Author: Amanda

While I have highlighted that I was going to try this new-old-fangled technique to attempt to save my hair, I didn’t really provide details about how the process works or why in the hell it might be effective.

Not that I followed cancer innovations super carefully pre-diagnosis, but I really hadn’t heard of this technique. To me, and probably most of you, and to everyone who has seen a cancer movie or real life with someone who has had to go through chemo, hair loss is not only a side effect but in many cases, a sure thing. My own oncologist told me essentially “yup, everyone who has AC chemo loses heir hair at about day 14-17.”

It was actually my doctor who flagged cold capping as a solution. He has had a handful of patients do it in the last 18 months, all with good effect. I’m am the 5th patient he has had, and he had another right now who is going through it, but his previous four patients were 4/4 in keeping their hair. There are a few companies who sell the caps and there are a couple of ways they can be used — one gives you caps you chill in a cooler filled with dry ice and the other uses a machine that kind of looks like the hair dryers in a salon — except it is blowing cold air, not hot, onto the head. I have the former, which means that every other Tuesday, Mark is going to an ice company and picking up 70 pounds of dry ice so that I have enough for the next day.

Dry ice exists in its frozen state at a temperature of -109.3 degrees Fahrenheit. Did you know that? I didn’t. Point is, it’s a lot colder than regular ice, which is critical because the caps I put on my head need to be -28 degrees Fahrenheit for the treatment to be effective. We have four caps, all chilled in the cooler and all eventually put onto my head to keep it cold. The caps need to be changed every 25 minutes for several hours, with the first one going on an hour before chemo starts, and the last one coming off 5 hours after chemo has ended. The idea is that the scalp gets so cold that the hair follicles go into a sleep-like state and don’t absorb the toxins in the chemo. If the hair follicles don’t absorb the toxins, they don’t die. If they don’t die, the hair doesn’t want to fall out.

People have asked if it hurts, and it does, the way cold ice cream hurts when you eat it or your bare hands hurt when you touch snow. I take a couple of Tylenol and a muscle relaxer as part of my chemo regimen and the pain goes away after about ten minutes and then I am numb for the day. My sister said my scalp is actually frosty when she changes the caps. So weird.

Chemo is pretty mellow and quiet — I’m just essentially sitting there with an IV in my arm, but the capping process ensures that things stay pretty busy throughout the day around me. I am eternally grateful for my sisters and close friends who have signed on to help me — if I do keep my hair, it will completely alter this experience and really be an enormous gift to me and my children.

It is now day 27.

I still have ALL my hair.

For more information about the caps, or to tell a friend who might be interested in using them, go here.

You guys, I am okay! Everyone has been checking in and so I wanted to thank you and let you know that I am, in fact, doing well after my second round of chemo. I have some side effects and feel a little tired but honestly, compared to what is outlined in the side-effect list, I have had made it out okay.

Before the chemo started, the patient (moi) got a chance to sit down with the super busy MGH Medical Oncologist for thirty minutes to outline the side effects I noticed during Round 1. He summarily countered each and every thing with either a suggestion for how to pre-empt and hopefully prevent said effect, or a recommendation for a diet change or medication to resolve the side effect immediately. Amazing! He also assured me that the Pu-Pu platter of side effects served to me during Round 1 will likely be my “set” of things to deal with, so there shouldn’t be too many surprises. I am extremely comforted by this and feel prepared to handle these side effects, and get really good doing so.

I also made progress with the stupid Neulasta shot that had to be administered 24 hours after the chemo by taking Tylenol and Claritin (not sure why, but it helps with the side-effect list from THIS drug) early in the day before the scheduled injection. Also, insultingly, the needle must be injected somewhere I can “pinch an inch” so I actually iced my tummy fat for a few minutes before actually getting the shot. And I didn’t cry! Winning!

Chemo itself will likely be a set of (surprisingly good) memories I’ll never forget. I have a set of pals and family members who never fail to entertain and often humiliate me with the hospital staff. When I approach the chemo desk with these people and my giant-ass cold cap cooler and ask for a private room, the staff takes one look at us and gets us the damn private room. This past time I told them, while wearing my cap already, that I was checking in for a perm. They responded that they only do extensions and weaves. Ah, perhaps later.

Each one of my sessions will be a motley crew of my folks, some cold capping snarky remarks, and smelly food that will surely continue to put off the nursing staff. Who turns up the treatment room temp to 80 and then proceeds to order a tuna sandwich and some Anna’s Tacqueria to go? Team Amanda does!!!

With two treatments under my belt, my focus is beginning to shift from recovery/coping to going back to work. My company and team have been amazing during my absence and I’m ready to get back into it in the next couple of weeks. Thanks to short-term disability and vacation time, my paycheck hasn’t taken too much of a hit, but it will soon. Plus, I truly would like to think about something else other than this idiotic cancer detour for once. I’ll continue chemo, taking time off for and after each treatment, and then Ill get back to work when I can. As if things weren’t busy before… the name of this blog, may I remind you, is “I DIDN’T HAVE TIME FOR THIS”, remember?

I’ve started to catalogue some ideas about how to survive…

Just when I was starting to embrace my life of leisure, I get my oncologist appointment moved up from October 4 to yesterday and a schedule was put together for chemo. I start Wednesday. Like in five days. So much for all of those plans I had.

I had a good pathology report which indicated that they got everything during surgery, but to make sure there aren’t any rogue cells trying to take me down, they’re throwing the book at me. Not literally, of course, that’d be wildly inappropriate, but we are going to continue with the recommended chemo and radiation plan which was 8 rounds of chemotherapy and 5-6 weeks of radiation after that. I’ll get three kinds of chemo — Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide) for the first four rounds and Taxol (paclitaxel) for the second four rounds. Each round will be a day long and I’ll do a round every other week. So, four months of fun time (!) for me and my people.

All three of the chemotherapy drugs they’ll give me are on a list of the chemos that are most likely to cause hair loss. Sweet! As if taking a life-changing detour isn’t enough for you and your family. Insult to injury, you have to lose all of your hair so that everyone on the planet knows you’re on the ride. The American Cancer Society says that many cancer patients state that hair loss is the most traumatic part of the disease. Isn’t that awful? Because getting a life-threatening diagnosis, major surgery and being poisoned don’t mess with the head at all?

I think the reason, as stated by my doctor and many others, is that going bald isn’t a look that most of us pursue electively and it has sort of a bad rep as a key indicator of a person being sick (from cancer). Side note*** any illness or discomfort I have felt since this diagnosis has not remotely been due to the actual disease and only from its treatment. Irony.*** If you’re walking around looking sick, though, you are getting those looks from people, or better yet, people are avoiding eye contact altogether, and as a person just trying to GET THROUGH THIS DISASTER, you don’t really feel like you have much control.

Imagine an alternate universe, if you will, where people who have cancer and are dealing with it best they can, aren’t bald and don’t look sick. Where they can maybe go back to work more easily or participate in other parts of their lives without bringing the disease “with” them. Where they can choose when they are a patient. Or a mom. Or a wife. Or a friend.

I hadn’t really made my mind up about how I felt about the bald thing. It didn’t bother me too much though. I could rock a short pixie cut in the beginning. I could get into the idea of cool scarfs, lipstick and dangly earrings. I imagined myself popping on a sassy wig and grabbing an alter ego for a few months. I figured it’d be temporary and I’d make it work if I needed to. Until I spoke with my eleven year old.

Maggie’s a good kid. She doesn’t ask for much and she does selfless things like put up with her little brother and make lunches for her sister each morning, and she keeps her room immaculate. She worries about me and checks in on me like a little mother. She’s also a sixth grader. If you are lucky enough to have a sixth grader in your life you know that the WORST THING THAT CAN HAPPEN IN THEIR LIVES IN ANY WAY SHAPE OR FORM IS THAT THEY STAND OUT IN SOME WAY. Sixth graders want to be unexceptional. They want to blend in. They want to be just. like. every. one. else.

Guess what does not blend in? A mom with a frigging bald head. A mom who looks sick. With tears in her eyes, holding my one hand in her two smaller ones and trying to be very, very brave, she told me, she didn’t want me to look sick. Please, could I wear a wig? Keep my hair, even? So for Maggie, for my family, and maybe so I get an iota of control over this fucked up mess,  I am going to try cold capping. It’s a thing!

Not only are U.S. media outlets like the New York Times starting to catch on, but this method of hair-loss prevention is starting to get covered by insurance. aetna announced in April that they will be covering the cost of the product, which is substantial: about $500/month. I’m going to put my hair follicles into a hypothermic state so that they get so sleepy they don’t drink up all that poison. If they don’t drink the poison, they don’t die! If they don’t die, my hair shouldn’t fall out!

I’m showing up at chemo on Wednesday with a 50 lb. cooler of ice, 4 Penguin cold caps, and a blanket. And I’m gonna tell you ALL about it, because the whole thing is pretty cool.

P.S. – For those of you living under a rock in the 80’s, or 90’s, or 00’s, or NOW, the title of this post is a quote from Def Leppard’s “Pour Some Sugar on Me”. It’s one of Mr. and Mrs. Mark Melander’s all-time favorite songs. I MAY have been on top of The Kedron Valley Inn’s tavern bar in my wedding dress singing it late-night on July 26, 2003. It also happened to be playing when we got in the car after the doctor’s appointment last week. There may have been some air guitar. If you’d like to reacquaint yourself with this epic masterpiece, here it is.

Since this is my first foray into plastic surgery, I’ll tell you what I’ve learned – these people really take their jobs seriously. Their residencies are 7 years long! They have to know all the body parts. Impressive. They won’t let anyone, including other healthcare providers touch or even go near their “work”. My surgeon told me to ignore anything my visiting nurse says after surgery and to never, ever, oh GOD NO, do NOT go to the Emergency Room with any concerns about my chest after surgery and to, for the LOVE OF GOD JUST CALL HIM.

For example, if I needed a dressing changed, even on the weekend, I was to call the office and speak to the answering service who would put me in touch with the physician on call. To test this theory and make sure those lazy residents were really on their toes, I did just that, last Sunday.  The dressing on my right (your left) nipple — I really don’t like that word but you’d be surprised with how comfortable I have become saying it — needed changing. As it turns out, a nipple/skin-sparing mastectomy can be quite hard on the poor nipples. They go into a kind of distress after the surgery and need time to cope with the loss of their supporting tissue. I understand that. I have wept myself, it’s really only fair that my nipples get to also. (I will not include a picture, I promise, but imagine the girls kind of look like this as a result: 😷 .)

After speaking with the physician on call, I was to go to MGH and have the front desk just page him, and he’d come down and escort me to the clinic.  Easy. My sister and I arrived and asked the nice old man at the front desk to please page Tom Irving, and that he was a plastic surgery resident who was expecting me. I was quite sure that was his name. Until I wasn’t, because there is no Tom Irving at Mass General. My mind is a sieve these days – there’s a lot of information being processed and several medications being ingested, so I started rattling off other T- names and then other I-surnames until finally we figured it out. Ten minutes later. The man at the desk was quite rattled by the time we found him. His name was not at all Tom Irving. But close.  He came down ten minutes later to get us. And he ended up being totally hot.

Now I know the doctors really only see the wound/body part/issue they are treating. But the patients see the whole doctor. And this one was really handsome. So here I am totally embarrassed that this hot young man is going to change my freaking nipple dressing. And my sister is wondering whether she can sneak off her wedding rings. And we are both trying to Google him as we walk into the clinic. It was mortifying. And hilarious. It kind of made my weekend. Sad? You decide.

Anyway, I had my real follow-up appointment with my actual surgeon later that week and while HE was checking out the situation, I felt the need to go and tell him the story about the wrong name and the cute resident, and how all plastic surgeons seem to be good-looking, and was that a thing? And that I was embarrassed that he had to poke at my nipple on a Sunday, but it was probably better than whatever else a plastic surgeon on call on a Sunday at MGH was seeing.

My surgeon, who has quite a sense of humor, let me tell you, then told me if I’d like, he could arrange to have Tom Irving (not) at my next appointment? and I was like OH GOD NO. End of appointment. But it gets better.

So then, Mom and I (she witnessed this whole thing and can testify to the fact that all of this actually happened, that I am actually this much of a boob, pun intended) go and check out with my new friend A., because WOULDN’T YOU KNOW IT, I LOVE all the new people in my cancer life, and she’s the assistant to the surgeon so I have seen her like four times in the last three weeks, so we are best friends. Sidebar: I am certain I am one of the more entertaining cancer patients she has seen, because she seems to like me too, and I think we are getting drinks next week. I tell her the story while she’s finding me my next appointment and she not only wants to know if he is married, but she tells me that the plastic surgeon is surely going to tell Tom (not) all about this and she wouldn’t be surprised if he paged him the minute he left my exam room.

Which is mortifying and hilarious. AND WOULDN’T YOU KNOW IT…

Who walks right through the checkout area and looks right at me?

Dr. Tom Irving.

Dr. Plastic Surgeon sold me down the river.

I looked at A., and said “oh my god, give me my appointment card! I have to get out of here! And look him up on your MGH intranet, will you!?”

I grabbed my mother and ducked, and ran out of the door.

I’m 40. This happened.

At cancer school a few weeks ago, I was introduced to a genetic counselor who helped me map my family disease-and-condition tree. I was whisked off to get blood work and sent on my way. MGH works with a third party to do the testing, so I received my results two weeks later. The test checked for eight different gene mutations. I was offered the choice of the 4-gene panel or the 8-gene panel, and since I am always looking to get a bang for my (insurance) buck, of course I went for the big one.

I always thought I was perfect. I mean, I know I am not. But I kind of thought I was pretty nearly whole, complete — perfect(ly fine). And I definitely always think — still — that I am right most of the time. Because I am. Statistics say that people who think they are right 100% of the time are actually WRONG 40% of the time but oh no, not me. I’m pretty perfectly fine and right most of the time. With almost everything.  As it turns out, I am rather imperfectly and very wrongly, the owner of a mutated gene, one of the great eight! It’s called PALB2.

You probably haven’t heard of it. They’ve only discovered it in the last few years. It’s like the Jan Brady of BRCA – kind of just as relevant but no one talks about it or invites it to gene parties. With this mutation I have (had) an up to a 58% chance of getting breast cancer, while all you (female) fools have only a 12% chance. I am such a SUCKER!

This mutation came from one of my parents, and my sisters and children have a 50/50 chance of having it too. My parents and sisters are being tested, and if they have it, they can make decisions about their health care in a much more informed, proactive way. Since I only found out about this little genetic shit sandwich AFTER being diagnosed, it gives me an explanation of sorts, for now, and gives my medical team some context on which to base their recommendation for go-forward care. SO really, its a win-win all around. It continues to be hilariously amazing to me how many profound silver linings are coming of this. I just spend ALL MY TIME laughing these days.

Not.

Don’t go anywhere yet! The real good news is that pathology came back. After they took all of my guts out during the mastectomy they sent it away to be analyzed. This analysis (for you cancer rookies!) tells us the extent to which the cancer has spread, how much of it was there in the breast, how big the tumors were, whether they got it all, etc. It gives us a STAGE. Everyone wants a stage, it’s a status thing I think. Like being in AP English or something.

The news — all cancer is out, clean margins around each area. They went in for TWO tumors in the left breast and it turns out there were THREE. The third was the same size as the larger of the other two (1.7 cm). This is pretty small, which is good news, but still really scary that two mammograms, an ultrasound and a biopsy didn’t catch it. The third tumor was just .7 cm but when you think of three all on one side… my poor boob didn’t stand a chance! One lymph node was seen on the ultrasound as cancerous so they took out 15 during surgery to be super careful, and thankfully just that one node was malignant.  So Stage 2, that means. The other side showed DCIS, but early, just a Stage 0, with no lymph node involvement.

All in all, this is the best news we could have asked for, other than, “whoops! We were wrong, that wasn’t cancer!”, which we knew wouldn’t happen. The bad news: I still have to undergo chemo and radiation. Since I’m just 40, this medical team has to keep me alive for another forty-plus years. If I were say, 70, maybe they wouldn’t suggest chemo but in my case, they want to be REALLY SURE there are no rogue cells gallivanting through my mutated-gene-infected self.

So, I still have to run the marathon. Except it’s going to be a flatter course, I’ll maybe be a little faster and it will probably be like 63 degrees and overcast (or whatever perfect marathon weather would be. I have no idea, because I hate running). But it’s still chemo, it’s still radiation. So, it will still suck. But at the end of it, I should be okay.

Here’s hoping.

This is so weird. The kids are back to school, I’m on leave from work (which has been, for the last 19 years, a 50+ hour a week, full-time marketing job), resting, trying to maintain a semblance of normalcy (ha!) while silently willing away the itch from the drains in both my sides and ignoring the vice-grip pressure around my mid-section*.

I can’t really do much, and even if I could, I am presumably going back to work at some point very soon. I am told that people can and do work through chemotherapy treatment, and that is my intention for now. So I have this strange, unplanned (that’s the understatement of the century) break from what is my normal — with no agenda, no objectives, nothing. I suppose it should be liberating. I suppose it should be another silver lining, which I assume on one of my more optimistic days, it might be. But today it just feels strange. It’s sort of as if I am in a little poser bubble, floating into a world/town/life of someone else’s.

After limping my way through a shallow bath this morning (shaved my legs too, thank you very much), I donned my best mastectomy bra (read: straight jacket), pinned my drains to my sweatpant waistband (getting hotter), and put on my husband’s oldest, softest button down. Some dry shampoo and waterproof mascara and poof! I was ready for the day! I packed a bag, a water bottle, and some thank-you notes  and am now sitting, relaxed and calm, at the local public library. There’s a big sunny room upstairs, big leather couches and very little talking. There are also hundreds of magazines. I am a self-proclaimed magazine whore so this is about as close to perfect as life is going to get. Today. You know, with breast cancer, 1 week post-op, in sweatpants.

It is here that I sit and reflect on this “break” I’ve been given forced into for reasons that I will never understand. What will I learn from it? What control can I take now to make the rest of this bus ride a little less shitty? What experiences will I remember when this is all over? What impact can I make from my weird poser bubble?

Pathology will come back from surgery this week and will determine the stage of the cancer, the course and timeline for treatment. In the meantime, I’ll figure out what the hell I should do with myself and let you know what I come up with.

What would you do if you were me?

*Quick note on the pressure I mentioned: you’d think when a body part (in this case, tissue, but a lot of it, leaving my skin behind) is removed you’d feel pain of some kind. The doctors said I wouldn’t really, but of course, what do they really know? Harvard people aren’t THAT smart. They were right, though. Instead of any kind of hurting, there’s an enormous amount of tension, pressure, and then an ironic numbness from about my armpits to the bottom of my rib cage. Zero feeling in my chest, like it has had several shots of novocaine at the dentist. If my breasts could talk, they’d be drooling and twalking wike dis while de dwugs woh off. Who knew?

No, really. Surgery has all kinds of risks– the obvious and the unexpected — things they tell you probably won’t happen but they tell you anyway, because, lawsuits.

My surgery went as perfectly as it could have gone. Breast tissue and select lymph nodes, out. My God-given skin (with nipples in tact–I have never written or uttered the word nipples more in my life! But it turns out that they in fact go a long way to make a boob look like a boob), on. New, 16-year-old-teenager-condition implants, in.

Go ahead, Google mastectomy. Look at the image results. Blech. Good news! I don’t look like that. I can’t see my incisions. They’ll be under my new perky boobs. Modern medicine is amazing, and my surgical team is really at the forefront of it. I spent ONE NIGHT in the hospital.

I’m wrapped in this clear, plastic film and from what I can see, things are generally similar to any other set out there. There’s swelling and numbness, and I have these nasty drains on either side of me that need to be measured and emptied twice daily, but generally, things look anatomically accurate and acceptable.

surgical drains, the other kind of fun bag

Despite their boring outer exterior, I did suggest to John that they might glow. We will see next time we go to glow-in-the-dark mini-golf .

Since I have been home, I’ve been asked questions about how I’m doing mentally. After all, this is one step in a long series of steps I will be taking to get rid of the cancer. And, well, let’s not forget I basically had a part of my body amputated.

Here are some of those questions, and my answers, best I can explain:

Are you angry this happened to you?

Of course I am. I’m completely irritated that I have to deal with this. Do you know how much crap I have going on? Have I mentioned my company is going through a major metamorphosis, and as part of leadership,& was to be a part of that change? Did I tell you how Mark is reassessing his career and interested in making changes himself? I probably didn’t tell you how John DOESN’T SLEEP. Or that I started a workout regimen in January and was just starting to see significant results.

Maybe you mean, “Are you angry this happened to you?” Well, that answer is no. Because if one in eight women are going to get breast cancer, I certainly don’t want it to be you instead of me. Or my sisters. Or my mom! Or my sisters-in-law. If me getting on the bus means then you don’t have to, I’ll take that. Because I love you.

Are you sad about losing your boobs? (This question is most often followed by an enthusiastic complement of my old girls, for which I am always grateful)

Oh hell no. Did you know that my old, hot boobs tried to KILL ME? Good riddance.

Do you want to run a race with me and raise money for breast cancer awareness?

Where’s my checkbook?