I thought that this post would be a good way to start the year.  It combines sadness with hope, a place we often find ourselves in.  This is certainly true of those of us battling cancer.  It is true for those who cherish and love us.  And I can say it is true for we professional  caregivers who choose to follow this journey, experiencing sadness and hope month in and month out.

Dear Mom, I’m married.

Hi Mom,

It’s been a while since I’ve written. My last post, when I just got engaged, pretty much described everything leading up to the wedding. I survived it all and even had a great time. A lot of people have been talking to me about it, asking me how it went, so here’s the list of what I thought I wouldn’t survive – and what ended up happening:

• You won’t be there for me to tell you I am engaged. You weren’t, but I survived.
• You won’t be there to help me with the preparations. But Grandma came with me to be fitted for the dress the first time (the seamstress offered her a job), my baby sister the second, and my good friend the third. Shanainai tied it for me and everything. I survived.
• Your name will be listed as z”l (deceased) on my wedding invitation – or is it not supposed to be listed at all? I have no idea. A non-issue. We didn’t list any parents on the invite, we just made the invitation from us. That was easy. I survived.
• You won’t be at the signing of the Ketubah. Neither was any other female. If anything, you were there, but I wasn’t. I didn’t even know when it happened. Survived.
• You won’t be walking down the aisle. Grandma went with me instead. The rabbi suggested it, and I loved the idea. So did she. Definitely survived.
• You won’t be under the chuppah with me. Grandma was. But then again, so were you. I know it was you that made that wind blow and knock everything over. Definitely survived.
• You won’t be beaming down at me. Ever. No, but there’s nothing I can do about that. I guess I accepted it, so I survived.

The truth is, the  most stress I had about and from the wedding was that I was afraid of the attention. I was hoping no one would mention you when they saw me, and thankfully just about no one did, other than a few of the elderly. But I had that invisible “pretend you are someone else” wall up, and it worked perfectly.

In fact, everything went very smoothly, from the planning (which I hated, but I would have hated it if you were here, too, to be fair), all the way through the wedding. I had more offers of help than I knew what to do with, and The Boy and I knew what we wanted and wouldn’t let anyone bully us into something we didn’t want to do. Well, we did invite a few people I didn’t want to invite, but The Boy was right, it wasn’t worth the fight.

I had the sleeves from your dress removed, and the back opened up with a corset-type thing to tie it with, and the dress ended up being great. I would have preferred to be a few pounds lighter, but who wouldn’t… Dad’s best friend growing up actually asked me at the wedding if it was your dress – he somehow remembered your dress from 36 years before!

I’m so happy I got to wear it. There were a few times where I felt I  missed out on the choosing-a-dress part of the wedding, but the truth is it doesn’t matter – who wouldn’t rather wear their mother’s dress if it was as gorgeous as it is? There were times where I would suddenly think, I can’t believe my mom danced in this and ate in this and got married in this. I thought it would make me cry, but I loved it. By the way, I hope you didn’t take it personally that I changed clothes when we were dancing. I was just jealous of The Boy and wanted to be part of the t-shirt fun, too.

The wedding itself went by in a second and a half, like everyone said it would. I survived the family picture taking (mostly because people were already coming, so I just wanted it to be over), the reception was great, and the hike to the chuppah was a lot of fun. After a brief 10 minutes when we couldn’t find Grandma, she appeared, and the ceremony started.

It was the fastest 10 minutes of my life. I felt like an actress playing a part, just I was surrounded by people I love instead of random actors and stand-ins. At one point, the rabbi said that Jewish tradition says that 3 generations back come to visit at the chuppah, and that we have to mention your absence. I swear, he could have been talking about sauerkraut if you were to judge by my reaction. I can’t believe how calm I was. The only time a few tears fell down my face was when I heard Grandma sniffling beside me. Of course, The Boy is amazing and took  me hand the second he heard it, just to beam some extra strength into me (which worked, of course).

And then she asked when do we kiss already, so that was over.

The rabbi picked up one of the glasses of wine, started the first prayer, and then an insane gust of wind blew in and knocked everything over – the other glass, the ring, etc.

My reaction: Yey, The Boy broke the glass succesfully

The reaction of the 175 other people at the wedding: That was Talia’s mom.

Thankfully, I made no connection. I didn’t think about it at the chuppah, I didn’t realize it during the wedding, and only later when I got home, people started talking to me about it.

And as it turns out, everyone thought it.

So I’ve accepted it. Even though I am not mystical in any way, I kind of like the idea that you made a statement and said, “Ahem! I am here! I am in the dress and the wind and the glass of wine that just shattered on the floor.”

So the wedding went by smoothly, and honestly, it couldn’t have been more perfect, that is other than you actually being there. Everyone laughed and danced and ate and had a great time.

I waited a while to write about the wedding because I was waiting for a nervous breakdown. A week passed, another week passed, and another, and I was OK. I don’t know how. And then suddenly it was just over; Reports of the impending emotional storm were greatly exaggerated.

A few weeks after the wedding, I started feeling really weird. Not sick or anything, but just weird. After a few more weeks of weirdness, I decided to take a small test.

It had 2 definite lines on it. I am pregnant.

A few weeks later, the doctor was able to tell me exactly what day we conceived.

It was 5 days after the wedding.

On your wedding anniversary.

from Daughter of Cancer

Since I began this blog, I have always wrestled with the question of how to handle Guest Posts of survivors that are not doing well.  Early on I even considered whether or not to publish the names and URL’s of blogs of folks that have passed away.  Last Wednesday I offered the difficult post by Alli, who was struggling with the inevitable issue of quality vs quantity of the time left us when our disease rises up and begins to beat down our last defenses.

Now that I am working in a bone marrow transplant clinic and proudly wear my leukemia and transplant badges in order to give my patients hope, the editorial conflict is more acute.  I frequently had out Being Cancer Network business cards to my patients.

But after all Death is what we fear when we first heard our doctor say the word “cancer”.  Death is what we begin preparing for, at least at some semi-conscious level, in the days, weeks, and months after our diagnosis.  Most of us are familiar with the statistics of our particular disease.  Those statistics tell us that there are some that do not make it.  This fact comes as no surprise.  We only hope to not be included in those grimmer numbers.

There are lessons to be learned from every story of cancer, lessons to be learned from every stage and phase of our struggles.  In fact that is our reason for publishing Guest Posts in the first place.  Some lessons are dearer than others to learn.  Some posts are harder than others to read.  The author of the following post admits that.

One could argue that there is nothing noble in suffering, that there is little to admire in death.  And yet that is part of the transcendent nature of human experience – that meaning can be derived from both.  It is even popular to think that this is the special nature of dealing with those diseases called cancer.

Marjorie Walker has been writing as the Cancer Curmudgeon · Can your blog save your life? since November 2009.  She wrote the following post on July 1 of this year.  One week later the following was posted:

Marjorie Walker
22nd December 1938 – 8th July 2011

Marjorie passed away peacefully on Friday 8th July.

Margie was a psycho therapist.  Throughout her blogging career she thought a lot about illness, disease, death and dying with dignity. It is certainly worthwhile to peruse the archives of her writings.  You will also notice that her blog did not end that July 8th.  It continued on in memorial tributes by friends.

The learning from our life can continue on after our life, expanding to others who may be struggling still.  This is why we continue to publish at Being Cancer Network.  Marjorie’s thoughtful writing is a testament to the power of cancer blogging.

Take care, Dennis

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.