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

In addition to not writing posts, I have not been minding my emails.  Elizabeth wrote me last week to say that she has started a new breast cancer blog I Am Surviving.  I just got around to looking at it and liked the most recent post.  Here it is…

I Was Minding My Own Business When…

Maybe I should start from the beginning. I’ve always been good about having yearly mammograms- starting with baseline at 35 and then every year once I turned 40.

“Cynthia Chauhan has compiled an excellent and very readable book of essays on kidney cancer called “Incidental Finding”. The contributors are a mix of researchers and physicians from the Mayo Clinic and kidney cancer survivors who tell their own personal stories. Cynthia is making the book available without charge to kidney cancer survivors/caregivers who request it. A generous contributor is allowing ACKC to distribute the book without charge as well to residents of North America.

Cynthia, as well as being a kidney cancer survivor herself, is a clinical social worker in private practice in Wichita, KS. She has extensive experience as a group worker including support group work with kidney cancer patients. She is a member of a number of professional organizations including being on the Patient Advisory Board of the Coalition of National Cancer Cooperative Groups. She has also published in professional journals.

We thank Cynthia for making her book available to a broad readership. The more knowledge we have about our disease, the better we are able to fight it. The book is dedicated to Steve Dunn, who was the first and most eminent kidney cancer advocate until he died prematurely in 2005, at age 49, from meningitis. Steve was the creator of the CancerGuide website and the ACOR Kidney-ONC listserv.”

If you want a copy of the book, go to  Contact ACKC page and enter your name, address, email, and note “CHAUHAN BOOK”, and allow a couple of weeks for delivery.  (from Action to Cure Kidney Cancer)