California Dreamin' (More Like a Nightmare)

Being diagnosed with cancer of any form is hard. You feel violated and helpless. And scared. Most cancer treatments require removal of the affected area, and in many cases, the affected areas are internal or otherwise unnoticeable to the naked eye. But just imagine if you had to have an arm removed... How much more devastated would you be? Sure, you could cover it up with a sleeve, get a prosthetic limb... who would know the difference? YOU WOULD KNOW THE DIFFERENCE. The lasting effects of cancer treatments leave far more emotional scars than physical ones. In my opinion, breast cancer leaves the deepest emotional scars because it attacks one's very womanhood. That reason is exactly why I was so upset by a recent article I read in WebMD Health News. The study basically said that fewer than one in three women eligible for breast reconstruction surgery following mastectomy for breast cancer undergo the procedure, according to a small snapshot from four counties in California. It further stated that women with private insurance were nearly eight times more likely to have reconstruction than women with Medi-Cal insurance, California’s Medicaid program, mostly due to the shortage of plastic surgeons willing to accept Medi-Cal’s lower reconstruction reimbursement rate.

EXCUSE ME?

So, in essence, California is saying that cancer doesn't discriminate, but they do? I'm not certain, but I imagine this snapshot is indicative of the national picture as well.

Reconstruction is an important part of the healing process, in my opinion. I have not yet undergone reconstructive surgery, but view it in my mind as a sort of "rite of passage" from victim to survivor. Allowing the cost of the surgery to deter a woman from feeling whole again is adding insult to injury, and is particularly offensive to me. Cancer doesn't pick and choose it's victims by their economic demographic, and surgeons who perform reconstructive surgeries shouldn't choose their patients that way either. New York State law mandates that health insurance policies providing medical and surgical coverage are required to pay for costs of breast reconstruction after surgery for breast cancer. That's the way it should be. Wonder why that isn't yet a nationally adopted policy? Ask any Health Insurance Provider. I'm sure the response will be... interesting, to say the least.

Early Detection and the Business of Health Insurance

I heard a commercial on the radio this morning touting the benefits of early detection in breast cancer. It said "early detection saves lives". That is very true. I am living proof of that catch-phrase. The commercial went on to say that it is "recommended that women over the age of 40 have yearly mammogram screenings".

WAIT!

If I had waited until I was 40 to have my first mammogram... well, I wouldn't have made it to 40. I, more than likely, would not have made it past 36 years old. I was diagnosed with Stage 3 breast cancer at the age of 33. I remember joking with my doctor when he prescribed the mammogram after manually discovering the mass in my left breast. I told him, "I'm too young for a mammogram! I'm not going to be 40 for another 7 years!" The results of that mammogram started the process of saving my life. Thank you Dr. Cooper.

Waiting until the age of 40 to recommend yearly mammogram screenings works against the theory that early detection of breast cancer saves lives, especially when women are being diagnosed younger and younger all the time. I have met women 10 years younger than myself who were being treated for breast cancer. The mystical age of "40" seems an unfair target (and much like a death sentence) for the younger spectrum of those suffering with the disease. Last month, I had a follow-up appointment, in which a mammogram of my right breast was required. The Explanation of Benefits I received for the visit showed that the cost of the mammogram would not be covered by my provider because my "policy provides coverage for mammography screening for women age 35 or over". At the time I received the mammogram, I was exactly 34 years and 329 days old. Considering that my provider knows full well that I have been tested, diagnosed, and treated for breast cancer, it seems ludicrous that coverage of the mammogram would be denied because of my age. That, sadly, is the business of Health Insurance and a very good example of why this country needs Health INSURANCE Reform. I have yet to dispute this ridiculous matter with my insurance provider, but I plan to. I just can't get past the absurdity of the circumstances.

BOOBLESS

I am now less than one month away from the end of my 6 month post-radiation healing window, which means in less than 30 days, I can technically have my reconstruction surgery done. I never thought I was going to make it this far. Looking in the mirror after my mastectomy, I never thought I would make it one week with only one breast, let alone six months.

I am 34 years old. My higher brain knows that I am a great, complete package and that I am more than the sum of my collective parts. Being honest with myself, however, I realize I am at that age, that brief time where things are at their pinnacle, right before they start to topple over THAT hill. Breast cancer threw a serious monkey wrench into the works for me. Cancer treatments seem to attack everything that are external symbols of health, well-being, and beauty. Chemotherapy took all my hair (head, brows and lashes, even body hair) and turned my nails, gums and tongue black. Radiation burned and peeled off my skin, leaving a dark, mottled scar. The mastectomy was the worst of all for me, though. In time, my hair grew back and my nails, gums and tongue returned to their pleasing pink hues. My radiation-burned skin healed, and the dark burn area has begun to fade. But my breast is still gone. The scar looks much better than it used to (thanks to a great surgeon and the radiation therapy, I've been told), but my breast is still gone. The mammary gland that once proudly nourished my two children is no longer there. I feel like half a woman. My higher brain knows that I should be thankful for just being here, now, cancer-free, and I am. With the help of my prosthesis, I can get through a work day without feeling self-conscious, and that is a great escape for me. But every night when I get undressed and I look in the mirror, I am reminded of all of my feelings of inadequacy. Let's face it, in the society we live in, women are expected to look a certain way. Mostly everywhere you look is pressure to uphold that image. Walking around with one breast isn't acceptable in "normal" society and I am not comfortable with it, so you would think that with my reconstruction clearance date approaching, I'd be overjoyed... but frankly, I am scared.

The idea of reconstruction is so... permanent. I am afraid of not being pleased with the results. I am not sure if I want to "go larger" (as I had originally planned) or stay the same size as I was. I am not sure if I should have a prophylactic mastectomy of my remaining breast and reconstruct both, or if I should just reconstruct the left. I am slowly realizing that, although I am past the urgent fear of dying, I still have SO MUCH MORE to deal with on this journey. I have already consulted one plastic surgeon, and am waiting to consult with another. First, before any decisions are made, I will have to have genetic testing to find if I am genetically predisposed to breast cancer. The result of that testing will make it easier to decide whether or not to have my right breast removed as well. So many things to do... I might as well get started right now.

Post- Premature Menopause

After starting chemo, my menstrual cycle completely stopped. I was told it was Premature Menopause, a common side-effect of chemotherapy. Although it was a little strange at first, I began to think of my bout with Amenorrhea as a little perk of my breast cancer treatment. I mean, who wouldn't prefer to do without Mother Nature's monthly gift? It was one less thing to think about every month, and, if I had to deal with the weakness and nausea from chemotherapy on top of cramps, bloating and irritability, I probably would not be here to write this blog... Not getting my period was a GOOD thing in my opinion. That is, until I met HOT FLASHES for the first time.

If you have never experienced them before, hot flashes are intense and often inconvenient. I can remember being on the bus on my way to the office, right under the strongest A/C vent, and breaking out into the heaviest of sweats. Dripping, pouring sweat... out the clear blue. I was sure everyone was looking at me, poor little instantly soaked girl... I would often hop off the bus at the nearest stop, no matter how far away from the office I was. At least walking, I would have a reason for looking like a sweaty mess.

These hot flashes, like my vanished cycle, continued long after chemotherapy ended. I never once missed Aunt Flo. I imagined, not counting all the other negative lasting side effects, that this is what life must be like in those tampon commercials where the subject is enjoying every possible aspect of spontaneous life. What? Me worry? I learned to deal with my hot flashes, from recognizing the initial tingle that would spread like a slow fire, to carrying paper towels in my purse. If I never knew it about myself before, I learned that I am very good at adapting to situations. Life continued on, past surgery, past radiation treatments, through my recovery. Then one day, 11 months later, Aunt Flo came back. Same day as my usual cycle, like she had never been away in the first place. The difference was that it seemed that everything I 'd been missing all those months had accumulated into a tsunami. Fantastic. The day she returned was two days before I decided to take a well deserved vacation. Rats. Oh well. 11 months without, and I felt like I was just learning how to deal with a period! On the upside though, the hot flashes stopped when Aunt Flo came back. Yay!

Because the type of cancer I had was fueled by my body's natural estrogen production, my medical oncologist feels that I would benefit from having my ovaries either suppressed, or, ultimately, removed. Side effects? AMENORRHEA, infertility, weight gain, HOT FLASHES... I need a minute to think...

Messages from Beyond

Two years ago today, my then 28 year old cousin Andy succumbed to Non-Hodgkins Lymphoma. We were very close as kids, only 4 years apart, and the loss shook me terribly. I wanted to spare him his pain and suffering so badly. He was a "good kid" and didn't deserve to go through that. I didn't know how to console him when the doctors told him that the cancer had spread to the extent that treatment was no longer an option.

I remember the day before he died, I had called his home, where he lived with his mother, step-father, and brother, to speak to him. I felt the desperate urge to let him know I loved him, but when I called, my uncle told me that he was incoherent and wouldn't understand what I was saying to him. My biggest regret is not insisting that my uncle hold the phone to my cousin's ear so that I could tell him what was on my heart.

The next morning, my oldest cousin called to tell me that Andy had passed away. I remember crying out and crumpling to the floor. My cousin was gone.

The very next year, my doctor noticed a mass in my left breast. The mammogram he ordered for me showed calcifications, not a good sign. As I was laid out on the biopsy table, I closed my eyes. I saw my cousin Andy, clear as day. I approached to hug him, but he pushed me away with such conviction that I immediately opened my eyes. I felt confused by what I had just experienced. I felt rejected, but at the same time, I felt a sort of peace and reassurance. I couldn't explain it very well in words. Three days later, I was diagnosed with cancer of my own. I chose to interpret the push as Andy's way of telling me he didn't want me there with him -- that I wasn't going to share the same fate. I had no idea of knowing then that I was going to beat Breast Cancer... but I knew I was going to survive. And I have. Thank you Andy.

Why I Am Blogging

I never in a gazillion years would have thought I would be blogging about my experiences. For one, I always thought a certain "type" blogged. More importantly, I figured nobody really cared what I was going through. I was wrong about both.

After being diagnosed with breast cancer in February, 2009, my world completely changed. My diagnosis completely took me by surprise. I suppose a large part was due to the fact that I was 33 at the time of my diagnosis, and felt very much young and invincible. I was diagnosed with Invasive Ductal Carcinoma, Ductal Carcinoma in situ (DCIS), and metastatic axillary lymph node, which in plain language means that two types of cancer were found in the milk ducts of my left breast and had spread to my lymph nodes under my left arm.

At the age of 33 I found myself, a mother of two children in a difficult long-term relationship, facing breast cancer treatment. I endured 16 weeks of chemotherapy (and lost all my hair), a mastectomy, and 25 daily sessions of radiation. None of it was easy, but for the sake of my kids, if not for myself, I had to keep going. I am now looking at reconstruction surgery and taking a daily drug to try to prevent the recurrence of this cancer.

Now that I have made it through the worst of it, I feel like I can share my insights, for anyone who is going through it themselves, or even for someone who is supporting a loved one fighting cancer. It has been a difficult journey, and it isn't over, but I feel like I have gotten used to the struggle, and that makes it a little easier.