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.

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.

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.

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...

mother's day.

I missed out on Mother's Day 2010 by a few weeks, very heavily pregnant with Jack, developing a lovely case of PUPPS, and just trying to get a few hours sleep a night through the heartburn, so this is my third Mother's Day. And as with everything, its meaning has changed for me. Again, I will NEVER be one of those people who say I'm so happy I got cancer, it changed my life...because, umm, hello, yes, it changed my life but I could do without that, thanks. I will admit it changed my perspective though. Now, don't get me wrong, I would love to get the mixer I've always wanted and promised myself, or maybe the ring I've been coveting for 10 years now, a surprise getaway, or hell, a card and some flowers would be spiffy. Okay, so I still have mortal wants and desires, cancer doesn't make you a saint people, but overall, while some mothers are out there bemoaning their lack of gifts or time to sleep in or breakfast in bed, I am content with the sheer existence of the fact that I'm here and I'm privileged to get to mother these kids. God willing, I get to spend many more mother's days with them, ingesting the fact that I have had another year to know them, for them to know me. When I was still in the "fog of war" right after my diagnosis, when I was walking around with the 1,000 yard stare, one of the first things that scared me terribly, one of the first things that I cried to my husband was not about me per se, but I sat there looking at him, pleading with him, that "I can't leave Jack, he doesn't even know me yet." The tears flow just thinking about that, because I can relive that moment all too clearly in my mind.

While I strongly believe now that I will be around for a while, I am assured of the fact that no one, not any one of us, knows what is going to happen, and that anything could happen at anytime, which is why I am still compelled to write these things. And I'm also here to reflect on and acknowledge the fact that my kids have endured a pretty shitty year themselves. For this, I have more unwarranted guilt than most can imagine.

Baby, I'm so sorry for this past year. I'm sorry that I got sick, I'm sorry that sometimes I was very sad and you didn't understand. I'm glad you didn't understand. I'm sorry that sometimes I got short with you, and it was not your fault - I was scared or sad or worried or tired and sometimes I am ashamed to say I yelled at you louder than I should have, or got mad at you for things I shouldn't have. I'm sorry that I couldn't play with you as much as I wanted, after two surgeries and chemo and radiation and a new baby. I'm sorry we couldn't do all of the cool and fun things that I have "pinned" for us to do. I'm sorry you got cheated out of a normal Halloween and Christmas. I'm sorry for this whole year.

You have been amazing through all of this, and you are a wonder to me. A year that would have been enough change for you just with your sister arriving, when just navigating the world of being 2 is hard enough, you had to deal with all of mama's crap too.

I pray you will not remember much of this year, that you will remember the 95% good and forget the 5% bad that keeps me up at night, and I pray we will never have to relive it. You don't know how much I look forward to watching you grow, how much the thought of you developing into a little man more and more each day gives me reasons... reasons for so many things.

My little girl, who I don't even really know yet, yet have known forever. My little mini-me. You surely did not ask for this, to be subjected to tests and poking and prodding and toxic poisons before you were even born. But you, my amazing, stunning little beauty came through with flying colors. I think all of our doctors knew you would be fine, they were all pulling for both of us so very much. But when I was in the prep room before going to the operating room to have you, the one nurse came in, and she, not knowing us, started listing all of the myriad things that may be wrong with you, insinuating that I should expect them to immediately whisk you away, terrifying me since up until then everyone was completely optimistic that you would likely need no intervention. She reiterated that the entire NICU team would be in the delivery room, waiting to pounce on you. Well, she didn't know you did she? You came out screaming and bright and pink and BIG for 35 weeks and 5 days. And you needed no help at all, as I knew you wouldn't. Everyone in that room was so happy, for both of us. I am so privileged that you chose me, even with all you had to go through to get here. I am so very eager to witness who you become. And also to see you grow into all of that tulle I have for you. :) Again, even though I didn't know it, you were exactly what mama needed.

To both of you, thank you - thank you for choosing me to be your mother, thank you for your resiliency and forgiveness, thank you for letting me into your world, thank you for bringing amazement to my world. No matter what happens, no matter where life takes our little family, always always remember the inimitable words of Christopher Robin:

"Promise me that you will always remember: you are braver than you believe, stronger than you seem and smarter than you think."

How...

 

This is what I woke up to this morning. Late last night, we heard what I thought was someone dropping something heavy into the back of a pickup truck. What happened was a guy on the next street, who had many mental issues and was very much the oddball in the neighborhood - think a suburban unabomber - blew himself up (not known whether intentionally or accidentally) and left other unexploded pipe bombs around his house. All of my neighbors across the street were evacuated last night and police, fire, hazmat, FBI, and news trucks covered our neighborhood all day long. A police car was parked directly in front of my house, blocking the street, for the better part of today.

 

 

 

Then, after the kids went down for their nap, and right after our neighborhood drama had started to subside, I started seeing facebook posts about the Boston Marathon. Literally 15 minutes after I saw my brother post pictures of the marathon as he and his family sat watching on part of the course, I saw posts about the bombings. And watched the news with a growing sickening feeling all afternoon long. It was a horror movie on a loop.  

 

 

When women are pregnant, they are often asked 'How can you bring a child into this world, with all of this hate, madness, destruction, war, etc. etc?' It is a legitimate question I think, one that I have posited to myself on occasion. And occasions like today certainly validate the question, and give me pause.

 

 

 I obviously do not regret having my kids, but how do I protect them from things like this? And I have to realize, I don't, and I don't want to. I don't want a hair on their heads to ever be touched, but this crap, this madness - it's a part of this world. They will know it exists, but they will also know that abounding goodness exists, that some people are evil, but most people are amazing. I want them to know that while events like these will make their heart hurt, their heart will hurt from wonderful things also, from having too much love and pride and joy to hold. I want them to learn that while their eyes will see ugliness that they didn't know existed, their eyes will also make them gasp at a dazzlingly white snow covered forest, or an ocean that falls off the end of the earth, or the sky right after a rainstorm, or the first red leaf of fall, or their first look at their children.

 

 

I can bring kids into this world because within three hours after this horrific event, there were over 700 people offering rooms, sofas, futons, food, water, car rides, whatever, to strangers in need. I can bring kids into this world because there will always, always, be more people running towards chaos to help then people running away. I can bring kids into this world because runners ran right through the finish line and on toward the hospital to give blood. I can bring kids into this world because even before little girl was born, there were mamas lining up to feed her, to help people they didn't know. I can bring kids into this world because now I know, after this past year, that there is so much blinding beauty to behold, that there is more love than hate, that there is magic.

Watchers.

I believe that I have family watching over me. I always have. I've been the kid that wanted to be able to talk to and see ghosts for as long as I remember but alas - never happened. But I truly believe that all of the family that went before me, even those I never met, watch over me, and they are in charge of different things. One time in boot camp (don't get all Alyson Hannigan on me...I said boot camp, not band camp), I wore the wrong boots. In boot camp, that is not a fashion faux pas, that is a major infraction and I was terrified when I realized my mistake. I sent a request up to my cousin Johnny, who was a Marine killed in Vietnam when he was 18, 6 years before I was born, to please let the drill instructors not notice my boots and to let me be able to change them unnoticed. The DI's looked around to make sure we were all in our IBC boots, which I was not, I was in my jungle boots, and.... they didn't notice me. I was able to safely change my boots without having to go to the quarterdeck and I fully believe to this day that was Johnny's doing. I have many many watchers (I'm not quite sure most of the people in my family can be referred to as angels :) )

I started chemo on July 23rd, my uncle's birthday. I finished chemo today, February 13th, two days before my grandfather's birthday. These were the two men I was probably closest to for most of my formative years. My grandfather was my everything for a very long time. I idolized him until I grew a little bit and realized he was just a person with person faults and foibles, and lord knows I did not like some of his viewpoints and let him know it. We were the only two Aquarians in a family of Leos, so we had to stick together from early on. I can only imagine had he been able to meet my kids. He would have loved Jack but he would have been enamored of Amelia. My pop-pop died an exceedingly painfully slow death of stroke induced dementia - it was a long long ten years that I would never wish on anyone.

My uncle on the other hand, we could fight like cats and dogs. He was 18 when I was born and mentally probably a generous 16 so we sort of grew up together as a weird brother/sister kind of relationship. Oh, that man irritated me something fierce quite often but we shared many adventures and he loved me more than most, of that I am sure. He died of complications of type 1 diabetes that he had for over 40 years.

I know they have been watching over me and I pray that maybe since they helped the first chemo work so very well, they helped this one work as well too, and will help the coming radiation zap anything it is supposed to. I pray that even though I know they would be so happy to have me, they know that I am so very needed down here for these two small children. I pray that my Aunt Elaine, who I loved so much and who was so fearless in her younger days knows how much I have to do and want to do and and sends all of her goodness down into this medicine to make it work, and sends me the strength that she had in her painful older days. I pray my cousin DeeDee, who I know so desperately wanted to see her own 5 kids grow up, knows very well that 38 years, while generous compared to some, is not nearly enough time, as it wasn't for her, and sends her faith and good thoughts to work down here. I know that they, and all the others up there, know that I have many many more promises to keep, and so many many more miles to go before I sleep.