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

Yeah, I know, I am at least three weeks behind.  A trip to Boston and adjusting to my new job have interrupted my routine.  I am just catching up on emails.  A number of new cancer blogs has surfaced.  Renn was diagnosed with breast cancer last October.  She writes below with humor and verve of an experience that is all too familiar. The Big C and Me

PERSONA NON GRATA

My bilateral mastectomy is scheduled and I’m at my primary doctor’s office on Monday to pick up a copy of my chest X-ray from a couple weeks ago. But they can’t seem to find it. Hmmm. I make a pre-op appointment for two days later and tell them they can give me the results when I come back on Wednesday. The nurse says great, we’ll see you then.
Since my cancer diagnosis, my husband has been accompanying me to all my doctor’s visits; but since this next appointment is for simple blood work, I go alone. And guess what? When I get there, they have no record of the appointment I made two days beforehand. And they have no approval from my surgeon for any blood work. And they still can’t locate the results of my chest X-ray. WTF???
Of course the receptionist asks who I made my appointment with. Of course I didn’t get the nurse’s name. This isn’t the first time I’ve felt this office doesn’t have a clue that I exist (persona non grata, anyone?) and this makes me very scared. I’m afraid I’ll fall through the cracks and I’ll get to the hospital and things won’t be in order and my surgery will be cancelled and my cancer will continue to grow and then I’ll die. OK, I realize this is catastrophizing, but I become so flustered by these thoughts that now I can’t remember when I was in the office to make the appointment they have since forgotten. Was it yesterday? Was it two days ago? And why was I even there then? For the life of me, I can’t remember. (I have chemo brain and I’m not even on chemo!)
Apparently there is some confusion over what kind of labs I need, and they have to wait for my primary care doctor to sign off on the order. “You can wait if you’d like. But it could take 5 minutes or 5 hours.” You have got to be kidding me! Do you really expect me to sit all morning in this waiting room filled with coughing kids a week before I have major surgery? I don’t actually say this, of course; instead I just passive aggressively leave the office, cursing the nurses under my breath. I reach the elevator with tears in my eyes. I’m not sure which doctor’s office is at fault here, but I’m going to get to the bottom of it. Like I even have energy for this crap!
I go outside and call my surgeon. His nurse says they faxed the lab request over yesterday. Great. At least now I know where the fault lies. I really like my primary doctor, he’s a brilliant man, but his office is SO busy and his staff so obviously disorganized and they don’t even know who I am and what am I going to do about all these details that I simply can’t control? I want to scream. Why does every single thing fall to me to follow through? Why can’t one thing go right? Preparing for surgery is a freakin’ full-time job. I hate this.
I call my husband from my car and start sobbing. (Who knew I would need him to come with me to get my blood drawn? Geesh. And the fact that I skipped breakfast for the labs I’m now not getting? Not helping.) But rather than give me sympathy, my hubby tells me I need to stand up for myself! WHAT?? He says, “Go back upstairs and demand that they do your blood work. You made an appointment. They screwed up. Make them fix it.”
Yikes. I can’t even catch a break with my own husband. Cancer sucks.
I don’t want to deal with this, but I know he’s right. So back in I go. But when the elevator doors open and the receptionist sees me, she quickly picks up the phone and whispers, “She’s back.” Oh great. They’ve all been talking about what a b**** I am. I sit back down in the waiting area, in plain sight of the snarky receptionist. I wait there for 25 minutes. No one comes out to help me.
My cell phone rings. It’s my husband checking on my progress. I tell him I haven’t made any, and start crying again. I’m not usually this passive (in fact, I err in the opposite direction: control freak) but this whole cancer thing is turning me into a vulnerable, fraying mess. This time, however, hubby offers to come over to the doctor’s office on his way to work and bring me a banana (how cute is that?). I tell him, “We have to switch doctor’s offices — this isn’t something a banana can fix.”
I hang up, get in touch with my inner warrior and approach the receptionist. “Look,” I say, “I just need to make a new appointment for my labs.” She quickly buzzes me back into the nurse’s station. Progress! I explain my story again to the one nurse who “knows me” (and I use that phrase very loosely). She again explains that they don’t know what labs need to be done until the doctor releases the paperwork. “We’ll call you when he signs it and you can come back then.”
“No.”

I’m shocked to hear this word come out of my mouth. Warrior Woman has finally broken free. I decide I’m done for today. “I want an appointment. For this Friday. At 9 AM.” She hands me an appointment card, just like that. I get her name.

And you better believe I’m bringing my husband.

The Big C and Me

The voices of head and neck cancer survivors are small in number but courageous in spirit.  This new voice is from a new blogger, and Englishman being treated in France.  Donald is just starting to tell his story, and an interesting perspective it is. Licking Cancer