For a lot of us this problem presents itself right at a time when you really have too many other things to worry about:  you are newly diagnosed with cancer.  Who to tell?  When to tell them?  For Dee, today’s guest blogger, the problem was magnified by the extra sensitivity surrounding her diagnosis of vaginal cancer.  Dee just started her blog in January at WHAT kind of cancer?
Please give her a visit.

Sharing your diagnosis….to tell, or not to tell

Having a cancer diagnosis, particularly a vaginal cancer diagnosis, brings with it the awkward position of either having to tell people what’s going on or trying to keep it to yourself.  In my case, I wasn’t inclined to broadcast to friends and family that I had cancer of the vag….so I told only those I had to.  Like my bosses, and my direct reports–both of whom would obviously notice the sudden departures from work for treatments.  The curse of being a workaholic is that everyone comes to expect that you’re always at work, so when you’re not, it’s somewhat conspicuous.  So in total, probably about 5 or 6 people at work knew I had cancer.  I gotta say I think it would have been easier if it had been breast cancer, or lymphoma, even bladder or colon cancer.  Anything but telling your co-workers (all men) that you have vaginal cancer.  Sharing that information was to me a curse worse than death.  So I snuck out when I could, never called in sick, and in general felt like crap and looked like shit for about 8 weeks. Some people asked what was going on; I dodged the questions and said something vague.
I should clarify–even those at work I had to tell–I never specified WHAT kind of cancer it was.  Just that it was a tumor that they could not operate on due to the proximity to the bladder. Which was true actually.  The V word would have made for a much more uncomfortable conversation — for them and me.
Of course my husband and daughter knew…they live here.  That said, we didn’t really talk about it much.  My teenager went from certainty that I was going to die to barely remembering when my chemo days were.

I told my sister, because she’s had close and personal experience dealing with cancer and cancer treatments before.  And because I trusted her and valued her opinion.  She in turn told my other siblings, nieces and nephews.
I was kind of pissed at first (and still am occasionally) but I realize that life is too short to worry about any self-imposed embarassment sharing this information brought with it.

My sister-in-law knew because she was here when my OB-GYN first called with the news about 9:30 one night…instant clue that something’s up. She ended up telling my step daughter many months later, who was hurt and offended that neither me or her dad had told her while I was going through it.

I never did tell my parents, even though others thought that not telling them was horrible of me. I just said…you don’t know my mother.

I’ve always been a pretty private person (insert some psycho babble about a dysfunctional upbringing here) not one of those ‘let’s get everything out in the open and talk about it to everyone who strolls by’ types.

I’m only sharing these examples and covering this topic in a post because I’m all about trying to help someone else who may be trying to figure out how to maneuver through this.  So my sagely advice on this topic:  tell everyone that means something to you.  Even if it’s embarassing, and even if you’re fairly confident that you’ll be fine in the end. If you don’t, you’ll wish you had, and at some point it becomes just too late to share because then they’ll be hurt that you didn’t tell them earlier.

I think perhaps the best approach would have been to just put it out there, ask for no pity, and move on.

- from

I received this interesting email recently “I’ve been blogging about my journey through metastatic rectal cancer, mothering young children, alternative therapies, and the spiritual/emotional crash course of living with this illness. I just returned in Feb 2012 from 5 mos of alternative therapy in China too.”

Rectal cancer is relatively rare.  It deserves a rare voice. ~ Shira Shaiman’s Blog

About Shira:

This blog is dedicated to the explorations of my time of healing. I am a happily married 39-year-old mother of two boys, Toby (born May 2007) and Leo (born February 2010). Shortly after giving birth to Leo I was diagnosed with rectal cancer, on my 39th birthday of all days. A bit of a shock. I had imagined the weeks and months after my second child’s birth quite a bit differently, but cancer had something else in mind for me. So here I am, trying to make sense of this interesting time of life. Writing about it helps. A lot.

April 10, 2010

I feel vulnerable, especially at night. After the kids are in bed and the house is quiet, a dark space opens up like a mirror to reflect what I’ve pushed down and staved off all day: cancer. Dear God. This time it’s me. And I want David’s arms around me. I want to wear him like a blanket. I want him to protect me from this or, better, make it go away. And so I tell him that I don’t want him to leave the house to go pick up that free garbage can with a lid someone was giving away up the street. I tell him I want him to stay with me. I don’t even want him to go downstairs, to be on a different floor. Me, who is usually so independent and strong. David has called me his rock. Now I am small. I am so tiny I can disappear and never again hear the words cancer or chemotherapy. But then I picture Toby’s electric smile and long dark eyelashes and I remember the weight of baby Leo’s warm little body nuzzled against my breast, his mouth agape and a few drops of milk dripping down his cheek. I breathe in his hair every chance I get. I tell Toby I love him all day long. I know I have no choice. This story has been set into motion and I’m already somewhere inside of it. Wave after wave hitting against me. Salt and cool water. Wearing me down. Polishing me smooth.

February 2012

I’m not saying that I am a hero of any kind, or that I have any enlightened wisdom to share with you. I think I am still somewhere in the wilderness, still seeking, still learning what it means to heal and therefore what it means to face death and to be alive and at home inside myself and in the world. Oh, how could I have been so obtusely blind to myself! This whole time in Asia that I have been immersed in cancer treatments I have also, and just as importantly, been unwinding the threads of my life to find that essential, perfect, shining core that exists within each and every one of us. As I prepare to go home, I realize that that’s all I’ve been trying to do since I arrived here, and on some level for a good portion of my life. My journey for healing is my quest for home.

When I look in the mirror now at my bald head, the image that peers back at me doesn’t say cancer or victim or the ravages of chemotherapy. I see warrior. I see mystic who has renounced worldly attachments. I see grit and edginess and a cool attitude. I see the shadow of new hair. I see the promise of rebirth.

~ from: Shira Shaiman’s Blog

Yet again we have another opportunity to follow someone’s blog from the beginning.  Andrea’s blog,  Cancer By 2 | A journey through cancer, was just started last month.  Though she was diagnosed in January with both breast and ovarian cancer. Andrea lives in Ireland but is not Irish.  She is 49 years old, is unmarried and has no family.  She writes with startling power as you will read in her recent post.

My attic room is dark and the air is so heavy, it seems to be streaming in rivers. I’m floating inside a capsule, in a surreal space, where everything, time and gravity, stands still and there is a marked absence of any perceptible sound or noise.
Hanging on to the limits of the event horizon.
My eyes are open but I can’t see anything.
My heart is beating but I’m dead already.

- ‘I have ovarian cancer’.

The feeling that overcomes me in those first few moments is traveling from a long way back in time, coded deep inside my DNA. It’s visceral, and brutally primitive. This is pure fear.
Terror.

- ‘I have ovarian cancer’.

My hands are trembling and I literally waver from head to toes. Literally. My stomach is fighting back and there’s a powerful urge to vomit.
I’m shaking like a leaf and I’m terrified, so terrified, because, you see, there is absolutely no question in my mind, no doubts about it.

- ‘I have ovarian cancer’.

Cornered and trapped, like a dying bird, I flutter wings, and hopes and thoughts and tears in spasmodic convulsions. I look up and I look down, desperately searching for an escape.
- ‘I want to fly out of my body!’ - I cry. ‘Let me out! I don’t want to be me anymore!’
But there’s no escape from the heavy, overpowering shadows that are encircling me from everywhere, pouring liquid pain and fire over me, and killing me down.
This is how the fear of imminent death looks like.
Broken wings twisting in absurd convulsions. Breathe in, breathe out, you, dying bird.
The fear of Death is indescribable, comparable to nothing I have ever felt before.
It’s paralyzingly irrevocable.
It’s absolute and final.
The trial of all trials, the end of all ends.
Death.

But there are certain types of death that are even more frightening than simply dying. The image of my mother and her poor, sad suspiring skull starts flickering in my mind.
This is Death by an Ovarian Cancer.
The horror of the living skull.

I instantly plunge into self-pity and start wailing and mourning.
- ‘Ah! No, no, no… Please, no, no, no!’
I’m choking on my tears and begging for a kinder end.
- ‘Please God no, don’t let me die that way! Let this be something else, not an ovarian cancer!’
But there is no God to listen to me.
And there is no one else here either. I’m overwhelmingly alone.
I suddenly crave the human touch, the warmth and comfort of a friend. Someone, someone out there, please talk to me, and even if it’s only pretending, take me in your arms, hug me and tell me that you care, that I’m not alone.
With shaking hands and tears rolling down my face, I pick up the phone and call my friend, Dana.
I can barely speak.
I cry and stutter and wail.
- ‘I-I-I have o-ovarian cancer!’
She’s stunned. She knows everything about my swollen lymph nodes and the bloated belly, but the news about an ovarian cancer takes her by surprise.
-’What are you talking about? What ovarian cancer?’
- ‘I – h-have – o-o-ovarian – cancer!’
I’m stuttering so badly she has a hard time understanding me.
- ‘Calm down, Andrea!’ – she tells me. ‘Calm down for a second and let’s start from the beginning. How do you know you have ovarian cancer? Who told you so?’
- ‘Go-go-google! I searched for my sy-sy-symptoms on Go-go-google!’
Slowly, piece by piece, Dana starts getting the idea. And she doesn’t like it a bit.
- ‘You mean to tell me that you’re crying so desperately now just because of a search in Google? No scans? No tests?’
- ‘I don’t need any tests! I know I have ovarian cancer!’
- ‘Alright, but how do you know?’
- ‘I j-just k-know!’
She’s not convinced. She’s logical and practical and needs facts.
For the hundredth time in the past 2 months, we start discussing my symptoms. The urgency to go to the toilet, the bloated abdomen, the pain when moving and the constant gurgling of the stomach.
But markedly, there’s one element that doesn’t quite fit in the picture.
The swollen groin lymph nodes.
On that subject Google is adamant : the list of ovarian cancer symptoms do not include enlargement of lymph nodes in the groins.
Conversely, an ovarian cancer is not listed as a possible cause for the swelling of lymph nodes in the groins.
Hence the irrefutable conclusion – according to preliminary research, an ovarian cancer does not enlarge your lymph nodes in the groins.

(Note to yourselves ladies:
Oh, but it does! Yes, it does!
An ovarian cancer can, and sometimes will enlarge the lymph nodes in your groins.
No questions about it, it did it to me.
And in fact, the swelling in my lymph nodes only went away, never to come back, many months later, after the powerful attack of chemotherapy.

That day in July 2010 I was a long way from chemotherapy and talking to Dana on the phone, I started feeling a little bit better.
Sillier too.
I mean, why am I crying so hard? Why the roaring tears? Just because of a search in Google? Isn’t that a bit premature?
Dana starts closely scrutinizing the list of ovarian cancer’s symptoms. One by one, she ticks most of them off.
- ‘Your belly is a bit bloated, but your clothes fit you fine. You haven’t lost your appetite and you have no problem eating. You’re not nauseous. The urgency to go to the toilet only lasted for 10 days, and it’s now gone. You’re not bleeding. And on top of everything, your lymph nodes in the groins are swollen!’
There’s only one conclusion she can logically draw.
- ‘Please stop crying Andrea,’ – she says, ‘you don’t have an ovarian cancer!’
And there it is. That’s all it took.
In among the cascading tears, hope, the eternal, forever lasting light, starts shining through.
- ‘I don’t?’
- ‘No you don’t!’ – she tells me. And her voice is kind and caring and makes me feel safer. ‘Please stop crying!’
She asks me if I want to come over and spend the night with her, and her kids and her family. But she lives so far away, at the other end of Dublin and to get to Tyrrelstown from Bayside takes long, long hours. I decline the offer and decide to stay at home.
She urges me to go to the hospital.
- ‘The doctor gave you a note for the Emergency Room in Beaumont Hospital. Go there as soon as you can! Go there this week, don’t delay any longer!’
- ‘I will. I promise’
But like so many other promises before, this one too, will get broken.
It will take me more than a long and twisted month, of countless questions and doubts, of contradicting self-diagnoses, ‘I have ovarian cancer’, and ,’no, maybe I don’t have ovarian cancer’, puzzling and ever worsening symptoms and delusional wishes, to finally limp my way through the doors of the Emergency Room at Beaumont hospital.
I’m giving cancer 45 more days to grow in peace and comfort. To multiply and invade, to shed its enormous, malignant cells all over my belly and form more and more ugly clusters of death, sticking menacingly to vital organs, suffocating them, and cutting their blood supply.
45 more days.
Ever closer.
Faster.
To Death.

~ from Cancer By 2 | A journey through cancer

We are replacing windows in our house.  Consequently my office has been off-limits.  My desk and “publishing station” had to be partially disassembled with all furniture pushed together in the middle of the room.  The website’s publishing schedule was also interrupted.

Last week I received word of a new blog by a breast cancer survivor just recently diagnosed.  As you can read below, her particular journey just began last month. Robyn Angel is really at the beginning stages.  I thought it would be interesting to give you a peek.  This is an opportunity to follow in real time one person’s experience from the beginning.  She writes with a certain energy and sense of humor.  I have excerpted here from two recent posts from Stepping Stones.

What’s in a name?

One of the secrets of life is to make stepping stones out of stumbling blocks. ~Jack Penn

This quote could have been the inspiration for my blog name… but it isn’t. A friend sent me this quote when she saw the name of my blog. Doesn’t it fit beautifully with what I’m doing here?

I chose the name Stepping Stones because that is what it feels like to me. As cliched as it sounds, it does feel like a journey, as though I’m on the shore of a lake and I see a stepping stone. I step onto it, and while I know there are other stones in front of me, I’m not sure which path will take me to the other side of this wide black lake. I can see the other shore, but I can’t get there from here until the next step presents itself and becomes visible. So for once I am NOT charging ahead. Instead I’m doing research on the many different choices I have in front of me and I’m pretty patiently waiting for test results, Dr. appointments and other answers to my questions whether by email to friends who have been on this journey or through blogs and other literature. I’m currently waiting to hear back from the ‘Breast Care Coordinator’ at Kettering, to see when is their next available ‘Navigating the breast Cancer Journey’ class. (I bet you $10 and a healthy boob there will be pink involved.)

Many of you have asked, “How are you feeling?”

While Dan remains cautiously optimistic, I am feeling VERY positive about this. I think that’s the way the roles are going to have to be. Dan needs to reserve a little emotional energy in case we get bad news, because really, he’s the one who will have to ultimately deal with the fall-out. I, on the other hand, must think of only puppies and rainbows and will fart butterflies.

Until I hear some horrible news, I’m going to assume all will be well.

Ok, but how am I feeling?

Ever since I got the call last Monday. I can feel that thing in there. It doesn’t exactly ache, or tingle, or itch, but I would describe it as more of an uncomfortable awareness. Just sitting here, my right boob feels normal, regular, typical in that I can’t really feel it at all. But the left one is screaming “HELLO!! CANCER HERE CALLING YOUR NAME!!!!!” I’m starting to hate that boob.

Which opens a whole other can of worms. I’ve never really thought of my relationship with ‘the girls’. Sure, they’ve been hanging with me for a long time, but we never really talk, you know?

I’ve always had an impressive rack. For a while, when I was young and foolish, they defined me. But now that they’ve done their job, (had some fun, fed some babies,) I feel like they really aren’t that important. So I’m really up in the air about whether or not to have reconstructive surgery after we part ways. I’d like to take up running again, sans the heavy duty cannon holder or be able to wear something backless or some of those cute halters.

Is this merely a cosmetic issue, or are there other factors I need to consider? Will I feel unbalanced once the weight is off my chest? Will I feel less feminine? Will people react differently to me? How does society see a boob-less woman? Will it be just as frustrating to find clothes that fit non-existent boobs as it is to find clothes that fit big boobs? Will I finally be able to buy a surplice top or dress?

Don’t ask me why… they just never fit me right.

I guess it’s time for me to start talking to survivors and reading other’s blogs. Feel free to message me if you have some experience with this. I need all the help I can get.

~ from Stepping Stones

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