On Wednesdays, we wear coldcaps.

“I know…..you can coldcap! You just have to start after  October 19th,” my oncologist said, hoping to get me out of the state of hysteria she put me in minutes prior when she told me I would lose all my hair. She briefly explained that coldcaps are used to constrict blood vessels, stopping the medicine from reaching hair follicles and preventing hair loss. Cool, pun intended! What a time to be alive and a patient at Dana Farber—one of the key oncology sites offering a medical trial with PAXMAN cooling technology.

At the time, and even weeks later when I was being fitted for a one, I didn’t know if this was something I could afford or if my insurance would cover the cost, but I clung onto the hope of saving my hair so I kept going forward with every intent to be a part of the trial.

This coldcap “code of conduct” I put together is a result of research and personal experience but always consult your doctor and /or reach out to the PAXMAN hub directly with questions regarding your unique condition. I included the link here. On a weekly basis, doctors and nurses came to check out my hair and ask about my thoughts on the trial but it wasn’t until last week that I learned I was the first one to successfully finish the program! I do see a lot more PAXMAN kits in the waiting room now but when I started the entire process everyone including me was confused about the protocol, and I was desperate to find information and personal testimony. I decided then that once I finished I would share anything I could with others to make this hair saving mission a bit easier.

The PAXMAN KIT:  (Ref: www.paxmanusa.com)

  • Your own Paxman Scalp Cooling Cap
  • Your personal neoprene cooling cap cover. The cap cover has an icon that is color-coded to your size
  • Headband to be placed below the ears, to reduce discomfort
  • Spray bottle to moisturize hair prior to putting on cap
  • Tangle Teezer The Original detangling hairbrush
  • Hair conditioner and shampoo
  • Patient brochure with instructions and specific hair care–related information
  • Towel to dry the hair and to dry the cap after the session
  • Pay-for-use token to activate the Paxman Scalp Cooling System for your treatments (which is explained by the Paxman Hub case manager)

A few hours after my fitting I received a call from a PAXMAN representative that explained the process for obtaining this genius device. The PAXMAN kit is $ 500 and you are required to prepay for every cycle based on your regimen. The cost will cap at $2200 / or 12 cycles which is what I needed. My kit did not arrive in time for treatment so I was told a PAXMAN superwoman would fly out and meet me with a temporary one? Seemed too good to be true but I didn’t know any better—but there she was as soon as I got settled for treatment. This shipment error turned out to be a blessing since I got a chance to learn everything first hand.

FYI:[ http://www.hairtostay.orgHairtostay- is a nonprofit organization that raises money for patients and will reimburse some of your coldcap expense based on your income. The application process is very straight forward and it never hurts to try.

  • THE APPLICATION: I found the tutorial videos very informative on how to apply the cap and out of the two ways shown I learned that it was easier to apply the brain looking cooling hat first then the insulated hat. I used the chinstrap to really tighten all sides but would adjust the fit during my pre-cooling time when I when I was able to feel the cold against my scalp.
  • SHORTER CUT: I cut about 5 inches off the length before starting treatment to take the weight off. I wasn’t thrilled about this since the whole point of this is to save hair but I knew it would be easier to manage at shorter length.
  • KEEP TRIMMING: I also trimmed my hair after week 3 and week 7 so that as it got thinner it would look fuller. When cutting, I explained my situation and only allowed the hairdresser to wet the ends of my hair and handle it ever so gently.
  • PRODUCTS: I felt a sense of relief to have the shampoo & conditioner provided but after my first wash I realized that the shampoo tangled my hair more so than products I typically use, and since those are also free off harmful ingredients I decided to stick with my own stuff. (I do recommend using the products provided; there is a reason they come included but also consider what is best for you alone).  I switched between my Moroccanoil volume shampoo and conditioner and an all organic shampoo and conditioner by BLNDN which was specific to my hair color and type. I love this line and included a link incase you’d like to check it out.
  • DRY SHAMPOO: I used two kinds: one by BLNDN & Jet Lag by IGK both smell awesome and make the hair look and feel clean despite the truth. I would only use dry shampoo on day 3 or otherwise it would build up and make my scalp itchy.
  • HAIR WASHING/ OR LACK THERE OF: Limit hair washing to once or twice per week. This was difficult to get used to but after seeing how much hair came out during a wash, I was instantly motivated to deal with greasy hair. I learned to simply wash out the conditioner I put on during treatment the morning after (I did use the PAXMAN one then) and wash the hair 3 or 4 days later when the follicles had time to recover from the drugs.  The shedding was minimal with this routine but I only learned this toward the end.
  • WATER TEMP: Use cold water when wetting and /or washing hair. This is a necessary evil.
  • WASHING: Keep hair down as is and avoid tangling it by moving it around your scalp. Massage gently in place and use plenty of conditioner even at the root. (Something I avoided before, but it makes the brushing out much easier.
  • COMBING/ BRUSHING: When wet: use a wide tooth comb (wet hair comb )link to buy at target) start from the bottom and comb gently up your hair. When dry: Use The Tangle Teezer brush; it’s important to brush your hair often despite the fear of  shedding because leaving it be may tangle and eventually cause more damage.
  • CARE: In short, don’t touch it, don’t play with it, don’t even look at it.

Do not wrap it up in a towel after a shower. Hair is most sensitive when wet and wrapping it up will put pressure on the endangered hair follicles.

Don’t use hair dryers or styling tools, air dry only and wear down as is.

Get a silk pillowcase, it won’t pull your hair and it will keep it in place while you sleep, which will prevent any unnecessary hair loss from detangling nighttime knots. Also great for skin, it will change your life, I promise.

Avoid hats, and any hair accessories (I did wear a very forgiving winter hat that       ]didn’t pull or put any unnecessary stress on the roots) and twice I wore a ski  helmet which you naturally want to stay away from but nothing traumatic happened.

Avoid putting it up. Unless you can’t keep your hands away from it then it’s probably safer in a very loose ponytail (so loose it doesn’t resemble anything close to a ponytail)

Bring back the scrunchie. Refrain from hair ties and even invisibobbles. I didn’t know they existed until now but Free People, Amazon,  Etsy & my guess everyone else is selling 100% silk scrunchies and I would imagine those would be the safest choice.A headband is used for comfort and to prevent the cold from freezing your very sensitive  forehead  (I found how important this piece was when I did an infusion without it, because Alexa likes to unpack my things- but that’s another story) but I did have to fold it in half  to avoid it from it pushing down on my eyelids so eventually I replaced it with a thinner one I bought at Lululemon (duh) and I found that to be most comfortable. Lululemon > everything.

To have and to hold to keep my scalp cold till remission do us part. I will now kiss my coldcap! Perhaps you noticed my wedding planning mode is in full swing and that’s due entirely to the fact that I was able to save my hair with the magical powers of scalp-cooling. But everything in  life is a trade-off and even though I would always chose to coldcap, it was not easy. My treatments which are difficult enough on their own were extended as I needed to pre- cool 30 minutes prior to treatment and an hour after. The constant brain freeze is painful and causes headaches. While in treatment you spend your time worrying you’re doing everything you can to prevent hair loss and yet you get home and continue to see significant shedding despite your efforts.  Your days are spent doing everything in your power to prevent your hair from falling out and it does anyway. Even when you’re succeeding you may feel defeated. You also can’t enjoy any of the hair you’re saving because you’re not able to do anything with it and most of the time it looks greasy and weak.  Last but not least, remember that coldcapping is a physical and emotional commitment and it doesn’t make chemo easier or less traumatic. It will still be hell, only cold.

“ But I am getting married next year” I said in the softest voice trying to dismiss the haunting images my brain created when chemo became my new reality. My previously positive outlook on this shitty situation did a 360 in a matter of seconds because for the first time I felt like no matter how upbeat or “strong” I was, I couldn’t save my hair from falling out.  My wedding day, as I envisioned it for years had changed and I lost a sense of control I once had. So being able to be a part of this trial renewed my sense of hope and allowed me to focus on getting better. Using coldcaps can be difficult and the stories I read online prior were somewhat terrifying. I often thought I shouldn’t even bother but every story is different and I chose my own happy ending so I hope you do the same.

Below are some pictures before, during and after… I didn’t exactly plan on the specifics so I chose the best examples i had in my Iphone camera….xoxo.


The good hair days…


Last highlight


being cool in a coldcap


way better, thank you snapchat


pre week 7 cut


post week 7 cut


Trying to enjoy short hair again


ski bum life


Bald spot where the coldcap didn’t reach


Week 1 post chemo 🙂


img_4989After 9  weekly trips to “Okemo” I was  ready for the real deal. So I traded my beloved cold cap and IV-Benadryl for a helmet and a pair of twin tips and took joy in freezing my ass off on purpose. Kudos to my bossman for sharing his cozy cabin up at Mt. Okemo on a moments notice. Todd, I’ll remember you on Boss’s Day!

Clinical studies have shown that a bad day at the mountain beats a good day in treatment. So it was basically doctors orders. Besides I needed new material for my blog so  I took pictures of trail names like “Challenger”,”Defiance”, even  “Ledges” (for dramatic effect) hoping to make another ski/ chemo analogy but lately, its become impossible to relate the two.

Since my first infusion I have been tormented by a skin condition on my hands. This Eczema like rash affected the areas between my fingers and surrounding my joints and eventually the soles of my feet.  I learned this special form of torture is called Hand Foot Syndrome and it is a side effect of chemo. This rash can make a very good day bad, if its not burning, its itchy and when not itchy its painful its basically something all the time, and never okay.

In addition to HFS I have developed neuropathy in my hands and feet which cause numbness and tingling in my fingers and toes. It has become difficult to open my own water bottles, unscrew toothpaste or sifter through the diaper bag and be able to get anything out. I am actually able to do less things on my own now, than I was recovering from either surgery. Simple tasks that involve any use of my hand muscles or force are difficult, but if I had to chose- this would be my least annoying symptom.

The most irritating side effect of all time has been an all over itchy sensation that comes in phases of itch attacks that last about 20 mins. This is due to nerve damage caused by chemo drugs and am told it will stop once the treatment is completed though I am starting to doubt I will ever have my body back.  During these miserable phases I am unable to focus on anything except the urgency to scratch the affected area. Imagine 300 mosquito bites switching from your neck to your back  down to your foot all at once. This happens at the most inconvenient times like when I am checking Alexa in for her 15 month pediatric appointment or waiting for a check at brunch. These panic attack- like phases make it difficult to to do just about anything and have become more frequent with each treatment.  The palms of my hands and soles of my feet are most common areas of torture and because their at easy access  these attacks escalate quickly. It gets so bad I am often unable to continue a conversation until I run my hands under cold water to ease the intensity. Last week, I  removed my socks in the rice aisle  of BJ’s because I didn’t know what else to do. I feel I could never describe the severity of this but i wouldn’t wish this upon anyone, ever. It is far worse than any pain I’ve ever experienced and more debilitating than 20 drains hanging from my body at once.

I am beyond frustrated and feel trapped in my itchy body waiting for the next two weeks to be over so I can finally begin to get better. Taxol the culprit of these side effects is coming to an end and I will continue Herceptin for the remainder of the year. I don’t even care about more IV’s at this point. Benadryl and Ibuprofen provide brief  but beautiful times of relief and without this  magical cocktail I would have checked myself into a mental institution weeks ago.  Though there’s still time!


OKEMO 2018




When life gives you lemons, you pray they are lulu.

Happy New Year! Thanks for tuning in and I hope you like my new site.

This blog has given me the unique opportunity to sort out my emotions without having a preconceived conclusion on how they make me feel. While having cancer sucks, writing about it renders the clarity to see the good. Today’s story is one of many examples of “the good” that has come from my “sucky” situation.
I attempted to write this story more times than I’d like to admit until I realized it wasn’t my narrative.
If you had the pleasure to meet my (future) mother in law, MaryEllen, you have witnessed her ability to connect with complete strangers, over anything, everywhere she goes. So here is what happened when she was Christmas shopping at Lululemon.

Christmas shopping can be a daunting task if you stress over finding the perfect gift for someone.  Some people are much easier to buy for than others.  Kasha is one of those easy to please people, but I still wanted to make sure what I bought her was something she would love and be of purpose. I threw out a few of my ideas to Amanda, my son Greg‘s girlfriend, who suggested that I get Kasha a pair of Lululemon yoga pants. She told me Kasha has a pair that she loves but they were capri length, and this is certainly not capri weather.  She suggested a certain style and after checking them out online I went to the Lululemon at the Rockingham Mall. At this point I decided to also get Amanda a pair, since I know she loves them as well. I chose a pair for Amanda and then found a different style for Kasha, not the style Amanda suggested, but a style that I felt was of a heavier weight fabric.  Plus it was a herringbone pattern I knew Kasha would like.  As I was making my selections, one of the sales girls came over to me to see if I needed assistance. I told her I was all set and we proceeded to the register.  As she was ringing  up my purchases, we began talking about the pants that I had chosen.  She told me how much she really liked them, especially the ones I was getting Kasha.  I told her that the pants were Christmas gifts for my son’s girlfriend’s, and I had chosen the ones for Kasha in particular because they were thicker, and because she was going through chemo treatments in Boston and would get cold during the treatment so the thicker pants would keep her warmer.  The girl stopped what she was doing, looked at me, and asked “did you just say your sons girlfriend has cancer, how old is she?”  I told her about Kasha and getting her diagnosis, and about the treatments that she will be undergoing for the next year.  We agreed that it wasn’t fair for someone so young, with a little girl and a wedding to plan, to go through something like this.  She told me how she feels very strongly that insurance companies should lower the age of covered mammograms, which I agreed with.  We finished chatting, she finished my transaction, and I left the store thinking how nice and personable she was. But also thought perhaps I had blabbed too much to a perfect stranger! Later that night, while on my iPad, I got an instant message on Facebook from an unfamiliar name.  When I opened it up, this is what the message said –
Hi Mary Ellen – so sorry for finding you on here.  This is Dee & Rachael- the girls from lululemon Rockingham.We have set aside a couple things for your daughter in law.  We were so moved by her story and would love to make sure she is comfortable during this hard time.It’s just a couple pairs of pants and a comfy blanket.  You can pick them up at the store or we are happy to mail them to you or her.  Thanks for coming by tonight & Happy Holidays.

I was in shock!  I got right back to Dee and said I’d pop in the store within a few days.  When I went to the store I walked up to the 1st sales associate I saw and said I was looking for Dee, Rachael or Kayla, and she replied  “you must be Mary Ellen, I’m Dee!”  She told me how after I left that night that the sales associate who helped me, Rachael, had told her and Kayla, the store manager, my story about Kasha.  The three of them immediately agreed to put something together for Kasha and tried calling my cell phone to get me to come right back to the store, but the number they had was incorrect.  They thought of another way to find me and decided to look on Facebook since they said almost everyone is on Facebook.  And there they found me!  These three Santa’s elves, as I called them, did such a remarkable heartfelt deed, brought me to tears in the store.  I couldn’t thank them enough for their generosity, and also for caring so much.  They are three very special people with such kind and compassionate hearts.

I decided to wait until Christmas to give Kasha her special gift.  I told her the story and about the three “lulu elves”, and we all decided that this was what Christmas was all about, caring and taking care of each other. ~

Their kind gesture and compassionate spirit are both refreshing and admirable. They remind us all that an act of kindness has the power to completely change someone’s outlook on the situation. In my case, these small blessings outweigh the difficulties  of cancer and remind  me to cherish every good day, value my  time with friends and family and ultimately see this battle for “the good” and not the “sucky”.

Blind faith

Had I known how drastically my life would change in the days and months following the discovery of my lump I would have never given myself the chance to fight this thing head on.  In a classic snowball effect, the bottle-cap-size mass turned into a triple black diamond express.  While I am no expert, all those winters pretending to be a ski bum have finally payed off.

Since the very beginning I made  an unconscious effort  to only see, address and respond to the issues  at hand. I distinctly remember the horrifying look on the face of the ultra sound tech upon my initial examination. She left the room in a hurry to return with a Radiologist who insisted on doing the biopsy the same day. It took almost a week for the results to come back. It was then that I decided that worrying for the next 6 days wasn’t going to change the outcome and the only way to get through that week was to keep living my life. I have about a dozen similar examples and I’d like to think I have totally mastered the idea of compartermentalizing my feelings. In my opinion, if you have cancer- ignorance is bliss.

I was initially diagnosed with DCIS -Stage 0 Breast Cancer. I tested negative for protein receptors. Which means that cancer is not driven  by hormones like estrogen or progesterone and therefore I was not an OKEMO candidate. I remain thankful to the Doctor who made this  mistake in my diagnosis, it bought me time and spared me serious devastation about the road ahead. (Just to calm your fears, I no longer see that Doctor, and I don’t fault him as he was only going off my biopsy results which are only somewhat conclusive).

After 4 trips to OKEMO I’m shredding on mostly ice. The side effects are starting to kick my butt, I am often tired, get nose bleeds, my bones hurt from the inside and even though I have a full head of hair (thank you ColdCap) my hair is fragile and my scalp is irritated. Lucky for me I have so much more to focus on. Patrick, Alexa and Gussy bring me endless amount of joy and irritation I am often too busy to remember I’m tired from OKEMO(& blame them instead).  The excitement of Christmas and seeing my family and friends  push me to get up and go every minute, and more often than not I forget that I didn’t want to. Working 3 days a week has been the best and most gratifying distraction, kudos to my work family for totally making work fun.  I miss styling my hair and being able to wash it without constant fear of it falling out. Sometimes I imagine Alexa pulling on it and taking a whole chunk out but I dismiss those terrifying thoughts and am thankful I still have hair to worry about.

If you take the South Face Express Quad, you’ll find yourself at the peak of OKEMO where the elevation is 3,444 Feet. Take a left off the lift, secure your gloves, adjust your goggles, hit play on your iPhone shuffle (if its not frozen) go down Upper Wild Thing and you’ll find yourself at the edge of Blind Faith. It looks scary looking down but go  anyway. Thats my OKEMO, I can’t possibly worry about each side effect, the bitter cold sensation of the drug, or my icky IV site. I have to take the leap of faith and ski down. At times, I take  wide S turns and pizza when things get out of hand but  my goal is to get down, and I will, in one piece.When I do, you can buy me a beer at South Face Village Lodge. Ski ya later.

Thank you for reading. Merry Christmas and Happy New Year to You & Yours.

Tuckered Out at Okemo

Just wanted to thank you for your interest, kind replies and encouraging comments on my page, your support means the world to me. Your thoughts and prayers are the reason I am doing so well and I am so grateful for every good day.

For many reasons, OKEMO Day 2 was a lot like one of my favorite runs at the mountain- Tuckered Out. It’s one of those familiar trails that you typically warm up on, it’s also the one you’re willing to do when you’re just about done but the lift chairs haven’t stopped for the day. This time around I knew what to expect, I had my own Cold Cap, I packed a backpack full of snacks, and drank more water days prior, that I have in my entire life combined, to get my veins and body ready to shred it up.

This experience has taught me how important it is to communicate every concern to my  medical care team, despite how small it may seem, they are there to help make this bearable, so my advice is to let them. When I told my IV nurse that this was the worst part of my day she placed a hot compress on my hand, drew my blood, and got the IV in before I finished whatever I was going on about.

Then it was quick lift to the 9th floor, weight check, vitals, ColdCap, premeds and OKEMO. I noticed my nurse manually dilute my Benadryl  as it burns going in but as soon as I said thank you I closed my eyes. I woke up hours later after treatment was completed with 20 minutes of cooling left. I must have really tore it up because I was both starving and exhausted. Nothing sounded better than a burger and a beer so Kristina and I headed to Tasty Burger for our final run. The burger is just what I needed but for some reason I have lost any and all care for alcohol. Buzzkill, I know.  Prior to starting treatment I was warned about things tasting different to me, and to my surprise, the taste of food and alcohol remained the same. It is my allure to alcohol that’s diminished. So in all,  if I could hand pick my side effects I’d stick with the hand I’m dealt.

It is now three days post my run on Tuckered Out and aside from my aversion to delicious wine and ice cold beer I have had little fatigue and minor loss of energy. I am so lucky to report that my cold cap is my saving grace. Unlike  my first time at OKEMO where I noticed significant hair shedding on day 3 I have had 0 shedding this week so far and I will be holding my breath for the next 10 infusions hoping my lucky streak continues.

**FDA recently approved PAXMAN– Scalp Cooling in the US – the leading expert worldwide,  and  I was lucky enough to enter a study at Dana Farber. I hope and pray that scalp cooling becomes the standard of care for chemotherapy patients. It offers privacy and control, two factors often taken by chemo. So stay tuned for more on my cold cap experience.  I will share hair care tips and all cold cap information I wish was available to me prior to starting.


Jackson Gore Jan 2016

Okemo- day one


About a month ago a friend of mine 5 year old son asked his mom, “ has Kasha had her Okemo yet?” It took me a few minutes to process as we have all gone skiing together but when I said it out loud I realized what he was asking. I decided right then that Okemo sounds much more bearable than Chemo and that Okemo was the new name for my treatment.

I was so anxious to begin this process for two reasons. One,  I am petrified of IV’s -the sight of one makes me sick and that is how Okemo is administered. Two, I have seen “ My Sisters Keeper” and read all the online forums about how sick it makes you. How your hair falls out, so may as well shave it before and all other horrible things not worth to mention. ( I know I shouldn’t be on those sites but come on, who wouldn’t?  )  I know it was Day 1 and I realize that it may get worse  and that the symptoms are cumulative but who knows maybe Im the the exception and not the rule.

So Okemo went great, its all relative these days and  I say that because I knew I wasn’t going to a day spa for a facial. My cold cap ( a device that cools down my scalp before, during and after treatment to prevent my hair from falling out) didn’t come in time so I had the company professional meet me at the hospital with the one I would use for my first treatment. She taught me, Patrick  and all the nurses,  how to use it in order to get the best results. We actually all went into the hospital bathroom which was only weird when another patient tried walking in. Anyway, after my cold cap was on I got plugged into the ice machine and  they gave me fluids, Tylenol and Benadryl to avoid any allergic reactions to the treatment ahead. I fell asleep minutes after and Patrick was left to sign my forms.

I woke up about an hour after my treatment was done which is the added time of cooling I need to make sure Okemo doesn’t reach my hair follicles. I was’t sick just tired and hungry. Really hungry! It was desperate times too because I took apple sauce despite my aversion to its texture.

After that I was observed for 30 minutes which gave Patrick and I enough time to come up with dinner plans. Luckily my friend was working at one of the bars in the North End and so we went for a delicious dinner and a much deserved glass of red.

Today, I was happily surprised when I woke up feeling great and I couldn’t wait to get  back to work. I felt fine all day. Just really hungry and really thirsty. So happy to report its not as bad as the forums or the movies and I hope this continues but I’m keeping an open mind.

I am convinced that all your prayers and good wishes were the reason it went the way it did, so I want to thank you from the bottom of my heart. You mean the world to me<3


Anything but the “C” word


I really don’t have time for any of this! Literally, it took the doctor a couple of attempts before I agreed to leave work and go ” discuss” my cancer diagnosis. I guess you could say I was in shock, or maybe my apprehension was my way of making the news less terrifying. Or maybe it was both.

It is only the beginning of December, and despite my ability to remember every detail of everything that ever happens (just ask Patrick),  I lump July, August and September into one signature phrase:  “well, I don’t know yet I have to wait.” Wait for an ultra sound, a biopsy, a MRI, another biopsy, then a  double mastectomy, and finally a lympth node dissection. After all of that they say to me, “Well, you’re lucky, because after 52 weeks of chemo and anti-therapy treatment you should never hear from this again.”

I guess God has a funny sense of humor because there is nothing more ironic than feeling beautiful in your picture perfect wedding dress, then wondering whether the scars from my surgeries will be the only thing people see, followed by the immediate rush of fear of not being strong enough to make it to August 25th 2018 at all.

Not to worry, I have already decided I’ll make it.

I am so sure of it that I just ordered our Save the Dates. In fact, I even ordered extra– for all the beautiful people who have been and continue to be so supportive of me and Patrick. I simply could not  imagine our day without them. I’ll be the first one to tell you, you’ll see us through this. The doctor was right, I am lucky. I have the most beautiful family and am surrounded by friends who would take this on for me if they could. Not to mention my best bubba, Gus, who is trying to cuddle my sickness away. So– no, cancer, I don’t have time for you, but since you’re here I’ll make the time to lose you because I know….the best is yet to come.

Thank you for your time, love, support and prayers. I couldn’t be more grateful for you. xoxo