Fortune Cookie Wisdom: Beauty Vol. 1

I really thought I was more down to Earth. I believed beauty standards were beneath me and that my self-confidence was housed securely in there with my intellect and morality, a place impenetrable from outside influence. My mom instilled early on that my worth was determined by my actions, not my eyelashes. And then they told me my hair would fall out. I lost my shit.

Of all the things to fear, how I looked should have been far down on the list but vanity reared its ugly head in a most severe way when I was diagnosed with breast cancer. I was devastated that, simultaneous to the myriad of torturous treatments, I would also be unrecognizable to myself. I hate admitting it but I was even worried about what my boyfriend would think.

Stripping away some of my vanity has been valuable, but I’m also proud I held tight to some of it. There is no reason to surrender feeling beautiful to this disease. And I won’t do it.

Below are some of the things I’m doing to ease the cosmetic effects of chemotherapy treatment.

HAIR

Penguin Cold Caps have allowed me to keep the hair on my head but it requires a strict hair regimen. You must keep your scalp totally bored during treatment to avoid aggravating the hair follicle. Human hair pH is between 4.5 and 5.5 which is alkaline. Even water gently throws that off so you have to jump through some hoops.

  • I only wash my hair 2 times weekly using Acure Repairing Shampoo. It has no parabens or sulfates and is pH balanced, as directed on the cold caps website. Opaque and volumizing shampoo and conditioner is not pH balanced. I really had to hunt for the pH of most shampoos so don’t assume.
  • Most conditioners were discouraged. I use it’s a 10 miracle leave-in plus keratin and spray it only on the ends (avoiding scalp). I tried Kenra Daily Provision but it left my fine hair greasy. It is pH balanced so it may be good for someone with different hair type.
  • I spray apple cider vinegar (an alkaline wizard for all areas of the body) on my hair and scalp after shampoo while I’m still in the shower and rinse it out only lightly.
  • I comb extremely gently with a wide-tooth plastic comb. No brushing, blow drying, or irons. I create pin curls if I need a style (but don’t use gel, heat, or hairspray to set).
  • I use only satin pillow cases to avoid friction while I sleep.
  • I’m only just now taking Biotin and Silica supplements but I wish I would have been taking them the whole time. They are to support the hair follicle nutrient-wise.

I have thin, fine hair to begin with so thinning is noticeable, but probably only to me. I just take deep, calming breaths whenever I’m combing and it seems like I’m loosing tons. I’ll be honest, there were tears over hair but I got through them.

I also prepared myself mentally for hair loss. My mom and I selected a wig right after the first treatment, just in case. If cold caps hadn’t worked, I knew just what to order from Candy at Parker Serenity Wig Spa in Austin, TX. I didn’t want to face this challenge but my mom made me and I’m glad she did. The wigs were gorgeous!

 

LASHES/BROWS

  • To keep my eyelashes from thinning I use prescription Latisse from my med-spa, Serenity Creek. I’ve had some thinning but probably only noticeable to me.
  • I also put Latisse on my eyebrows but they have thinned quite a bit anyway. Luckily, I can fill in with a regular eyebrow pencil and they look just fine.
  • Microblading is something I may try after chemo is finished while my brows grow back.

 

SKIN

My facial skin is very fragile and strange during chemotherapy and, like my hair, I had to abandon nearly all of my usual regimens. Luckily, I already had a long-standing relationship with Serenity Creek Med-Spa (Austin, TX) and they immediately crafted a new plan for me. I put my usual Retin-A, monthly medical-grade facial peels, and micro-needling on the shelf for when I’m well again.

To be frank, chemo has really affected my skin negatively. My hope is that I can bring my skin back to its original glory once this phase of treatment is complete. For now…

  • The week after chemo, my skin gets very acneic (while also strangely dry). I predict this is simply toxins trying to exit my body through the skin. My aesthetician recommended mybody Break Free Hydrator. It is a probiotic acne facial lotion that doesn’t have the harsher glycolic and salicylic acid I would usually use for breakouts.
  • Two weeks after chemo, my skin gets extremely dry and flaky. I use mybody myHero Ultra Rich Anti-Aging Cream.
  • I rarely wear make-up anymore but the few times I have I used Lush’s Ultrabland for removal. It simply dissolved even the most serious eyeliner without scrubbing. Being gentle is key…especially if you don’t want to unintentionally rub off eyelashes and brows. It is also super emollient so it helps with dryness but doesn’t clog pores.
  • Coconut oil is my wild card hydrator. It is antimicrobial and all natural so I can put it pretty much anywhere, even zits.  It also works as a great lube and mouthwash!
  • For body, I have always lived by Queen Helene’s Cocoa Butter Hand and Body Lotion as well. It comes in a giant quantity and is very affordable so it is a staple at my house.
  • I still go in to the med spa for monthly facials which usually entail a mild, superficial enzyme peel and sometimes a microdermabrasion. This helps get all the old, icky, toxic skin off so new, healthy skin can shine through, same as before treatment. I can’t wait to have nice skin that lasts more than a few weeks.

 

NAILS

I heard chemo would make my nails brittle and could even cause them to fall off! Also, a compromised immune system means that even a hangnail can be serious so hand and nail care is an easy, important task. I can’t trust the cleanliness of even the most reputable nail salon with white blood counts as low as mine so I just do them myself while binge watching Netflix. #multitasking

  • I splurged on Smith & Cult polish in a moment of “fuck you, cancer” and I don’t know if I can ever go back. It stays put, even without a top coat, and the glitter is superb. Also, with names like Vegas Post Apocalyptic, it is precisely in-line with a breast cancer patient’s mood. Makes a great gift…hint hint.
  • I also use Sally Hansen’s Miracle Gel and it works great too.
  • To avoid any potential infections with cuticle tools, I stick to chemical means.
  • I keep hand cream in nearly every room of my house so I can slather it on a few times a day. A friend sent me Swedish Dream Seaweed cream and the scent is lovely.

 

TEETH

Horror stories of mouth sores and tooth loss had me panic stricken when I was first diagnosed but luckily, I have experienced none of that. However, taste is a challenge and I do notice my mouth is sensitive right after chemo. Also, some of the medicines they give me are downright awful.

  • I had read that bee propolis can help alleviate dry mouth and help heal mouth sores so I purchased Tom’s of Maine Propolis & Myrrh toothpaste before treatment. I don’t have any sores to heal fortunately so I can’t say it is doing what I hoped. But, my taste buds do start acting normally again after about a week following chemo so I’ll keep using it.
  • I grind my teeth, especially when stressed and it causes sensitive teeth and gums. I just ordered a super-soft charcoal toothbrush to try. This would make a great gift as toothbrushes are kinda strange to think about but would be a blessing for someone who had a sore mouth.
  • Biotene is a nice thing to have handy.
  • I swish coconut oil in my mouth if it feels dry. Just be sure not to stop up your plumbing by spitting it into the sink…this stuff solidifys at room temp so spit it into the trash instead.

I’m sure I’ll have a number of new beauty tips once we get to the surgery phase of treatment and I’ll update this post as I try new things. I’ll also be sure to post before and after pics of my hair and lashes.

Please share with anyone going through treatment and please also share your own tips for cancer fabulocity. I’d love to know what works for you!

Water Conservation

Crying. Gosh. I’ve never done so much of it in my life, though I’ll check with my mom to see if I was a fussy baby.

There was another time in my life when crying was prevalent. I was in living in a roach-infested brownstone basement in Dupont Circle selecting my apartment decor from curbsides and dumpsters. I was laying the foundation of a career I still have and love in non-profit fundraising and I made no money. I had very little and my life was never more glamorous.

My friends were fascinating, dear, and many. I drank cheap martinis with my pinkie out in one of the most cosmopolitan cities in the world, listening to foreign languages I couldn’t identify, talking about current events and the most recent thought-provoking novel. My heels were high and worn to the nub from walking, fast, around Adams Morgan, U Street, Georgetown, Connecticut Avenue. And I cried and cried and cried.

About what? Many a night, Mom would get a tearful call around 2am about boys, being poor, bad dates, stubbed toe, spilled milk, more boys. These were real, sobbing, snotty tears. I was in my 20s. They were those sort of tears.

I was talking to my mom a few days ago after Round 4. I told her I needed to drink more water because of how much I cry. These tears, in comparison though, are silent and slow and constant. They creep out at the most unlikely times, usually several times a day. Just a few at a time, they roll slowly down my cheeks using the same path to a drip under my chin.

These are not the hysterical, drunk, splayed on the floor, mascara-smeared tears of my 20s. They come from a deeper sadness. I cry for my caretakers, for myself, over songs, over other cancer patients, because of pain, because I’m afraid. And not just any fear…fear of dying. Did you get that? This is big. I’m sad and scared that I might die.

My tears also come from knowing that every cough or twinge from now on will come with a panic that wasn’t there before. I will definitely need some long-term assistance with water conservation.

On the bright side, I also cry for good news, for progress, out of gratitude, out of love, because of support from nearly everyone I know (and from some I don’t). I cry a lot because we’re fixing this and I believe I won’t die, not for a long time. I’m crying right now.

I certainly don’t write this for pity. Quite the opposite. Crying is good and the appropriate emotional response when sad so I’m totally safe and fine. But, if you see me, please put water in my mouth (and hand me a hankie).

Dirty Gummy Pillows

When preparing for chemotherapy, I resisted the urge to read forums and get advice from non-professionals. I would be doing chemo no matter what so gathering details about the potentially sick and wrong things it would do to me seemed unnecessarily cruel.

I attempted this same methodology on surgery research and felt quite unprepared for the conversations had with my breast surgeon and as I interviewed plastic surgeons who would be performing reconstruction. I’ve since been devouring info, images, personal experiences, and options. Is it scary? You bet. But, because my decision will impact my life forever, I want to move forward with my eyes wide open.

I am opting for a bilateral nipple-sparing mastectomy and implant reconstruction. In other words, we will remove both breasts but leave the skin and nipple as a pocket for (sorta) immediate reconstruction. It is a more extreme surgery than a lumpectomy with radiation, which I’m also a candidate for, but I have good reasons for my decision.

Why, you ask, would I say “bye, Felicia” to both my breasts when I don’t have to? Great question.

First, a lumpectomy would require 7 weeks of daily radiation therapy post-surgery. That extends my treatment significantly in a pretty un-fun way. Radiation could leave my skin leathery for life and could prevent reconstruction options later on should the cancer return.

Also, leaving breast tissue makes me nervous. Statistically, lumpectomy combined with radiation does provide similarly low chance of cancer recurrence compared with mastectomy. But, I like to use my brain as well as stats. My brain knows that when breast tissue is present, there is a chance the cancer will return and I’ll have to do a whole treatment plan similar to the one I’m doing now all over again. Since I’m so young, the chances do increase it could happen again. I’m not willing to risk that and would instead prefer to have a more radical surgery preventatively, even though the complications from a larger surgery are more likely.

From a cosmetic standpoint, breast symmetry is more likely if I have the same surgery on both breasts. My breasts are small but nearly perfect and I’d like them to stay that way. While I didn’t intend on ever having breast augmentation, I always fantasized about slightly larger, perky breasts, especially as I got a bit older and began to notice gravity’s gentle coaxing. Now I’ll get my chance. You wanted a silver living, here you go.

That being said, I want a very natural look and highest safety rating with my new breasts. This means I will likely be doing a tear-drop shaped*, cohesive silicon implant, also known as a “gummy bear” implant. They don’t leak and have a very natural appearance and feel. They feel like a new, just-opened gummy bear, not one that sat on the counter overnight.

I also believe, because I’m pretty active, that I’ll have the implant placed above the pectoral muscle. This is much less painful during recovery and eliminates the chance the implants will move around when I am dancing in aerial silks or otherwise flinging myself around dance floors and music festivals.

The mastectomy surgery will be performed after I’ve recovered from the last chemo treatment so likely early November 2016. Skin expanders may be placed during that surgery to allow for healing and ensure the final implants look, feel, and behave like champs. Then, they’ll swap out the expanders with soft, snuggly gummy bear implants for us all to enjoy a few months later.

I’ll follow up with more info once final decisions have been made and post pics as I can.

*Updated implant info here.

Fortune Cookie Wisdom: Keep Going

Round 4 of 6 today. My head is frozen solid with my cold caps and my amazing ladies cancer team are knocking it out of the park. The oncology doctors seem very pleased with my progress and feel I make an excellent tumor mercenary. Also, everyone is dumbstruck I haven’t yet lost my hair! #penguincoldcapsrock I daresay today is going smoothly. #dontcountchickens

Tables Have Turned

The tumor in my right breast never hurt. Before I knew what it was I touched it a lot and not always gently. It never gave even a whimper. Then, the biopsy was a spear that wounded it. And it was pissed. It roared and ached and swelled and bruised. It is like it knew it had been discovered. But there was nothing it could do. We found out yesterday it is fighting a loosing battle.

The tumor has reduced by 50% according to the radiologist at the mid-way mammogram and ultrasound. The chemo is working!

Tomorrow I have Round 4 of 6 and I’m going into it with a quite different attitude. Knowing that we are fixing this makes the dark cloud and discomfort of treatment worth it.

Bring it, fucker.

Do I Get a Refund?

In an attempt to identify why I developed breast cancer at such a young age, I met with a genetic counselor and decided to undergo what is commonly known as the BRCA1 and BRCA2 hereditary breast and ovarian cancer test. In fact, they tested for 32 different gene mutations that may indicate a predisposition to breast cancer and a variety of other cancers.

I have 2 baby nieces and 2 younger siblings so the decision was easy for me. It was also covered by insurance because of my age. I wanted that information. I believed it could save my life and possibly even save the lives of my family members. To me, having the knowledge, no matter how terrifying, was no question.

But I was appalled to find out that there is such prevalent discrimination against those who move forward with genetic testing and discover a mutation. While I am protected from being dropped by my current insurance company should a mutation be found, I was told legislation does not currently exist to prevent me from being turned away should I attempt to procure a new insurance policy or employer. Changing jobs, starting my own business, even shopping through the Affordable Care Act marketplace could (and likely would) cause me major problems and great expense from an insurance standpoint.

That is bullshit.

The difference between me and any other person who remains untested is simply information. Nothing more and nothing less. Being tested only gives me information about my likelihood of suffering a life-threatening disease. It gives me the chance to do something about it, to make decisions that could save my life or lesson my suffering by being proactive. Mutation information would also help me make immediate decisions about my treatment and ultimate survival chances. Why would anyone want to punish me for getting that information? It is shameful.

It is also unreasonable. While I don’t have certified stats and figures on insurance costs, I believe that acting to prevent catastrophic illness is in both my interest and the insurance companies’. Getting cancer is, I believe, far more expensive than preventing it. In fact, I can attest that I have spent (as has my insurance company) far more since being diagnosed with breast cancer than I ever did prior to on healthcare expenses. The difference is astronomical.

Is it a crap shoot? Sure. But, I believe people should be able, especially in the face of an unusual diagnosis or a strong family history, to collect as much information that will help them as possible and not be discouraged from doing so by fear of discrimination.

So, while I ended up having NEGATIVE test results, I am still disgusted that those that get unfortunate results have the added burden of knowing they will be treated unfairly for the rest of their lives. Simply for having information, these people will suffer twofold.

I hope you’ll join me in advocating for legislative protection of genetic testing privacy and discrimination. You can’t change your genes and you certainly can’t pick and choose the diseases that may result from them. And no one should ever be persecuted for acting in their own (and their family’s) medical interest.

A useful journal article on genetic discrimination:
http://annonc.oxfordjournals.org/content/22/suppl_1/i60.full

 

 

Our own way

A year ago this month, I swiped ‘right’on a curly-haired, bearded photo on Tinder. We exchanged the standard witty banter about his notable hair and our mutual astrological sign. He showed up late when we met in a tattered t-shirt. And I liked him.

Fast forward…When I found out I had cancer he was sitting next to me in the doctor’s office. In fact, it was he who first felt the lump and encouraged me to get it tested. I told him I understood if cancer was beyond his dating drama threshold. We had only been together for a short time and it was great. But, he certainly didn’t sign on for this when he swiped ‘right.’ Neither of us did.

Fast forward…I sleep for about 4 straight days after each chemo treatment. My mom commented how unusual it is for someone to serve as a human pillow for so many days in a row. I’m not sure how much karma I had to cash in to get such a beautifully curly, bearded Libra pillow but I’m sure glad he stuck around.

13627033_10154197144596368_7028789516077903412_nWe are supposed to be making out in dive bars across Texas, not discussing euthanasia and hair loss. I’m an emotional landmine and he’s got plenty to worry about even without my epic problems. This is heavy stuff, far too serious for a relationship only now 1 year old. But, we’re doing it. Now in hindsight, I’m not sure I could do it without him.

He gets to hear my most profound thoughts and debilitating fears as I come up with them. He now knows how I handle the worst, the hardest, the most difficult. He sees the most intimate, complicated parts of my personality revealed at the same time they become apparent to me, things you cannot and would not EVER put on Tinder. And it is hard. And it is beautiful. And I’m a stronger, better person for it. I believe he is too.

I think he entered my life for a reason. He’s known in my Nebraska hometown as the boy-hero who so enthusiastically fondled my breasts that he discovered this murderous tumor and quite possibly saved my life, a fact he’s still reconciling every time he shakes my dad’s hand.

I hope the reason is so much more than that. #ThanksTinder