Cancer – Quantity or Quality? – guest post

NOTE: a reader notified me that he was unable to leave comments.  The “Register” option has disappeared from the “Meta” sidebar section.  I don’t know why.  No one can “Log In” because no one can register.  I changed my settings so that you do not have to login in order to comment. Hopefully this will work.  If we start getting hit by spammers and bots, I may have to look for another solution.  Currently we block hundreds of spam hits every week.   Dennis

I sometimes think that we expect our cancer bloggers to lift us up, to make us feel more courageous, to point out the best parts of bad situations.  But anyone who has been through it, anyone who has battles the Beast knows that for every transformative moment, there are at least a dozen dismal and desparate ones.  My friend, Alli, wrote her post during one of these down reflections.  The reaction of her family and friends prompted her to take a defensive stance – as if dealing with cancer were not enough of a challenge.  Alli is a well-known blogger in the community.  She writes at Life In Transition.  Her original and frank post about quality versus quantity is followed by her response to the first post’s negative feedback.

Quality vs Quantity?

The day you receive the diagnosis , you have Breast Cancer life after that is never the same. Everyone takes the news differently. Some fall apart, others will claim the news was a wake up call inspiring them to change their lives.  Others like my self pure fear at the unknown outcome, never being certain how things will be in our futures, how long that future will be and if we even have one! You read everything you can get your hands on your particular cancer. You want to know statistics cure rates how long will I live, what the different stages signify..Your mind gets overloaded on Breast Cancer information, and it still isn’t enough. If it were possible you would read every single detailed  paper written on your type.

You begin your roller coaster ride of treatments beginning with surgery, you have your breasts removed told that there was no other option especially if there is lymph node involvement.

Chemo is definitely not fun in fact it is the worst shock your body endures. Having poison pumped through your veins. You hope that the cancer is destroyed, in the process the treatment doesn’t kill you first. You still do it because Chemo is the only “REAL” hope that will keep the cancer from spreading. Or so you are led to believe. Of course there is radiation but many times radiation is over used and not enough clarity is given before you begin treatment . How it will burn your skin leaving blisters as though you sat out far too long in the burning sun. Of course we are told repeatedly to avoid the sun because it can cause Cancer well so can being over radiated. One of my dearest friends is proof positive having developed a Secondary Cancer on her Clavical a direct cause from over radiation. I decided to pass on that one!

You do what you are told for these months of treatments. You are told you will be fine,  you expect to bounce back almost immediately. Ok you lose your hair, but no one mentioned your fingernails coming off or the other side effects like Neuropathy that may become a permanent condition of Nerve damage from Chemo.. You will pick everything up from the point you stopped.  It doesn’t quite work that way. In fact you are lucky if you are able to do a small amount of what you used to do…You are not told of the  amount of fatigue you experience.The ups and downs….

We are told if we are Estrogen positive there are “Wonder” drugs that will help in the prevention of a recurrence.  We take them . Then it starts, the side effects kick in. You are going to be Superwoman, you can take a little pain but the little pain turns into a bigger pain  until it becomes so debilitating you can barely stand. Climbing out of bed putting pressure on your ankles, trying to stand up and walk expends so much energy because all you can feel at that moment is  intense pain shooting through your bones…  You tell your Oncologist he looks at you as though you are the only one having issues.that it is uncommon, you almost believe him .. You try a second drug  a third. One has different side effects that affects you differently from the others. You try another one it is in the same family as the first, you are told in advance you may have the same side effects. OK so why prescribe it? Essentially all these drugs and treatments are to buy you more time. Once you have gone through treatments  you  come to the realization there is no cure for Cancer. It is still there dormant somewhere in your body..

Your thoughts turn to a different place. One that you would not even consider had you not had cancer.  It’s a question a cancer patient will ask himself over and over again. We don’t dare tell our loved ones – at least not yet. Is it the Quantity of your life that counts Or is it the Quality?

When you know your options are limited.   Your bones and joints are so painful. The base of your spine feels like someone dropped kicked you.  Your knees ache so badly you feel like a ninety year old.You even wonder in some circumstances if death would be kinder option  than going through endless days of hurting.

Of course we want to live!!! This is such a complicated situation..  However if the quality of your life is reduced to living in constant pain, do you continue with the drug therapy or do you stop consider the QUALITY of your life? Enjoy being pain free for what ever time?

Right now it is still merely speculative  that without these drugs  we are leaving ourselves wide open to something worse.  This is only because we are told this by our Oncologist. They themselves don’t know. I have asked my Oncologist several times each visit can you guarantee that I will not get a secondary cancer by taking these drugs??  Response:: “There are no guarantees”! Then why are you scaring women to death?? We are terrified if we don’t take them fearing that ugly “C” word!

I have been doing a considerable amount of reading various  reputable  web sites where women have stopped taking Arimidex, Femara, Tamoxifen, several have surpassed living past the time  key they were given.They are living a life without pain..

Could it be with a change in diet, habit include  peaceful thinking, low impact exercising meditation could be an answer for some of us?

Of course you will have those opposed simply on religious grounds that it is not our choice to make.  They will oppose you every step of the way. Quantifying your life,  only GOD has the right to decide how long we live. What if you are an Atheist?

Before being diagnosed, before all your treatments, this question would never even come up in a conversation or  in your own thoughts…..

Cancer patients are always going through insurmountable guilt. You feel guilty for becoming ill. You feel guilty because you can not maintain the way you were before Cancer picked you as  a home.  You feel guilty because you feel that you failed the expectations of others, you should be positive, positivity will  give you a new lease on life. As long as you keep smiling……You feel guilty because sometimes  that’s impossible….

We are facing the biggest dilemma of our lives .It will directly impact  everyone within our close circle of family and friends.  Is it selfish to stop taking something that causes a body so much discomfort?  Is it  wrong to want to enjoy our lives relatively pain free even though we know our time may be limited?
Enjoy a quality of life you may not have otherwise?

Someone went so far in saying stopping your meds  is a form of self-induced Euthanasia..Again we do not have scientific proof or otherwise taking them or not will make any difference No Guarantees remember!!

It is so difficult to try and come to terms with. Along with being complicated. You have the tendency to flip flop back and forth..
In as much as we might not want to admit it, I’m sure I’m not the only one who has thought about this.

Funny thing is, there are hundreds of us if not thousands  on these drugs who are suffering  from severe pain.

I can’t understand how Oncologists can be so ignorant en mass….dismissing their patients nearly accusing them of be hyperchondriac yet have no qualms prescribing narcotics to suppress the very pain many claim  is non existent.

Again I am going to harp on the millions of dollars that are collected through Fundraising . Why are  some of these funds not directed towards finding a  way to alleviate the  side effects?

Or are we as women that expendable?

Wrong Wrong Wrong!!

I have received a lot of negative feed back from family & friends regarding my recent post of Quality vs Quantity.
I have been ostracized by friends saying that my motives are not only selfish, self serving and not well thought out, but I didn’t give any thought to anyone else except myself.

Well I’m sorry about this but “NewsFlash” it is about me. Am I being selfish? I am  needing to make some clarifications here.

First and foremost I am not planning on any Dr Kervorkian  methods. Or am I planning a trip to Europe and not come back.. This isn’t what it’s about. It’s about finding a ways and means of getting through this without being in continual pain. Perhaps finding a complimentary therapy that is pain free. I admit I was extremely pissed off at certain individuals calling me selfish. Ok Where were you when I called asking for a little help during the times of my chemo? Even asking to be picked up and dropped off at home when done. I wasn’t driving after my sessions.I had to take a taxi Where were you when I asked if Adam could pop over for a bite to eat. Not because we didn’t have food because he needed some comfort from others who claimed to love him..For a 16 year old he suddenly was thrown into a world he wanted no part of but was there through it all.  Sometimes I get the impression that to prove you have cancer  people  expect you to be in pain, that’s what Cancer people do!! BE IN PAIN!! Seriously!! .I’m not about to compare who is more selfish because it’s ridiculous! This is not about selfishness at all…This is not a contest!  If these pills didn’t create such horrendous side effects I would be more than willing happy, elated, and any other cheerful descriptive word to describe my “gratitude”  and take them for 10 years if need be.I would take them forever if needed… My point is these pills may be the wonder drug but seriously how many women  complete the regime with out extraordinary side effects.  We don’t have any proof that these pills work! How often do we read women switch from one to the next because they stop working, developing Mets anyway??

I am well aware of the potential consequences……


All I am trying to get across that there has to be a better method in treating women like us.

No worries please…….I’m not about to go anywhere for as long as I possibly can……I have things to do places to visit and Tigers to hunt (with my camera of course)!

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Cancer – Quantity or Quality? – guest post — 1 Comment

  1. i hear your frustration and pain about treatment that diminishes quality of life; no one should fault you for feeling trapped, in pain, and despairing of options which you find repulsive, with no garuntee or proven success rate. even those who’ve walked in your shoes do not have the right to judge you. my hope is that through honestly and courageously expresssing what you have, will help lead you to interventions, alternative, or not, that will offer comfort, healing, and a sense of peace. many others feel these same things, some are willing to “wage war” albeit only to live in misery, without questioning as you have quality of life issues. until more women with bresat cancer say, “enough is enough” and demand clinicians find a way to offer treatmet that can be tempered with less toxic measures and effects, nothing will ever change. not everyone is willing to be a sacificial “warrior” if it means not being able go for a day or an hour being so debilitated. and i hate all that pink stuff, too. i hope you find your way, and send warm hugs to cheer you on.

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