Headed out for an evening with friends. Look closely and you can see the port still in the left side of my chest, as well as the catheter that runs up to my jugular. August 2013
It is truly bewildering how much can happen in the span of a year. Only twelve months ago I had absolutely no idea that I had five tumors in my right breast, or just how dramatically my world was about to get rocked as a result. When I see photos of myself from last summer, I marvel at my ignorance. I can’t wrap my mind around the fact that the woman in the pictures is so incredibly clueless to what lies just around the bend. It may be hard to understand, but I still feel shock and disbelief.
As I approach my one year “cancerversary” this September, it is all still pretty raw. I have several follow-up appointments scheduled over the next month with my various doctors. I have a mammogram scheduled for September 11, which is one day short of last year’s mammogram and ultrasound. That was the morning the radiologist asked me if I was alone and hugged me saying, “We can’t be certain until we do a biopsy.” When I think about going back there, I feel much of the same queasiness and anxiety I did then. My stomach flips when I see the breast surgeon’s number on my caller ID. Every time I saw those digits last fall they accompanied life-changing news. It sucks to have to involuntarily revisit so many memories and emotions I’d prefer to package up neatly in a little box and set ablaze.
You could certainly say that cancer looms over me, despite my efforts to “move on.” I am eager to believe it’s all over and that I’m totally cancer-free, but I know that it is really just too soon to tell. This first year or two is crucial, and I’m working hard to gain confidence. I am also all too aware that in spite of what folks want to believe, no amount of positive thinking or “right attitude” can guarantee cancer’s defeat. You can do and say and eat and believe all of the right things, and it can still reoccur. Last month’s passing of a beautiful, upbeat, positive young wife and mother that I grew up with is a brutal reminder of that. Also diagnosed with breast cancer at age 34, she only lived to see her 37th birthday. Nobody could have been more optimistic than she was. It is sickeningly unfair and absolutely terrifying.
The emotional and mental aspects of cancer have actually been far more challenging for me than the physical. Here I am, 6 months since the last of my 8 chemo infusions in February, feeling pretty well. I feel very fortunate to not be experiencing any long-term side effects at this point. My 36 radiation treatments were completed on May 8th, and I began taking the drug Tamoxifen on the 1st of June. My cancer is estrogen and progesterone receptor positive. That means that those female hormones work as fuel for my cancer. In fact, it’s quite likely that my tumors really took off during my two back-to-back pregnancies because of the hormonal flood. Tamoxifen is an estrogen blocker and a targeted therapy. The idea is that if you block the hormones, you cut off the food supply for the cancer and can lower your chances of recurrence.
There are a few catches. I have to take it for 10 years, whereas most women take it for only 5. The drug works to put you into early menopause essentially, but fortunately I’ve had very few symptoms. Chemo did not fry my ovaries as is possible, and if the Tamoxifen can’t block my levels enough I may have to have an additional surgery to remove them. In an ironic twist, the drug can increase your chances of ovarian cancer, which is related to breast cancer. It’s probably the smartest thing to do, but I’m in no hurry for that. I also still need to have my chemo port removed. It’s the weird looking metal disc that lies just under the skin of my chest on the left side, necessary for infusion.
Next on my list is the removal of my non-affected breast and the beginnings of reconstruction. From the start I knew that if I was going to have to have a mastectomy on one side I may as well do both. To me, they are a pair. What’s one without the other? If I lose one mitten I’m throwing the other one away, ya know? Ideally, it would’ve happened at the same time, but since my case was considered an emergency there was no time to do anything other than remove the cancerous breast. This has left me lopsided and bummed. I’d rather have none than one. Fortunately I have a prosthesis, which is basically just an insert that goes in a pocket in your bra. I affectionately refer to mine as the “foob”. As in fake boob. It actually looks incredibly real in my clothes and you’d be hard pressed to guess which is my real one. Yet, I still have to wear a higher neckline and certainly can’t wear a swimsuit. I’d like to say that boobs don’t matter to me, but that is bullshit. I am still a young (ish) woman and I don’t think I’m ready to give up on the normalcy, confidence and comfort that existed in my life prior.
Getting my cleavage back will be no small feat though. Due to my frame, weight, and extensive radiation I really only have one surgical option. I don’t have enough fat stores to make new boobs out of my own tissue, so implants will be a must. When you just get breast implants, they go under the breast tissue and on top of the muscle. When your breast tissue has been removed, the implants go under the pectoral muscle, but only after expanders have gradually been filled up with fluid in your chest to stretch out the skin. Sounds pleasant, right? I’ve been assured I will be in a world of hurt. I will also have to have a procedure called a “lat flap” as part of my reconstruction. This involves cutting a flap of skin and muscle from my back (latissmus dorsi) and “tunneling” it under the skin of my armpit, around to my chest so it can provide the extra tissue on my tight, radiated right side. This ensures that there is enough of a pocket to place an expander and eventually implant. When you have radiation it thins, damages and tightens the skin. This makes it very difficult to place expanders/implants without bringing some supple, healthy tissue to the site. Got all that? Google that shiz. It’s freaking amazing. Hopefully I’ll have a surgery date within the next two weeks. I’m aiming for the first of the new year, when I can get some help over winter break. I’m really not sure how I can be completely incapacitated for 4 weeks, unable to lift anything for 6 weeks, and still take care of my kids. I won’t even be able to care for myself, realistically. My mastectomy last October was a scrape on the knee in comparison. Regardless, depending on how long the expansion process takes I should be able to exchange the expanders for the implants in time for next summer. Yeah, bikini shopping!
I’m so thankful I caught this when I did. Any further delay would’ve likely had dire results. When I was first diagnosed many people would say, “Well, thank God you caught it early!” Not really comprehending that it wasn’t quite as early as one would hope. My surgeon said it likely started growing 5 to 10 years ago! After some debate between my docs, I was finally labeled stage IIB. It was that or IIIA, depending on if you view my tumors as one large tumor or 5 separate ones. There were small threads or “bridges” that connected them, spanning 8 cm from my armpit to nearly the nipple. Given the size of my cancer, it was a huge surprise that it had not spread beyond the breast tissue, with the exception of “micro-cells” found in my first lymph node. The next 9 nodes that were taken were clear. However, staging is really pretty arbitrary. It’s just a label and didn’t effect my course of treatment no matter what we called it. It’s unfortunate that mammograms are only given beginning at the age of 40. A mammogram likely could’ve detected mine back in my 20’s. Back when it actually was “early.” Most breast cancers seen on routine mammograms are so small that a woman couldn’t possibly even feel the lump yet. I don’t think there would be any good news had I gone on another 6 months without discovering a problem.
Meanwhile my hair continues to grow back quickly. It’s not the thick, stick-straight hair that I had before, but nothing in my life is really quite like it was before. My new, dark, coarse almost-curls are so foreign and unfamiliar, yet I am learning how to make it work. I’m pretty happy just to have hair. I’m actually am very fond of my little pixie and plan on keeping it for now.
Each morning I wake with the goal of choosing joy over resentment. I’m not always successful, mind you. By nature I am not the world’s sunniest gal and I have to make a concerted effort to stay positive. It’s been one of cancer’s most obvious lessons to me; to truly aim for a life of love rather than bitterness. There is something grotesquely beautiful about being confronted with your own mortality. It amplifies your emotions, both good and bad. It demands that you examine every facet and relationship of your life on a deeper level. It dangles the fact that tomorrow is not guaranteed to any single one of us over your head as a relentless reminder to LIVE! Cheers to making each day count!
Clownin’ round in nature