Fortune Cookie Wisdom: Accept, Feel Better

A trip to my jolly dermatologist proved useful after all. My hair is falling out because of something gloriously juicy to say aloud: Telogen Effluvium.

This is a form of hair loss that is common after a traumatic event such as cancer treatment, surgery, even pregnancy, high fever, or a serious case of the flu. It is not the same as the hair loss associated with chemotherapy, though chemo may be contributing to the “trauma” my body has experienced. Basically, it is just serious hair shedding caused by a disruption in the hair’s growth phase.

Normally, hair grows from 2-7 years, then it chills for a few months, and then falls out to be replaced by a new hair. In my scenario, the 2-7 year growth phase was disrupted and the hair was pushed into its chill phase and now the fall out phase a little early and all at the same time.

The good news is that the shedding should end soon, based on how much easily fell out when the doc tested it. Also, it is pretty much consistent over my whole head so no bald patches will show. In fact, the doctor predicted that no one would likely notice (except me) since you have to loose 50% of your total hair before it becomes noticeable. He didn’t think that would happen to me. He believes the cold caps did their job perfectly: protecting the hair follicle from chemo circulation and preserving my hair.

More good news is that if the hair is falling out, it is already replaced by a new hair, though under the skin still. It should emerge shortly.

Hair grows about 1/2 inch (or more if you’re really healthy) each month so while it may take a while for my hair to be thick and pretty again, it should regain some volume within the next few months. It may even grow back wavy! Did I hear mermaid hair?!

The doc suggested I eat 2 servings of protein every day, 3 if possible, and make sure I’m eating food with lots of iron. When you’re healing from surgery or chemo, the body diverts vital nutrients like protein and iron to more important areas of the body that need repair than hair (things like heart, liver, brain, and skin). Hair is considered quite a luxury in the pecking order of nutrient allotment turns out.

Doc also said that Rogaine is a good option for me. Rogaine helps to grow new hair once it has fallen out. Normally, Rogaine is something you have to use ongoing because it originated as a solution to male pattern baldness. As soon as you stop using it, the hair it helped to grow falls out. Since I don’t have a type of hair loss that is ongoing, this isn’t a risk for me. Mine is a one-time incident. So, I can use Rogaine to speed up my hair growth but I’m not signing myself up for a lifetime of costly scalp treatments. My new hair won’t fall out after I stop using it because it is meant to stay in place on my head anyway.

While there isn’t anything I can do to make the hair stop falling out, making sure I have LOTS of good nutrients should help my new hair grow back quicker and in better shape.

So, first, I take big, deep breaths. Then, I eat a handful of almonds. Then, I keep doing life like a boss. It is very hard for me to feel helpless. But, I suppose learning to accept that some things cannot be controlled is a useful lesson.

KMAGYOYO

I’m frustrated. My hair is falling out. My eyelashes are thinning again. I don’t know why. I’m months beyond chemo and surgery. I should be past this! It makes me realize how not past this I am. That dark cloud hovers in my peripheral.

I tell my cancer team about my hair loss. They recommend I see a dermatologist. This is puzzling. By puzzling, I mean infuriating. They sure were good at making my hair fall out. But, making it stop or growing it back isn’t interesting to them. It is the ultimate in passing the buck. It is KMAGYOYO. It made me cry.

I get it. They did their job. I’m not going to die. But now I have to live.

For the first time in my life, the sensations of life and living are distinct. I always used to live to the fullest. I really did. Life and living were one in the same, an effortless marriage I took for granted.

Now I’ve had the experience many only have towards the end of their life…the slow decent into just hanging on, not knowing if you’ll get to come back. Chemo really takes you there. It is unspeakably difficult. The recovery is snail paced. I’m impatient.

The doctors solved my one big problem but created a million other, smaller problems that I’m now trying to sort through. And I realize that I’ll be sorting through them with just my worries and my calendar. Time, it seems, is the only real cure.

Put It In My Mouth

Let me tell you one serious, fundamental, non-negotiable fact: I love food.

Between the throat-swelling heartburn and malfunctioning taste buds caused by chemo, eating ranged from uninspiring to impossible. It was physically painful to eat at times. A sensation most of us don’t notice after swallowing, I could feel my tender esophagus attempting its wave-like motion to move food down. Ouch! Meat, bread, even my birthday cake was not possible. I choked down over-cooked noodles and ice cream or didn’t eat at all.

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Card from a dear friend that I framed for my kitchen. That’s how much I love food.

When I could eat, the taste of food, even food I love, was severely muted (bland) or incredibly intensified (think mildly spicy became aflame, pickles turned wasabi harsh). Some foods even tasted as though they were spoiled or rotten. Water had an unfamiliar medicinal flavor. Wine was disgusting. Eating, a ritual I have always enjoyed with giddy enthusiasm, became a dreaded chore.

Every 3 weeks, I would feel good enough to stuff my face for a few days and then do it all over again. Chemo’s repetitive torment is the worst.

I’m nearly 3 weeks from my final chemo treatment; the “stuff my face” phase. But, I don’t have to do it again!! A trip to Trader Joe’s yesterday nearly brought me to tears. I bought dill pickle potato chips, chocolate almond trail mix, sourdough, and chicken breasts. I spurlged on charcuterie and expensive cheeses. Can somebody say frozen pizza?! I luxuriated in the aisles with dream-like hypnosis. I went through again to catalog what to get next time and lovingly touched labels like a junkie at a 1970s NYC after-hours nightclub. Glory hallelujah! I can eat again!

For those of you going through chemo or preparing for it, eating will no doubt be a challenge. I’m sorry to say I had to learn some food-related lessons the hard way. For example, just because I felt good enough to leave the house didn’t mean I could order fried chicken with poblano gravy and fries.

Fortunately, some foods were both easy on my digestive track and tasted ok. I went through gallons of ice cream over the last 5 months which may explain why I didn’t lose any weight during my treatment. Strangely, sushi was a pleasant surprise. The soft fish was easy to swallow and the tanginess of soy sauce and roe was a delight. Everyone is likely wildly different in this area. I wish you the best and, most importantly, want to remind you chemo ends and life gets (sorta) back to normal. Last night I made beef stroganoff! You’ll be tucking into your favorite dish again soon too.

Now for a grilled Italian truffle cheese sandwich and tomato soup with a salad and an ear to ear grin.

02 Rachael

Pot isn’t for everyone I realize. I don’t care for the stuff myself after a rather misfortunate bus trip to Nimbin, Austrailia in college. That was before I got cancer.

The physical and (most surprising to me) emotional effects of chemotherapy are severe. Show-stopping, jaw-dropping, hardest-thing-ever severe. You simply cannot imagine the comprehensive body trauma of this treatment. It is a wonder they call it a cure at all.

Many of the effects of chemo are strangley non-specific. The literature given to me before I began treatment stated such vague expectations as “feeling generally unwell,” a staggering understatement. While my oncology nurse tries her damnedest to treat my side-effect symptoms with additional medicine, she can’t realistically solve general unwellness. Add acute, sporadic depression, the kind that can only be explained by facing one’s own untimely, unfair, unexpected mortality, and you’ve got quite a puzzling medical conundrum on your hands.

There isn’t a single non-addictive drug available that combats all these things at once successfully except cannabis. Texas legalized CBD oil in 2015* but has not yet legalized medical marijuana use. I’m fortunate, however, to have access to both THC and CBD products, even though my means are not always legal. I feel so, so sorry for patients who do not.

Let me be very clear. I’m not gazing into a lava lamp while listening to Bob Marley, giggling and eating Doritos. I’m sick as fuck. There is no charm in my drug use.

A dear friend recently visited a farm in Oregon where they are growing organic, medical-grade hemp for use in CBD products to treat patients with cancer, alzheimer’s, epilepsy, and other debilitating diseases. She was able to name one of the rows after me. There were lots of tears when I got the photo of this beautiful gift, lots of tears.

I want to invite anyone opposed to the legalization of marijuana to pop in on a person with cancer a few days after chemo treatment or spend just 5 five minutes in the chemo room with me. I want you to look into the face of anyone with cancer or MS or schizophrenia or any other of the terrible diseases and disease treatments that benefit from marijuana use and see that pain. Your mind will be forever changed. As more and more lawmakers do these things (and more and more citizens demand they do), I doubt very much pot will be illegal in Texas for much longer. I hope that both the restriction and the stigma of medical marijuana are soon a thing of the past.

* While CBD is legal in Texas, DPS continues to make it difficult to acquire it, including at People’s Pharmacy where I purchased mine.

No Mother’s Day

Cancer has caused me to face a great number of things, mostly all difficult, some unexpected. One thing I’ve found most difficult to talk about is its effect on my fertility. I will not be able to have children after this.

How that makes me feel is still in progress. I didn’t have a strong desire to have children for the sake of them. I’ve always maintained that if I found the person I determined worthy enough to combine DNA to create our superior offspring we’d make those decisions together. I was also open to deciding with my partner to remain childless. I intended to put it out of my mind until such partner was discovered and I did. So, when I was sideswiped with the realization cancer would take that option away I didn’t have a plan.

At first I felt that I should do something so I met with a fertility specialist. He had options, the recommended being find a donor and freeze fertilized eggs before treatment. A less recommended option was to freeze unfertilized eggs. These options took time and/or a relationship I didn’t have.

Finally, there were drugs I could take that would suspend fertility in the hope my ovaries would regain function post-treatment (Lupron was one recommendation). This method would entail a very fast, brutal decent into temporary menopause. I considered it. I even spoke with Livestrong Foundation about financial assistance as fertility treatments are not covered by my insurance.

In a moment of courageous defeat, I simply said no. I was too overwhelmed, too scared, too heartbroken for any more decisions or procedures or drugs.

I told myself I don’t have to feel sad about never being honored by my partner to have our children. I told myself I don’t have to feel left out of the pride I know parents feel. I told myself I might not have been good at it anyway. But, that’s a lie. I would have been great at it.

So, I’ve settled into telling myself that something more terrible than cancer would have happened should I have been a mother. For something to happen to your kid is very likely the most painful experience. In fact, I’ve seen this pain in parents that have lost children. I see it in my own parents’ faces as they help me through my disease. I think of cancer as sparing me that pain.

I also realize time is running out for me and perhaps the parent path was just never in the cards for me. I accept the decisions made in my life without regret, including my decision to value quality relationships and spontaneity above the biological gift of bearing children.

I’ve gotten used to the idea of not being a mother I think. When I’m honest with myself, it is a bit of a relief. I wasn’t completely sure I wanted children so really, the only thing taken away is the option. There are plenty of benefits to being childless, benefits I’ve been enjoying for 35 years. I’m sure I’ll be fine and, on the flip side, I maintain families are made of love and commitment, not just DNA.

One thing that continues to bother me, however, is the unfairness with which parents sometimes treat the childless. I may not know what it’s like firsthand, sure. But I can comment on some children’s issues. I do have a stake in the future of humanity after all and I’m not beyond spending time with young people as a non-parent. In fact, I feel I have a lot to offer.

So, parents, please do not pour salt in my tiny wound by assuming I don’t “get it” because I don’t/can’t have children. You never know who might end up feeling you don’t “get it” when you strike a nerve with someone that had their mother’s day taken from them without permission.

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!

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.