There I was, just sitting in the chemo lounge, politely minding my own business. All dandy in my barcalounger, port numbed and plugged in for my five hour poison infusion; a couple of Star Magazines and a National Enquirer in my lap, blanket nicely tucked in, ginger ale and a box of DOT’s (aka anti nausea meds) at the helm.
That was at least how she left me. But that is not how she found me.
Chemo Nurse Extraordinaire Marci was quite used to finding me engaged in the bizarre rituals I used to manage my anxiety. But even a seasoned pro like her was not prepared for what she saw when she turned the corner to find me well, lets just say, far from how she left me. National Enquirer splayed on the floor, tears streaming down my face, fingers in both ears, frantically and loudly humming the theme song from the Flintstones. Without skipping a beat (as if she saw this every day) she calmly said, “Lauren, what in the world is wrong now?” Note the word “Now.” If I thought 15 months of chemo was never ending hell, well imagine poor Marci…but I digress.
“Monica!” I said accusingly, like I was pointing out the kid who stole my shovel in the sandbox, “she’s over there talking about her recurrence in her collarbone. And it’s just freaking me out!” In a maneuver not unlike separating kids who don’t play well together, the chemo lounge attendants swiftly moved my lounge chair around the corner and out of view from Monica, and for my added dancing and listening pleasure (as I complained I could still hear her,) they politely offered me a different chemo day. I look back now and cringe at what a baby I was, but it was early in the cancer journey mind you, and my barcalounger was barely warmed up (as was poor Marci.)
Now listen, I am one of the most compassionate, empathetic people in the world. Just yesterday I said to someone that I am the kind of girl if someone was drowning and I had on lead underpants, I’d still go in after them. I would rather see my kids come home with an F on a test than a note that said they were mean to an underdog in the classroom. I mean, I have a career in sympathy and empathy, in listening to people and helping sort though their muck. But somehow, somehow the DNA compassion fairy dust missed a spot on this girl’s spiraling helix, and it had to do with cancer. In fact, had I never had cancer I would have never known this lil’ ole genetic anomaly lurked within me.
But here it is folks, Awful But True Confessions; when I was in treatment, I didn’t wanna hear your cancer story. I know isn’t that awful?
When I first got diagnosed I was given a wise piece of advice from a survivor,“Don’t listen to the stories,” she said. She was smart. You guys in Cancerland know what I am talking about, and I alluded to this in an earlier blog. Like a Pavlovian response to the cancer bell toll, as soon as you are diagnosed people feel compelled to come at you with their cancer stories. Nine times out of ten a story winds up with Aunt Calliope dying a long slow death from breast cancer. As they talk you politely try to change the subject, or stick your fingers in your ears humming, “they’re a modern stone age family…” or excuse yourself to the bathroom but noooo, the story goes on until its sad, sad conclusion, even after you return from an extended visit to the potty. I never really knew what to say other than in my head, “Hey, thanks for pointing out I might die from this beast.” Yabbadabbadoo indeed.
Suffice it to say that during treatment I didn’t seem to bond or “join” with other past or current breast cancer patients either, aka the swimmers in the other lane. I never became a “support group” kinda gal. Now I am not dissing those who find inspiration in these groups. I really do wish I was able to surround myself with that support and synergy, but my DNA simply wouldn’t allow it. And my alter ego Anxiety, (yes with a capital A) saw listening to others woman’s stories only as the gate being swung wide open for my neurotic thoughts to wander out and run wild, and thus taking my focus away from the task of kicking cancer’s ass to the curb.
It wasn’t that I didn’t care or feel bad for others, it was that I was at a point where I had to bring absolute focus and my A game to the ordeal. I simply couldn’t contaminate my brain with counter intelligence. You just can’t unthink the thinks you start to think, and when you spend time thinking them, you take time away from thinking the thinks you should be thinking to get well.
The sandbox incident happened about the time it was starting to dawn on me that breast cancer likes to come back for a revisit sometimes. When I began to understand the frightening truth that the reality of breast cancer wasn’t always, “Let’s get rid of it and Yippee! It’s gone,” but is more like, “Okay, so we got rid of it this time.” Simply knowing that information makes it harder to give it your all; with the knowledge that there may be just over the next hill, another even more serious episode coming at you. And I wasn’t even sure at that point if I would make it through round one.
I am an “eat an elephant a bite at time kinda girl.” Yet it is a task for me to not be consumed by the sheer enormity of the elephant. I had just talked this thing down to baby elephant size and then well, there came Monica with her raging African bull elephant that was like one of those ginormous inflatable’s on top of a car dealership saying, “Here, this is how big that elephant really is. This is how much more you have to eat.” And I was already full.
The psychologist in me knew that it was imperative to focus on treatment and I clearly understood how paramount it was that I bring my A game to this mess. I remember struggling daily with the conflict that emerged from having to focus intently on treatment decisions and visualization (yes a pack of snow dogs coming and eating the tumor) at a time when my brain was in crisis and I was exhausted from no sleep because Anxiety, being nocturnal, wanted to chat about cancer all night long. It was a struggle enough to keep my anxious little wanderings corralled, but add in people opening the gate to the paddock on a daily basis and forget it.
You come into treatment strong, with this focus and mentality of, “Well maybe Aunt Calliope, but not me,” but by chemo infusion number 22 you are weakened and kinda susceptible to being brainwashed. The A game become a C game in the flash of a Monica. I finally understood why race horses wear blinders. To me hearing stories, both from other women currently in treatment and about the Aunt Calliopes, was the equivalent of running a race only the people on the sidelines are cheering,“You’re gonna die! You can’t do it! You are running slower than everyone else! Everyone dies from breast cancer!”
My pop has this saying he has told me since I was a little girl, it was hanging in Mrs. Vinka’s Doughnut Shop when he was a tot.
All through life,
Whatever is your goal,
Keep your eye upon the doughnut,
And not upon the hole.
Admittedly, a self destructive little habit of mine, (which is part of my bonafide, self diagnosed, DSM Axis 1 diagnoses of ADD and Generalized Anxiety Disorder) is that once I see the hole, I worry about the hole; I obsess about the hole, I talk incessantly about the hole, I start to see only the hole and then, well I just can’t help myself, I fall in the hole. Much as I love me some Krispe Kreme’s, I have trouble keeping my eye on the doughnut for sure, even when the “Hot Doughnuts Now” sign is flashing in all its glory.
So lets talk about the effect on your psyche of looking at swimmers in the other lane. I mean those swimming right next to you in the same pool, same pink swimsuit on, also without the need of a swim cap.
Here is the little known fact about breast cancer. Most people don’t know this until they have the pink dress delivered to their home and they begin to read the care instructions included. There isn’t just one breast cancer. Maybe I was stupid and the rest of ya’ll understood that, but I sure didn’t until I got sick. I am not a doctor nor did this info did not come from the National Enquirer I promise, but I will offer a Cliff note version of breast cancer for lay people like me. Breast cancer is like a slot machine that the arm is pulled, except instead of three windows on the machine there are like seven or so. Statistically a whole lot of combos (markers) can conceivably come up on the machine. You have your estrogen receptors, Her 2 status and others markers that are typed as positive or negative or even perhaps as in my case “Weakly Positive” (Suzy Sunshine saw this as Mostly Negative BTW)
Then there are a couple of wild cards thrown into the mix like both the BRCA genetic test and oncotyping results…and let’s not forget whether the cancer is in situ, or invasive, the stage, tumor size and grade. Throw it all together and Voila, you’ve got a gazillion possible combos of breast cancer. Triple negatives and positive negative, negative and positive negative positive…you get my drift. Depending on your combo, family history and type of breast cancer, your treatment plan will vary, your prognosis will vary and after care meds and sadly, need to not drink alcohol again will vary. Some will have lumpectomy, some will have mastectomy and some a double mastectomy. Just one small marker or result being tweaked and it changes things, for example, a positive genetic test result for me would have made the difference between a lumpectomy and a double mastectomy with ovaries removed despite my tumor type.
Tumor type, grade and size often steer the need for chemo. Some will have chemo before surgery (neoadjuvent) and some will have chemo after surgery (adjuvant) and some will have no chemo at all (lucky dogs). Amongst those who have chemo, the cocktail and how many infusions you will be served will vary widely. Just as there are a multitude of medicines for every particular symptom in humans, there are thousands of different protocols and clinical trials offered of chemo drugs all depending on the combo that came up on your slot machine. Some will have chemo for 6 weeks, and some like me for 15 months. Some more aggressive cancers have a silver bullet and some less aggressive ones tend to like to visit again. Some tumor types require meds be taken for five years after chemo for greater shielding from recurrence and some have no drugs that offer that shield.
Surgery will also vary. Some will have a mastectomy or lumpectomy and be on their merry way. Some will have both breasts removed. Some will reconstruct right away and some (like me) will wait years to do it. Some will have no radiation and some will have only radiation. Some, like Sheryl Crow will have a lumpectomy and radiation and no chemo. All that variation and then throw in a sprinkling of lymph node status, how many nodes were plucked from your armpit, and other types of breast cancer like inflammatory etc…and well, now maybe you now understand through my public service announcement today in that you see there isn’t just one breast cancer. It’s why Aunt Marge gets Tamoxifen and the woman in the cubicle next to you at work doesn’t.
My feeling is that in life no matter what it is, you really should never look at swimmers in the other lane. But in breast cancer especially, it is soooo not a super dee duper idea simply because you aren’t in the same relay or swimming the same stroke as everyone else darlin. Sometimes you aren’t even in the same pool. Some are doggy paddling along in the baby pool, some are doing crawl relays in a heated pool, some are on lap 40 of the breaststroke in the Olympic pool and some doing butterfly in the ocean across the English Channel. And some yes, are swimming with floaties on. Looking at the other swimmers likely will only serve to freak you out.
So often when I write these blogs, I worry, well I worry about stuff all the time, but I worry that because I am speaking from my own experience I may miss a point important to another survivor. Although there are common threads of PTSD and grief across cancer, it is often faulty logic to make an analogy of your experience to other swimmers, except of course Monica. (But just know I do get, just for the record, that me having a lumpectomy is vastly different from you having a double.)
The Big Guy, aka Dr. Graham my oncologist (who walks on water and performs small miracles as a hobby) explained all this to me…for the second time…shortly after Marci had obviously whispered in his ear about “the chemo lounge incident.” This second tutorial also coincided with the tailspin I was in about Elizabeth Edwards’ recurrence. His point was and my point now is you really can’t compare breast cancer to breast cancer. Like the breasts themselves, breast cancer comes in all shapes and sizes, and to compare is like comparing well, apples to cantaloupes, or to watermelons, or small peaches as in my case.
I will add that because I am the kind of chick that likes to do things right and be the best I can be at everything including being a cancer patient, (Marci may have a vastly different opinion of how “being the best” showed up in the lounge though) I asked the Big Guy, “What kind should I hope to have?” Give me the bar bar bar bar bar bar jackpot code I should be hoping for, and darn it, I will make sure I have enough rolls of quarters to feed the machine till I get it right. He looked at me and said, “Lauren, it is what it is.” And he was right. You got what you got honey. And she has what she’s got. And Monica has what she has. Each person got one quarter and each swimmer has their own race, stroke, pool and relay.
Now, before I wrap this up, lets chat for a minute about swimmers in the same pool, doing the same stroke, who were swimming an identical distance. These are the woman who were perfect matches to my “bar code” and who made up the cancer statistics that were straight on relevant to me. Here is the craziest thing I did. I didn’t want to look at swimmers in my lane either. But it worked for me. I told the docs from the get go to NEVER tell me my survival odds or prognosis. I was VERY clear I didn’t want to hear statistics. “So Big Guy,” I said, “Just turn off the Power Point presentation of prognosis with my tumor type now.” Crazy? Yeah maybe. But see the point for me was that I had to swim the distance no matter what, and I think knowing how choppy or cold the water was, or how strong the under tow was, or if there were riptides or sharks in the water would have well, muddied the water for me. I simply didn’t want to know how many women had drowned attempting the swim. It would have messed with my head too much, I know me; I would have seen only the hole…swirling like a whirlpool in an old Scooby Doo cartoon. All I knew was this, I hired the damn best swim coaches I could find and left it at that…and well that I needed goggles with blinders on them. I was gonna swim a personal best no matter the odds against me or for me were, so it didn’t matter what they were. I wanted a crystal clear pool of fresh water to swim it in, to swim in my pool with my A game. I knew enough about me to know that couldn’t do that in a cesspool full of yuck and contamination. This folks, is how my crazy lil’ brain works. But I am here, after five years….
Are there stories I like to hear? Darn tootin there are. Every year when I am running the Race for the Cure there is this little old lady who sits on her porch on the race course. Above her on the eaves of the porch, hangs a banner with a scratched out, painted over number every year. Last summer as I ran by it said, “21 Year Breast Cancer Survivor.” Twenty one year survivor. Those are the stories I like to hear. And I know sure as I am standing here after five years, these will be the only stories that surround our daughters when they are grown. Along with real books and ipads, the Aunt Calliope stories will be a thing of the past. Just as my kids giggle incredulously at my “card catalog at the library stories,” my grandchildren will be incredulous to hear that the world ever had Aunt Calliope stories in it, because the only story they will know and hear in their world will end with, “And she lived happily ever after.”
Do what works for you girlfriend.
As Dory says to Nemo, “Just keep swimming, just keep swimming.”