Welcome

If you've just arrived and are curious, or starting your own cancer journey, I recommend starting with the first post in June of 2009 and scrolling upward from there. If you need someone to talk to about your diagnosis, please feel free to email me at: cmicheleharris(at)gmail(dot)com

Oprah's O Magazine picked up my hormone essay, which serves as a nice epilogue to this process. You can read it here:

Oprah.com

Much love to those who saw me through.

Claudia Michele Harris

The contents of my letter to my government officials Amy Klobuchar, Al Franken, Keith Ellison as well as Myriad Genetics.

(This post has been updated to include Rep. Ellison's response.)



Hello Folks, 

 I am writing to you today as a breast cancer survivor who is fed up with being an insurance pariah. Myriad Genetics owns the rights to the BRCA gene test and charges $4000 when it should only cost $100-200 to find out if you carry the breast cancer gene. No, I did not have to pay out of pocket, my insurance covered my test. But as you all know these types of inflated costs are passed on to the rest of the public. It also one of the reasons why it is so hard for me to get affordable insurance now. Myriad, you have a monopoly, and are abusing it. I ask that you lower the cost and I am asking my representatives to look into this matter, not just for me but for other breast cancer survivors and the insurance paying public as a whole. 

 Thanks to all, 
Michele Harris

June 26, 2013

Dear Michele,

Thank you for contacting me about monopolies.  I am honored to hear from you and proud to represent you.  Since coming to Congress, I have been working very hard to advance my policy agenda based on four key priorities – peace, prosperity for working families, environmental sustainability, and support for human and civil rights.

A healthy market relies heavily on competition to keep prices down.  Competing companies within a market are forced to lower prices to entice individuals to buy their products.  When a market lacks adequate competition, prices increase and the customer is stuck paying high prices for goods that should be much cheaper.

Unfortunately, sometimes markets do not perform as they are intended.  Large companies can sometimes leverage their resources to undermine market competition.  At times, this can lead to monopolies or monopolistic practices, driving up costs for consumers and weakening innovation and the development of new products.

I support regulations that restrict monopolistic practices.  In order to keep our economy strong and at the cutting edge of development, reasonable regulations can ensure that sufficient competition exists for innovation, small businesses, and development to thrive.

Thank you again for contacting me.  Please do not hesitate to contact me regarding this or any other matter of concern.  You can sign up for our e-newsletter by visiting www.ellison.house.gov .

Sincerely yours,

Keith Ellison
United States House of Representatives

Plastics Make It Possible

Nearly healed from surgery at long last. Days after I wrote my last post, I grew another infection. Fever, chills, rashes at my incision sites. We’re all walking bacteria farms, but I appear to be an entire continent. Out of the four surgeries I’ve had in my life, three earned me a painful infection. My doctor’s take? “Maybe you should be done having surgeries.” Sobering. That fat graft from my thighs to build perfect breasts is looking a little dicey at this point.

My friend Jeanne sent me an interesting article about how breast cancer is getting a lot of attention on the back end (mammograms, insurance) when we should be doing more on the front end. The chemicals leaching out of microwaved plastic containers, cups washed in the dishwasher on high temps, hormones in meat, PCB runoff? As another cancer survivor says in her memoir, we’re victims of an ongoing environmental disaster.

I don’t want to be a victim. I don’t want to be seen that way. And I don’t want to be some Chicken Little either. But I can’t help but be concerned about the health of my children and staying around long enough to watch them graduate. Some days it seems everywhere I turn there are poisons.

This is all old news to some. I’m certainly not the first person to wring their hands. And it must be said that plastic saved my life and improved it. Catheters. Syringes. Implants. And so I am complicit. My pomegranate elixir comes in a plastic bottle, as does our milk and oftentimes the orange juice. The largest container of recycling in our house is filled with plastics. Why are we collecting this stuff, only to turn it back into the same problem?

Laparoscopic Assisted Vaginal Hysterectomy

Prepare to click away dear reader if you don’t want to know the ins and outs. But before you go, first let me tell you this. The next time you are a patient, remember to take as much control of your care as possible. It doesn’t mean be difficult, but rather challenge your doctors, ask for the outcome you wish to see. More often than not, they like the break in monotony. I told my plastic surgeon I didn’t want to be pumped up visit after visit to have big breasts, only then was I given a simpler option. I asked my OB surgeon if it was possible that I could avoid the six-inch incision through my belly muscles and he said he would try laparoscopy first. They prepared the OR for both options. Even the drugs that they give you can be altered. Most health-care programs are very open to customizing your treatment, you just have to speak up.

The Procedure Approximate time: 2 hours

There are three primary ways to have a hysterectomy: through the big honking incision (total hyst), through abdomen laparoscopy or through vaginal laparoscopy. In my case, my surgeon performed a modified version of vaginal laparoscopy. After two enemas and the intake procedure, I was fitted with an IV, a mask to put me out (last I remembered of course) and then a breathing tube. They inserted a catheter after that to keep my bladder emptying and ease recovery if they went for the total hysterectomy. On the operating table they slanted my body slightly head down so that my other organs would slide up into my upper torso (lovely image, isn’t it?). They also inserted air into my belly so they could move their cameras around in there. The metal instruments they put into each incision also have a cauterizing/cutting tool to do the work. If you Google the procedure, you will see plenty of photos of just how it is done. I had to stop midway through one video but hope to return to it when I can’t actually feel the remnants of alien probes rifling around in there.

Once they took a gander they discovered that the Zoladex shots had temporarily shrunk my fibroid so they would be able to perform the less invasive procedure. The Zoladex had also closed down much of the blood flow to that area so that made the work even easier. The doc was quite pleased. He said my ovaries looked all healthy and pert (lil devils).

He did manage to take my cervix and some of my uterus out through my vagina (pried open with gleaming metal handles called retractors, ouch), but because I’ve never had children my vagina was not lax enough to handle much more so he had to essentially take apart ¾ of my uterus and extract it through an additional incision in my belly. Still, the difference between the laparoscopy and the total hysterectomy is worlds apart when it comes to recovery.

I woke up with some acute pain that the nurses got a handle on in post-op while a few beds down a man lay mewling in agony. Poor guy, that hurt more than anything. Once in my room, the nurses were frustrated because I kept forgetting to use my morphine drip and didn’t want two pills at a time. I guess, after my last surgery, I was expecting full-on agony and it just wasn’t there. I was certainly terrified going into this, but by the time they pulled the catheter out I was like, “Is that all you got?!” I suppose after contracting a staph infection during my last adventure I should be more hesitant to bang the drum but seriously. I feel pretty good. The worst pain I’ve felt so far is the hangover migraine that the morphine left behind.

My procedure started at 7:30 on Thursday and I went home noon on Friday. It's Sunday. And here I sit jabbering away at 90% Ladiectomy with two healthy ovaries and a chemically induced menopause and the sort of discomfort one suspects might be alleviated with a 12-pack of Activa yogurt. And let me tell you what you may already guess: I am so happy to be alive, flashing hot and cold, that I could just cry.



In the image above, the incisions. The bruise is from my Zoladex shot. I will tell my grandchildren this is all from my adventures in the French foreign legion.

Something Borrowed to Carry Me Through

Don't know what's left to say about being deconstructed over the course of a year. So I'm posting work from my friend Mary Logue, mystery novelist and poet extraordinaire. She always sums it up neat and clean and beautiful at the same time.

EXPOSED

When you reach the longest day,
first day of summer and perfect,
the air clear and dry,
the wind making all the flowers

nod at you again and again,
when you reach this perfect day,
do you wonder which of all
the days you’ve lived through
was the apex of your life?

As the sun circles farther south,
do you begin to slide? Do you worry,
knowing you will never be here again?

Or do you give up and lie like a dog
happy on the swing in the porch,
your belly exposed and vulnerable
to all the days that will come?

—from Hand Work

(You can of course purchase most of Mary’s work at Amazon or request it at your local bookstore.)

Ramble On

Almost as soon as I spewed out that last post, my energy picked up and my outlook brightened. Perhaps I had turned a corner with my cold/flu thing, perhaps I experienced an out-gassing of hormones or perhaps the very act of writing was a sort of sloughing off the bad juju.

Anyway, I feel good. But that post remains for anyone to see and assume I’m in tatters. I guess if I want to honestly document this process I can’t delete it. Just more proof of how sideswiped we are by changes to our delicate physiology and that we need to feel a sense of purpose in life if we’re going to make it through.

Working on getting strong again for this next surgery. Going off the tamoxifen for a few weeks to prevent blood clots. My excorcism hysterectomy is November 12th and the doctors want to make sure I’m good to go.

You know what’s weird? When you stop getting your period. I suppose if you’ve been pregnant this does not seem weird but on some visceral level I keep waiting for it to come. There is a twinge I guess. Sort of like losing my 34Ds. They were kind of a nuisance, but they were my nuisance, you know? I wonder what I would have said a year ago if someone had said, hey, you can stop having a period, make your breasts smaller and firmer, lose weight, get free narcotics and all you have to do is look into the abyss.

Bet I would have said, hells yeah, sign me up!

Cloudy With A Chance Of Shoes

Last week I was up in the middle of the night, tossing blankets, stripping off my shirt and distancing myself from the various heat sources in our bed, and I began to think how un-depressed I was, how the other shoe had not dropped. We were dealing with my medical issues, had absolutely no work, living in a house filled with dust and exhaust from basement construction, the weather had gone all cloudy and cold, and yet I didn’t have an overwhelming sense of dread. I realized that I had had more anxiety at 32 than I do at 42. As if, once you’ve made peace with the big anvil falling out of the sky, all the other stuff is totally maneuverable.

Then I woke up with chills and a sore throat and one of those sand papery coughs. A week on, I’m still exhausted, I go to bed early and can’t truly wake up until mid-morning. I feel so useless and I absolutely hate that it falls exactly in line with the medical predictions. I don’t want to be depressed. It’s not my bag really. But I do feel as if I’ve lost the plot of whatever story I was supposed to be living. My family makes it better. They’ve been very understanding even though I’m essentially a part of the furniture, like a threadbare ottoman with a missing leg. I had only an inkling before this of how important hormones were. They are a lot of what drives us to keep reaching for those youthful aspirations however feeble. And I don’t mean to say that after menopause (or manopause) that we’re all somehow directionless. But that a gradual process is more like a door opening than one slamming shut.

Talk of menopause makes people uncomfortable. Something we shouldn’t discuss, or if we do, we shouldn’t speculate and say something unfeminist. And that’s fine. Women don’t want to be devalued after they pass childbearing age. Men find it icky and mysterious. My friend Mary G. says the whole concept of labeling menopause is silly and a way to subjugate women. Like, it’s not that big of a deal and she’s probably right for many of those who transition naturally. But the brain fog I’m in right now is making it difficult to even blog correctly. (My apologizes for that.)

What is the positive? What can the reader pull from this murk? Well, other than being thankful for the relative normality you may be experiencing as you read this, I guess that it's possible to wade through the fire without ENORMOUS incident. And that even in this mess of a year there is so much to marvel at. Yes the pills and shots are putting me through my paces. But without medical science, I would have never met Cheryl. She would have already been dead seven years from thyroid cancer. There would be no Cameron and Madeline, no duplex to house our little family and our business, no relationship with Cheryl's family and soon there would be no me.

But still we persist.