I didn't have time for this.

The word means a lot of things to a lot of people, especially when it relates to an illness. Everyone in my family is recovering and adapting to this new reality in their own ways. Me, I feel like I’ve recovered several times over the last 9 months…

• That time I found out I had areas of concern in both breasts, during my FIRST MAMMOGRAM EVER, with NO FAMILY HISTORY.
• That time I saw what a few measly needles could do to some pretty nice, unscarred breasts (think purple bruising for miles and miles).
• That time I was told the best course of action would be an immediate-bilateral mastectomy and found out afterwards that I would remain numb in that whole area – forever.
• That time I woke up from said surgery with incisions and drains and bandages realized I’d gained my health but would forever have something lost.
• That time I found out I tested positive for a little-known but virulent gene mutation, PALB2, which made it near-given that I’d end up with breast cancer.
• The eight times I was administered poison to kill the remaining cancer cells and got a shot in the stomach from my best friend that promised to limit the damage to my bones.
• The day I stopped radiation, which signaled the end to a daily routine that seemed to make less and less sense the more I got burned.
• The day I left for vacation. Healed, a little tired, but with my people, all of them, showing me their strength and loving me back to normal.

The burns from radiation have healed, and the scars are continuing to fade. I count my blessings and recall all of the things (and more) for which I am thankful, and am happily, mundanely, tiredly back to the boring business of being a full-time working mom and wife.

Writing helped me through the worst of it, and I hope it’ll help me trudge through what the heck just happened and how to move forward. I have some ideas about things I want to share with you — ways the kids and we coped and kept things “normal”, the little things people did to show they cared, and what I learned by sitting in cancer waiting rooms.

Stay tuned, I’m feeling good, look pretty normal, and will be back.

Someone casually asked me a couple of weeks ago whether I was going to get photon or proton therapy for my radiation. I had no idea. The question was framed sort of like they’d wondered if I was getting the gel or natural manicure. Like I had a choice or any knowledge whatsoever what either entailed.

I went to my first radiology appointment about a week ago, and I am happy to say that I now know the answer to that question. And the difference between a photon and a proton. For those of you who have memories like mine or who are NOT my father (who was a Physics major in college and looked at me pitifully when I probed him for answers), I’ll give you a little RadOnc 101. That’s Radiation Oncology, rookies! Again, this will be in layperson speak so if you are an ACTUAL physician, give me a break. Or correct me. But don’t be a hater.

Most radiation is delivered using Photons. Photons are particles of light (duh) and they are invisible. They are generated and administered using something called a Linear Accelerator. I do not how but I expect this thing is probably a few million bucks. The machines (in the area I’m getting treated in, there are five) seem to go down here and there, causing delays in the radiation queue but for the most part seem to work alright, and the radiation technicians see between 30-40 patients a day. Prior to treatment, I was given a cat scan which maps the physiology of my body and locates my heart and lungs to that they can be avoided during treatment, which will be of my left breast area.

Since I really seem to have won the cancer lottery, I was diagnosed with two different cancers of two different stages; the cancer in my left one was the only one that needs to receive radiation. The technicians use a series of green lights shining in a grid onto my body to “chart” the course for the radiation. They use the grid to line up the machine and the radiate me according to a prescription provided by my doctor, the Radiation Oncologist.

In order to better line up the machine, I’m also given a series of dot-sized tattoos along the intersections of the gridlines so they can be double-sure they hit the right spot. I found it terribly ironic that my first tattoos were going to be radiation tattoos given to me during the treatment of breast cancer at 41. So ironic that in a relative fit of insanity, I went and got a tattoo, of my choosing, two days before the tattoos were administered. The tattoo artist I went to happens to also tattoo nipples onto breast cancer patients after their surgery. She does excellent work — I’m not sure how one develops that skill but kudos to her — I’m sure it really helps women feel a little more “normal” after everything.

Anyway, back to radiation. I started this week. I’ll have to go 28 times. The doctor basically figures out how much I need and then divides that amount by the maximum daily allowance and that’s the number of days I get. Radiation is Monday to Friday for what will be about 5 1/2 weeks. Side effects differ by the body part being treated and fortunately for me, breast cancer patients seem to have the relatively minor side effects of skin irritation and fatigue. To avoid skin irritation (which sounds like it could be anything from a minor to very bad sunburn), I am supposed to moisturize the area with lotion 3x a day. Moisturizing one’s breast is a little odd, but if it keeps me from getting a weird one-boob sunburn, I’ll do it.

True to form, John wondered if the green lights were laser beams and if they burned me. This is not NEARLY as exciting as he imagined. I pretty much lie on a table and hear whirring and clicking. Then I get up, put my clothes on, and head back to work.

I’m a week in and am a radiation pro! And feel great so far. There’s something about NOT BEING POISONED that makes this whole thing seem a heck of a lot easier than chemotherapy…

We had two snow days in a row last week. Our town is (in)famous for never canceling school, but there’s a new superintendent on the job and he hasn’t caught on quite yet. Snow days can be exciting. They can make a person recall fond memories of sledding and cocoa and homemade snow cones with Maraschino cherry juice or maple syrup. Or in my case, they can cause of irritation and rage by mid-morning.

In our house, the same little people who need to be dragged from their beds in order to make it to the bus on time have likely woken up at 5am to squeal at the sight of new-fallen snow. Those same people have probably been in and out of the house, trailing clothing and puddles each way, at least three times. There’s probably cocoa powder smeared on the countertop and sprinkled on the floor. The dogs have already chewed two pom-poms off of the girls’ hats. The crackling fire has gone out. And I’ve tried to call in to three conference calls with barking and screams of “MOMMMMMMM!” in the background. All by 10:30AM.

When explaining difficult circumstances to children, we were told by the experts at the MGH Cancer Center that the important thing was to remain calm, and be honest, and to adapt your message to their ages. By 10:30AM on the first day, I had completely disregarded all of this advice was screaming “I am going to lose my mind in like FIVE MINUTES IF YOU DON’T GO OUTSIDE and NO, WE AREN’T GOING ANYWHERE, THERE’S A SNOWSTORM OUTSIDE!”

The difficult circumstance of being trapped at home for two days wasn’t exactly like my cancer fight. But it was hard. Like moving the Elf on the Shelf for 28 days straight. Or Christmas shopping. Or Christmas wrapping. Or Christmas cards. Or post-Christmas vacation, when we had arctic temperatures for a week straight and everyone was so BORED with NOTHING to do.

In spite of chemo becoming part of our routine, the routine for the last month or so managed to be wonderfully and mundanely hard. And looking back, I’m so glad for it, because it means I was feeling well enough to be (attempting to) managing it all. And the kids, who are very kind and sensitive to the fact that I have been going through a lot with surgery and recovery and chemotherapy, weren’t treating me like a patient. They weren’t handling me with kid (pun intended) gloves, because I didn’t need them to.

My last Taxol infusion was on January 3. My superstar nurse and friends brought champagne. I cried through the whole thing, and toasted to being done, and to the next step.

My birthday was a couple of weeks ago. We have a family tradition where the kids get to go to a discount home or clothing store and do a little shopping of their own and they then get to present the buffet of small gifts to either Mom or Dad as their gifts. We all love it, because when it comes to birthday presents, we’re a quantity-over-quality kind of family. This year, the kids didn’t disappoint. The girls “bought” me a scarf, earrings, candles, a shirt, some notecards, and some face wipes. John got me an electric heel-pumicer. Nothing says love like a pedicure tool from your six-year old.

Once all of the festivities were over, he immediately insisted we test out his gift and suggested I hop in the bath to prep for a pedicure that he, naturally, was to provide. He came along to the bathroom to monitor my bath’s progress (speed, really, he was anxious to get going) and as I toweled off, he asked, while poking at my nipple, “Why isn’t that boob popping out like the other one?”

It occurred to me that he, and everyone, might appreciate a status on my post-operative physiology as well as a summary of how chemo seems to be affecting it, because let me tell you, it’s been a real trip.

1. The boobs. I have two, new, circa 18-year-old breasts. Scars are limited to 5-inch smiles below them where tissue was removed and implants inserted. If I were to wear, say, a bikini top, no one would have any idea that I had had a mastectomy or implants. My nipples survived (thanks to Tom Irving, natch) the battle, but are sometimes a little slower to respond, to answer John’s question. Generally, they look good, and real, though seem a little far apart to me. It could be that I am used to being a little bigger but I’ll be checking that with the plastic surgeon next week. #lesscleavage #sorryguys
2. The numbness. This is a real thing. Maybe other people in my circumstances wouldn’t care about this but it is more jarring than I expected. I had 15 lymph nodes removed from my left armpit and one taken from my right. And of course I had all that breast tissue removed. As a result, my entire chest area, most of both armpits and upper back-near-my-armpits area is completely numb. From what I understand, so much of the blood supply to my nerves was removed that there just isn’t much to feed them anymore. I have been told that nerves grow 1/4″ a year and some sensation may return. But it’s weird to have entire cross-section of your body feel, well, nothing. I don’t know if I will ever get used to it.
3. The hair loss. AC chemo pretty much guarantees hair loss, and happily, and surprising even to my oncology team, I didn’t really lose any at all on my head. With two rounds of Taxol under my belt, I’m told I am pretty much in the clear. I have lost it everywhere on my body but my lashes and eyebrows remain for now. As for the body, I feel like women from the age of 13 on spend a lot of their grooming time trying to get rid of hair, so that part has been exceedingly liberating. I only wish my body and the weather were ready for skimpy bathing suits! To keep the hair on and around my eyes, I’ve been using Rodan + Fields Lash Boost and Younique Lash Serum, which I think have preserved my lashes and brows. I am also using a LOT of Maybelline Waterproof Mascara. Waterproof because I seem to burst into tears at the drop of the hat. Or at a Hallmark Christmas Movie. But if my lashes were to all fall out, given how lucky I have been with cold-capping, it’d be a small price to pay.
4. The early menopause. WTF. Since I’m so “young” to have breast cancer, the chances that this is permanent are slim. But for now, I’m totally going through menopause! The biggest indicator of this right now seems to be hot flashes and night sweats. I might ask Santa for rubber sheets because I seem to be waking up at least once a night, freezing and completely soaked. Coming up next, dry skin, dull, lifeless hair, and a dry vagina. Aces! I can’t wait! Sounds like Santa should also bring me a VAT OF COCONUT OIL.

That’s about it. Of course there are other small, weird things: mouth sores, weak immune system, dry nose and eyes. All temporary, all completely manageable. I have two more treatments and then I’m done with chemotherapy, and I’ll be very happy to shut the door on this little chemistry experiment.

What else should I ask Santa for? Any ideas?

I took all of one psychology course in college which was aptly named Psychology 101. My time in the class has proven to be woefully underwhelming when it has come to assessing myself during this journey.

• I definitely have survivor guilt, and it started when I found out that my cancer was Stage 2B and curable.
• I think people around me have proven the Bystander Apathy theory very wrong and I’m happy to say so.
• Sometimes I just want to lock myself into a quiet room and rock like a Rhesus monkey.

That’s about what I know and what I can apply to this current situation.

What I want to know is- is there a non-Superhero complex? All you psych experts out these, this is your chance to show your stuff.

I was diagnosed on August 1 and when I found out I had a one-week (thank God my girls were at sleepover camp), wine-fueled bender and told anyone who could listen about the shit show I had just unwittingly bought a ticket to. I held court on my patio while various close friends stopped by and watched me process. I didn’t feel super or even human, to be honest. But I have consistently been called Wonder Woman. I love it, because who doesn’t want to be her? But it also feels funny — I have felt really good but didn’t really DO anything to make that happen. I am a total poser.

Since boarding the bus I’ve felt incredibly supported but also have felt that, when it has gotten down to it, I’ve just been kicked in the ass and shoved out into the cold, naked place and asked to stand in front of a chemical or surgical firing squad that may or may not kill me, and I’ve just been asked to show up. So I have. But that’s IT.

There are no special tricks or medications I’m taking to make this ok. And yes, I’ve had six rounds of chemo and feel good! Thanks to cold-capping I have my hair (on my head, another post for another time), and I don’t feel sick. Maybe a little tired but what working mom of three doesn’t feel tired??

The best tools I’ve had are waterproof mascara, great concealer and powder, sleep, water, and my people — my support network. Of course there have been other over-the -counter meds I mentioned in the last post but it’s not as if I’m flying to an island of goddesses and getting my fill. I say this because I know I have it easy. I have Diet Cancer. Don’t let anyone fool you: I have NOTHING compared to some of the people out there who have cancer and associates treatment for yearssssss.

I will be your hero. But please, if you are at all affected by my diagnosis and this stupid journey, remember the many who are dealing with much, much worse. I’ll be your Wonder Woman if you promise you’ll keep the other superheroes in your thoughts.

XO

The holidays, not just the actual day of Thanksgiving, always give me pause. There are things that have happened this year that I am NOT very thankful for. But at the same time, this year more than ever, I have so many things TO be thankful for, and many of them have appeared since my diagnosis. The following is my best effort to capture them, in chronological order.

I am thankful for my sister Emily. She’s an ob-gyn, and one of the finest physicians I know. She’s also my fiercest advocate and was the person who reminded me to book my baseline mammogram at 40 and who did not relent until she knew I was sitting in the waiting room. She dropped everything and cleared her schedule when she got the initial call from the radiologist, met me with a calmness and assuredness I’ll never forget. After the initial meeting with the surgeon, she picked me up some Ativan and several bottles of white wine. She’s also taken cold-capping to a whole new level.

I am thankful for Dr. Andrea Rescinti, Emerson Breast surgeon, who, after my second mammogram, cleared her schedule to make time for me to read the results and immediately got me into the head of radiology’s schedule for an intensive biopsy the following morning. Her kindness in the face of my shock and swift coordination made the waiting minimal and the whole thing maybe just a bit more bearable.

I am thankful for the radiology technician I saw after the biopsy, when I was overwhelmed, numb, and slightly (ha!) battered and bruised. After a 4-site biopsy, she needed to give me another mammogram and with her Reiki training touched me and comforted me in ways I will always remember.

I am thankful to my little sister Julie, who from afar, coordinated volunteer help that included everything from the delivery of groceries to decorating for Fall and everything in between. She’s left her pack of small children at home several times already to help me post-surgery and visit during chemo. She checks in relentlessly and worries for me all the time. It’s horrible to have a big sister with cancer. It’s even more horrible to be far away, and I’m sorry, Juge.

I am thankful for the people who donated to a trip to Maine, arranged by friends for Mark and me, to get away for a few days before surgery. It was such a gift to have a quiet, serene, place and time together to prepare for what was to come.

I am thankful Massachusetts General Hospital and my surgeons Drs. Michelle Specht and Eric Liao who removed the cancer in both breasts and lymph nodes and put me back together again, respectively.

I am thankful for Dr. Tom Irving. For being hot and showing up on Sunday to look at a suburban housewife’s distressed nipple. And for being hot.

I am thankful for my dear friend and dedicated neighborhood nurse, Melissa, who came over twice a day (+) to check my surgical drains, clean them and do the things I couldn’t. I’m thankful to her for taking the time to learn how to cold cap and for giving me my Neulasta shots every Thursday after chemo to keep my bone marrow pumping. Come to think of it, she comes over almost twice a day even now – just because.

I am thankful for my mother-in-law Patty, my bonus Mom, for coming down from Maine and helping to keep the house running while I was resting after surgery. I wasn’t allowed to do much, and she stepped in and kept things seamless.

I am thankful for Dr. Steven Isakoff and his fellow Dr. James Torchia for their oncology expertise and guidance through my chemotherapy routine. And for their sympathy when I told them, and asked them to imagine for themselves, some of my more mortifying/uncomfortable side effects.

I am thankful for the nurses. My post-operative nurses and their staff. My chemo nurses, especially Bob, who keeps me smiling through each treatment.

I am thankful to (ironically, but credit goes where credit is due) the inventor of Mustard Gas, which is the first known chemical compound that led to the discovery of Chemotherapy. Weird, right? And to the researchers at University of Pennsylvania and Yale who pursued early discoveries related to the reduction of white blood cells and eventually tumor size to eventually create chemotherapy’s earliest relative.

I am thankful to the researchers at MGH who have discovered the long list of over-the-counter medications including Colace, Prilosec, Tylenol and Claritin (of all the random things, how did they figure THAT out?) that help with side-effects and make this regimen bearable.

I am thankful for the founders and staff at Penguin Cold Caps, who developed this highly non-technical technology that has saved my hair. I haven’t lost any of it yet, and that has changed my entire cancer treatment experience for me and my children. I am thankful also for the Rapunzel Project, who facilities the information sharing and funding support for others like me to use this expensive therapy, which is just starting to be covered by U.S. Insurance.

I am thankful for my FU Cancer team, who have and will show up for me. At home and at the hospital, and via text, to make me laugh and feel loved during each appointment.

I am thankful to all of my friends and friends who have volunteered to bring groceries, meals and chemo gift surprises to make our lives at home easier and push us with spirit and love through this journey.

I am thankful to the women in my life who are unfortunately on the cancer bus with me, the ones who knew how I would feel, prepped me for the worst, boosted me up when no one else would understand. Aubin, Tracey, Ashley, Barbara, I’m so sad we are in this stupid club, but so very grateful that we have each other.

I am thankful for the countless number of people who have sent texts, emails, cards, small gifts, tokens of encouragement, flowers, comfy clothes… every single one of these gestures has overwhelmed me with love and support over the weeks and through the miles.  It has lifted me up, and makes each day a little lighter when they come.

I am thankful for Dr. Alphonse Taghain (who is not Armenian, fyi), and his protons and photons, though I don’t know what they are, because they will be the final blow to the cancer that might remain after surgery and chemo and will be the (hopefully) end to this treatment cycle. I will be thankful also to anyone who can explain to me simply what photons and protons are and how they will kill cancer cells. I suppose my physicist father or my high school friend Alex might be two people at the top of that list, I think they know about these things.

I am thankful for Mel, Rap, Erica and Michele at Daybreak Crossfit for reminding me what good nutrition and exercise can do for a girl – especially one who is going through chemo, and whispering to me in my ear when they haven’t heard from me in a while. I’m getting back on the horse and will be the better for it.

I am thankful for my leadership team at athenahealth and all of my co-workers and teams. For putting up with my unexpected absence from work in August/Sept and part of Oct and for welcoming me back with open arms and smiles and distractions. You’ve kept me going and keep me anchored and I am so, so, grateful.

I am thankful for the Marlborough Region of New Zealand, which has produced some of my favorite Sauvignon Blancs, which have played a crucial role in my survival since August 1.

And finally, without the ability to true do this justice with just the typed word, I am grateful to my parents for their unconditional, immediate support with everything that’s happened these last few months.

And for my beautiful, kind, thoughtful, funny children that have kept me moving forward, paused with me for some tears and lots of hugs, and cheered me up with their silly selves. Margaret, Anneliese, and John, I am so proud of you and blessed to be your mom.

And to Mark, for loving me so much, worrying for me all the time, and doing everything he can to make this unbearable time just a little bit better in every way he can think of.

xx