40

I turn 40 tomorrow. One of those milestone ages that seem about as close as the moon when you are younger. I turn 40...I GET to turn 40.

I turn around and have no idea and every knowledge of how I got here. 40 years of memories, some so clear I can see them as if a movie reel in my head. My life is nowhere near what I imagined it would be at 40, but then, is almost anyone's?

I shed tears tonight...not because I'm turning 40 (I want to shake...throttle the people who bemoan birthdays, who hole up in their rooms and rage against the extra candle) but because I want to turn 41, and 42 and 45 and 55 and 65 and 75. You start to feel greedy asking for years, asking for time that so many give not a second thought to, that most expect.

I still don't know many things. But I do know that even on days when I lose my shit, sometimes on the very days I least deserve it, my smart beautiful son tells me I'm the best mama in the world. I know that every day I watch this little sweet stunning girl who fought inside of me, grow and talk beyond her short years. I know that I am lucky in the spouse department...that I have a husband who never waivered for me, who was as blindsided as I by the past two years yet has never once winced or blinked at the baldness, the scars, the uncertainty. I know that I try...to be a better mama and wife, to really appreciate the fact that my days with them are a gift to me.

I know that this year my word is Brave...I need to be brave, to take chances, to not be afraid of what could or could not happen.

I know that I have lost way too many people - people who didn't get to turn 40. I know that they will never ever be forgotten to me.

I know that I need to give myself grace, to know that I can't humanly ingest every day and moment like I should - that even after all of this crap I'm still human and nowhere near a saint or a poet.

I know that this body with its trail of scars and Frankenstein-assembly that I never could have anticipated or imagined is mine. It still, for the most part, works. I am lucky.

I know that I still do not love this curly hair that I've been left with, with the grey that's been growing since I was 20...but I appreciate it every day.

I know that while I have been unlucky in certain aspects, I have been very lucky with many more.

I know that I will take any candle I am blessed to get. And I want more.

My friend.

My friend died last night.

 

That's really the weight of it. She died. She was here, we talked almost every day for a year and a half. She disappeared from all of us about a month ago, shut off communication at the news of stage 4, went into the hospital this past weekend and is now gone.

 

We sat in a virtual waiting room yesterday, waiting for news, sharing pictures, stories, laughing, crying...many of us strangers to each other, but connected by this one person. Holding hands and passing tissues and clinking glasses in salute over hundreds or thousands of miles. It was...surreal.

 

How do you mourn someone you've never physically met but were closer to than some people you've known for years? How do you forgive someone for shutting you (and most everyone else) out in the last month even though you completely 100% understand why? How do you forgive someone for leaving you when they were not supposed to, when you were both, having such very similar circumstances, supposed to beat this together?

 

I make friends neither quickly nor easily. Now I have one less here with me.

 

Sue was the inspiration behind this blog post. I ask that in her honor, you take a trip, you laugh a little louder, you try a different food, you celebrate this Halloween in an especially big way, you live a little bigger, and you make a friend out of a stranger. This is for Sue.

A Roiling Boil...

Do you ever have so incredibly much going on - good or bad - that you just feel like you are in a bubbling whirlpool? I'm in the whirlpool. Between my very long and scary surgery tomorrow, Jack turning four, my baby girl just changing immensely every day, my grandparents house, a house that I pretty much grew up in, being almost emptied and up for sale....I'm just overwhelmed. They aren't all bad changes, but they are big life changes all at once and my goodness, for someone who does not like change at all, well...I was driving home from my grandparent's house this weekend, singing loudly with my Mumford and Sons and streaming tears - some happy, some sad, some grateful, some freaked out.

 

So now I will try to go to sleep until 5 am tomorrow morning when I get ready to go to the hospital, and kiss my sleeping babies heads, and get ready to put one of the big life changes behind me.

Insomnia...

So, I'm sitting here at 11:59 pm, which if you know me, is ungodly, watching the season premier of So You Think You Can Dance (umm, yes, I still harbor delusions that my few years of ballet in grammar school will translate into, I don't know, admission into the Old People's Ballet Company? What of it?) writing out a list of things that I have to get done in the next three weeks. Before I have the big big big surgery, on June 17th. This one is keeping me awake. This will be my 5th surgery (in my life, not because of the cancer), and it will be a doozy. Almost 8 hours, likely 5 days in the hospital. Six weeks of pretty ugly recuperation. Dealing with a 19 month old who I cannot in any uncertain terms, lift for 6 weeks and who loves to be picked up by mama multiple times a day.

And this one sort of scares the crap out of me. Yes, I've wanted this surgery forever - yes, I was completely theoretically prepared for it. But now that there is a date and a time...holy crap. Because you know what? Yes, childbirth can kill you and cancer can kill you, and hell, getting in your car can kill you...but surgery can kill you right.then.and.there. And this is elective...there is no medical reason to have this surgery, only my own vanity and comfort. I'm putting my own life at risk and putting my family through a large period of disruption...for my vanity? Does it really come down to that? I know it's much more than that and I know I have absolutely no reason to feel guilty and I know it will be a distant memory soon but you can't help but to think. And then maybe I need to remember, like everyone else has been , some wise words by a woman we lost today...

 

Pinterest

 

 

Yes, this all has changed me - mentally, physically, emotionally - but I need to remember that I should be damned if I let it make me feel guilty for wanting to feel somehow whole again; to somehow, after the Frankenstein scars from this surgery fade, feel semi-comfortable in my own skin again. I am worth it. I deserve it. I will have it. It will be good.

Check in

Sorry, I've been holding my breath as I always do when I have a scan and I received the all clear today, so now I can breathe again. Couple posts in the works and have also been working on reopening my Etsy store (Moose Country Crafts on etsy and facebook) aaannnd as I've talked about, getting my grandparents house reaaaaaalllly close to the market. Basically I have been keeping myself busy trying not to think of getting results! Be back soon!

Mother's Day 2014

 

Mother's Day now, to me, is not a day to be feted. In fact, oftentimes I'm so frustrated and disappointed in my own mothering skills that the last thing that I think I deserve is any sort of congratulations in the matter. What it does represent is a day to be so thankful that I was gifted these two beings. I don't always remember this in the throes of another dinnertime where Jack is refusing to eat or when AR decides to scream and cry for half an hour because I don't give her the 300th cracker before lunch, but I am well aware of many fellow cancer ladies who have been stripped again of one of the most basic of human rights - the choice of whether to have children or not -  as a result of this completely unfair siege.

 

This is a day to thank God again that I get to be here. A funny thing about Mom's with littles who have gone through this fight - while most other people (and I do NOT in any way begrudge anyone this, it's just a difference that I have noticed) talk about their bucket lists and places they want to visit and things they want to do (and yes, I am not in any way saying I still don't see myself sitting in my little coffeehouse at the end of the street in the Salzburg Altstadt, sans kids, sometime soon), we make deals with God about time. And not time for us, time with our kids. I can't count how many of us have told each other that we have tried to bargain with God by asking "Please just give me 5 more years so I can get them into elementary school" and then "Please God, can I just have 10 more years because then they will be in high school" etc etc etc. Things that don't occur to other Mom's swarm our brains every.single.day. So these holidays, Mother's Day, birthdays, etc., are not just holidays, not just breakfast and flowers and cards -  they are milestones.

 

 I don't need to know how much they love me - I desperately need them to know how much I love them.



You keep living.

Pinterest



A facebook "breast" friend of mine posted this the other day - it's from "Call the Midwife" (I watched a few episodes and it was very good but I didn't keep up, do any of you watch it?)...anyway, I have no idea what the context of the quote is but it about absolutely perfectly describes what I've been going through, and probably most anyone who has gone through some traumatic event.

 

You just keep living until you are alive again...you keep going every day until you don't see that black veil behind you because you are just too busy to even think about it. And then you keep living until you don't see that black veil because you are too happy in this moment to think about anything ominous. And you smile because you realize that you haven't been able to feel and embrace that happiness in a long long time because you were terrified to... because if you let your guard down and think that things may just be okay, that maybe you don't have to worry every single minute of every day, that if you dare to have the audacity to plan ahead, to dream again, to recklessly believe that you are actually okay - that that moment will be the one that invites shit to walk right back in the door. You keep living until one day you don't internalize and personalize every bad story that you hear, and you hear entirely too many of them in this club. You keep living until someone offhandedly saying "Wait until she's a teenager" doesn't make your heart shatter - because you know you will be there to suffer through it and you will cherish every fight coming your way. You keep living until there are more and more minutes and hours strung together in which you actually improbably forget that you have had cancer. You keep living until there is a day when you feel pretty again, when someone looks at you, like they used to, and your first thought is not everything that is wrong and scarred and mangled underneath your clothes but what is still present in your face and your eyes and your smile.

 

 

You keep living until one day you realize that you do have permission - you have a right - to feel alive again. I'm not there yet, but I'm working on it.

Constant battle

Source: Pinterest

It has been a bad few weeks on the news front as far as our facebook group of girls and some other people that I have heard about as well. It just saps the heart out of you some days, and your already semi-constant anxiety grows and you have to consciously, almost physically, stop your mind from spinning like a hamster wheel. It's tiring, exhausting actually, but you do it. You contemplate running away, singing while your fingers plug your ears and not looking back but then you remember that you would not want people to run from you if, there but for the grace of God, something should happen.
So you make sure to soak in the sound of the rain that's fallen for the past two nights. And to stand in the ferocious winds that blew today, with your face toward the sun and the sound of hyena-like child giggles in the background, and breathe.
 

The most important piece...

After my little breakdown yesterday, as I sat on the couch last night trying to explain to my husband why I was so sad, why it was one of my bad days, he reminded me that I was forgetting the piece of this puzzle that I have held on to from the beginning, one of the first things my doctor said to me. That even though the medical community is based on a platform of statistics, numbers, algorithms, percentages, and calculations because they have to be, I do not. I am not a number or a statistic. This is my story and as tragic and horrible and awful and unfair as some other people's stories are, as similar as they are to my own - those are not my stories. This is my story and right now my story is that I'm fine. I'm okay.  I'm 39 and I'm a mom and a wife and I've been through some crappy stuff. I'm tired and I lose my patience and I try to figure out this mothering thing everyday, because really, if anyone knows the secret to one and three year old crazy I'd be willing to pay. I'm happy and weird and I like to sing loudly in my car...and at home. I'm super-sensitive and I cry easily at many many things. I do not take shit from anyone very easily and my 5'2" self has been known to scare things much larger. Cancer is part of my story, but I will not let it be my whole story. This is MY story - the story of one.

Purgatory...

I went through 12 years of Catholic school. I'm sure teachings on this have changed significantly over the years, but in first and second grades, we learned a lot about purgatory, the place between heaven and hell where you went if you weren't quite good enough to get straight into heaven, but certainly were not bad enough to go straight to H-E-L-L. Purgatory housed people who didn't have enough graces (I used to think of it like collecting enough skee ball tickets to get the big prize at Castle Park) or didn't say a perfect Act of Contrition before they died, or maybe you were a baby who had not been baptised and therefore had not committed any sin but had not been cleansed of Original Sin. Whatever the story, you were stuck in no-man's-land until enough people left behind prayed for your soul and you collected enough grace tickets to gain entry into heaven...or you just languished there forever.

 

The aftermath of cancer, after the treatment, at least in the beginning...that's like purgatory.

 

Heaven would be the rest of your life cancer-free, but of course no one knows if that will happen until, well, until they die without having a recurrance. So basically you still live your life in purgatory. I'm sure as the years go on without any problems purgatory transforms into a much more comfortable place. Don't get me wrong - after this crap, even in purgatory most of us are trying to dance more, laugh more, be a little more wild and at times reckless - and get all of the tickets that we can from the damn skee ball machine. Purgatory doesn't have to be boring, but it is at times...I don't know...heavy.

 

Because you know that at any moment the cancer bitch could come up and sucker punch you and steal all of your tickets because SHE wanted the 5000 point prize and the floor drops and down you go...and you find yourself in a doctor's office, being told that the scan doesn't look good.

 

When you join this craptastic club, unless you shut yourself off from everyone, which some days you really want to do, you will see loss. You will have a front seat to shitty outcomes for people you may never have even met in person but care about and cry for and hurt for. You will hear of a bad diagnosis, of mets, and the twisted black tiny portion of your mind that you are ashamed of but that is purely human and natural will sigh and think thank god that's not me. And you will cry silent tears while you are rocking your baby before bed. You will go and sob alone and undetected in the shower and you will dry your eyes and go read to your son before bedtime. And then you will spend the next week rehashing over and over again the thought that this could be you, at any time. But then you will get up and brush yourself off, and put on loud music and dance and sing and keep on swimming and live in purgatory.  

 

In the past six months, in my small 120 or so person facebook group, we have lost one person, one person's mets have spread and the chemo is no longer working so well, one other person has had brain surgery and radiation due to mets and one was just diagnosed with mets today. I'm just angry. Angry that it's still a zero-sum game, angry that all too often someone gets sucker punched and robbed. I'm just angry.

Breast Cancer is not the "easy" cancer...

As the 4th was World Cancer Day and many cancer awareness campaigns are being done this month, a few ummm, interesting, ads have shown up...like this one from Pancreatic Cancer Action...

 

 

 

Well, hip hip hooray!! I didn't even know that I won the cancer competition when I was diagnosed, at 37, with Stage 3C cancer, while pregnant!! How silly I was to be concerned, because we all know that everyone with breast cancer lives! It's like having a cold!! Hooray for me!! Phew, I had no idea that I can relax now, without a care in the world for what might happen to me, because I GOT THE EASY CANCER!!

 

Excuse me for a minute but WHAT THE FUCK?? I wish I had breast cancer?? I understand, believe me I do, that pancreatic cancer is no joke and has a very high mortality rate. I completely get that. But maybe you'd like to talk to some of the girls in my facebook group, who are in their 40s and fighting stage 4 breast cancer. Maybe you should talk to the 32 year old mom of two littles that I went to the August retreat with, who is fighting stage 4. Maybe you should talk to me after my 4 rounds of chemo while pregnant and my resultant mastectomy and my 12 rounds of chemo after that and my 33 doses of radiation after that and my constant numbness and pain and tightness that I deal with every single day. Maybe you should talk to me after I dealt with the plastic surgeon who basically insinuated that I was probably going to have a recurrence any day now and really shouldn't bother to look into reconstruction right yet because really, I may not be here long enough to enjoy it.

 

How about I wish there was no cancer? How about no more deaths of any type of cancer? This is not some sick kind of competition, this is something that everyone should be in together. Because with crap like this, we all lose.

 

 



My 39th year...

 

"Oh, Earth, you are too wonderful for anyone to realize you... Does anyone ever realize life while they live it...every, every minute? No, saints and poets maybe, they do some." - Wilder

 

I can guarantee to you that my husband...and Jack...and A-R if she could talk...and the rest of my family and friends would tell you that I am no saint. My high school creative writing teacher, Mrs. Roth, would tell you that I'm no poet. But with all respect to Mr. Wilder, although not a poetic addition (see, I know what's not poetic), I would add "and people who have or have faced life threatening illnesses or situations".

 

 

Google Images

 



 

This crazy beautiful precious life is just funny. Life truly ain't nothing but a funny funny riddle. You spend your youth voraciously coveting additional candles, longing to be older, waiting for the day that your life will "begin!!" "When I'm older I will..." starts innumerable sentences. Somewhere in your 20's, you start feeling time accelerate - not only chronologically, but also across your face, parts of your body, your hair (in my case for sure, I've been going grey since my early 20s). What only years ago was a source of pride - "I'll be 16 six months before you!!" - becomes "Ha Ha, you'll always be six months older than me!" Your 30s come and eventually parts of you start creaking and cracking and you realize holy crap, somehow I've ended up precipitously close to middle age. The music you grew up with starts to be played on "retro" weekends and classic rock stations and the band members are receiving their AARP membership applications. You find yourself going to your 20 year high school reunion, which you can't really understand because you are certain that, even though you have been married for 11 years and have two children, you KNOW you only left college about 5 years ago. But if you are healthy, all of these thoughts are accompanied by the tiny voice in the back of your mind going "but I still have soooo many years ahead, no big deal." And then something comes and smacks you in the face so hard that a punch would feel like a cotton ball, turns your world so upside down that vertigo seems like a gentle ride on a small carousel, that everything you previously knew for certain, everything you knew to be true about this world, is intrinsically forever changed.

 



People who hide their ages, are ashamed of them...I just want to shake them and say "Why can't you see? Why can't you see how very very lucky you are? Those years are family you got to love and sunsets you experienced and places you traveled and children who were able to know you." But I understand. It's truly not something that you can ever comprehend until you live it and I get that. And I mean that - I have been on both sides now - even if you have taken care of someone who has passed, even if you have lost people around you, even if you have lost a piece of your heart when they left. I have lost many people in my life. I have lost people at a young age (both them and me), I have taken care of people that I have lost, I have taken care of someone who at one time held my heart, I have lost chunks of my heart, a rather large chunk of my heart- but I didn't fully understand - I didn't fully ingest, absorb, taste, consume the complete and utter fragility of this life until I got sick. I can see the theoretical thestrals. I wish to God I couldn't, I wish I thought the carriage was still invisibly guided, but I can see them.

 

So this is what a birthday means now.

 



 It means that I had another year to practice at this crazy dance called marriage. It means that maybe to these two beings I will actually be a tangible mother, not a vague memory or scent conjured only by pictures or stories. It means I had another year to try and realize any, some, bits and pieces of my dreams and goals. It means that I have had another chance to continue in this powerful play, to contribute another verse.

 

It means that if someone says, "Oh, you'll always be older than me" I will smile and say, "Yep, isn't that great!?" It means if someone says, "Don't worry, you'll be there one day", that I will gleefully say "Yes, I will, and I can't wait!".
 

Never again will I lament the opportunities, the blessings that the passing of this time has given me. Never again will I fail to celebrate another candle, another 365 days, another 525,600 minutes.

Never again will I spend and waste time as if I had a million years.

I am 39 years old today.

A small peek into what cancer does to your mind...

As I have mentioned, I am going to a cancer retreat this weekend and am completely looking forward to it. Until a couple days ago when I was in tears at random times. And I finally connected why. One of the activities included in the retreat, in most cancer retreats, is a message. Totally awesome, right? Something most people completely look forward to and pay good money for. Except to me it's an impending panic attack. Because I finally realized that on some deep level I equate getting a massage with getting cancer.

By the time I was diagnosed, the tumors under my arm were pressing on a nerve that ran down my arm and also causing a bad pain in my shoulder. The night before my ultrasound/biopsy, the night before my world started to fling itself off of its axis, the night before I, for all intents and purposes, lost my innocence to be ridiculously yet appropriately cliche about it, I had my husband rub my neck and my shoulders because it hurt so much, still completely and contentedly oblivious as to what lay underneath and ahead. Since then, even if I have had a pain anywhere, whereas most people would say, "Honey, please rub my shoulders" I completely ignore it, because to validate the pain might mean validating that "something" is there again. Because rational or not, somewhere I have always thought Oh my God, what if him rubbing my shoulders that night caused something to break open and spread further? So there you have it....

On top of that, I have a pain in my shoulder. Not a bad pain, not even shooting pain, just sort of a sporadic irritant; something I would never in a million years have gone to the doctor for before. Could it be from repeatedly lifting a 17 lb baby's butt to my face to smell her diaper? Could it be from the bunch of lifting and reaching I did last weekend? Could it be from holding the baby with my non-dominant arm because my left arm is just tired? Not in my world! Because after cancer, every pain, every ache, every upset stomach, every muscle spasm is cause for your mind to start racing at what it could be. So I'm fitting in a quick trip to the doctor tomorrow morning, hopefully for a "you know you have a cancer patient, please set my mind at ease" appointment before our trip. Which I desperately need. I am so exhausted, mentally, emotionally and physically.

Five hundred twenty-five thousand six hundred minutes....

How do you measure a year in the life?

I measured it in ultrasounds and biopsies, black masses, and sinking feelings.

I measured in it terror-filled hyperventilating half-breaths,
sleepless nights,
early mornings, deep breathing and doctors visits.

I measured it in MRI's and EKG's, blood tests, urine tests, blood sugar tests, finger pricks, and baby kicks.

I measured it in 16 rounds of chemo, hair strands falling out, rainbows of bandanas, and pre-natal non-stress tests.

I measured it in confused stares, loud whispers, grasped hands and prayers.

I measured it in perfect baby girl first cries, in surgery, in CT scans, in pathology reports, in interminable medical bills.

I measured it in help from strangers, kind words, unknown prayers and donor milk.

I measured it in rainy days, grey clouds, heat waves, and electric purple sunsets.

I measured it in stifled shower sobs,
in laughs with chemo nurses,
in baby toes and late night feedings.

I measured it in 33 days of radiation, deep burns, painful cries and peeling skin.

I measured it in a 38th birthday, a 49th for my husband, and an awesome 3rd birthday for my boy.

I measured it in stupid cruel comments, in beautiful gestures, in buckets of tears, oceans of hugs, and yes, cups of coffee.

I measured it in long walks with baby, laughs with my boy, hugs with my husband, and love from family and friends.

I measured it in renewed dreams, hungry views of travel, terrified glances over my shoulder, tentative plans for the future.

That's how I measured a year.

Words.

Sticks and stones may break my bones but words will never hurt me....has to be the biggest load of bullshit ever foisted on someone. Some of you may have read this post roaming around the internet right now. I read this earlier this week and it was especially poignant because last week I got into an argument on facebook about the dumb "what color bra are you wearing" secret code game that's supposed to miraculously create awareness about breast cancer if you post - and "Don't tell anyone what it means girls!!" Actually, I didn't get into an argument, all I said was something to the effect of "I'm aware enough thanks", and then was challenged by a family member about posting for others who are not aware. I stated my opinion - how does this raise awareness, this is a game about a serious subject, this is my life right now, it's not a joke, if you want to raise awareness go do a walk, donate some money, post about self exams or mammograms or something. Anyway, the original family member signed off but another one came on telling me I was being condescending in telling people how to raise awareness, that people care and they should do what they want...and the topper - that I have my life, so basically I should shut up and not dare to contradict anyone. Yep, this is all from family members. People who, if I posted something that they had an issue with and a direct link to and they asked me to take it down or not participate, I would not even hesitate to do as asked. If I posted something about some pseudo-autism campaign and was asked to not participate for whatever reason - they didn't like the message, they don't like blue anymore, they don't like puzzle pieces -whatever! - I would say of course, I'm so sorry, I didn't think of that. If I posted something about stomach cancer, cervical cancer, prostate, pancreatic, colon, brain, whatever cancer and was asked to take it down I would do so right away, no questions asked, no challenges, nothing. But you know what - I OWN THE BREAST CANCER PART OF THIS SCENARIO. The fact that family members challenged me, questioned me, and attacked me hit me harder than I thought it would and the whole "you really find out who your true friends are" hit me smack in the face.

Happy 4th!

It's been awhile. We took a short trip up to the mountains last week and that was both great and not relaxing at all, as no vacation with an infant and a three year old will ever be.
It started out like this.....which was supposed to last two hours...it lasted 30 minutes. Oh well.


Got a cabin with some games and a foosball table in it thinking that would be great to entertain Jack. Well, it worked a little too well - he never wanted to go outside!

 Finally got him out and about although he wouldn't put his feet in the lake. I'll make an adventurer out of him yet! (although he did see his first deer while we were on an off-road trail going to find some godforsaken giant pine)

 Last time I saw a Dishmaster was about 30 years ago so I had to memorialize that. And the cute one in the sink.

 A happy 4th of July to you all from the little one, celebrating her first.

Now we are off to hunker down as people shoot of M-80s in our neighborhood allllllll night long. Happy 4th!

 

Okay, so now what?

The denouement of cancer treatment is decidedly anticlimactic. I mean, I guess that's a good thing for now, in fact, yes, I'll take this outcome right now. But, it's like running a marathon for the first time (not that I would EVER know that feeling) and the finish line is already packed up, the balloons are down, the crowd is gone, and the clock is flashing a blinking 0:00 because it doesn't really care anymore about your finish time. Last radiation treatment is tomorrow, and then..... exactly, and then what? I mean, I see my oncologist in three months, I see my surgeon every six, I'll start talking with a plastic surgeon in a few months, I'll have a scan once every three months or so for a while, but that's about it. TA-DA!!! Talking with some of the girls in my FB group, I said there really should be a cancer treatment debriefing, like when you return from a deployment. I'm not going to compare it to coming back from war, it's just you are in the midst of all of this chaos for months and months and all of a sudden, you're not, and it's disconcerting - this trying to get to your "new normal" (another term I loathe, I don't know why, it just rubs me the wrong way).

So we will plan some small trips in the next few months - I have not been on a plane in, my goodness, two years, and that is just bizarre to me - and I will try to find work again and feel like a contributing member of this family, I will start planning a first birthday party, I will try to bear the onslaught of summer (my least favorite season), and I will try without success to push this to the back of my mind and get on with the business of living.

Radiation 101

I thought I'd do a little post about radiation because as I thought about it, it's one of those hidden, unglamorous things about cancer that the average person probably doesn't know too much about. Heck, I sat down with my radiation doctor for an hour and still didn't really know what to expect. I knew about the burns, the fatigue, and the possible side effects, especially being a left-sided patient (unfortunately where your heart resides so there's always a remote possibility of heart damage in the future). But I still didn't really understand what happens, and it's a common refrain I've heard from my fellow cancer peeps. I mean, really, you see people receiving chemo in movies and TV - if it's lighthearted, then it's Samantha eating popcicles with the girls, having a few hot flashes and drinking a cosmo. If it's dramatic, it's somebody hunched over a toilet, puking their guts out as chunks of hair coat the bathroom floor. The truth is somewhere in the middle, but at least it's protrayed. The only time you are exposed to radiation - pun intended - is either Cher getting scrubbed down as the alarms blare (am I dating myself here?) or Russian sailors basically melting before your eyes after trying to fix the leaking reactor. Cancer radiation isn't movie-worthy. It's boring and it's slow (reaction-wise, you don't really have most effects until the last week or two), there are no cool IV's to show...there's just a big huge machine that makes a sound like an x-ray, and then you go home. So here's a quick synopsis of what the radiation train is like.

You can see the redness on my chest and neck here.

First, you start with a CT scan, or some similar procedure. I actually had two, one to see if the cancer in my inoperable lymph node was gone, which it was, and then a second one, which everyone has, which is basically the map on which your plan will be implemented. All of the radiation oncology doctors confer, come up with a plan based on I'm sure, many factors, and then it all goes into a computer and the plan is mapped out. You then go in for x-rays, to make sure you still line up with the plan, you get some tattoos (not in the places I expected, I have three across my mid-line, one near my armpit, and I think there may be one somewhere else. They are just pinpoints, not the ink I like. :) Then you go in prior to your first treatment to make sure that the machine is calibrated correctly to you and that all of your points match up. Then you start. You go in, they line you up with the coordinates, and it starts. They put a bolus on you, which is a gel-type pad that keeps the radiation beams at the surface of the skin. I get zapped 4 times, for about 10 seconds each. There are these metal "teeth" in the machine that move around and open up to the shape that needs to be radiated, and then it happens. The table raises high, you are about 5 feet up in the air, and there are lasers all over the room, but you don't see the radiation beams, and you don't feel them. Some people say they feel a bit of heat, I actually felt a bit the first few times, but not after that. The number of treatments varies depending on more numerous factors, including cancer type, stage, age, aggressiveness, location, etc. etc. I am scheduled for 33 treatments, 28 regular treatments and 5 boosts (boosts are radiation treatments that are concentrated only along the scar line, a place where cancer can often recur). The treatments go from the bottom of my neck to a bit under my bra line, from the center of my chest to the mid-line of my rib cage. I started the boosts yesterday, even though I have two more regular treatments, because over the holiday weekend all of the radiation seemed to catch up with me and my underarm is very burnt and painful, so hopefully this rest will let it heal a slight bit and I can make it through the last two next week. Considering how very fair I am and how I got red so quickly, I'm still doing okay comparatively, but damn it hurts!


Showing the huge contrast of my butt white skin and the red burnt underarm...

Just because I know you wanted to see a close up :)

Radiation - have you had your dose today?

Radiation blows. Now, that's not true for everyone, many people I have talked to have breezed through it, especially after chemo. However, since I breezed through chemo, well, here I am. I'm not doing terribly, and actually the doctors are quite pleased when they see me every week, saying my skin is holding up considerably well for being so fair and for turning red so fast. I cannot even imagine what they see and frankly, I don't want to. Last week, one of the radiation techs, after telling me my skin looked pretty good for day 15, proceeded to tell me about all of different kinds of cancers they treat, and how some are just awful no matter what you do. I'll spare you the conversation, but I try to remember that when I am walking around with my chest hurting all day, trying to carry the baby, trying not to punch her when she slaps and scrapes me on the chest with her no-matter-how-often-I-cut-them-they-are-always-there nails... (kidding people, seriously). But you get the point. I try to keep it in mind that in the scheme of things, this treatment is nothing compared to what some people go through.

Which I have been thinking about a lot lately, always being appreciative of what you have because you can always find someone worse off - until you are the person perceived as worse off! On the last day of chemo, I was talking to my nurse, who had not done my chemo while I was pregnant, she only did the taxol. We were chatting about something and I said, well, yeah, remember I was pregnant when I started and she said oh that's right. Some of the patients would talk about you and say "Well, at least I don't have it as hard as she does." And I was shocked - I didn't want to be that person, I wasn't that person, I was the person who sailed through chemo, hardly any problems at all! I didn't want anyone feeling sorry for me, not one bit. So there you go, more conflicted feelings brought to you by the cancer channel. Stay tuned for the next episode.

Shut the F Up!

Leave it to Angelina to stir up controversy. Apparently everyone is an expert about cancer now...especially people who have never had it. This post stemmed in part from yesterday's post, and my stupid stupid obsession with reading the comments section on articles, and comments some of my facebook cancer friends are receiving. I should NOT read the comments! EVER!! Anyway, it's been brewing for a while, and after chatting with some of my facebook cancer friends, it just needs to come out. If you are offended by language, change the channel.


1) If you feel the words, "Oh, lucky you, you'll get new boobs" coming out of your mouth...shut the fuck up, just seriously, bite your tongue off if you have to, drink some cholula, occupy yourself by going to get a tongue piercing, I don't care, just don't say it. If you want to type or text it, sit on your hands, learn sign language, break your thumbs, do something else with them right quick please.

Sure, most of us will go through some sort of reconstruction at some point. After we've been mutilated with a giant horizontal scar, after we have lost anything resembling a breast, after our underarms are misshapen if we have had lymph nodes removed, after we have lost feeling in multiple places. Then you get to choose from procedures involving the insertion of an expander behind your pectoral muscle that is slowly filled to stretch your already delicate skin, worse if you've been through radiation, or you get skin and tissue taken from your back to rebuild a breast, or from your abdomen. You can take visions of Pam Anderson right out of your head because what you are left with, if you are lucky, is serviceable, and if you are really lucky its close to symmetric. This is not a visit to Dr. 90210. Additionally, I'm sure 100% of us would gladly trade this opportunity for new boobs to, umm, maybe not have to have a life-threatening disease that could recur at any time...you think, maybe, hmmmmm??? "Thank God I got cancer, I can have that boob job I've always wanted" said NO ONE EVER.

2) Unless you have cancer, or maybe possibly your spouse or child has had cancer... please don't offer any "knowledge" that you have about how I got it, how I can cure it, what I should or should not be doing, what you heard from your friend's cousin's hairdresser, or how your high school teacher found the cure in the Amazon and is only sharing it with certain people. Please don't offer what you think are mortality rates ("oh, most people die from that right?"). Almost just as bad, please don't say, "Oh, everyone lives from that these days, no problem, no biggie!" Please don't tell me that not eating sugar will keep all the cancer away, that I should have been doing juice cleanses since I was 12, that hemp oil will cure me, that chemo kills people, the mammograms cause cancer, or that I could have prevented it by following these five simple steps. Shut the fuck up.

3) If you know someone going through cancer treatments, don't tell them that they put on weight/lost weight/look tired. Believe me, we very well know if we are gaining weight, usually from chemo and steroids and any number of medications we may be taking. We may not be able to keep up a robust exercise routine right at the moment. Also, believe me, people know if they are losing weight and that could be because they can't keep any food down, are stressed beyond belief and have no appetite, or they may not be doing very well. Either way, you don't need to point it out, that I can assure you. Don't you dare tell someone they look tired. If you haven't had chemo, surgery, radiation, and in my case, an infant at the same time, then don't even open your mouth. Cook them some food, clean their house, tell them they are beautiful, bring some flowers, but otherwise, shut the fuck up.

4) Please do not reprimand the person about keeping up a positive attitude, that a positive attitude will cure them. Believe me, I honestly have had a pretty damn good attitude during this entire mess, but some days are just sad, gloomy days. There aren't many, but when they hit, they hit hard, and you know what? I am perfectly entitled to have them! I bet you have bad days and you don't have cancer! I know sometimes it's just because you are scared for the person, and when they are sad, it scares you more, but this is their time, not yours. It's your time to be the strong one. If you can't, shut the fuck up.

5) Cancer has made me many things - blind and deaf are not some of them. Poor eyesight has made me almost blind, but you know what? Glasses have pretty much fixed that, and I can see you staring and I can hear you "whispering". If you see someone with a bandana on, don't stare. Go up and say Bless you, or I'm rooting for you, or I'm sorry you are going through this, please stay strong..say almost anything, but don't stare and don't whisper. I still and will always remember the man who came up to me and bought me lunch when I was so heavily pregnant and bald in my bandana - not because he bought me lunch but because he was the only one during my entire bald pregnancy that came up to me and said something. He said I don't know what you are going through but good luck to you, you will get through it. Not the most eloquent thing in the world, but something I will always always remember. So basically if you can't say something, don't whisper in front of my face - shut the fuck up.

This is not even half of it, but it's a good start for me...thank you to all of my friends and family who have not done these things...you don't know how much it is appreciated...