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.

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.

Let’s (You) Talk

captureAt my final chemo treatment and bell ringing ceremony I was presented with a certificate of achievement. It delightfully proclaimed I am now qualified to talk about my experience with anyone who will listen. I’m afraid I jumped the gun. Now, I’d prefer to listen.

I have been talking, ad nauseam, about my experience and feelings for 5 months now. I’ve spent enough time in my own head and I’d really now like to know what everyone else has been thinking but not saying.

I realize withholding things from me before was polite, even necessary at times. I wasn’t capable of hearing it at first. It is one of the reasons I didn’t tell very many people until chemo was complete. But, things are different now so lay it on me.

I want to comfort. I want to commiserate. I want to tell you everything is going to be okay. I’ll scream and yell and curse this thing that happened together if you want to. And I know there are a few of you who want to. Because this thing didn’t just happen to me. It happened to us.

We can also talk about something else. Trust me, I’m so ready for a new topic.

Knowing what to say to someone who is sick is really difficult. (This might help.) Expressing fear and anger or confessing what you need is hard also. I feel the same! But, getting back to normal requires one of two things from all of us: address the elephant or ignore him. I’m ready to do either.

Vibe = Tribe

wp-1475849245204.jpgMy grandma sends me my horoscope weekly from her home in Wyoming. It is truly adorable. This week my horoscope really struck me.

Perhaps it was my birthday or spillover emotion from my last chemo or a very brave live podcast by this amazing breast cancer advocate (also a Libra) but I’m very emotional.

When I look back on my life, I see so much beauty and love. These last 5 months perhaps were the culmination of that love. So, so many people have moved this mountain with me. I am overwhelmed. I am humbled. Sometimes I am even speechless. (Some of you just shook your head in disbelief on that last one.)

Your cards and texts and phone calls and visits have made this summer so precious and this challenge worth doing. Even during the hardest parts I could feel my tribe rooting for me, believing that we would pull this off. I know my tribe is proud of WE did.

My home is about to fill up with some of these incredible people for #ACLfest. I can’t wait to make some new memories. I couldn’t do this without you! #YourVibeAttractsYourTribe

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Chemo…check. #nailedit

I don’t know how you thank someone for all that I’ve been given since May 17 when I found out I had breast cancer. I’ve never needed this sort of help. I’ve never been offered this sort of gift.

How do you thank the girl that took my hand without any hesitation and led me to the scariest moments of my life, organized everything, and then orchestrated the plan that would save my life? She sat between me and cancer like a rock breakwater, shielding me as best she could so that I could withstand all that was coming at me. She heard information that I was too afraid to let anyone else hear. And while I know it must have been impossibly hard, she never let me see anything but the solid, steadfast confidence she had in us. If there is anyone that is brave in this situation, it is her.

How do you thank someone who signs up for the most emotionally exhausting task of looking after a sick person for months?  Dropping her own plans and completely devoting all time and energy to getting me well is the epitome of selflessness. Comfort is hard to come by when you’re recovering from something as traumatic as cancer and it can’t come from just anywhere. She was the only one for the job.  I can’t imagine the agony of watching a loved one suffer. But if I ever am gifted the chance to take care of someone in need, I hope I do it just like her, with patience, grace, humor, and vodka. I guess moms never get a day off.

There are so many people to thank which I’ll get to in time. But, when I rang the bell last Wednesday I rang it for these two women. These ladies have held my hand and filled my water glass and wiped away my tears and even helped me masochistically freeze my own head. These beautiful, strong, amazing women got me here. I can never repay them but I’ll spend the rest of my life trying. Thank you, thank you, a million thank yous.