MANAGING CHAOS

I have a surgery date. Yeah! The scheduler gives us one of the dates my husband requested. Guess it pays to slow down, keep your wits about you, and ask for what you need.

A sudden calm melts over me when I hear the news. I haven't felt this focused since before I learned my mammogram was weird. It's amazing how having "a plan" brings with it such a feeling of control. It's like stumbling on a well-worn trail when you've been lost for weeks in the woods.

But in order to keep my calm, I have to learn how to manage my chaos. I took cancer from an angry rolling boil down to a simmer by determining the who, what, when, where, why and how of my diagnosis. This not only gave me a path and a direction, but a sorely needed compass.

Once you figure it out, managing your cancer chaos gets much easier.

The who, of course, is your medical team — who will your surgeons and physicians be? Your life depends on your choice and their expertise; choose wisely. Make a list of every question you can think of (I found The 10 Best Questions for Surviving Breast Cancer, by Dede Bonner, M.D., to be very helpful).

Take someone with you to your appointment who is a great listener and note-taker, and afterward, listen to your gut instincts. Get more than one opinion if you feel unsure about anything. Remember, you know yourself and how you process things; this is NOT the time to shortchange yourself. Give yourself as much time as you need to think things through and talk things over with your trusted confidants. As my surgeon wisely said to me, "Your cancer has been growing for years. Waiting a few more weeks to make sure you are making the best decision for you will not make any difference at all in your treatment."

Ah, the what. Uncertainty is a killer of the soul — and cancer courts uncertainty with devilish and unbridled abandon. Waiting for results that reveal whether or not you have "The Big C" is excruciating and, honestly, the worst part of the whole dang process. 

Once you know what you have, you can proceed to the biggie, when — everything hinges on knowing when surgery will happen. Don't have any procedures you are not ready to have. Doctor's offices will work around your schedule. (See OPERATION WIG-OUT for more on that.)

Next up, where will surgery be? Once you know the hospital, you can start stringing all the missing medical pieces together and making sense of the cancer process. 

Last but not least (and forever shrouded in mystery) is the why and how did you get cancer? My friends, you will never know. But you'll still spend countless hours contemplating what you might have done differently. If only you had exercised more, eaten less, taken vitamins, lived in a less-polluted area, worked at a less-stressful job, had more fun, never used a cell phone, left a bad relationship sooner, started menstruating later, used a different antiperspirant, thought more positively, felt less negatively, meditated more, partied less, prayed more, worried less, slept more, feared less... blah, blah, blah. The list is, well, endless. 

If not getting cancer was as simple as not doing this or that (or even a combination of this or that), then the people that already aren't doing "this or that" wouldn't also have cancer! (And we would have a cure.)

As one who has swum in the wicked whirlpool of why, my advice to anyone struggling with a cancer diagnosis is simple. Save your energy for the positive things you can control. The entrance to crazy land lies just beyond the moment we are living in right now, so stay in this moment as much as possible. Oh, and make time for meltdowns.

Like a 12-Stepper, I have learned to dance with my cancer one day at a time. I make an effort not to get mentally ahead of myself. And in that small space, people, is where my peace resides.

What's next? Pre-op Road Trip!

FAMILY HISTORY

I am relieved that my mom finally knows I have "The Big C." Now I just have to tell my siblings. I don't want my mother to have to make those calls — she's had to do that before, and I can't ask her to do it again. 

Back in 1984 (when I was 25), I got a call from my mom telling me that my 31-year-old sister had breast cancer. To say we were shocked is the understatement of understatements. There was no history of breast cancer in our family. 

As the mother of three kids under the age of 5, my sister was floored to find out her cancer was Stage 3. She opted for a bilateral mastectomy (highly unusual at the time) and had 31 lymph nodes removed as part of her radical mastectomy. Four nodes tested positive for cancer; that meant months of CMF chemotherapy. She lost her hair and her energy, and despite the fact that her hubby traveled for business more than half the time, she got through it — thanks to the good graces of friends and neighbors and family. A year later she had [then] cutting-edge microsurgery to reconstruct two new breasts from tissue in her buttocks. She is alive and well today and a happy grandma of two. 

So it's with a heavy heart that I have to make this call that cancer not only has my address but is ringing my door bell. My sisters  take the news with surprising calm (this is familiar territory; they've been through it before). There is emotion, yes, but we don't break down. I brief them more extensively than I do my mom, yet not as thoroughly as I do my BFFs. The info I dole out at this point in time is on a need-to-know basis; if no good can come of it, I don't share it. I am a believer in not giving people more to worry about than is necessary. Why drive everyone crazy when I am already going there myself? Crazy doesn't need company. Really.

I call my brother, but he doesn't phone me back right away. This is not something I can leave on his voicemail, obviously, and I decide to let my younger sister do the dirty work. I ask her to keep calling until she reaches him. Another bullet dodged.

Then there is the matter of my stepkids, from whom we are deliberately keeping the news. Initially my husband wanted to wait until after I had my surgery to tell them. (It's complicated: Their mother died of breast cancer when they were teenagers.) Once I have my surgery date set in stone, we'll tell them. Once we do, we can tell the rest of our friends. 

It's time to finally let the cancer cat completely out of the bag.

(For more, see Managing Chaos.)

OPERATION WIG-OUT

Couldn’t fall asleep last night. Can’t shut off my mind. I started reading Living Through Breast Cancer (Carolyn M. Kaelin, M.D.); wish I'd been leafing through it from the moment I got my diagnosis (rather than waiting an entire month). But I guess I wasn’t ready. There is so much to know, to remember — and it all falls to me to figure out.

It's been five days since my meeting with the surgeon when the phone rings. It's Dr. A.'s nurse; she is absolutely thrilled to tell me that she has scheduled me for surgery on Wednesday. She starts rattling off the details when I interrupt her. 

         What? Wednesday when? 
         "THIS Wednesday." 
         You mean two-days-from-now Wednesday? As in the day after tomorrow? Like in 48 hours? WHOA. This is way too fast.
         The nurse is so not happy. "Do you know what I just went through to get you on the schedule this soon?" 
         But what about seeing my internist to get cleared for surgery? What about my blood work? My EKG? My chest X-ray? How can I get all that done in two days? 
          The pitch in my voice is crescendoing, and this catches the attention of my husband. I look up to find him standing in the doorway of my office. He can see the utter terror in my eyes. He calmly takes the cell phone away from me, tells the nurse that, in fact, this week is definitely not good for us, and we would like to reschedule for next Tuesday, Wednesday or Thursday please.

Amazing. He is my hero. The nurse says she will get back to us. I hope against hope that she can change the surgery date.

I should be relieved, right? But no, I'm wigging out. I'm absolutely not mentally prepared to have surgery in two days — especially since NO ONE IN MY FAMILY KNOWS I HAVE BREAST CANCER YET!! Oy. I am amped up; I need to calm down. I go for a 90-minute hike with a dear friend I've known since grade school and tell her all the dirty details before the sun goes down.

The following morning, I decide it's finally time to 'fess up. I take my mother to get our nails done. When we return home, I sit her down at the kitchen table and over a glass of iced tea casually mention that I have a “health issue.” And then I tell her my story (just the highlights, not the scary parts), focusing on the positives (the cancer is slow growing, estrogen/progesterone positive, HER-2 negative). She is upset, of course, and tears well up, but she doesn't cry. She is strong. I only choke up when I tell her how the doctor broke the news to me — he did it over the phone.

I had put off this conversation for so long because I was afraid she wouldn't be able to handle it. But in all honesty, I was afraid I couldn't handle it. The funny thing is, my mother really would have been OK if I had waited to tell her until after I had my surgery. I had to tell her for me. I am just so relieved she finally knows the truth. Keeping this secret has been sapping my energy. And I can't afford to give any of it away.

Next up: Family History.

DR. A. & DR. J.

I have a second appointment with a surgeon at the cancer center. I walk in and immediately feel I don’t belong. There are old people everywhere; patients waiting with adult children or grandchildren or young “nurses.” Only one other couple looks to be around my age; her husband is filling out her forms. She looks anxious. First timer. Just like me.

My husband and I wait an hour; Dr. A. finally enters the examining room just as my cell phone rings. It's my mom. I haven't told her I have cancer yet. I tell her I can’t talk. Now I’m spooked. (She has exceptional intuition, my mother.) 

Dr. A. patiently explains the procedure he will do for me to remove my cancerous mass: a lumpectomy. He'll also be doing a sentinel node biopsy to determine if my cancer has moved into my lymphatic system. Breast cancer spreads via the lymph nodes; during surgery, a blue dye is injected near the cancerous tumor, and the sentinel, or first, lymph node that takes up the dye is removed and examined under a microscope. If the sentinel node tests positive, that means my cancer has spread and Dr. A. will take out additional lymph nodes. And that also means I’ll need chemo. (Note to self: If my right arm hurts upon awakening from surgery, it's not good news.)

Since I have family history (my sister had breast cancer at the age of 31), Dr. A. asks if I have had a BRCA — the DNA test that analyzes mutations in a pair of genes responsible for some breast cancers. Yes, I tell him, and I should hear back in a few weeks. He is pleased but stresses that I shouldn’t wait until I get the BRCA results back; I should schedule the surgery as soon as I can, to "get it out of there." He’s right. It's been more than three months since I had the "bad" mammogram. I need to get it out of there.

Dr. A. has answered my dozens of questions patiently, thoughtfully. I trust him and want him to be my surgeon. I talk to one of his nurses about setting up a date for my lumpectomy.  She explains they need approval from my insurance company before I can be put on the schedule and this could take a couple of weeks. I leave not knowing exactly when surgery will be, but happy to at least have a plan. Having a plan means having control.

After our consult, a social worker asks if have any questions for her. Uh, how do I know what I’ll need emotionally when I haven’t gone through anything but anxiety yet? My BP is good upon arrival (125/75); but I can only imagine what it is now. I take her card.

On our way out, we run into a physician that my husband knows very well. This is awkward. Dr. J. is one of the doctors who treated my husband’s late wife for breast cancer. So there is a lot of history here. Since I have taken such great pains to keep my diagnosis from everyone, I am absolutely terror-stricken that my news will now be leaked — and not by me. 

But we try and play it cool, my husband and I. Dr. J asks us twice: How is everything, how is the family? We nod fine, fine. But it is obvious things are not fine. Pause. My husband fesses up: "We’re here because she has breast cancer." I quickly add, "and we haven’t told anyone yet.” Then the tears come. Dr. J. tells me not to worry, he won't say a word. Doctors are supposed to keep these things secret, right? Yet I know in my heart of hearts he will go home tonight and tell his wife that my poor husband now has had two wives with breast cancer.

By the time we get into the fresh air my head is pounding and I am starving. We head to a deli for a bite to eat. 

On the drive over, I call my mother but avoid talking about where I just was. (I will tell her soon enough, just not on the phone.) My husband and I sit down in a booth at the back of the restaurant, and I order cabbage soup and half a corned beef sandwich. My husband puts his hand on mine, a tender gesture. I pull away. "Don’t!" I snap at him. "I’ll start crying and I don’t want to lose it right now!" I hold it together but do a lot of staring off into space during lunch.

We get home at 3 PM. I put on my pajamas, close the blinds, crawl into bed with my dogs and watch House Hunters for 2 hours. Then I fell deeply asleep.

This is getting real now. 

My time is no longer free. 

I fear this cancer has spread. 

I don’t want to lose my hair. 

I can handle pain but I’m getting afraid. 

I tell myself to be glad for moments of happiness and fun and clear thinking — they help offset the ugliness that I know will bring me down if I'm not balanced.

I’m trying very hard to level the playing field.

(See Operation Wigout for the next installment.)

INTUITION

A question that comes up often when people first hear about my diagnosis is, "Did you know?" What they really mean is, did my gut tell me? Yes and no. My gut knew; it was my head that didn't. To wit:

1. When I'm called in for a second mammogram to get more compression views, I think nothing of it. Yet, subconsciously, I know there is more going on than just "dense tissue."
2. When the ultrasound technician tells me I need a biopsy, I don't ask her any questions, though she gives me plenty of opportunity to do so. I make the appointment but don't tell my husband.
3. When I have a core needle biopsy, I tell myself the procedure will simply show what benign breast tissue really looks like.

The evidence is adding up — yet I don't do the math.

Then one night I have a dream. In it, I'm telling both my parents that I have breast cancer. And I'm very sad because I realize that my father — who passed away three years ago — will never know that I have it. 

I awaken with a haunting feeling.

It was only after my diagnosis that I recall my dream and acknowledge how wise the subconscious mind is. It always knows.

Next up: Dr. A and Dr. J.