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.

Before & After: A cold caps success story

Every single day since we began this journey in May I send thanks for the scalp-cooling technology that saved my hair, Penguin Cold Caps. I began using the caps on June 15 and had my final treatment of TCHP chemo on September 28. Here are my before and after pics.

I got my first haircut in 5 months a few days ago. As you can see, the only real difference is that my hair GREW during chemo resulting in rather gorgeous ombre color.

No one…and I mean NO ONE believed the caps would work this well. My doctors are simply wonderous of the results. My chemo nurses have never seen it work so well for anyone, ever. Every single person at Austin Cancer Center, from the receptionist to my stern breast surgeon, comments on it every time they see me. There is no better way to put it:  We are thrilled!

I can only attribute this amazing defiance of chemo side effects to my equally amazing chemo team. With meticulous care, these ladies strapped frozen hats on my head for upwards of 8-10 hours each treatment, swapping every 30 mins (or even more depending on the temperature which they monitored like hawks). They became experts at getting these on and off with extreme efficiency, making sure my scalp never got the chance to warm, trying to keep me comfortable.

I already posted a few tips that likely contributed to our success but I wanted to add a few more lessons learned now that we’re finished.

  1. The most unexpected part of using the cold caps is the pain. It was very, very painful. My boyfriend laughed when he heard they called it “cooling” the scalp. Monumental understatement. These things are FREEZING!! The caps must be a prickly -30 degrees Celcius (-22 degrees F). That is significantly colder than the average temp of the Arctic ocean. As soon as you get used to the pain, it is time to replace the cap with a fresh cold one. When they put the first cap on, I could not speak. It literally was all I could do to breathe through the pain. I tried various types of pain relief. Only the most serious opiates seemed to work (and even that only took the edge off). I challenge the toughest person on Earth to a pain tolerance competition and I will win. Cold caps are not for the faint of heart.
  2. Many people with cancer bring a new friend to each chemo treatment to disperse the assistance among the many loved ones that want to help. You can’t do this with cold caps. My team went to every treatment and became experts at tracking and using them. You don’t pick this up in a few minutes. We practiced the whole night before my first treatment after watching an hour of instructional videos and still had the damn things upside down for half of the first treatment. It is a skill you should task with only a dedicated, reliable few.
  3. Unquestionably, this is exhausting work for those that help you. My mom got up before the sun each treatment to prepare the caps for transport, breaking up dry ice with a hammer and construction gloves. We lugged 2 100-qt Coleman coolers filled with caps and 80 lbs. of dry ice from my apartment to treatments each time. My mom and friend were on alert for 10 hours on chemo day, checking my temperature and preparing the next cap. They were moving, lifting, and otherwise working their tails off the whole day, 6 times. As if that wasn’t enough work, there is an emotional toll with this job as well. They watched me grit my teeth through the pain I made them inflict on me, a sobering task for any loved one. And they did it graciously and kindly. And, they fucking nailed it. Again, cold caps are not for the faint of heart and that includes those who assist you.
  4. It was also exhausting for me. Instead of resting peacefully or catching up on Rolling Stones magazine like everyone else in the chemo room, I was frostbitten, poked, yanked, and stressed.
  5. My hair still thinned considerably. What seemed like huge amounts came out in my hand and comb all the time. I lost my pubic hair and most of my eyebrows. There were tears and considerable anxiety that each round would prove too much for my poor hair follicles and it would all be gone. I had lots of hugs and reassurance from my boyfriend which did ease my fears. I also did a lot of soul-searching. Even though the cold caps worked, I know now deep in my heart that beauty really does lie within. It cannot be taken by cancer. It cannot be damaged by fear. It is not a thing that can be had at all. It is a feeling. It is a choice.
  6. It is very expensive. The cold caps are rented for nearly $600/month. I needed mine for just under 5 months. I also spent about $120 each treatment on dry ice. All in all, we spent nearly $4K to keep this hair on my head, far more than most wigs cost. Luckily, my Dad funded this experiment and for that, I am forever grateful. (I am going to submit to insurance and I’ll post again with how that goes.)
  7. It is worth every single minute of effort and every single cent. I was truly terrified to lose my hair and irreconcilably impatient with the thought of regrowing it. I would do it again without a moment’s hesitation. I’m so, so grateful for the help I received and for the peace of mind and privacy it has allowed me during this difficult treatment. I want to tell everyone who gets a cancer diagnosis that this is an option for them.

On that note, I hope you will consider supporting my fundraising campaign benefitting Hair To Stay, a non-profit that offers financial assistance to those who wish to try cold caps. A gift to them is a gift to me.

If you’re considering cold caps, please send me a message. I’m happy to answer any questions about my experience. If you’re in Austin or Omaha, me or a member of my cold cap team of ninjas would love to connect or help out in any way.

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.

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

Penguins and Blue Lips

Two things I learned very quickly in the first month after diagnosis is that everything sucks and I have no control. We’ll call these lessons 1 and 2, respectively.

One thing I learned slowly over the first month is to avoid internet searches about cancer. If you want to spend the rest of your nights in a wide-awake, panic-stricken nightmare, try Googling HER2+ or mastectomy pictures. Trust me, you don’t want to go there. This is lesson 3.

Now, as I learned these important lessens, I discovered something wonderfully distracting: The Rapunzel Project. It came at a very good time. I needed something to focus on that wasn’t related to terrifying treatment options, facing my own mortality, or confessing my illness to my loved ones and watching their hearts break. Any little thing was bound to work.

The Rapunzel Project led me to Penguin Cold Caps. This is a system of frozen gel helmets that freeze your scalp in the hope that chemotherapy will not damage the hair follicle causing hair loss. The type of chemotherapy I will be doing (TCHP) is notorious for causing total body hair loss. I was intrigued.

After a few more days practicing lessons 1 and 3, I decided to test lesson 2 and take some control. We were going to freeze my head and see what happened.

My dad is a blessing and agreed to fund the project. This is an expensive experiment so I was so grateful for the investment. My mom, also a blessing, agreed to become an expert frozen hat assistant.

20160721_175533They said my lips were blue during that first treatment. I couldn’t speak because it was so painful when they put the first one on. Tears ran down my cheeks and I held my hands in prayer position, something especially unusual for me. But, we did it. We even got better at it the 2nd round. And I still have all my hair…at least for now. I have completed 2 rounds of chemo. I’m 31 days from the first treatment.

Lesson #4: Do what you can, no more, no less. I needed that little bit of control and I took it. You can’t imagine the joy I felt reading the Rapunzel Project and Penguin websites those nights alone at my house before treatment started, out of tears and running low on wine. There was something I could do, something I could try! That kind of freedom is a lesson in itself.

For those reading this about to start this path, everything does suck and you don’t have much control. You already know that. But, don’t feel ashamed to distract yourself, even in vanity. These little things can mean a lot.