legs, causing relentless, excruciating pain and severely limiting my ability to take more than a few steps, essentially confining me to a wheelchair and to my home.  Getting out of the house is simply too darn hard. 

Limited mobility means no exercise.  I carry the genes of Irish peasants who survived an Gorta MĂ³r (the Great Potato Famine).  So no exercise means horrific, depressing weight gain by just sitting here and breathing.  Oh, and breathing?  Yeah, that would be an issue too, as MS has caused a partial paralysis of my diaphragm which has compromised my ability to take deep breaths.  Surgery to remove the lump will require anesthesia.  There is considerable concern that my lungs would not be strong enough to recover from the anesthesia.  I might end up with a tube in my throat attached to a machine that would breathe for me for the remainder of my days.

What on earth did I do in a previous life?!?!  Holy mackerel, it must have been really, really bad.

I am trying hard to keep a positive outlook, but it is very tough.  I’m awfully scared.  On the plus side, I have a great team of health care providers who are truly skilled, concerned and compassionate.  I have found someone who might be able to help treat my lymphedema at home.  I trust my oncologist, who I will meet with on Thursday to discuss plans and realistic expectations.   My respiratory therapist has referred me to a physician who specializes in preventing post-op vents.  

My friends have rallied around me with a tornado of caring and love.  It is my children I am the most concerned about though.  I do not want them to be burdened or to watch me suffer.  I am praying for them, that they find solace in each other and that we can be a happy family once again.

So, I soldier on.  I believe things always work out one way or another.  They may not work out the way you want or the way you intended, but they do work out.  I have always rolled with the punches, dusting myself off and reinventing myself as I’ve needed to.  Even when I didn’t want to.  I am not ready for it, but ready or not, it is time for a new adventure.

Wish me luck.


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Thursday, June 13, 2013

Bronx Reflections: Cherished Childhood Friends

I have always been sentimental, I take after my grandmother, but I find I have become even more so since I have been sick.  I have been thinking a lot about growing up in the Bronx and also in Manhattan, where my grandparents lived and where I spent so, so much time. The city was an ideal place for a child like me, independent and curious.  There was always something to do and, luckily for me, there was usually someone to do it with. 

Two of my childhood cohorts, Hank and Mary, are easily my oldest friends, going back well over 55 years.  It is amazing how an accident of geography placed us together and yet we were such a perfect fit.   Mary was one of only a handful of children who lived in our large apartment building, but we were made for each other, both of us mad for animals, horses especially, and yet content to spend an afternoon reading side by side or playing paper dolls, even if the weather outside was fine. She lived on the top floor, I lived on the ground floor.  I was sturdy and tough, she was tiny and delicate and we were inseparable. 

Hank’s aunt lived in the building next door and every summer he was sent to stay with her.  He, with his chipmunk cheeks and adorable, mischievous dimple (which he still has), arrived in late spring and left in the fall, but oh the fun we squeezed in for those few weeks every year!   

 We all romped, first, directly in front of our respective apartment buildings.  Then, as we got older, we branched out to frolicking around the entire block and into the wilds of the space in the center of that block, behind the buildings.  We called it the Back Lot and I have to laugh at how barbarous and rough that sounds, because this was a lovely, middle class neighborhood.  It makes us sound like grubby, neglected urchins, when we truly were closely supervised and strictly raised.  But children love leafy, mysterious places and that is what the Back Lot was.  It was filled with boulders, ailanthus trees and weedy shrubs, shot through with rocky paths, shortcuts through the block from one street to another.  A perfect setting for all sorts of adventures.  When I think of the kind of misadventures we could have encountered I shudder.  But we never did.  It was our own personal playground.  The park was off limits for us at that time, too far for us to go alone (although I, defiant and fearless, frequently sneaked down to the park that bordered the Harlem River, often dragging my hapless brother along).  The Back Lot suited us just fine for the most part.



(All the greenery in the middle is our "Back Lot", the wilds of University Heights.  The yellow line is the route I took every day from my front door to school.)

There were actually four of us, not just three.  Our dear Noel rounded out our particularly close quartet.  He was in my class at Holy Spirit.  He was quiet, smart and made funny faces that made me laugh.  I adored him.  We adored him.  It is one of my life’s great sorrows that none of us have seen or heard from him in over forty years.  We have searched online and found no trace.  There have been tantalizing clues here and there, including the possibility he entered the priesthood, but otherwise there is nothing.  His full name is relatively common in England, where he was born, and in Ireland, so that complicates things.  We miss him terribly.

One of our favorite games was acting out scenarios based on 1950’s TV shows, especially the Superman TV series. (We watched A LOT of television!)  It is so funny to think of now, because both Noel and Hank were sweet and gentle little boys, certainly not aggressive or in any way dominating, but they were our Supermen, taking turns in the role.  And Mary and I would take turns as Lois Lane.  Maybe I am being overly nostalgic, but I don’t remember ever quarreling in our weeks and weeks of playing together every single day.  When the other kids were added to the mix there was inevitably rivalry and, sometimes, tears.  But the four of us always got along on our own.

Both apartment buildings had roomy courtyards ideal for running around in and my building had a vast lobby and great open hall on the first floor that we also took great advantage of.  We always had some fantasy we were acting out, we were a particularly imaginative and creative bunch.  We also were bookish dreamers, which is why I think we were so close.  The other kids on our block were not bad, but they could be bullying and bossy.  The neighborhood at large had a hefty population of Irish Catholics with big families, but, ironically, our side of the block had a very small proportion of children, I can only think of maybe ten all together, including our siblings.  That was it for two large apartment buildings.   

Our building alone was a great big L-shaped that contained probably about 50 apartments.  My side of the L had the address of 106 W. 179 Street and the other side of the L was 1944 Andrews Avenue.  But the majority of tenants were older people, primarily Irish Catholics and Eastern European Jews, and many of the later were Holocaust survivors.  When the 1940 Census was first available online, you could only access people by address, not name.  So I looked up my Bronx address because it was easy to find.  Incredibly, several of the wonderful older people I grew up knowing had lived in the building since 1940, including the couple who lived in the apartment over ours, the Hartmans.  I was so lucky, because these were like an extended family and they were all very, very kind to me.  They really shaped the person I became. 



The 1940 Census shows our upstairs neighbors, Mr. & Mrs. Hartman, were living there 14 years before my parents moved in.  Mrs. Hartman's mother was gone by then and they had no children.  They were very, very nice to me, and I shamelessly dropped by for visits with embarrassing frequency.  They always treated me to cookies and milk.


Mrs. Clune lived upstairs with her little dog, who she walked, it seemed, constantly.  She was a teeny, delicate lady, very sweet, always with a smile.  I have no memory of Mr. Clune, who must have died before I was born.  Their son was probably in his thirties when I knew him, but I thought he was an old man.

But back to us...our idyll only lasted until we were about 12.  My parents moved our family to the wasteland of rural New Jersey in 1966, where there was literally nothing but our hideous, cracker box development and cornfields.  My mother didn’t drive and there was nothing within walking distance, not friends, school, shops or, worst of all, the library.  I don’t think I have ever gotten over it, going from independence and my cherished friends to trapped isolation.

I wish I had pictures of Hank, Mary, Noel and I together, but we don’t.  Almost all the pictures I have of the neighborhood are as it is today.  A few exceptions are snaps of me in my mother’s arms outside our building, but facing the apartment house across the street.  That was a sumptuous complex with gardens, sunken living rooms and multiple bathrooms.  Now it is boarded up.  Although now the neighborhood is more family oriented again, the terrible, crime-ridden days seem to have passed, they left an appalling legacy.  The courtyards where we ran and played our games are locked up, with some gates topped by barbed wire.  The cement steps between the buildings that we used to access the Back Lot have crumbled.  The decorative limestone balustrades that lined the front steps of our apartment building have been demolished and replaced with cinder blocks.  Crime is less, but shabbiness and poverty exist where pride of place ruled before.



The building I grew up in; no gate or barbed wire in my time.  The first two windows to the left were my bedroom.



The other side of the building.  There used to be grass and decorative wrought iron fencing where those concrete slabs are now.


The space between our building and Hank's; the steps are all crumbled and broken now.


The gate enclosing the courtyard of Hank's building.


The beautiful building across the street from ours, the gardens are now all boarded up.

My mother and I took a trip in to see the old neighborhood about 14 years ago, with a friend from the Internet who had gone to my grammar school and his wife.  We had such a nice day exploring, even got to go into Holy Spirit school, as CCD was being taught that day and the school was open.  It was like a time capsule, absolutely immaculate, from the shining wood floors to the bright, windowed classrooms.  It was so good to see, and I am glad I had the chance, as the Dicosese of New York is shutting it down this month.  It is a disgrace that a school which has been in operation for almost 100 years is being closed and the education of inner city children, who are the most vulnerable, is being sacrified.  For shame.

It goes without saying that Hank and Mary grew up to be just as wonderful as they were when they were kids.  Mary is a devoted mother of a large extended family.  She still has a big, sensitive heart and a special love for animals.  Hank is a loving, loyal friend and he works hard to make a difference in this world (here is a link to his website).  Life and geographical distance prevent us from seeing each other as we would like, but, especially since I have been sick, they never fail to remind me how important I am to them and how I am in their thoughts and prayers.  One cannot ask for much more than that.

I am so grateful for how my sweet friends enriched my life and I thank you all, Hank, Mary and Noel.  I believe somewhere in the universe there is a faint echo of the laughter and pure delight in life that four children shared together a long time ago.  There is no way that joy, that simple pleasure in each other’s company, could ever fade away.

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