She did it. She got on that damn cancer bus. She showed up at the starting line and started the marathon. She has a lot of the race left to finish but she conquered heartbreak hill today.
The surgery went perfectly. Nothing unexpected. She is one bad ass lady.
We cannot thank you enough for all of your love and prayers.
– Emily (her favorite sister…I can say that bc she gave me editing power in her blog 😂)
See what I did there?
The strange thing about unplanned news is that all these unplanned things keep happening. I would never in a million years claim for one second that a life-threatening diagnosis is a gift but maybe, just maybe there are some things we are able to appreciate along the way?
Last summer, we decided to go to the north shore of MA on a hot summer Saturday. It appears we had the same idea as the REST OF NEW ENGLAND and found ourselves in miles long traffic on a two-lane road. We turned off, found a place to get lunch, had a picnic and explored an area we would have never seen. We are good like that– our whole family. We are okay going off track and can usually find the good in slight derailments from our plan. Ask any of my kids and they'll tell you we call them "Melander Family adventures".
I don't feel as charitable towards this detour but I cannot help but acknowledge and appreciate some of the scenery we have so far encountered on this "adventure":
1) Mammograms! Get your (free – if you have insurance) mammograms!! – I can personally ensure that I have increased the patient engagement level of women between the ages of 35 and over in their breast health. As a person who works to improve the greater healthcare good, this pleases me to no end. I have had MANY people from Florida to Chicago to Boston and back again tell me that they are getting their long-overdue if not first mammogram. Remember, my little "situation" was found during a routine, first-ever, no-family-history l'il trip to the mammography center. Make that appointment.
2) Our first-ever giant (!!) road trip: Mark agreed to drive down South for 16 hours to ultimately end up in South Carolina. Anyone who knows Mark knows that 16 hour road trips aren't really his thing. Along the way we got to see:
– The Eclipse! We got to see the eclipse in totality just south of Charleston.
– Friends and Family! … that we wouldn't have otherwise seen. Our kids have gotten to meet their kids. We shared food, wine, and Legos. We have gotten to see their homes and friends. It's been so special.
– Brown Widow Spiders! There is one at the end of the driveway. It's enormous. Can spiders jump?? This sucker is the size of my palm. I do not recommend checking them out at close range.
3) Wide-spread, ever-expanding, flexible, strong, LOVE and STRENGTH. We have received texts, calls, and letters from across the country and globe. Some of these messages have started with "I don't know you, but…" and then go on to share words of support and encouragement. It's overwhelming. It brings me to tears. It makes me laugh. It stuns me, and then I just collapse, exhausted.
Since our trip, I've reflected on these gifts, marveling at the sincerity of some of our experiences and laughing at the absurdity of others. I've giggled at irony and truly appreciated kindness more than I have in a long time.
This morning, with one day to go, I woke up. I spent the morning wavering between hysteria and tears, plastering on a grin and navigating school visits and drop-offs (while along the way, collapsing into nervous sobs to various people I encountered — the secretary at the elementary school, the school counselor, J's teacher, and then my friend the massage therapist). Then, I had an awkward third-person discussion with myself, told myself I was a ninny and to just pull it together and take a shower. Commence surgery prep.
Nails were painted yesterday. Hair removal, including waxing and/or shaving everything I thought needed attention, check. Shampoo, my second to last, in two weeks, check. Blow out my hair, check. Somewhere between shaving my second leg and my deep-conditioning treatment, I realized I felt somewhat like my 16/17-year-old self prepping for the prom! Because exactly. Prom prep is JUST LIKE MASTECTOMY PREP. Basically the same. Except: this time I didn't go tanning, and I definitely don't get to make out with a cute 17-year-old boy afterwards. Unless something REALLY gets crazy in the recovery room.
(I told Mark all of this and he ensured that if I indeed wanted to make out after surgery, he would be available. FYI.)
I'm now settled into bed, my bag is packed, my heart is full and I truly can feel you all loving, caring, praying, pushing (okay, shoving) me to the starting line. And I'll show up. Surgery is at noon.
P.S. My sister(s) will post an update so you can be sure to find out how it goes. I know you'll all want to know whether my nipples survived. I know I will.
I decided today that I'm going to stop reading cancer books, unless they are focused solely on nutrition or lifestyle or parenting during a difficult time. While well-intended, nearly all of the books I've gotten aside from those seem to be a What-to-expect-when-you-find-out-you-get-cancer, and I just don't think they are going to be my jam.
I read a ton of pregnancy books when I was pregnant, especially with my oldest, when each week passed by and I'd compare the tiny being inside me to a sesame seed, then an almond, then a kiwi… until one say I thought honestly I had a cow in there. Those books were helpful, and if scary, they at least prepared me for the ten (let's be honest) month journey that would ultimately end in a healthy, adorable fruit of our loins that WE wanted and WE decided to create. A little person that would take us on the journey that WE decided we were ready for because WE thought that being parents was the right, smart next step for our family.
Swollen and tired body, stretch marks, incontinence (while sneezing only– I swear), rock-hard, milk-filled nursing breasts — sexy? No. My choice? Yes. So reading about them seemed to prepare me in a way that got me actually really excited.
Cancer books are basically the same but NONE of its my choice, I don't get a cute baby in the end and at the end of the roughly ten month journey, I might have hair, I will probably show menopausal symptoms, I will have lost body parts, and I could be burned in sensitive places, might have sores in my mouth, will probably have a broken vagina, moon face from steroids… the list seems to go on and on. BUT I MAYBE, IF I AM LUCKY, I WON'T HAVE CANCER!!! Jesus Christ. Way to make me feel ungrateful, CANCER BOOKS!!!
Tips about packing barf bags in my purse during errands or hosting a head-shaving party with my "posse" isn't going to change the direction of the bus and it certainly won't help me get off sooner, so what's the point?
Surgery is scheduled for September 1. I am going to show up.
I was on a steady clip of posting every couple of days and I just blew it with nearly a week off! I have been so overwhelmed by emotion, kindness, free time (I usually never get any, but with cancer, suddenly *poof*!, I’m on PTO from work for a while), laundry, weeding, and back-to-school chores. Writing paralysis, brought on by an acute feeling of too-much-too-soon.
First thing’s first: I received a FU** Cancer t-shirt in the mail with no note or return address. It’s like Secret Santa in August! If you sent it, please know I’m wearing it as I type. Thank you.
Second, I thought you’d like to know that I did my first-ever nudie pictures the other day. I don’t think they’re revenge-porn worthy so likely won’t go viral, but I found it kind of ironic. Mark was there, but so was a lovely surgical medical assistant and some really bright fluorescent lights. It was hot in a different kind of way. We were at MGH to meet with the plastic surgeon who will be doing my reconstruction. Point of interest for you readers — they can do reconstruction now at the time of the mastectomy. From what I understand, this is a fantastic development in the world of breast cancer treatment, and I feel very lucky to be in the hands of the capable people who wrote the book (or research paper) on this procedure. Literally.
The procedure will be four-ish hours long with the first half being the removal of tissue and lymph nodes and the second half being installation of a new pair of boobies, intended to be a younger and fresher but comparable replacement set to their predecessors. I’ll wake from my restful slumber wrapped in a plastic-wrap like film (think Kathy Bates in Fried Green Tomatoes?) and that’s how I’ll stay, for two weeks. I’ll have drains (I refuse to participate in or learn about this part, if you have questions please search the internet or ask my sister) which will be taken out after one and then two weeks. After the two-week mark, I should be “healed” — if I do MY part, which is to rest, stay dry, and take my antibiotics.
All of the physicians at the MGH Breast Center seem to have taken courses in breast artistry – each of them has demonstrated their skill with lovely line drawings of my future chest profile with great ease. I’ve complimented them each time, which seems to entertain them to no end. Apparently, that’s not the kind of feedback they typically get. It’s like they think people are going to be impressed with their MD/PhD combos or something.
Last note, I highly recommend shopping for school supplies in early August. Not only are the stores impeccably organized but they are completely desolate. We had the run of the place — silver lining, right?
Now I don't want to make anyone jealous, but my kids love me. Like a lot. And they think I'm invincible. And the boss. Totally in charge.
When I found out about the cancer, my first thought was for my kids. They are too young to have a mom who is sick or needs surgery or a bald head. It is too soon for them to know what worry and hurt really are. And I was terrified of the thought of appearing weak or incapable or scared in front of them. As I'm now keenly aware, though, things don't always go the way we want.
At my first cancer team meeting I was told about a program through MGH that helps parents message illness to children. We got all
kinds of pamphlets and advice from experts and someone from the program called me both Tuesday and Wednesday to talk. We decided to tell them Wednesday night.
The advice we got can just about apply to any kind of tough news you need to share with kids:
1) Be direct. Don't avoid calling it what it is. Don't sugar-coat and definitely do not dumb things down for them. They are smart. They are perceptive.
2) Remember that they are part of the family and want to be seen as such. They want to help and be part of the process of healing. Keeping secrets or whispering about the issue will cause them to be insecure.
3) Dispel worries by SHOWING them what you're dealing with. Bring them to the hospital. Show them that you're being cared for by kind people.
4) Your attitude and tone will drive how they perceive the situation. Get your head around the issue before you talk to the kids about it.
Our message to them was essentially "when you turn 40, women are required to get an x-ray of their breasts to make sure they are healthy. I got that last week and the doctors saw some spots that worried them. After another test, the doctors told me that it was breast cancer. To fix it, they are going to do an operation and cut off my boobs that have the cancer in them and give me new ones. After that, the doctors are going to give medicine to make sure it is really gone."
The kids each responded differently:
Maggie, age 11.5: "Can you die of breast cancer?"
Annie, age 9: "Are you sleeping over at the hospital?"
John, age 6: climbs into my lap and starts tapping my arm (I ignore, per usual, so I can answer the girls)
Maggie: "Where will we go during surgery? I don't want to stay with Gram. I want to go to Emmy's."
Annie: "Sounds like you are at a good hospital. The doctors must be SMART."
John: (still tapping)
Me: "WHAT, John????"
John, (whispering): Pause... Giggle… "Mom? What color will your new boobs be?"
I will never run a marathon. I hate running. Sorry, I know there are a lot of people out there who love running. I do not. I do not understand the desire or urge to run, so running 26.2 miles, to me, is just batshit crazy. And don't even think for one second I will be one of those cancer-surviving yahoos that will decide to run a marathon to raise money for cancer research. Nope, not going to happen. I'll send a check.
ALL THAT BEING SAID, I love watching marathons and have many friends and family who have run many, with the best and most important race being the Boston Marathon. Natch. Watching marathons is a very serious business — people get to their spots early, bringing picnics, lawn chairs and giant signs. I've watched just about every Boston Marathon for the last almost 40 years in some way and we've always made a day of it. Schools are even closed in MA, so it is always a family affair.
For the runners, I imagine there is a ton of excitement and anticipation at the starting line in Hopkinton, with thousands of people teeming about, lubing their nipples and applying sunscreen, eating that weird runner goo people eat, setting their fancy runner watches and getting lined up. If there are spectators at the starting line, I assume those people are also pretty excited, maybe nervous, but generally looking forward to watching the race. If they're like me, they're wondering "Why would anyone run that long? Don't they get blisters? Are their feet hot? What if they have to poop?".
I kind of feel like one of those runners at the starting line. Like, I have this seemingly impossible thing I must do, really soon. Except I didn't sign up for this cancer ride VOLUNTARILY like those runner wackadoodles. The bus pulled up to take me to the starting line and everyone else is there with me, watching. But instead of anxious excitement at the starting line, all the spectators are crying. And hugging me. And each other. Some of them are even being consoled by others.
You are all so worried, and sad, and I'm like "eff this, I don't even have running shoes. Guess I have to buy some" and putting on my little shorts. I feel terrible that you guys are sad and worried. I feel grateful that you care and I feel the love surrounding me. I can feel it coming across miles and through texts and cards and in flowers and the food. I can. And I just want to say thank you. And I want to tell you to not be sad, and try not to be worried. Because I got this.
The starting pistol is going off in a couple of weeks. Surgery is scheduled. I have no idea what to do or how to get through it. But I don't seem to have a choice, so I'm going to tie my sneakers, eat some goo, and just run my ass off.
Oh hi, nice to meet you. Welcome to Cancerville where everyone gets an ID bracelet and is invited to research studies. Oh and chemo. Free chemo. Ā I already know I am so very lucky to have one of the best facilities in the world at my disposal – it was apparent from the moment I checked in.
Various people called me the week before, booking me for things like screening, counseling, blood work, meetings, etc. I received fair warning that we’d be there for a while but despite knowing what was ahead, we were exhausted by the end of the day.
10am: Genetic Counseling. What the hell is that? Wait, rewind. I forgot.
3am: John wakes, comes into our room to tell us that he just “throwed up”, and its “wicked gross”. We clean up puke, make bed on floor of our room, settle him in with a trash can. Life goes on.
Okay, 10am (John was fine, too much candy from his aunt Juge, I think): Genetic Counseling. So I didn’t think I was of Jewish decent or had family history so I didn’t really know why I was going, but when MGH calls, you answer. So we went. Plus I figured I never did fill out that ancestry.com profile so maybe we’d document the family tree somehow.
Turns out they take this research thing really seriously at research hospitals, and that includes combing each patient for data and feeding it back to them. Gene research (via 2 tubes of blood taken moments later) will screen me for any of 8 breast cancer genes, which could end up being valuable information for my girls and my sisters’ girls. It also turns out that since I have cancer, Ā someone one step away (so my sister, mother or my daughter) could be 2x more likely to get it. Don’t quote these numbers. I was barely listening. I will confirm that and get back to you.
My counselor was named Margaret. I won’t forget that because my eldest daughter’s name is the same. She’s a genetic counselor. It’s a master’s degree. I tell you these things because I didn’t even know that was a job. Or a thing. She was wonderful. And sent me to the 9th floor: The Mass General Center Center.
Cue scary war music. Then we realize we have two hours until our appointment at 1pm so we take a lovely walk through Beacon Hill, visit my parents’ (and my) first Boston home at #99 Pinkney Street and have lunch at Harvard Gardens. I have wine. Obviously.
1pm: Interdisciplinary Meeting Commences. I figured it’d be in a conference room or something. But instead I was in a high-waisted, tie-front, calf-length johnny (that I could almost imagine wearing with a pair of really cute Tom’s), and my parents and hub were crammed into some plastic chairs and we were all in an exam room. It was cozy. Note to self: design dress line as comfy as those johnnies. How does one spell johnnies?
Dr. S – surgeon comes in. Explains all sorts of things. Dad wrote it down. I’ll share if you ask. We decide to just chop it all off. a) YOLO. Literally. and b) MGH really likes to KICK THE SHIT out of this disease. Then put lots of nails in the coffin. Then they bury it. And then they put a BOULDER ON TOP to just say F.U.
Silver lining: new rack. Most of my peers are looking into this anyway. Mine will be covered by insurance.
New news: I’ll be numb there, like forever. WTF again. No further comment.
Recommended treatment: Bi-lateral mastectomy with lymph node removal on left, lymph node testing on right side. Reconstruction during same operation. Taking feedback on construction dimensions.
2pm: Med Onc comes in. Oh, that’s my new dapper, handsome cancer doc. He tells me all about Chemo. And this fantastic new therapy that’s been developed (except it’s been used in Europe for TWO DECADES, thanks U.S. Health System) that gives your hair follicles frostbite but may preserve your hair. It is called cold-capping. More on that later.
I’ll look like a member of the U.S. National Water Polo team every other Wednesday but who the HELL CARES if I can leave and still look like I’m not the one-who-is-sick-with-bald-head?
Recommended treatment: 8 rounds of chemo, 4 of two different types. Lasting 16 weeks total.
Still on the bus – getting tired. Waiting for final doc. About radiation.
3:30pm: A lovely Egyptian physician comes in, asking how I’m doing. He’s wearing a Trinity tie so he and Mark talk NESCAC. While he is examining me I suggest he might know all of my Armenian friends in Boston because his last name actually ends in IAN and all of my Armenian friends have last names ending in IAN and they ALL KNOW EACH OTHER (trust me, you out there, I mentioned you). He says, “I know my name ends in IAN. It was a mistake when I left Egypt for my French Boarding school. The authorities spelled my Egyptian name wrong and it just stuck. The Armenians are very annoyed at me.”
Anyway, I tried. Emily, if a young research coordinator reaches out to you to job shadow, just do it. I said you would. I was getting people connections left and right the whole time I was there.
Recommended treatment: 6 weeks of daily (M-F) radiation treatment (photon or proton, I don’t know the difference but apparently it’s also being researched), starting about 4 weeks after chemo ends.
All in all, this should (insert pray emoji hands here) be done by early May.
PS – if ANYONE YOU KNOW wants a volunteer job in the medical industry, there seem to be volunteers just teeming about the place. Candy stripers, food deliverers, you name it. It’s really cool to see.
So you know when you’re driving somewhere, using GPS and suddenly right when you’re about to turn left onto Route Takemesomewhere you lose cell service or your GPS freezes? If you’re super lucky, it’ll unfreeze and tell you its recalculating to get you around whatever object is in the road or wherever there’s a sudden standstill. Might take you a bit longer to get there, but you can count on the new plan, at least.
As of last Thursday, I started recalculating. Got the news on Thursday that the suspected cancer was, indeed, cancer. Right breast, DCIS (ductal carcinoma in situ), probably stage 0, Left breast, invasive carcinoma in two spots plus at least one lymph node, probs stage 2ish. They won’t know until surgery when they get in there and fuck me all up.
Sorry for the curse words but seriously? Whatthefuck? I had a two week vacation planned. We were going to drive down 95 and visit friends and go to Seabrook Island for a while. We were going to buy school supplies and backpacks. We talked about rescuing another German Shorthaired Pointer to keep Poppy company. Mark was working on getting a new job.
Instead, the cancer bus pulled up and it is full of stinky rude weirdos and the whole bus is ugly and smells and is bad for the environment. And the driver, who is nasty and probably drunk and ugly too is honking the horn and yelling at me and saying, “SORRYYYYY! I know you had a perfectly normal thing going, but you’ve got to come with us now, and you’ll be gone for a while! Let’s go, sucker!”
THAT. Is what it feels like. So Thursday, at 1:30 PM when I got the call, I got on this ugly, smelly cancer bus filled with mean gross people I don’t want to be with. And my whole family, my kids and all my friends get to stand on the side of the road and watch me miserably ride this bus, and they all feel so bad that I’m the one who has to take this ride, and they are feeling just as helpless as me.
First stop, a full-day, interdisciplinary consult at MGH.
Fake it ’til you make it, right? Biopsy was scheduled for 9:30. I woke early, with a slight headache, for I had drank ALL THE WINE. I could find. In the world. The previous night. Biopsy day! Four spots, four shots and four needles. Ew.
I’ve always believed if you have no idea what to do or how to act, fake it. So, as my mother taught me, I took a shower, blew out my hair, and put on lipstick. And walked into the living room.
Pam: “Are you wearing that to the hospital?”
Me: “Yes, why?”
Pam: “But leggings? Hmm.”
Me: “Um do you have another suggestion? I’ll be lying on my back getting stabbed in the most sensitive part of my body, I figured comfort was paramount.”
I guess when she STOPS telling me what to wear and critiques my lipstick I’ll know I am really screwed.
Biopsy sucked. I put a bath towel on my face, laid back, and pretended I was sunbathing. Except I was in a hospital room, the sound of a drill-like machine was 8 inches from my face, and I was crying. So kind of the same thing. Post-procedure bruising is insult to injury so, wine.
Working full time means you don’t have time for things. And that’s okay. Because you make time for the things that matter. Typically things like mailing packages and buying stamps don’t really matter. But when you have two kids at sleep away camp for two weeks and you promised you would pinky-swear-write-them-a-ton-no-matter-what, suddenly local post office hours mean something. 
I visited three different post offices on Friday, hitting each of them a precisely the times their windows appears to be closed. One such post office was open from 8-10am and then from 4-5. What is that all about?? Breakfast breaks? And Lunch breaks? Siestas? Who knows but I. Could. Not. Manage. To. Mail. These. Frigging. Packages.
So when my sister suggested – no – booked for me – a mammogram, I smiled and thought to myself “Like I have time for that”.
Establishing a baseline for a post-40 year old woman’s health is important so mammography centers take special care to ensure they have all the pictures they need. As such, when I was called back after my initial appointment, I thought nothing of it. I have no family history, am in general good health, and had never felt anything to lead me to believe there’d be anything wrong. As soon as my follow-up mammogram and ultrasound was complete, the radiologist came into the room and told me that I would need an immediate biopsy.
WTF.
I didn't have time for this. 