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.

Never going to be...

It's reiterated over and over again that after this crap that you will have to figure out a "new normal", you will never be the person you were again...and that's true. So very very true. I will never again be who I was prior to approximately 2 pm on July 13, 2012. But then, isn't that true for everyone, at any life-changing juncture? I will also never be the girl I was in high school again, I will never be the girl I was in college, I will never be the person I was before I got married. I will never be the person I was before I had one child, nor will I be the person I was before I had two children. And that's okay. So much has changed and I'm okay with it for the most part.

What they don't tell you about this "new normal'? The your new normal will involve days of being terrified because your back hurts, even though your back has hurt in different places for the last 20 years. What they don't tell you is that even though both kids and your husband and you have been passing around some sort of cold/crud/allergy/sucky thing for a week now, the cough you have, that they all have, keeps you up at night wondering if it's something else. What they don't tell you is that you will stumble across someone's prayer request on facebook, read the story and have it be almost identical to yours - age, cancer while pregnant, left side, may instead of july 2012, triple negative- yet she is at home in hospice right now after stopping treatments last week because they weren't working for the mets in her brain, and you will spend your afternoon in uncontrollable tears, silently raging at God on Ash Wednesday. That is the new normal that I am not okay with.



 

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.

Day 7 - A failure that you have had - And Day 8 - A Success

Well, obviously a failure I had was keeping up on this every day now wasn't it?

Oh goodness, who likes to talk about failures that they have had, even though they are usually where we learn our biggest lessons? I wish I would have had one of those grand failures that turn brilliant successes - like flubber or something. But alas, I have not - I think I am mostly composed of everyday failures that everyone beats themselves up about - the failures of a mother, a wife, a friend, a daughter...a human. Actually, one failure that I have had - I wish I would have allowed myself to fail more. When I was little, on top of being an extremely shy introvert...I was also terribly afraid of failing. Some things came so easy to me, primarily school and grades, etc., that if I wasn't completely certain that I could win something, or knew the answer, or could master it, I wouldn't try it. I truly believe that I missed out on many opportunities, or at least growth, from that, and that in itself is the biggest failure. As I've gotten older, I have had to force myself to try things when I am unsure of the outcome, and I still struggle with it, but I'm thankful that I recognize it and am trying to change.


A success I have had - I think one of the big successes I had in the past year was moving past my own comfort zone to put my personal story out there. If I could get one woman to avoid going through what I did by knowing the different signs of what to look for, then that is a success. If I got one mom to donate her excess milk instead of throwing it away, that was a great success to me. If I helped one of the pregnant moms with cancer that I have come across in the past year to navigate this cesspool of crap, then that was a great success. 

Day 6 - My Children

Raising children is some serious shit. It's hard, difficult work that tests your patience in ways you never knew, like working muscles you never knew you had during that first Pilates class. I am still amazed that a tiny little person (in Jack's case, not so tiny, he's already more than half as tall as I am) can create ways to push your buttons in ways even your husband hasn't figured out yet...boggles my mind. Adding a serious, life-threatening illness to the pot is like adding some sriracha to a bowl of cayenne pepper soup - it just adds fuel to an already heated situation, and I am in no way proud to say that I have taken my emotions out on them at times over this past year - I've snapped and yelled at times much louder and more often than I should have. I pray and pray that some of those memories get lost in the ether.

 

 

But beyond the frustrations and madness of raising children is truly an awe-inspiring space, a place where time both stops and careens forward. I know other parents see their children growing up and want desperately to push the pause button...but I, warranted or not, feel like I'm sprinting, holding their hands and dragging them along, because I want to see everything that they do, I want to see all of the years and the events and growing and the stumbling and the successes and the failures. I want to see and touch and breath it all and I feel like I have to do IT RIGHT NOW. But I can't, so I take every day, and though I may lose it sometimes and I will most definitely never be the perfect mama, I dole out copious amounts of hugs and kisses, and breathe in these beings who for whatever reason were crazy enough to choose me to pass through.

 



A fall birthday...

This is a long time coming due to a missing, then non-working camera cable...but here we go finally!

 

Baby girl's first birthday party - obviously having a baby to celebrate in the month of October is going to be wonderful...for me at least, maybe not for her eventually. So I had to have a fall themed party - what else? And it was actually pretty stress free - I mean, the house is already decorated for fall/halloween, so I just had to add some things here and there...

 

Easy decoration - tissue paper pom poms

A book for guests to sign

The welcome wagon...

 

Caramel apple party favors - easy and delicious

More easy tissue paper pom poms...I think they are a little classier than balloons right?

 

Crafts to keep Jack and his friends occupied for a bit

The birthday girl...still deciding that she could crawl faster than walk at that point...although that has started to change this past week.

 

 

Marshmellow fondant leaves - this recipe is soooo easy and doesn't taste that bad!

 

Birthday girl could not understand why everyone was singing to and staring at her at that point

Hmmm, this feels interesting...

But I don't think I will actually taste it for a while...

  

The boys are over celebrating a one year old girl....

Family shot...Happy first birthday to my baby girl - I eagerly look forward to many more with you.

 

One year ago...

 

A year ago, a large team of NICU doctors stood in a delivery room with nothing to do, amazed that this month-early girl needed not one iota of help and was in fact healthier and bigger then many term babies. To my little chemo-sabe, my little buggy boodles, you gave me more strength than you will ever ever know and I look forward to many many more birthdays with you. Happy happy first birthday my girl.

 

 

 

 

I wish for you so many things I cannot even articulate them. I wish for you the world. I wish for you joy and pain and laughter and tears. I want to see you dance and sing and grow and learn. I want to hug you and kiss you a billion more times. I wish to see you follow your big brother to school. I wish to see you do wonderful things and get into trouble. I long to see those amazing blue eyes ingest everything they can. My big girl, I wish to see you grow up.

Thank you for this year.

Decorations...

"Delicious autumn! My very soul is wedded to it, and if I were a bird I would fly about the earth seeking the successive autumns." - George Eliot
 

I was getting out my Halloween decorations today and realized I hadn't seen my things in TWO years, not just one. That amazed me, and saddened me, and at the same time filled me with joy because I get to see them again and I was overjoyed - I'm not kidding, I adore my Halloween decorations. I love Halloween and fall - I LOVE them. I stopped and thought about where I was last year right now and also realized that last year, today, was my last A/C chemo. I was heavily pregnant and bald, too big and tired to even attempt decorating or celebrating my season, and waiting - worried - about what is now this teething, extremely loud, hilarious, beautiful and healthy little monster - the one who has smile at times that is simultaneously hysterical and the epitome of pure bliss.

 

 

So as I went through my multitude of Halloween boxes in the garage and found forgotten treasures, I was able to look back at the past year and remember where I was - which is a feat considering my short term memory is still shot - and see how far we have all come, and breathe it all in, and smile like my girl.

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.

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.