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 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.

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.

Beautiful Mind

Who is responsible? Who takes the blame?

Cancer is tricky in that the culprit can equal self. Sometimes I feel like my body went rogue and betrayed me. I feel angry with my physical self for doing this to me. I’ve personified my breast, disassociated with it, and consider it the enemy.

This is tough because it means that I hate myself. I want to destroy myself. I’m my own worst enemy.

I’ve never felt this way and I find it very unsettling. I love myself! It is both defeating and unproductive to hate and love at the same time, in this scenario and in all areas of life. So, I’ve got to work out a plan for forgiveness and reunion.

My boyfriend’s heartwarming response is that my breast is the victim, attacked by a powerful villain. It deserves compassion, not animosity. I am not at fault. I’m grateful to be reminded of this and it does allow me to soften my feelings of self-loathing. By focusing on cancer as foreign or separate, I can move beyond my negative narcissism. Faceless, nameless, and without origin, “it” isn’t me. I didn’t do this.

As I move closer to mastectomy surgery, I find it easier to grant mercy. I’ve started looking at my breast as a friend that will soon pass away. I’ll miss her dearly. I may throw a wake! I’ve also begun to feel gratitude towards my body for overpowering the invader. Perhaps one day I’ll even call myself a hero. Not yet, though. We still have a bit work left to do.

Final round a week from today!


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).

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.