Everyday Struggles

In this cyberworld that I have recently created I have become friendly with other woman struggling with many of the same issues that I do — mostly how to be a mother and have cancer, and deal with both without losing your mind.  I don’t know these women personally, some I don’t even know their real names.   I have entered their lives through their blogs that are written from computers as far away as Israel and they have entered my life through the thoughts that I spill onto these pages.  Having cancer can be an extremely lonely experience, one that plays with your mind and messes with your body.  It helps to have these women around when your thoughts carry you inward to the war that rages daily in your head.

  This war, which is not televised for the world to see, is mine alone; reason faces off against fear, living for the moment versus planning for the future. Thankfulness combats bitterness; joy struggles against sadness. 

These woman –these virtual strangers–get that.  They get it without having it explained.  They know that I am “fighting” my disease every day and that the word “remission” doesn’t really apply.  They understand that even though I may be alright today, that next week, next month, next year, the story could change and that that possibility remains constantly at the back of my mind.  They understand how slight daytime aches turn to carnivorous cancer cells eating away at my body in the dark hours of the night.

One of these “Mothers with Cancer” that I blog about ,died last month. She was in her 30’s with a 3 year old child. Her death has gotten under my skin.  I can’t get past the thought as I read her blog that she was fine one week, feeling OK, and then suddenly it was her husband blogging about how she passed away the night before.  There is something very surreal about this act of blogging and dying.  Blogging is a permanent record of who you are…and suddenly you are no longer.  It is almost as if someone were to die while you are talking to them on the phone.  Just like that.

These blogging friends I have are in all stages of their cancer.  Some are in Hospice, some are living their own lives with no recurrences of the cancer, and some are in constant overwhelming pain.  When I read the posts by those woman I am sad for them and scared for my future.  As my oncologist said today when I asked her how I will know if the cancer comes back, she said, “cancer pain does not get better, it only gets worse.”  The thought of someday living out my life on pain meds is very scary.

 To the outside world, I look better, and yes, I do feel better most days.  But know this, inside my head the war continues.  I will not fall prey to depression or let the fears and anger be victorious over thankfulness and joy.  I am too strong for that.  But know that they are there, forever struggling to take over.  Some days they make great advances for sure, and some days they even win battles, but they will never, ever win the war.

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Regarding Cell Phones, Facebook and The PMC

Here’s my opinion: It is extremely rude when people text other people while sitting with you at dinner, or at a bar, or having a cup of tea.  It is no different than whipping out your phone and chatting away while your friend sits across from you.  It’s rude.  Period. It makes the person sitting there feel stupid and unloved and unappreciated and they think :I must be pretty boring if my friend needs to take all these phone calls and text someone else constantly. I almost walked out on 2 friends last night, both of them texting while we were chatting over a glass of wine. I have decided that the next time this happens, I will leave. 

I understand the need for cell phones.  I carry mine with me at all times.  But when I am with a friend and my phone rings, I look, and unless it is my kids, I don’t answer it.  This need to be in touch with every single person in our lives at every moment aka, Facebook and Twitter is starting to get out of hand.  I myself am guilty of wasting many hours staring at Facebook, looking at others pictures, seeing where they have been and where they are going. In a painfully short amount of time, Facebook has become a part of my daily routine.  I can’t for the life of me figure out why I need to know what Joe Classmate from my High School is doing with his dog today.  I don’t even think I liked Joe Classmate!  So when I rail against Texting, it’s not that I am anti-progress or anti-technology, it’s just that I am pro face-to-face and pro slowing things down a little.  So what I am asking is this: Please put your phones away people — life is in front of you and you are missing it.

On a completely different note, I just noticed that my blog “Kicked by an Angel” has been added to the sidebar of The Pan Mass Challenge Blog — http://panmasschallenge.wordpress.com/ . That is very exciting, so I will be throwing in updates regarding my training, which has barely begun due to the weather, and my fund raising efforts.  Right now I have raised about $2600 — putting me in close reach of my goal of $3400.  Thank you so much to all of you for donating to this great cause.

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One Hot Mama

Lately, I must admit, I am so hot! I mean smokin’! 

By this I do not mean hot in the sense that I think I look amazing., although my hairdresser did fix my hair color finally to make it look more normal.  I mean hot, as in my body temperature.  My chemo induced hot-flashes which are exacerbated by my daily dose of Tamoxifen have started to really irritate me.

Yesterday, as Maeve and I were putting away the clothes in her room (actually, I was putting the clothes away — she was lying down complaining), I was overcome in the course of a half-hour by two body-consuming hot flashes. For those of you lucky enough to never have had a hot flash, or those of you men who will never have to endure them,this is what they are like:

It starts as a tingle in your belly. Then hundreds of ignited spiders carrying blow-torches are let loose, crawling up your spine, out your limbs, and finally landing inside your head, pushing to escape out the top of your skull. You must at this point, remove items of clothing.  I have tried on many occasions to ride it out, leave on my jacket or sweater, but there is no way.  I always end of tearing off my hat or sweater or whatever I can take off and remain decent in public.

Once the heat wave passes — anywhere from 60 seconds to 10 minutes — you are feezing.  Fever-like chills replace your previously sweating persona and you scramble to replace the items of clothing which lay in a heap around your shivering torso.

These flashes  happen about 10-15 times a day.  Maybe half occur while you sleep, which means you are no longer asleep.  Instead you are throwing off covers, peeling off layers, tossing and turning before you are searching for your sweatshirt again and pulling the covers back around you to stop the after-chill.  Since last May when the hot flashes stated I have not slept more than an hour and a half at a time.  This is fine though, anyone who has children knows that once they are born, you never actually have a full nights sleep again. Maybe between the ages of 7 and 12 you can get a few solid hours but once they become teenagers — forget it; they sleep less at night then when they were babies.

Two recent studies have found that breast cancer survivors who have finished treatment experienced more depression and far higher levels of fatigue, sleep problems, and difficulty working and concentrating than healthy subjects. One possible reason may be that Estrogen deficiency is a side effect of cancer treatment.

So Maeve asked me yesterday as she watched me go into a heated trance and rip off my sweater, why this was happening to me.  Although I was not prepared for the discussion that ensued about Estrogen, Menopause and getting your period, she seemed  to already know far more than I expected.  She is 9, so I guess it was time to explain some of this to her anyway.  Normally, a woman experiencing menopause would not still have young children around, as she would be somewhat older. But my kids are learning so much through my cancer experience — both good and bad, sometimes I think they had to grow up a little quicker than they might have if things were different. But I also think they will head into their adult lives with a little more knowledge and compassion than they may have otherwise.

If you want to you can read All About Hot Flashes here.

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There’s Got to be a Better Way

As I move farther away from all my surgeries, I am on a mission to make sure that my whole body is cancer-free. Over the next 6 months I am going to get  myself checked for every possible cancer that can be detected in my body. I definitely need to see a dermatologist on a regular basis and I am going to try to get some bone scans done before Dana Farber is through with me.

Because my Mom died in August of Colon Cancer, my oncologist made me get a Colonoscopy today.  Everyone  told me that the night before the test– drinking that nasty liquid– was far worse than the actual procedure. To those who told me that, I say yes, you were half right. The night before was disgusting , they were right about that– I won’t go into details, suffice it to say that I was STARVING from my liquid diet and then to have to gag down the gallon (maybe it was a quart) of what tasted like lemon flavored ocean water–well, there has to be a better way to clean out the system!

The procedure itself would have been no big deal if all had gone according to plan.  But, because of my ridiculously low blood pressure , coupled with the blood pressure meds they give me for my heart,and their inability to bring the pressure up, they had to stop giving me the sedation. Yup, that’s right, I had a colonoscopy fully awake.  The doctor told me that some people choose this method….I can’t understand for the life of me why anyone would choose to be awake for this kind of thing but I suppose there are some crazy masochistic people in this world.

Anyway, the outcome was good and everything looked fine. No suspicious cells to biopsy, no polyps to remove. It was worth the piece of mind, though. It’s certainly a relief to hear the doctor say, “it looks good”. 

So I have 5 years till the next test — 5 years to get my blood pressure up, or maybe by then they will have a better, less invasive way to test us for colon cancer.

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Thrown

“I have always known

You land where you’ve been thrown, 

And make that house your home”   Buffalo Tom

 

 

I was listening to one of my favorite bands today ,Buffalo Tom, who hail from Boston and have been around the local and national scene for more than 20 years.  (That fact alone makes me feel old).  Anyway, Bill Janowitz has always been a master with his phrasing and this quote from the song “Thrown” got me thinking about landing where I have been thrown.

 I was thrown into the world of cancer. Thrown into a world of anxiety, medical terminology, death, life, medicine and surgery. A world where nothing is as simple as it used to be, pains are not just pains and mortality is not taken for granted .No one asked if I wanted to be here, I was not given a choice, the forces-that-be decided to throw me into this world, sit back and see what I would do with it.

So what are we to do when life gives us these obstacles and hardships? We either let it destroy us or we own it — according to Bill, we make that house our home.  Fighting breast cancer and becoming a cancer survivor has become the center of who I am now, it’s where I will live for the rest of my life.  I am still in the process of turning my new house into a home.  There are many boxes, still taped up, that I have yet to unpack.  And I have brought  so many feelings with me, like old pieces of furniture, that I am still not sure which rooms to put them into. So I, like my new house, am  in a state of flux right now; but hopefully soon, I will settle in to this place and feel at home in the new life I have been given.  It’s the only choice I have, really.

 

Heres a taste of Buffalo Tom for those of  you that don’t know this awesome band: 

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Maeve and The Boys

dscn0185My husband took this picture yesterday at his sisters 50th birthday party.  I love this photo.  It looks like the cover to an album; either her solo project or with “the boys”.  I love where the sun cuts down at an angle leaving Maeve and her attitude in the shadows.

I have been wracking my brain for a few days about what to write and feeling guilty about not writing.  I have decided that the Lenten obligation of a daily blog isn’t going to work.  If my life bores me, I can only imagine how it is to my readers.  But I realized that it is a good thing that my life is boring.  It means that after the year and a half whirlwind of doctors appointment, diagnosis, surgeries and chemotherapy, my life has finally settled back into the mundane drudgery of the every-day.  Although this doesn’t always make for interesting writing, it sure feels a lot more comforting to me as I face each uneventful day.

So I will continue to write the blog…but not every day like I promised…I have never actually followed through on any Lenten promise anyway, why start now?

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Gotta Go

I’ve got nothing to say today….well, plenty to say, no time to say it.  I am off to work which is getting less painful.  The girls are all being very nice to me.  Maybe because I told them I have cancer. That was actually pretty funny, to see the look on their faces…”You have what????”

If nothing else, I can use my cancer as shock value.

So hopefully this counts as my writing today.  Tomorrow Iwant to talk about music.  Specifically how crazy everyone has gone over seeing U2 in Boston.  Come on people, there are new bands putting out quality music every month.  Some seriously great bands.  I love U2…but I love a lot of bands…but that is for discussion tomorrow.

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You’ve Come a Long Way Baby

hpim1105photo-2

Of all the terrible hardships that chemo afflicts on the body, the most noticeable and (to me) the most daunting is the loss of hair.  It seems crazy to worry about such trivial matters when things like heart-failure and loss of bone density are thrown in the mix; but vanity wins every time. The bald head is seen by everyone, a bad heart is not.

I was thinking today how much I hate my hair.  Everything about it –the color, the shape –screams ‘soccer-mom’!  But considering how my head used to look, I suppose it’s not so bad.  Patience is a virtue, my mother always use to say, right before she told me that I had absolutely none. If anyone knows any tricks to making your hair grow faster, I’d love to hear them.

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Bike Season Has Finally Arrived

I was so happy to be out on my bike this weekend for the first time since last fall.  I don’t do indoor spinning so  I really miss getting in the saddle and riding. Saturday I only did about 10 miles but it felt awesome.  Of course today’s snow sets me back again, but I know Spring is right around the corner.

I went to Cycleloft yesterday and helped a friend buy a bike so she can ride in her first duathlon and triathlon this year.  I am always excited when someone gets a new bike.  It’s like being a kid at Christmas. There is nothing like coming down stairs and seeing that banana seat bike with the purple handlebars under the tree.  Getting a new bike as an adult is just as exciting.

While I was there I bought myself the biking shoes that clip onto special clip-type pedals.  I have been afraid of these clips in the past because it takes some training to learn how to get in and out of the pedals when you stop at intersections. You need to twist your foot with a jerking motion to release the shoe. I will eventually get it, but I may have to take a few spills to get it right.

I am getting anxious to start training for the Pan Mass.  Thank you so much to those of you who have  already sponsored me.  You have been very generous with your donations — I have already raised 1453.00! Don’t forget, if you would rather sponsor Susan that would be great too.  You can look her up under her rider profile at Pan Mass Challenge–Susan Coccoluto.

Hopefully Susan and I can get out next week and ride. I am psyched to go riding with her again.  I haven’t seen her much this long and arduous winter. Thank you Susan, too, for agreeing to ride with me this year.  There is seriously no one else I would rather do the ride with.  After a few years of riding with someone you get into a rhythm and pace and can anticipate when someone needs to speed up, slow down, or take a break. It’s like going on vacation with someone — there are only certain people you can go away with and so many others that you just can’t handle for a weekend, even though they may your friends. I know with Susan it will be a blast!

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Joanie Giblin

Well, would you look at that.  Four days into my promise to daily blog and I’ve already missed.  Thank you Sharon for kicking my writing butt.  The fact that I worked Friday night and didn’t get home until 3:00 am is no excuse.   So here is a moral story for you all. Twice as long to cover the day I missed.

It’s the story of Joanie Giblin that I use whenever my kids want to blow off a friend to do something that they think is better.  In my house I just say, “Joanie Giblin,” and they know what I mean.  Feel free to use this with your own children:

Claudia sat next to me in my sixth grade class.  She was a school friend but not someone I hung out with outside of  my elementary school’s brick walls.  For some reason, she asked me to go away with  her and her family to Nantucket. It was the last day of school before summer vacation. Did I want to go?  Well of course I did, and I ran home to ask my mother. 

 My mother was at the hairdresser–like she was every Friday afternoon. It was her weekly escape where Rod, the owner, teased her hair into a perfectly coiffed up-do while the ladies gossiped, read fashion magazines, and drank champagne or vodka out of Dixie cups. She would stay in that shop for what seemed like hours.  The ‘hairdressers’, she called it –nothing like the fancy urban salons of today. It was a long room with mirrors and chairs on one-side and 3 or 4 hairdryers in the back corner that looked like they would suck the brains right out of your head. Something from a b-rated sci-fi flick. The ‘hairdressers’ was next door to Fells Market where I, on more than one occasion was sent with a note to buy Kent cigarettes for my parents. 

On that day when I got home from school, I ran out my front door and down the sidewalk of route 9 the whole mile to Rod’s place. When I threw open the door, the bell affixed to the top alerted everyone in the shop that someone was entering.  The ladies stopped their conversations and looked up from their magazines.

“Mom,” I said leaning over with my hands on my thighs to catch my breath,” Claudia invited me to go to Nantucket tomorrow with her and her family, can I go, please.”.

“Tomorrow? Tomorrow is Joanie’s birthday party, don’t you remember.”

Joanie  Giblin was my best friend at the time..  I walked to school with her every day and spent many afternoons hanging at her house, watching television or spying on her older brothers.

“Oh, I forgot.  Well that is ok.  I can miss it.  I really want to go. PLEEEEEASE.”

Mom took a sip from her Dixie cup,“Who is this Claudia?  I don’t know her or her family.’

”She’s in my class.  C’mon mom, she is really nice.”

By now the ladies were bored with the exchange between my mother and I.  They returned to chatting with their own hair stylists or talking to their neighbors.  My mother was getting bored too.  Rod’s place was her haven to get away from all things associated with children.  I was the last of her 7 kids and she was tired of it all. Besides, my presence in the shop, land of the grown-ups, was starting to make everyone a little uncomfortable.  She sighed.

“Well?” I asked

“Fine, she said, it’s your choice, but I don’t think you would appreciate it if you were Joanie.”

All I heard was ‘fine’.  That’s all I needed. I had won.  Joanie would understand, she was after all, my best friend.

 The next morning I climbed into the front seat of Claudia’s wood-paneled station wagon. Since the car was packed tightly with suitcases, boxes, and hanging clothes the only seat left for me was in  between Claudia and her Mother.  When we got about 1/2 hour down route 3, Claudia’s mother turned to her and said, “Claudia, have you meditated today?”

“No, Mother (she actually called her that) I haven’t, yet.”

“Well maybe now would be a good time to do that.”

And with that Claudia went into a sleep-like trance leaving me awkward and about as uncomfortable as any 12 year would be ,sitting next to a parent she barely knows.  It was about this time I realized that I hadn’t discussed how or when I was getting home from this trip.  By the looks of the amount of stuff in the car, they were staying for the whole summer. I had left my comfort zone, and Joanie Giblin, without an escape route.

My stay on the island when from bizarre to worse. They lived in a massive Victorian close to the center of town. On the outside the house was beautiful, but inside it was cold and empty.  I specifically remember the living room, a huge open room with bright wooden floors and white walls completely devoid of furniture except a white grand piano in the center of the room.  Atop this piano was a framed picture of the mother’s Guru, her spiritual teacher.  We were not allowed in this room, or many others if I recall.  And according to Claudia we were not allowed to go to the beach; only adults were.  So we played softball every day in her yard (this may explain why I am not a huge fan of the game, and have always preferred baseball).

Every day for hours, Claudia had to mediate while I was left to my own devices.  Sometime I would watch her for a while, and sometimes I would sit up in my room.  One day I discovered that Claudia was not an only child as I had previously thought.  During one of her meditation sessions I wandered out to the garage.  I found it was actually an apartment where her older brother and some of his friends lived.  They had a fully stocked fridge and a water bed.  It was the first time I had ever seen a water bed.  I remember that they were nice to me though, and probably far more normal than the wackos I was living with, but I also remember that one night the cops showed up at the garage.  We watched the flashing lights from the Victorian on the hill.  At the time I had no idea what was going on but now I can only imagine.

Night time was particularly difficult. I was homesick and I cried and Claudia would yell at me and tell me I was a baby.  I think she was second-guessing her choice of  vacation-friend because every night she would try to engage me in a pillow fight, and when I didn’t fight back she accused me of being ‘no-fun’.

 After what seemed like an eternity but was probably just a long-weekend, I called my parents crying.  I was supposed to be staying longer but as luck would have it, the babysitter, who I can’t remember seeing much of before this, said she was heading back to the mainland and would take me home.  My relief was palpable. Claudia was pissed.  I was never so happy to board a ferry in my life.

What about Joanie? She never really forgave me for missing her party and after a summer apart, we were never as close.  Then I moved away to Framingham and never saw her again.

I took a lot away from that trip to Nantucket.  Besides a hatred for softball, and an aversion to Life Cereal(it’s all they had for breakfast), and the fact that those white braided rope friendship bracelets that she made me buy, make me queasy now, I learned a valuable lesson about friendship and keeping your word.  Whenever I am invited somewhere that I think will be more fun than the plans I already have, I think of Joanie, and remember that sometimes the grass does look greener –until you get close enough to see the weeds.

 

 

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