Here.

 

Today I was sending out some invitations for my son's third birthday party -THIRD birthday! And then I started thinking how it was last year around his birthday when I started noticing the mass, and assumed it was hormonal changes from the pregnancy, and how a few weeks after that - well, you know. Amazing. Even though I realize that May will be a loooooong month of radiation, in all actuality it will probably go by before I know it. Soon my boy will be three, and I will look back on the past year with so many conflicting emotions. I have gone through hell and back and by the grace of God, maybe won't have to go there again. Through the worst crap of my life, I've watched my baby boy grow up before my eyes, and had another baby on top of that. I am here. Here to celebrate another year that my boy is on this earth, making his mark, finding his way, learning who he is and what life is. Here to celebrate with him, here for him to learn who I am and what I want for him, here to try to convey even one ounce of the weight of my love for him, here to be his mama.

You might be a redneck...

If your neck is actually red because you are apparently radiosensitive and start turning red after the third treatment! Go me! I asked my tech on Tuesday, "umm, so is it normal to start turning red already?" and he laughed and said, "nooo, we usually don't see skin changes until after week two (ten treatments). But that means you are radiosenstitive so this should all be working really really well on you!" Fabulous! I'll have no skin left, but awesome! Ugh.

6 Months.

Realized I forgot to post a picture of my beautiful little outcome of this whole mess...six whole months old! Where does the time go? (Although it does seem to go simultaneously quicker and much slower - at 4 in the morning when she won't go back to sleep and wants to party)

My big little tiny girl...

Finally

I am finally starting radiation tomorrow...not that I want to. I think if I had trepidation about any part of this process, this would be what concerned me the most. But, we do what we must, and I must get irradiated like a crispy critter. So, 33 business days from tomorrow I shall be done with this part of the process and I will dance a jig. I didn't get as many tattoos as I thought I was going to get, and they are in far different places than I expected, but I did get drawn on today like a battle plan gone awry. I'm waiting for someone tomorrow to tell me I have a little something on my neck, sort of like people have told me I have a little dirt on my forehead when I have ashes on Ash Wednesday.

Off to an early morning of zappy zaps.

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.

Blue skies....

My goodness, the sky was just an absolutely brilliant blue today. Believe me, I love a beautiful slate grey, threatening, cloudy sky, but really - who can argue with this?

USS Iowa

I mean, that's textbook California blue right there...

San Pedro harbor

 

 

The harbor water even looks amazing....

 

Can't argue with this handsome face, although he's learning to argue with me quite well as he speeds towards three...

 

Actually not terrible but as my hair - and subsequently my grey - grows out I need to get some henna going stat!






 

Overall, an awesome, fun day with the family visiting the USS Iowa. Tomorrow I am off to get mapped, which means I will be having another CT scan to determine where the radiation beams will go and will be tattooed in those spots. Not the next tattoo I was looking forward to, but nonetheless...

What we need.

(ocregister.com)
 

God gives us what we need, not what we want.

I never wanted a girl. To paraphrase a song I've never heard - never, ever, ever, ever, never, ever was I having a girl. Ever since I myself was small, or whenever I first started entertaining the juvenile desire to be a mother, I was adamant that I wanted boys. ONLY. Maybe it was because I grew up in a female-only household and was pretty much sick of the raging estrogen and resultant lunacy, maybe it was because most of the kids I grew up with, including the cousins I was closest to, were boys, maybe it was because I knew what shits girls could be and didn't ever want to have to deal with that.

As time went on, I amended my wish to be having a boy first. I desperately wanted a boy first, I think because I had harbored a unbridled desire from early childhood for an older brother (which when I was 35 I found out I actually had! and a younger sister! But that is an entirely different chapter in this book. Feel free to pre-order now.) Lo and behold Jack showed up as a VERY pronounced boy at my 20 week ultrasound and I was ecstatic. I remember driving back to work from the US and texting my friend "I have a penis in me!!!!" And I was blessed with a giant, beautiful, smart, funny, and extremely energetic little boy who tests me every day, who forces me to face my faults, who makes me desperately want to be a better mother, who made me a mama, who truly is my heart.

When we attempted to add number two to the family, my husband was already certain we would have a girl. In fact, before Jack, he was certain we would have a boy, then a girl, no matter what happened, what I wanted, whatever. That was it, that was the way it was to be. So, during my 13 week US, the Dr said "It's pretty obvious what it is if you want to know" which I automatically took to mean a boy, I mean, pretty obvious, right? He said, "Yep, pretty obvious it's a girl." The 20 week US confirmed it, although the tech was pretty pissed actually when we said, oh yeah, we know it's a girl. She was a little bent that her surprise factor was usurped. Oh well, the trials we live with. Obviously, you know what happens next - mama gets diagnosed with cancer and to be perfectly honest, as I've mentioned before, the whole "whoohoo, we're having a baby" excitement sort of fell by the wayside. We even, for a few days, did not know if we would be able to keep her.

But then the ground started to solidify again, and I started to breath, and she came. And all of a sudden, this not-quite-tomboy-but never-a-girly-girl started buying ruffly, frilly clothes in sizes that she won't wear for many many months, and that I desperately hunger to see her in. This little girl, who tenously climbed a mountain with me before she was even born, gave me more than she will ever ever know, she gave me another reason to believe. This little girl, who I only met five + months ago, gave me tangible visions of a future, of manis and pedis and dancing and tutus and glitter. This little girl, with her cornflower blue eyes a thread connecting her to her ancestors, a mirror image of me otherwise, puts her powder-soft hands on my face and twists my heart. I need this little girl to know that even though I didn't know that I wanted a girl, she was exactly what I needed, at exactly the right time.

A Happy Easter!

 

 

No matter what you believe or don't believe, I wish you a happy happy Easter, a time of new beginnings, fresh starts, resurrected lives.

 

 

And a happy Easter from this little teething beauty to you and yours.

Semantics.

Well, since I have no CT scan results to post, I occupy my brain with a different topic. Finally got my gumption up to call the doctor today to ask for the results and the girl who answered the phone said, okay I'll send a note to Dr. K, but he's not in until Tuesday so he won't be able to give you these results until then. I said oh, has he been out, and she said, yes, he's been out all week...ooookkaay then, thanks.

On to "other topic" - the vernacular of cancer. I am not comfortable with most of the vernacular of this lovely disease and I find myself cringing more and more when I hear certain things. I'm not sure why cancer has such a separate language. Maybe because it's one of the few modern diseases that, while utterly terrifying and devastating and deadly,  actually can be "cured" in many cases. I don't know. But these words that are used - fighter, warrior, survivor some of the most common - they make me uncomfortable and here is why.

I've been around chronic disease all of my life. My uncle, mentioned a few posts ago, developed Type 1 diabetes when he was 9, so it was always around me. I saw the shots every day, I saw insulin reactions, it was all commonplace. He didn't develop many serious complications until I was in my teens but I was always aware of illness. My college ex-boyfriend was also diabetic, what is termed a "brittle diabetic", meaning his diabetes was very difficult to control. I saw the inside of a hospital almost as much as I've seen in the past 9 months for myself. As much as they went through, the pain, the inconvenience, the devastation, they were never called "fighters", they were never "battling" diabetes, no one ever told them "kick diabetes' ass" - they just had it. And they weren't called survivors for every year they stayed alive. I had a cousin who was bedridden as a result of MS from before I was born until he died when I was around 11. He didn't battle MS, he just had it. My grandfather battled on Iwo Jima, but he didn't battle or fight the multiple strokes and resulting dementia that he suffered for ten years. People with ALS or cystic fibrosis or lupus, the list goes on and on, these people are never called fighters - they are always just referred to as having their illness.

Two people  have used the word survivor with me now, one called me fellow survivor and one said I had a great survivor story. The thing is, to me, I'm not a survivor. What denotes a survivor? I haven't been cleared yet, I don't know what's in me or not (see first paragraph), I haven't even finished treatment. When I was at the Komen walk last year, they had the "survivor's tent". I stood there and wondered what the hell does that mean? Do you have to have a Dr's note saying you are cancer-free to be let in the tent? Do you have to be in remission for a certain amount of years? If you are in treatment, you aren't good enough to be let in the tent? If you relapse, are your tent privileges revoked?

When I first told people I had cancer, many of them told me I would "kick cancer's ass". (please, if you were one of them, I'm not singling you out, I'm just giving you my perspective, and my perspective has evolved as I've lived in this world). To me, and I know it's not meant to, but it sort of puts the onus on me right there - I need to battle this, fight this, kick its ass! And it's not just me, that's a common phrase used - I have a high school friend going through her second round of radiation now for a very uncommon type of nasal cancer - some of the comment's left for her by her friends tell her to kick cancer's ass. If this gets one of us, did we not kick ass hard enough? Were we not bad ass enough? Another friend from high school passed away almost eight years ago now from an exceedingly rare type of pulmonary sarcoma - she was an awesome person, very spunky, very bad ass - no matter how much cancer ass she kicked, it was likely not going to be enough. She didn't lose her battle, she didn't not fight hard enough, it just happened. There was nothing she personally could do that she didn't do.

I'm not even a fighter. I'm just doing the best I can with what I have, I'm doing the treatment that most everyone else does. Luckily my tumors responded to at least the A/C chemo. Did I choose to do the treatment where others may not have? Sure, but I don't know their situation and I have no right to say someone gave up or didn't fight because they chose not do do a certain treatment.  The whole warrior lingo, the battling, I just don't like it. If someone doesn't make it does that imply they didn't fight hard enough? They didn't "kick cancer's ass" hard enough? They lost a battle? I know it's not meant with anything but the best intentions and I don't begrudge whatever words people want to use to make themselves feel better, but for me, these words leave a bad taste in my mouth.

There are no do-overs

I was a good student. I hated high school with a passion, but I loved learning. College was the best time of my life. Okay granted, it wasn't all about the learning that made it so great, but it was a big part of it. I was the weird kid who liked standardized tests, all through school, and going to Catholic school, we've had standardized tests every year since I can remember. Sure, I hated, absolutely hated, getting tests back. My low self-esteem and I were always convinced that we must have failed, even though that was rarely the case (let's just ignore my whole pre-cal year in high school and most of accounting in business school - thanks). For normal tests, you studied - at home, in school, with groups, alone. And even for big tests, like the SAT or some similar test, you had many a practice run beforehand. We practiced for months, studied, did the PSAT, etc etc - so could prepare as best as you did or didn't see fit.

However, I have, in the past 8 months, entered into a whole new world of tests - ones I can't study for, or practice for, or prepare for. And ones I can't do over.

In preparation for the big entrance to the world of radiation, I have another CT scan scheduled next week. CT scans, if I had perhaps a broken bone, or maybe an ovarian cyst, or even a kidney stone (which I have had and let me tell you, I know the pain is no joke) would represent a simple diagnostic tool. But when you have cancer, CT scans fucking suck. Because you don't know what is or isn't there until you take the test. Because you cannot change what the machine sees, no matter how well you prepare. Because what it sees can determine - let's be honest - whether you live or die. Because if there is something there I don't want to see - if I "fail" the test, I don't get to beg the teacher for a second chance, I don't get to explain that thedogatemyhomeworkIwassickIwasworkinglatelastnightmayIpleasetakethetestreadthebookdothepaperoveragain. Because there are no do-overs.