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)!

Finding content for this blog has been easy lately.  Survivors just send stuff to me.  That is great because my new job working as a nurse in a bone marrow transplant unit at a large university health care system continues to drain my energies while at the same time inspiring me to more.  That should make a a nice post of my own.  Maybe later this week…

Today I received an email from Jen Luce.  She became an ovarian cancer survivor at the age of 29 in 2007.  She has been busy ever since.  She not only maintains her blog 2011: Don’t be afraid to jump , but also finds time to speak at conferences and write for other websites.  She says this about blogging.  “Cancer can be so very tragic, and it takes love, patience and support to get through it. Community became very important to me as I learned to heal myself from the effects of treatment. Picking up tools such as meditation, resources, meditation, and peer counseling, gave me the drive to share with others.”

How do you open your heart and get vulnerable?

I know that love and tenderness have been big topics for me this year, whether it’s been regarding a relationship I’m in which I am personally struggling with due to my past, or what I have felt is an imperative need in my life, or how much I allow myself to be open with others considering the hurt and pain I’ve encountered in dealing with cancer patients.

It’s interesting how much our past experiences denote our responses to current situations.

With regards to vulnerability, the breadth of relationships I have experienced with cancer patients and the wisdom gleaned have allowed me to really open up my heart, though it has been difficult to lose so many from this dreadful disease.

In fact, I must pay tribute to all those lost. This past week we have lost Caio, a 23 year old Osteo-Sarcoma cancer victim. I hate to say the word, but it’s really true. I know he lived with his cancer because of all the support he had, but I don’t think it’s right to live with a disease. I think it’s so unfair to cause so much pain to an angel, as he truly was one. He met everyone with such honour and appreciation of being, that it was impossible to not meet him with love. The memorial service that was held this past Friday was completely full. There was barely room for people to stand. His partner loved him dearly, and really showed this at the service. It was so touching. Several people shared their experiences, songs, poems and flowers, which allowed such a breadth of ceremony.

I’ve had a tough time dealing with his passing. Survivor guilt was never something I thought was possible, until I passed my one year cancer free mark. A survivor mentioned it to me as I’d never heard of it before. It’s a strange concept really; as happy as I am to be here, I’m so angry for those that lose their fight to this horrible disease.

There have honestly been too many to count during my journey post-cancer. I believe there is a post where I was detailing who and when people were leaving this dimension for another hopefully pain-free and peaceful one. I actually feel somewhat disgusted that I was chronicling people I’d met that I’d no longer be able to have relationships with.

I can’t be angry at myself for doing this though, it’s a human response to put things into context and that was my purpose at that time. It is no longer.

~ 2011: Don’t be afraid to jump.

Duck Pond - Boston

What great email I get!  One is from a Lynette Warner.  Her husband was diagnosed in the summer of 2008 with stage IV liver cancer.  Miraculously he is celebrating his third year of survivorship.  Their blog is called The Walkers .  They are just the fourth liver cancer blog on our list.

Also in my inbox is an announcement from Stephanie Lancaster who writes at Just My Current Perspective.  “My 67 year-old father, a lifelong competitive athlete and a commodities broker working full-time, was diagnosed with an aggressive type of brain cancer, in October of 2010. He underwent surgery and chemotherapy but died only ten weeks after the initial diagnosis. I am writing this blog to help organize my rambling thoughts as I try to wade through the grief.”

Questions

Nope, this is not going to be about what you think it’s going to be about; I’m not going to bring up questions like how did a very healthy person get brain cancer, how did the “Magic Bullet” treatment not work at all, what happened that caused his rapid decline at the end, etc., right now.  This is about a different set of questions.

From the time Dad was admitted to the hospital on October 23, 2010, every time a medical professional entered the scene, he or she asked Dad a set of questions as part of a check on his neurological status.  Sometimes the questions were more detailed and complex, but the basic ones were always the same:
*What’s your name?

*What’s today’s date?

*How old are you?

*Where are we?

And sometimes, a Bonus: How did you get here?

As I’ve mentioned, Competitiveness runs in our family.  For example, when my grandmother was mobile and somewhat alert in the nursing home where she spent the last few years of her life, she told us repeatedly (and on several occasions actually demonstrated for us) that she was the fastest person there on her walker and, later, in her wheelchair.

I don’t think Dad fully realized why these Questions were being asked of him on a regular basis, but, because of this Competitiveness, he did NOT want to answer any of them incorrectly.
The first few times they were asked of him when he was awaiting surgery in the neuro-ICU, he threw out guesses for all except the first one. I’m sure he could see the shock and disappointment all-around when he didn’t get the majority of them right.  That plus the Competitiveness equaled Fierce Motivation: Dad started saying, “I’ve got to start getting those damn Questions right!”
And so, like any good nerd/competitive person would do, we started a Study Group.  “Quiz me!” Dad said, over and over, especially when he thought the nurse or doctor was about to come into his hospital room.

I’m sure any of the medical people who suspected that quizzing or prompting might be going on thought it was because we were all in Denial that something was so wrong that Dad couldn’t correctly answer the Questions.  And maybe that was part of the reason, but, honestly, it was more the Competitiveness.

And so I coached him, just like Dad had coached me in so many training sessions when I was running competitively in middle school and high school.  Sometimes his answers were correct but in a veiled way that required explanation from one of us who knew him so well and knew what he meant; for example, the first dozen times he was asked about his location, his answer involved something about working out or swimming, as in “I’m where I can swim laps in a great pool.”

Admittedly, this seems like an answer that should have resulted in a Big Red “X” going into the chart, unless it was accompanied by the Assist:  The hospital was directly across the street from a very nice gym that was one of the places Dad went to train for the Ironman, including swimming in their Olympic-sized pool.  HE WAS CORRECT BY PROXY, and we wanted the record to reflect that.
The other question for which he needed back-up when it was posed to him the day before his surgery was the Date Question.  He repeatedly said the date was “10-26-43,” which seems like material for another Big Red “X” until it’s put into context:  that was his date of birth; it was his birthday that day, and, instead of saying the month, day, and year that it actually was, he was substituting a rotely-learned year, one that he had written countless times over his 67 years.

He eventually got most of them right, at least when we provided the Assist, except for the Bonus Question, which he was never really clear on.  But then again, neither was anyone else, so let’s just say that one doesn’t count.

~ Just My Current Perspective

This notice came to me in May – I think I was in hospital at the time.  Meg is a photographer and a breast cancer survivor.  She just started her blog last March.  I have excerpted a portion of a recent post for your edification.

Last Wednesday, we celebrated Mike’s Uncle Johnny’s life at his funeral service and burial.  It was a very nice service and although the circumstances weren’t ideal, it was nice to see all of Mike’s family.  Unfortunately, coming from a pretty big family as well as marrying into a big family means that I have attended a lot of funerals in my twenty-nine years.  But, this time it was very different.  Sitting in the pew next to Mike at the gorgeous Shrine of the Little Flower Church, I was reminded of our amazing wedding day in that very same place – the absolute happiest day of my life.  At the same time, I couldn’t help but think about my own death and how one day, my own funeral will take place in that very church.  I by no means consider myself dying, but when you are diagnosed with Stage IV cancer and told there is no cure for what you have, it is nearly impossible to not let these thoughts creep into your mind.  I knew attending a funeral would be difficult for me, and it definitely was.  It just hits a little too close to home right now and I couldn’t help but think of what that day will be like and how it will possibly arrive decades earlier than I ever thought.

I wish I could tell you I didn’t think about these things.  But truth be told, I think about it way more than I would like.  Facing your own death is such an overwhelming, all consuming feeling – it feels like a tidal wave of grief and sadness, where despite your best efforts, you can’t seem to find the surface to catch your breath.  It is something that I have obviously never come close to experiencing before and a feeling that I can’t even put properly into words.  It gives you an entire new outlook on life – what’s important and what’s not – and how to cherish the time you are given.  I think we all assume we are automatically given a lifetime of 80+ years on this Earth.  The truth is, nothing is promised to any of us and a long life is not guaranteed to anyone.

There are times when I still can’t fully wrap my head around what is happening.  And if I have made it three days without crying, I consider it a success.  I am truly not afraid of death, but the thought of leaving Mike, my mom and the rest of my loved ones before I am ready, just breaks my heart.  However, I do my best on a daily basis to use the time I am given to live my best life, to tell the ones I love how I feel about them, and to fully appreciate every blessing that is given to me.  That is all I can do, because the alternative is to curl up in bed and never climb out – which has never been, nor will it ever become an option for me.

Sorry for such deep and heavy thoughts today but these are things that I think about a lot.  I have shared some pretty difficult, intense and emotional conversations with Mike, my mom, and some of my closest friends and I always end up feeling better after releasing these thoughts to others.  It’s incredible how isolating this can feel sometimes because not many people can say they know how you feel, but that’s all the more reason why I am so grateful for all of you.  Your love and support truly gets me through those tough times and you have no idea how much that means to me.