Tuesday, September 27, 2011

How to Survive Being a Cancer Mom...

Okay, so I  know it's been forever, but there has been some crazy stuff going on over here...there was the Disneyland trip, which, as you know if you have been following my facebook page and the zillions of pictures and videos I posted while we were there, was AMAZING!!! Then there was the few days we spent at my sister's in Lancaster while they re-piped our house...then there was the four extra days in the back while they finished re-piping the house, then more impromptu Disneyland trips to finish off the summer (Annual Passes are awesome! :) If you can, you should totally get one!) and Sarah's counts dropped, so now we are stuck indoors, but to say the least, this little monkey has made it interesting!

While I was at said sister's house crashing her little love nest and waiting for the ancient pipes to be replaced, my ancient phone (it had already been OVER two years!) decided that it also needed to be replaced, and I had a little extra cash left over from the money we had saved for Disneyland, so with my husband's permission, of course, I bought myself a brand new, top of the line and much deserved new toy: The LG Revolution 4G, which promptly spurred jealousy in my husband so that he had to run out and buy the Samsung Galaxy Tab so as  not to be outdone...boys...

So, anyway, I am loving my new toy...I can manage my entire schedule, calendar, reminders, internet, email, facebook, apps, I even have virtual post-its that hang out on my home screen, right underneath my Robert Pattinson wallpaper...(Immature, I know, but sue me, he's hot!) One of these post-its has been hanging out there since the day after I got the phone, about a month ago...it says "Write blog"...I'm kind of sick of looking at it, so I figured that I'd better do what it says so that it will go away and leave me alone, so here it is...

The blog that I wanted to write, the blog that has been haunting me with its non-existence for well nigh a month now, was a list of what I have learned from this whole experience of being a "cancer mom" thus far. Obviously there is much to learn, much that I continue to learn every day, but I kind of just wanted to document a few things that I have learned thus far through this whole ordeal, for other moms going through this in the early stages that may benefit from what I have already been through, and for moms who thankfully will never have to endure this, and for everyone else so that they might get a taste of what this has been like thus far. Everyone always says to me, "I don't know how you do it. I don't know how you are strong enough to survive this." So here are some answers to those questions, at least the ones that I have been able to put my finger on:

1. Journaling
I started a journal when Sarah was born, because I wanted to preserve her exactly as she was, I wanted to immortalize at least a part of her, I wanted to record my thoughts and my feelings at these exact moments as she was growing up, so that she would have a record of it, of just how much I adore her, in my own words. It was a verbose baby book of sorts, it has some random pictures stuck in, some doodles that Sarah did herself, a list of her first words, and her little one-liners, a record of her growing up. Once she got sick, I debated whether or not I should continue. Up until she had been diagnosed at 20 months, the journal was such a happy, joyful place for my thoughts and feelings. There was no sadness, only my complete elation and thankfulness for the gift of being her mother. Then her diagnosis came, and I decided to continue, because the medicines and the IV drips, the hospital stays and the steroid fits, they had all become just as much a part of her, a part of me, a part of her history as her first word and her first step. It was all just as important, and just as beautiful. It is all a testament to her courage and her strength. So I write it all down, as much as I can, as much as I have time for. It is a great comfort and relief to me when I feel alone or do not wish to burden my loved ones with my histrionics, and it may serve as an inspiration to her later on when she feels defeated and downtrodden. At the very least, it may be fuel for some damn good guilt trips! lol "The hell you're not going to college, young lady, do you have any idea what I've been through with you???"

2. Be prepared

In the beginning, no one told me what to expect. I mean, they did, but it's kind of like being new to anything: the only way you truly learn is through experience, trial and error...In the early days, I was not used to Sarah's labs being anything but normal, and I also was not used to her doctors being so far away from our house, so the first time I took her in for labs, I got dressed in some jeans, and my favorite Tori Amos t-shirt, I brought one change of clothes in the small diaper bag, I had a small snack in the diaper bag, like two diapers, and only a small supply of baby wipes. I was, after all, only taking Sarah in for a lab appointment, which takes 20 minutes to an hour depending on how busy the clinic is and whether or not they are running behind and/or short-staffed...so I took her in, got the labs done, and was happily on my way home when I get a phone call 20 minutes into my 40 minute car ride home that Sarah needs blood, and that I am to take her back in two hours to the OPI for a transfusion. So I turn around, head back toward the hospital, and figure, okay, it's only two hours that we have to kill, no biggie...but I was unused to having a baby with cancer out and about....what was I supposed to do with her for two hours without exposing her to other people and their germs? So I took her through the drive through, got us some lunch, and sat in the backseat next to her car seat so we could eat lunch together and watch a movie on the dvd player. It took about two seconds before I spilled ranch sauce all over my favorite t-shirt and my jeans, then the baby spilled water on her outfit, so I changed her, then she wet her back up outfit, so I have no diapers, no clothes, no food, and I still have to sit through a four hour infusion with dirty clothes on...NEVER AGAIN!!! Now, I pack for a trip to OPI like I'm never coming home! Extra everything, snacks, water, food for me (they only feed her), entertainment for me, dvds, books, toys, pillows, blankets, I am almost positive we look homeless! But we are comfortable, and I have never again had to sit through another uncomfortable infusion like that first one.

3. Lean on other moms

I know sometimes, especially when a mom is going through such a horrific ordeal, it becomes tempting to become something of a martyr, to adopt an "I can do it myself" attitude, but the truth is, the support of other moms, especially other cancer moms, will prove INVALUABLE in getting a cancer mom through this difficult time. A cancer mom is put in a very unique and difficult position when it comes to her child. You never quite know what is normal, what is the drugs talking, and what is just idiosyncratic to your kid. It helps to get input from other moms, especially moms in the same position, because it makes you feel like you're not alone. Being a cancer mom can be very lonely at times. Everyone else has their lives to lead, and the band marches on. It's not that they don't care, or that they don't get it, but when you break down, the people you expected be there aren't always dependable. It pays to make new friends, and to lean on each other when you need comforting. An ordeal like this shows you who your friends truly are, and as trite as that sounds, it's true. I have two very good friends who were there from beginning to end, and some wonderful new friends who have been there from the minute they first entered my life up until now, and then there were friends and even some family members that not only were not supportive, but went out of their way to make my life hell. If it wasn't for my very dear loved ones, I could not have made it through this far...

4. Take in the positive, flush out the negative...

I know it sounds very "zen" to see everything as a learning experience, and to try to see the silver lining in everything, and to be perfectly honest, there are days going through this with Sarah that even I think that is complete bullshit, but I try to live my life by this mantra as best as I can. I have to...no one has time for me to break down, least of all Sarah...but even in this, there is something here, a lesson that must be learned, and if you are going to proceed through this with your sanity intact, you have to learn to cull what is good, and throw out the rest. This is especially true of "words of wisdom". Since Sarah was diagnosed, people offer me platitudes and adages. I think they don't know what else to say, and that's fine. They're doing the best they can, they are trying to offer support, and I appreciate that for what it is. Then there are the people who I honestly believe are physically unable to hear the horrific shit that spews forth from their lips. My personal favorite came from one of my own: my stepmother. She says (behind my back, of course...I don't even want to think about what I would do or how "zen" I would be if she ever said this to my face) that Sarah's cancer is my fault, my punishment from God for not getting married "the right way" (i.e. in a church, by a priest or reverend or other such holy person)and for marrying someone who is not "from the church"...apparently, this is also why I lost the three babies that preceeded Sarah, according to her. Even as I write this, the blood is rising in my veins and I am ready to do her some physical injury. Of course, I have not and I will not. I have not even confronted her about the fact that I know she said these horrific things about my precious baby, about me. The way i see it, her ignorance is her problem. We all have to meet our maker someday, and the stupid shit she lets come out of her mouth is up to her to explain to God, not me. I have never seen Sarah as anything but a blessing, and I still don't. She is beautiful, she is smart, she is hilarious. Everything I ever wanted in a little girl, I got in spades, and so much more. I thank God for her every day. She is my gift, she is my hero, my reward for my faith...a punishment? NEVER...How could I possibly suffer with so beautiful a punishment? I take it for what it is: the ignorance of a cantankerous and overzealous woman who is so miserable she has to make everyone else miserable, too. NOT MY PROBLEM. I have my own. Do I have negative thoughts sometimes? Of course! I am just coming off a week-long funk where I let my thoughts get the better of me, but I am only human. I talked to some trusted friends, I moved on as best as I could.

5. Do not judge the cancer mom

Having a kid with cancer is a little different than raising a healthy child. Like I said before, it's hard to gauge what is normal for their developmental stage, what is the chemo talking, and what is just your kid. That being said, there are things that us cancer moms do that may look crazy to the rest of the world. DO NOT JUDGE THE CANCER MOM! At the beginning, there was this mom in the clinic who was allowing her daughter to eat chips for breakfast. And yes, I will shamefully admit, I judged her. I looked at her like she had completely given up control to her kid. Fast Forward two years later, to where my steroid-ridden daughter is eating tuna and fritos for breakfast, and only because I refused to give her fritos without something healthy to go along with it. I have given up the concept of "breakfast food". As long as it's food and it's not going to give her a stomach ache, she can have it. So yes, my daughter eats rice for breakfast, and eggs for dinner...today, coming down from the steroids, she ate 6, yes I said SIX hard boiled eggs! I half expected to see her doing bench presses in the corner! But hey, it's not fritos! Do NOT judge the cancer mom! :)

6. Be willing to let go...

This is the hardest one, one that I am still struggling with...Lord knows, I am NO ONE'S idea of a Type A personality, but in this world I've been thrust into where I control almost nothing, I have become obsessed with controlling the things I can. I want to do everything, I do not want to delegate, and it leaves me frazzled and tired and half-crazed. Learn to delegate. Learn to let go...I believe that the reason, the main reason for the funk I've been in is because I have had to face some very hard truths and let go of some very heartfelt dreams. This was NO ONE'S vision of what my life, what Sarah's life was supposed to be like. At nearly four, she was supposed to be in preschool. I was supposed to be at work, getting phone calls from her teacher saying she said something hilarious yet inappropriate because Daddy sometimes forgets that she's only three and has not yet learned to IGNORE HIM and not repeat the wonderful jewels that spill from his lips sometimes...She was supposed to have long curly hair spilling down her back...a lot of things were supposed to happen, but they won't. This is the hand that we got dealt, and it's time to let the old dream go, find a new dream. The dream now is to see Sarah not only survive, but prosper. To see her at 10, at 16, at 20. To watch her get married and build a life for herself. It remains to be seen if children will be a possibility for her, and that thought makes me sad because I know all too well what that pain is like. But she will be here to endure it. Things will be as they should be. I cannot control everything, so I need to learn to accept things as they happen, and enjoy every moment for what it is, because every moment that I get to spend with her, every breath that she takes is a precious gift, not to be taken for granted.

Thank you all for taking the time to read all of my ramblings and nonsense...it ran longer than I thought it would, but it felt good to write, so that's something...I can check number 1 off the list now! :)

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