A Ridiculously Complicated New Normal in Cancer Survivorhood

I used to be one of those people who had a pretty simple routine. In fact, there wasn’t much of one at all. Get up in the morning, put on some deodorant, put on the same pair of earrings, jeans and a shirt, and roll out the door. Seriously.

I prided myself on the fact that I was unswayed by those marketing ads for skin care and cream – for hair products and serums – makeup, fashion, all outside my zone. I was above it.

Getting ready for bed was also easy – shower, jammies, bed. Oh and brush the teeth.

Maybe the fact that I didn’t do the breast self exams in the shower was part of my problem.

At some point in the last year I felt a subtle shift. Maybe it was the fact that I didn’t have hair, maybe it was the fact that I felt so alarmingly fatigued, or maybe it’s just that time of life , but I suddenly developed a fear of being seen dishabille. I felt naked if I walked out the door without a tinted moisturizer and mascara. I started wearing trendy, dangly earrings and jewelry. I paid attention to color palettes for clothes and eyes.

Part of my new routine is also to assess how I’m feeling about 40 times a day – do I need a nap yet? Am I hungry enough for food or will a mint suffice? Is that pain there normal? When did I strain that muscle? What on Earth is that thing on my leg? And, my entire day has become a choreographed dance through creams, liquids, and meds.

I wake up in the morning and put on moisturizer because apparently my skin has decided that it wants to peel off all creased portions of my body – which includes my eyebrows, hips, ankles, and knees. Then I put on BB cream because I need sunscreen since I catch a sunburn just looking at the sun through the window after radiation. And, I flush so easily from the tamoxifen I need to cover up the rosacea. Next I put on my watch which I have wrapped around my tamoxifen bottle so that I don’t forget it .

Then I decide on a relatively comfortable, fashion-neutral outfit. I strap on my ladies and get dressed. (Up to this point I still have not seen anyone in my family or gotten out of my closet).

Then I try to attempt what they taught me at Sephora with my eye makeup; pick coordinating, bangly jewelry, realize I haven’t had a pedicure in eight months, and put on flats.

I have a Diet Coke first thing downstairs as I help get kids ready for school with full backpacks and tummies. I try not to nap although some days I’m so exhausted that I literally pass out. I try to exercise 3-4 times a week but at least have Pink Ribbon Pilates on Tuesdays. And I don’t have caffeine after 2pm. I have one beer at dinnertime. The kids are asleep around 7:45 and I take my first round of meds which includes my sleep quality increaser, vitamin D (for eyesight), magnesium (for hot flashes), Omega 3 complex (for dry skin and eyes), Calcium (for osteoporosis prevention), and my anti anxiety medicine.

At 9 I start winding down – no email, no TV. I head upstairs and take off my makeup with Cetaphil because my skin is still crazy reactive. I take off my ladies, scuttle to the shower, and have a nice warm relaxing shower. I revel in the fact that my hair actually feels wet now – and that I have enough to wash.

I get into my long pants, long sleeved sweater shirt, and curl up with Cameron – who has nested on my side of the bed invariably. I then read my book – right now I am flexing the power of the Amazon Prime Lending Library.

The thermostat needs to read 71 degrees and I need two blankets. (One degree more or one blanket more and I have hot flashes). I put on a breathe right strip, take a tylenol, and try to get to sleep – lights out – at 10.15.

Of course, there never is a “normal” day – Davis is out of town, Carter is up in the night, Henry wants to feed the dog at 6am. Emmy wants to read the book she wrote. There never is a full night of sleep anymore – I am up at 3 or 4 with or without kiddo intervention.

But there is a ridiculously complex survivorship routine – physically and medically – I haven’t even gone into my follow up and doctor schedules.

Oh, and after April 1st, I won’t have to strap on the ladies anymore. My reconstruction and expansion begin. That will be a chance I will welcome.

The Survivorship Freak-Out: Is the Cancer Back??

As mentioned previously, survivorship comes with its own share of challenges. Not nearly as debilitating as the wracking fatigue of chemo or the unbearable itch and red of radiation, but a different sort of problem. For me, I have no idea what’s going on with my body. Everything and nothing is related to cancer and side effects.

For example, over the holidays, I gained back some of the weight I had lost since chemo. I panicked: must be tamoxifen changing my body chemistry! Must be my cross to bear for the next ten years – the extra 10 pounds of “tamo tummy” as I have so oft heard it repeated on boards. So, I doubled my efforts in January, cutting out alcohol, chocolate (dessert in general), only drinking diet drinks and no longer eating breakfast. I know, not the best way, but the funny thing is, it worked. I am now approximately the same weight that I was when I started chemo … I guess sans boobs however you measure that …  which means it was a complete false alarm. It wasn’t a tamo tummy – it was a holiday wine every night tummy.

Next, I have the problem with insomnia again – and it turns out, it is tamo – so I move it to taking it in the morning, stop caffeine after 2pm, have one beer – no more no less – at bedtime, and it gets better.

Then this past week my face completely freaked out. Not me, my face (although I did too and I’ll come to that). First I went to Sephora. They sold me $150 worth of essential oils and “no foundation foundation” and a week later I was covered in scales. You think I’m kidding. Christy asked me what was going on there because it looked so painful. Most people just averted their eyes.

I went to see a dermatologist and turns out that I had an allergic reaction to some change in skin care (thanks Sephora!) and to Austin. Now, I’m on Cetaphil and Neutrogena and no longer ashamed of my morning face.

Next in the chaos, my eyes were itchy – not just allergies (which this year are ridiculous). I went to an eye doctor to renew my prescription for sunglasses and turns out I have chronic dry eye. Awesome.

ASIDE: One super fun plus of going to all these extra doctors is that I get to explain either (A) Did you ever go to Dubai?? What happened? or (B) It says here you were a cancer survivor? How on Earth did you find it? or (C) Tell me all the clinical information about your cancer so that I can flex my unused oncology information. Four conversations in four days last week – staging, tumor size, treatment, side effects, etc. One doctor was actually rather apalled that my GYN had ordered a mastectomy at all – “that’s against the current recommendation of 40” he said. I said in my head “and you’re going to argue with the girl who’s life got saved? not a good fight to pick doofus!”

And then the biggest, scariest side effect of it all? The aforementioned mental anxiety that the cancer was back.

I have been doing pilates and walking and in the course of it all have gotten quite sore. I have been rubbing limbs, neck, shoulders etc to try to restore sanity, and in the process to try to get over my complete nausea at doing a breast self exam on top of my scars.

Well, I felt a lump. I thought I felt a lump. And it was sore. I completely freaked. I called Davis, I called Christy. No one was home. Immediately my mind went there – to the cancer coming back, to fighting again, to losing this time. As my vision blurred with tears I started feeling a pit of anxiety settling into my stomach. All in a matter of moments I saw myself, quite literally, dying.

I am a completely rational person. I was completely and totally irrational in that moment. There was no evidence of anything – just a sore spot. (Turns out, “cancer doesn’t usually hurt” according to the oncology nurse). Beyond that, how did I get to viewing my funeral from one odd body sensation?

The answer I think: because I have already been there. My mind must have already thought through the death by cancer scenario and not to be morbid, but it went there this time. Maybe I was a little more prepared – and yes, a little less likely – to have that scenario play out. I think it was my brain’s way of acknowledging the seriousness of it all, and to let me have my complete freak out when it didn’t really matter.

Of course, nowadays, everything matters. And, yet, of course it was nothing, and I realized within an hour that I had completely overreacted.

But that’s the funny thing about this new body of mine. It doesn’t come with an instruction book. What happened in the past doesn’t hold true. SO sometimes I will get it right (a la insomnia) and sometimes I will be totally off. I just hope not every exercise session leads me to hyperventilation and picking on my Last Lecture in my bathroom.