Category: Living with Cancer

Jan 27 2012

Breast Reconstruction ? a definite yes! – guest post

Jen, who writes at The Dinoia Family, offers some strong personal arguments in favor of breast reconstruction.  She argues effectively against those who might suggest that such surgery is arbitrary and needless

I can’t describe it as anything other than sheer

glee.

Well, that might be a *wee* bit strong for now, but I honestly think it is what I have been feeling for the past week or so.  In other words, that first post-surgical blog post was not just the meds talking.  If you remember, I was a bit stressed about the surgery, so much so, that I took a ‘relaxation’ pill the night before.  I kept the stiff upper lip and tried to be positive, but also allowed myself to think that the surgery could fail, the worst-case scenarios would happen and I would end up regretting everything.  Given that I did not expect that my world was going to improve 1000% overnight, imagine when it did?

Okay, okay, we’ll leave it at 990% for now.  After all, I do have a follow-up surgery and some tweaking, but overall I am so content.  I KNOW without a doubt that the DIEP was THE best procedure for me and I am so glad that I have so many friends who would not let me skip this opportunity.

Do you know what I did last week?  When it was finally time to take that first, real post-surgical shower, I looked in the mirror.  I gave a long, hard look and do you know what I saw?  I saw resolution.  I saw (and felt) a decision that will never, ever be regretted.  Despite what some people say, despite that there are entire groups who feel that reconstruction is a waste of time and money, I will forever be grateful for the foresight I had to research my options and go with my gut.

You see, there are many people out there who believe that reconstruction is useless.  There is the idea that breast cancer is over-sexualized and it’s all about “saving the ta-tas.”  Trust me, by the time you get to my point (and remember that I was only Stage 1 and am doing just fine), there was little or no saving to be done. There rarely is at that point and all of the awareness in the world is fine, but it won’t necessarily prevent you from losing body parts that you have come to appreciate.

Now, one might say, “But, my God, you get to live!”  Well, it’s not as if I went off on a bender, driving down the wrong side of the road or spent my days living in an otherwise reckless manner.  As some people like to say, it was a complete crapshoot.  However, that begs the question:   Why are those who are stricken suddenly supposed to hate a body part and want to immediately part with it?  Why are we supposed to be grateful to have our chests mutilated, our skin burned and perhaps our bodies filled with toxins?  If we didn’t do anything wrong, then each additional “fix” just adds insult to injury.

Yet each and every day, I read of someone who decided against reconstruction because she doesn’t need a breast to be a woman.  No, I suppose one doesn’t.  So, then, many women who opt for reconstruction are made to feel as if they are somehow desiring to be pin-up models or are trying to enjoy that size C that God forgot to give us in the first place.  So, here is my question:  If a man had to undergo something similar (say a slightly different type of cancer) and he wanted reconsctructive surgery, would he be made to feel like less of a man?  Would he be told to just cut it off, that it doesn’t define who you are, so just get over it already?

Somehow, I think not.  So why can’t women enjoy the same privilege?  Why is it assumed that we are aching for a Playboy contract (let’s face it, that’s not happening) or that we don’t feel whole without body part that so many deem to exist solely for a sexual purpose?

Maybe, just maybe, it’s like any other body part.  Would you not be upset to lose an arm or a leg?  So, why are we so quick to decide that this is so much less necessary than any other limb?

For many women, the breast is much more than just a sexual object, as it is also a primary source of nourishment and comfort for wee ones.  I don’t know how I would have gotten through the feeding and comforting of three children without them.  Yet, because a miserable cell invaded one of mine, I am supposed to discard it like yesterday’s trash. I was supposed to look in the mirror and feel whole again despite the fact that there was a blank slate where one of my primary tools of early parenting was cut off, poked, prodded, tested and thrown away.  I was supposed to feel stronger and more self-assured because I lost a body part?

No, thank you.  If there is an option to make me look and feel whole again, I will take it. I look in the mirror now and while I don’t see a perfectly matching set (but never did), I do see a work in progress.  I have cleavage that looks and feels natural.  I feel pressure, pain and hot and cold in growing amounts each day. Nicholas can snuggle up against me (okay, not right now, but one day soon) and he will be able to rest his head on my chest as we read books or tell stories and it will feel as natural and normal as it did in the past.  However, decidedly, the best part of the whole situation is how I feel at the moment.

I feel Glee (yes, with a capital “G”).  Glee for making the right (and only) decision for me.  I feel sorry for those who feel as though they have to continue to push the idea that reconstruction is somehow bad or wrong.  I would never tell someone that they should or shouldn’t (though would give my experience if asked) and think that the needs of the person dictate what should happen.

I also do not think that it is correct to imply that anyone who pursues their surgical options naturally has less self-confidence.   In fact, I feel quite the opposite.  I took a huge risk and had to have not only an enormous amount of confidence in my doctor, but also in myself….and thus far, nearly 11 days later, I do not have one regret nor do I expect I ever will.

from: The Dinoia Family

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Jan 24 2012

Neighbor Battles Cancer – guest post

Last summer my neighbor and good friend was diagnosed with triple negative breast cancer.  She decided to be treated at the community hospital where I worked for 20 years.  So I knew all of her doctors and many of the nurses and technicians caring for her.  Chris does in home daycare.  So I most often see her in the summer when my granddaughters are spending a lot of time at our house.  We would always walk down when the kids were playing in the drivewayMy girls would bring their bikes or scooters, toys, dolls, and cookies to share.  We would sit in the driveway and watch the kids, exchanging news and neighborhood gossip.  She and her husband are self-employed so they had less than optimal healthcare options, part of the forgotten America the healthcare reform bill was meant to serve.

Chris started a Caringbridge page in addition to her Facebook updates.  When I read her January post, I felt I had to republish it here.  Like so many of us making a year’s end assessment, she has focused on the blessings as much as the suffering that cancer brings.

New Year, new me

Hello everyone,

I have never been so glad to see a year end !  2012 Will be a new year with new beginnings for me.  I finished all of my treatments just before Christmas.  It was a perfect time to wrap treatments up.  After  12 weeks of chemo and 36 radiation treatments I am finally finished.

My Oncologist said they have surgically removed, poisoned (chemo) and burned (radiation) every cancer cell that they could.  I am considered in remission.

It is frustrating  though because with Triple Negative Breast cancer that even though it is the worst kind of breast cancer, very aggressive ,there are no blood tests or other test  to prove it is all gone.  The treatments are like an insurance policy they tell me.policy.

They cautioned me that most women experience depression when treatment ends. I however refuse to let myself go there. I do feel somewhat anxious now that the heavy duty treatments have ended and I am somewhat on my own.  Will it come back ? What do I fight it with currently ?

I know I have a wonderful support system to rely on and now that treatments are over. Also I plan to rely on my spiritual side to continue to help me stay strong. I have felt empowered by all of you with your kindness and prayers. My niece pointed out that it is like everything I have ever done for anyone has come full circle back to me. That is very true. It has been overwhelming all the love I have felt.  I could never have imagined how kind everyone would be !!

I can honestly say that more good has come from the last 7 months than bad.  I have seen many other patients in much worse shape than myself and it made me feel like one of the lucky ones if there is such a thing with cancer. Lucky  however I did not have cancer when my sons were young, the situation my late Mother had to endure.

There were so many rules to follow during treatment that I now feel free at last. Free to try to return to normal. For example free to eat blueberries and other antioxidants once again.  Free to take supplements, free to wear a bra !  Free to use a regular toothbrush because there are no more blisters in my mouth from chemo,Free to wear a deodorant that might contain aluminum…even though the aluminum is not good for any of us.Free not to force myself to consume 64 oz of water, free to drink WHATEVER I want like wine  :) AND free to watch my hair slowly growing in now. Free to have my hair colored again, that is as soon as I grow enough to color !  Did I really expect it to grow in blonde ?? I have never seen myself any other way.

I see one of my 3 oncologists  in 2 weeks and I will continue to be watched closely for a while but basically the worst is behind me.

In fact the day I “graduated”, they even gave me a diploma, from radiation my husband Tom went out and bough me some graduation presents ! Some beautiful Susan Komen Breast cancer jewelry that are now dear to my heart.

Speaking of hearts…I am so happy to mention that Tom is also doing very well after his Open Heart Surgery.  What a pair we are.

His surgeon said that people often die from what he had and it was  a very serious situation. Dr Storey said it is a very slow recovery, 3 months, but Tom is doing very well.

We are both truly  blessed to have such good outcomes from such a scary time. A new year and renewed health for both of us !

Again, Thank you so much for your support !

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Jan 13 2012

The Crux of Cancer – guest post

Here is another more positive outlook for the new year.  It is written by a professional writer and lymphoma survivor blogging at OPEN Mike

For more than three years now I have sumo wrestled with the Emperor of all Maladies, each of us trying to throw the other out of the ring. (At 145 pounds I may be in the wrong sport but, hey, I’m feisty.) Our next honbasho starts on Jan. 12.

Here are five things I’ve learned about my foe:

Cancer is an accumulation of accidental cellular events that conspire to take down the whole system, slowly building momentum over the years until it reaches a tipping point and then cascades out of control toward the grave.

Cancer can take decades to mature, during which the initial mutation is augmented by other random genetic changes, fueled by carcinogens in our food and environment and super-charged by stress.

Cancer is born in, and borne along by, the genes, as Dr. Mukherjee points out: “Abnormal genes governed all aspects of cancer’s behavior. Cascades of aberrant signals, originating in mutated genes, fanned out within the cancer cell, promoting survival, accelerating growth, enabling mobility, recruiting blood vessels, enhancing nourishment, drawing oxygen—sustaining cancer’s life.”

Cancer hijacks the body’s normal processes to its own narcissistic ends. There’s nothing extraneous about cancer. It doesn’t invent new proteins or pathways but exploits existing ones, like mitosis and motility, while overriding built-in safeguards like apoptosis and tumor-suppressor genes.

Cancer has vulnerabilities; it can be beaten—or at least beaten back for several years—by a combination of healthy habits and medical treatments. My seven-fold strategy includes: a positive attitude, a sense of humor, a plant-based diet, targeted intervention (surgery, radiation, chemotherapy), submissive prayer, a focus on others, and the loving support of family and friends.

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Dec 29 2011

10th Cancerversary

My tenth cancerversary came and went almost without notice.  I would feel bad about this oversight but maybe it is a sign of good mental health, of having moved on.  It was 2001, a year that is remembered darkly anyway for the events of that September.

It was a series of events in my case, each one more portentous than the one preceding.  I awoke with a start – a stabbing pain in more lower left abdomen.  Then reaching down to feel a large hardened shape that hadn’t been there before.  Having a physician colleague palpate the mass when I went to work at the hospital.  Being told “you need a CAT scan.  I mean today!” So I went to my own primary care doctor.  He also felt the mass, ordering a scan and a reading STAT.  So I had it done, returning the next day to pick up the results and ferry them back to my doctor’s.  It was a rare sunny, balmy day in early December, the kind that fills you with optimism.  That lasted until the typed results slipped out of the envelope in the car, revealing the words “leukemia or lymphoma.”

Life was never the same after that.  Becoming cancer.  Achieving remission.  Falling back into relapse.  Second remission followed by stem cell transplant.  The operative word in this paragraph is life. I still have it.

Here I am ten years later, much longer than the 7.5 months predicted in the literature.  A miraculous testament to the theory of targeted biotherapy.  A poster child for my own rare disease – t-cell prolymphocytic leukemia.

So I let the anniversary slip by me unnoticed.  Maybe I want to forget that cold, cold day when I first read my prognosis, and crouched in the shower crying for my last Christmas season, crying for the for the family weddings I would never witness, for the unborn grandchildren I would never hold.

I do still celebrate, although quietly, as many transplant survivors do, the anniversary of my stem cell transplant, the birth of my renewed immune system, and hence my new “birthday.”  August 16th – now that’s a day to remember, although I don’t, remember much of it, that is.  The preparatory chemo made me weak.  In the morning, at home, I collapsed to my knees in the bathroom.  My wife and teenage son had to help me back to my feet and into the bedroom.  My wife drove me to the clinic.  Before the infusion of my donor/brother’s stem cells, I received 50 mg of Benadryl intravenously.  That’s about the last I remember of the procedure.  Photographs exist that prove that it happened.  But then I still exist which should be proof enough.

My wife drove me to University Hospital for admission to the Bone Marrow Transplant unit, the place where I now work.  Although it was August, for some reason I remember it as being cold.  The rest of my twenty-two day stay is a cloudy, episodic mixture in memory.  My wife kept notes of each day’s events on our Caringbridge page.  Someday I will reread them, then set them on virtual paper in narrative form, the next chapter in my Diary of an Illness, for others to read.  Perhaps then my memory will be restored.

I am grateful, immensely grateful, to have survived, to continue surviving when I know of others not so lucky, people with my own disease, people with other types of cancer.  Cancer once again provides me with a font of new relationships weekly.  Most of the new people I meet are folks with cancer or those affected by cancer – the wives, husbands, sons, daughters, mothers and fathers that stream through are clinic, not knowing exactly what to do but trying to do the best they can.  Just being there…sometimes that is enough.  Which is good because sometimes just being there is all that can be done.

I am grateful but sometimes I think not grateful enough.  One of the first lessons a cancer patient learns (right after the lesson that life is not at all fair) is to cherish time, to cherish relationships.  We sometimes adapt the conviction that this is a lesson which will change us forever, change the way we relate to the world. We promise ourselves never to forget these lessons, never to fall back into a lazy, unfocused approach to life.

But then time passes.  For the lucky years pass.  We get further and further from the drama of our illness.  We fervently hope for a return to normalcy.  I think we never quite get there.  We are not as close to death as we were when we were ill.  But we are closer than before we were sick, before we were cancer.

For survivorship to be meaningful is has to require a certain level of enduring responsibility.  So much was suffered by us, so much by the people that loved us.  For the time of our illness immense resources were directed towards – the finest fruits of medical science were laid at out feet, the ministrations of dozens of nurses, aides, technicians, social workers, chaplains, office staff were showered on us.  For a while we basked in the prayers and good wishes, the karma of hundreds of people, many we did not even know.  Our existence became defined by our struggle with cancer.  It brought focus.  It offered the glimpse of an epiphany, the possibility of a redemption.

These gifts did not depend on our eventual cure or not.  They presented themselves instead as a separate expression of a different kind of healing.  For the sake of those others who did not survive, for the sake of all that was expended on our behalf, for the sake of all that it seems that we must strive to honor our own survivorship by remembering those precious lessons that came at so dear a cost.  We must strive to be better persons than we were before cancer.  We have been given a gift.  To not honor it is to compound the tragedy.

Ten years later I am still here.  I am still trying.

Take care, Dennis

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