My daughters are participating in a summer violin camp for 9 days. It’s a 30 minute drive on the 202 West to the 101 South. I’m always on the 202, but haven’t had to drive the 101 South much. I don’t like it. Drivers speed and change lanes quickly. They all know where they’re going and they’ll ride up on you if you hesitate for even a second.
I woke up in the middle of the night last night and couldn’t sleep for over an hour. I was thinking of the 101. But this time, I remembered something.
Seven years ago, I had to take the 101 South to a high school twice a week, after work. I was completing my M.A, in Educational Leadership and I was in a night class. I had just been diagnosed with early stage I breast cancer and had a radical mastectomy. I was determined to finish the degree. So I drove to my class with tubes coming out of my chest. The tubes drained excess fluids where the tumors used to be. My chest was tightly bandaged and no one in my class knew what was underneath my shirt.
So my fear of this route was not so much the traffic, but old memories. The fear of infection, disfigurement, recurrent cancer… I had those thoughts during my drive. I mourned my life pre-cancer. Here is a post from that time.
My insomnia occurred on the seventh anniversary of my radical mastectomy.
Driving today, I felt much better. The apprehension was gone. Sometimes, just identifying the cause of one’s jitters and meeting it with compassion (not over-analysis or sentiment) can be enough to overcome it.
Seven years ago, I was diagnosed with early stage I breast cancer. I had the cancer removed (a radical mastectomy) and breast implant surgery at the same time. Actually, I had expanders put in when they removed all of my breast tissue. For those of you who don’t know what this means, basically, expanders are hard balloons that get placed UNDER your chest muscles and saline is injected every week or so to create space for your implants. This is a very painful procedure for the entire duration until the expanders are replaced by silicone or saline implants.
Six surgeries later, I went from a 34A/B to a full 34C. It felt like The Reward for all the pain that accompanies a cancer diagnosis. Why so many surgeries? One of my suspicious masses was too close to my chest wall for a needle biopsy, so I had to have a surgical biopsy. I had a defective expander (this is very rare, I am told), I had an infection; I had a defective saline implants and then one of the surgeries was because my doctor thought silicon would look better than saline.
Did you know you’re supposed to replace them every ten years? So that means at 50, 60, 70 and 80 (should I live that long!), I need to replace the implants.
I’m thinking that perhaps, at 60, I may opt to remove the implants altogether. Will I be courageous enough to do that? I live in Arizona where it’s 100 degrees Fahrenheit for five months of the year. I have a pool. I like to wear a bathing suit. I know there are inserts you can wear, but I’ve heard stories of them escaping your suit and floating in the pool.
In any case, these are the issues involved with breast cancer and reconstruction. I am grateful to be living in these modern times with amazing technology. In the 1800s, breast cancer was only treated when it manifested itself physically (really, too late for treatment) and they had mastectomy surgeries without anesthesia. The ladies just bit down on a bolt of cloth while the surgeon used a hot iron to cut it out.
Every green thumb gardener knows that her garden needs rich soil in order to grow bright, brilliant plants. Compost enriches soil but it is stinky and takes time to degrade and cultivate. The compost of my life’s garden (thus far) consists of (but is not limited to):
Kids taunting me with “chink” when I walked home from school
Every grade I ever received other than an “A”
my first heartbreak
the deaths of my grandparents, sister-in-law and friends
breast cancer and the six surgeries that followed
every awful job and boss I ever had
every workout that pushed me to the brink of insanity
the police officer at my high school football game who hatefully asked me if I speak English
scooter/car accident right before my wedding (I had to wear a leg brace under my wedding dress)
my mentor’s suicide
Let us not dwell on our past, but let us celebrate our survival. It is pain and loss that molds us into the strong people we are.
For background, you can read my posts during my treatment and the recovery. It’s been an amazing journey, for sure. I’m humbled and a bit sheepish to even say I am a cancer-survivor for I did not have to endure chemo or radiation treatments. However, I do believe I can help others who have been given a cancer diagnosis, because I understand the shock and all the stages that accompany it. I also had a rough reconstruction process which included infections, a defective implant and 5 surgeries.
Anniversaries are a great time for reflection. Looking back, am I stronger now? Less materialistic? Grateful? Kinder? I believe I am. I know I’ve made a concerted effort to be those things. I definitely know the importance of living with presence and that is why I’ve been writing about that so much in my blog. Today is the only day we know we have. Yesterday is over. Tomorrow has yet to arrive. So cliche, but true!
I am blessed to have a healthy, wonderful family and a career I love. I have an opportunity – every day – to think, be creative, and write.
For all my women friends out there (those I have met and those I have yet to meet) – for you who are handling a personal struggle challenge: you can do it. You can and you will overcome. Take it one day at a time.
Driving to Phoenix for my oncologist appointment, I find myself trembling. My heart is beating faster and I think I really need to cut out the caffeine.
The waiting room fills me with the usual dread: elderly people with scarves wrapped around their bald heads, the walking canes, wheelchairs and bandages. I want to shout, I’m not sick! I don’t belong here. At the same time, I know it has not been that long since I was tightly wrapped with two drains coming out of my chest, and expanders under my chest muscles.
I can’t forget and I shouldn’t.
A woman in her late sixties with a silky Louis Vuitton scarf wrapped around her bare head walks slowly. Her husband holds her arm by the elbow with both of his hands. They walk to the restroom and then to the doctor’s office. They take each step carefully.
I’m called in for the draw.
The room is small and crowded with three chairs. The chairs have planks like small school desks for arms to rest on.
Did they take your lymph nodes?
She raises both eyebrows.
I add, Not all of them, just a few…you know…for the biopsy. I am rambling.
Which arm shall I use?
I lay both arms out for us to assess.
She chooses my left arm.
The room is freezing and my trembling has turned to shaking.
“Are you OK?” She is concerned because I look away. I know what’s coming. They can never find a vein. They never find it without moving the needle all around.
She wiggles the needle. I take a peek. “See, I’m trying to get that one.” She points to a vague blue line. I nod.
After many apologies, her wiggling and my squeamishness pay off. Two vials fill quickly. The blood is a very deep red. I visualize only healthy cells in it.
Then comes the meeting with the RN.
She wants to hear how I have been doing. She wants to know how the Tamoxifen is working. I remind her I have been off of it for 9 months. I had told the doctor that it made me feel suicidal. He had given his blessing, proclaimed me cured anyway….but he didn’t put that in his notes. The RN appears embarrassed and adds that to my file. I sigh inwardly.
No cancer in your family? No.
So strange, you got it so young. I nod in agreement. It will always be a mystery.
She asks about any new developments. Concerns. I take advantage of this opportunity.
I’ve had what I’m sure is a hamstring injury. Or bone cancer, I laugh weakly.
Is the pain intermittent or progressing?
Her shoulders go back, her eyes get wide and she says in a soothing and authoritative tone:
Bone cancer is extremely painful. The pain gets worse and worse. ALSO, it is extremely rare for breast cancer to spread below the groin. Extremely rare. It sounds like a hamstring injury.
She recommends a heating pad and a Styrofoam roller.
I am slightly relieved. Still…
She sees my concern.
If you want, I can order a bone scan. For your entire body. Not because I am worried, but because you are.
This is so generous of her!
This sounds thorough. This sounds like something I want. This will increase my chances of celebrating my 20th, 25th…heck, maybe even my 40th wedding anniversary. This will increase the chances of holding my grandchildren someday.
If I am developing a cancer that is NOT bone cancer, would that show up?
No, not in the bone scan.
Hm. I realize how crazy I am getting. I want a full body MRI. I want a full body bone scan. I want someone – someone who is an expert with an immaculate record – to tell me the cancer is gone and will never come back. But there are no guarantees. I don’t want to obsess over every achy muscle…over every itchy mole. The testing could go on and on and in some cases, actually increase my chances of recurrent cancer.
The RN tilts her head and smiles. I exhale.
Tell you what, why don’t you try the Styrofoam roller and heating pad? If it doesn’t get better, call me. Call me any time.
This sounds reasonable. And generous.
I am to return in six months.
I walk into the sunshine. It’s not as hot as it has been. I’m excited about the new season as I get in my car.
Tonight, I tucked Ava into bed and whispered, “How about tonight you don’t suck your thumb?” She replied in her snotty pre-pre-teen way, “Yeah, that’s gonna happen.”
She reemerged from her room to whine and half-cry that she has a canker sore. Willey jumped from his chair to give her a swig of Listerine, coaching her to swish for as long as possible. She whimpered in pain. Then he swept her up in his arms and flipped the light switch off with her fanny. “You can turn the light off with your butt.” She giggled as he carried her to her bed.
I’m sitting in bed, typing, with an ice pack on my chest. I had my fifth (and final, I swear!) surgery Monday. It’s been almost one week. I felt a swelling and bruising start today and basically freaked out because the last thing I need right now is an infection and to go back to Dr. Parson’s office for drains. That would be a major bummer. This surgery was to correct some positioning and to give me “nipples.” It went well as far as I can tell. It will be a resounding success if I keep infection at bay!
During this summer break, we took a vacation to Legoland. It was just what we needed: mindless fun. Ava had her first roller coaster ride and Josie rode mini-cars with her sister, both earning “drivers’ licenses.”
In addition to this fun, I worked all of June, teaching remedial English to incoming 7th graders and training for my new Ed Tech job. The teaching was challenging. How do you work with 12 year old students who can’t spell “dirt?” How do you impress upon these kids that they need to do their best ALL of the 15 days of summer school, not just two or three? How do you retain your cool factor while admonishing them for eating Doritos and candy for breakfast?
I’ve also taken this time to address dental and medical appointments for the girls. Ava is starting to show an overbite as well as what orthodontists call “overjet,” which is caused by her night time thumb-sucking. I want to do the right thing. I want to purchase an appliance if that is what is necessary. I know she will stop sucking her thumb if her thumb is met by a row of metal on the roof of her mouth. But I am mourning for her at the same time. She has always sucked her thumb and it brings great comfort to her. Her thumb is her best friend. It’s time for her to find security in something else, but what? Peaceful thoughts? I wish I had her equivalent of the thumb…something that brings me instant calm and repose.
Security is a state of mind. Sometimes, in the deepest, darkest corners of my mind, I wonder if I still have some residual cancer. Did they get it all? How will I know whether it’s back? I want a 100% guarantee that I will remain cancer free forever. I want to know that Josie and Ava will always be safe and happy and employed. I want to know that Willey will always be healthy, too. There are no guarantees. There is only the opportunity to shed light on the dark corners of my mind with the joy of the present moment. When we are fully present in the moment, there is no room for fear or worry.
Hubby is singing “Blister in the Sun” and now I can’t get it out of my head. That is what he does lately: sing songs, fill my head with repetitive, nonsensical lyrics and then leave the room.
I haven’t written in several months. Now that I am publishing my “blah”g, I’m sure you’re expecting BIG news. Something grandiose in a bad or good way. I am sorry to disappoint. I’ve just been busy with life: completed my MA coursework (yay!), completed my 8 hour state exam (yay!) and recovered completely from breast reconstruction (double yay!) Pardon the pun.
Here is the health update: I’m taking Tamoxifen daily. The hot flashes and back aches have mercifully subsided. I’ve completed my surgeries and have my permanent chest (for the next 15 years anyway, I’m told that implants need to be changed out every 10-20 years). I went from an “A” to a “C.” It’s both great and not so great.
Great: in bathing suits, bras, clothes.
Not so great: sleeping. I wish I could take them off and hang them up for the night! Also, running is easier when you are flat-chested.
In two weeks, I will go back to my oncologist for some kind of test. I should know what kind of test, but I don’t. I called them to ask, but they put me in hold limbo forever, so I just hung up. I have a list of questions at the ready, though.
Weird things happen during recovery, such as the sharp electrical shocks I feel as my nerves come back to life. Also, the dull throbbing pain from the muscles stretching to accommodate the implants.
I went to a kid birthday party a couple months ago. My “friends” had not seen me since my diagnosis. They greeted me with, “You have all your hair!” and “You look great!” If there is anything I can do with my experience, it is to spread awareness of the importance of going to your doctor for all your checkups. There is a controversy brewing right now. Some health officials seem to think women don’t need a mammogram until 50! I shudder to think how far advanced my cancer would have been if I had waited eight years. There is a very good article on this issue right here.
I want to help dispel the awful perception that cancer is a death sentence, or that once you’re diagnosed, you are forever “sick.” It’s simply not true. Just take care of it as early as possible.
I just wanted to share a letter I sent to my first oncology surgeon with you. The most empowering, important lesson I have learned on this journey thus far is to take control of your medical records and your health! As most of you know, I was given my diagnosis in a very cold manner: “You have Stage I breast cancer.” That was it. He immediately recommended a mastectomy with reconstruction. I wrote him a letter weeks later, because that day will forever haunt me. Not simply because of the content of the news, but especially due to the delivery. Here is my letter:
Dear Dr. ________:
Although I am sure you have to impart bad news of cancer to many people in your week, each person you inform is hearing it for the first time (unless it’s a recurrence, which I’m sure does not make it easier). You are telling people (as a medical professional) their chances of survival. I want to help you be better at this. When you deliver the news, it is good to be factual, which you were. However, it would not hurt to be sensitive: offer tissues immediately as tears are sprung and look the patient in the eye during the conversation, not her partner. I left your office feeling as if I was handed a death sentence.
I received a second opinion from another surgeon this week. His approach was different, although the end data was the same. He went over my pathology report line by line (it’s six pages)! He made sure I knew what “in situ” and “invasive” meant. He stressed the very good fortune that I discovered this as early as I did and told me I have time to make an informed decision. He did not press the surgery option at all. He gave me several choices: chemo, radiation, and surgery. He did tell me I need to do something: I cannot and should not let it be. I felt empowered and hopeful when I left his office. Do not get me wrong, I know I face some serious hurdles in my future.
You strike me as a competent surgeon. However, I do not feel comfortable with you. There is absolutely no lightheartedness, no warmth or levity in our dialogue. I am blessed with an incredibly strong network of support and love within my family and friends. I am seeking the same in my medical team.
Some occasions in life seem designed to test you. I believe they are there to see if you do the right thing, which is simply to say nothing. If an idiot offends you with an impulsive, derogatory remark, you are the better person for ignoring it. I’ve been taught that and I impart this bit of wisdom to my daughters and students. Growing up in Iowa in the late sixties, early seventies, I was called “chink” quite a bit. I learned to turn my head and ignore it. At a roller skating party, a boy of about fifteen, skated up to me and sang loudly with the music, “Like a refugee!” I was eleven and had no idea what he was talking about, but from the laughter and looks his friends gave me, I knew it wasn’t a compliment. There was also that song, “Everybody was Kung Fu Fighting” which the boys really wanted me to know, but I digress. I tell my daughters to do the same thing when “boys” or “people” bother them. I don’t recall arguing with my parents the way my kids do, but whatever….that’s not what I’m writing about, either.
My lovely mother is here to help me out. Because I am not allowed to drive for three to four weeks post-surgery and Willey has to work, my mother is THE driver. I will not alarm you, dear reader, by sharing her driving record with you. Let us just say she’s greatly improved in the last two decades. Let’s just say at about the same time boys were serenading me with the Kung-Fu Fighting and Refugee songs, my mother would feign any knowledge of English when she’d be pulled over by an officer for things like speeding or going through stop lights. She suddenly lost “all her English” and was usually let go with a warning. I distinctly remember her saying “In Korea, no lights! I confused,” and the officer let her go!
When she arrived here at my house last month, I painfully detailed the importance of yielding at the roundabouts. We have two in a row we must drive through to get anywhere (Safeway, Peter Piper Pizza, the hair salon, etc.). “Caroline! You think I can’t drive? How long I’ve been driving now? I drive in Chicago! Mesa is so easy, no traffic.” I imagine the countless number of drivers who must honk at her (and give her other gestures) as she makes her away around, and I think her loss of hearing is a blessing in this case.
Like many of her 66 year old comrades, her hearing is all but gone. My sister purchased top-of-the-line hearing aids for her. Even with these, her hearing capacity can be 60%, depending on the condition of her batteries. She copes with her inability to hear with the catch phrase she’s learned from co-workers in an Alzheimer’s home where she works as an aide. She says, “Gotcha” and nods her head “yes” at the same time. Most people just say, “Yeah” and smile. My mom says, “Gotcha.” If you know my mother, this woman who immigrated from South Korea 43 years ago and speaks with a thick Korean accent, you would appreciate the utter charm of it. “Gotcha” and a nod of her permed head.
Yesterday, after dropping my daughters off to summer school, we headed to Phoenix to meet my oncologist.
“Mom, you’re going to go straight, just as if we’re seeing Dr. Parson, but Dr. Isaacs is in Phoenix, which is five exits past Dr. Parson’s office.”
With both hands gripped tightly around the wheel, she gives me a shake of the head and a “Gotcha.”
“OK, mom, make a left at Shea and go straight for awhile. I’ll tell you when to turn right.”
“You forgot to shave? That’s OK. Why you have to shave?”
“Oh.My.Gosh. You forgot your hearing aids?!” I ask in disbelief. Suddenly, I realize I could probably drive. I feel fine and have gotten a lot stronger since my surgery two weeks ago. My chest is throbbing, I’m anxious about what the oncologist will say and now I have to address this. I choose to remain silent.
Another shake of the head, her eyes squint into the light (no sunglasses either). “Sometimes, hearing aid is bother. Really bother you. I don’t like them.”
We head into the office and meet a wonderful doctor. Long story short, he reads my six page pathology report and tells me that with the double mastectomy and the very small sizes of my cancers, he recommends no further treatment. No chemo! No radiation! Not even Tamoxifen! I am elated, ready for some Kung-fu fighting.