Good Lord!!!
It has been "one of those days" from the moment we woke up this morning!
But since I have already filled y'all in on the earlier part of our day, let me fill you in on the rest of today's suck-fest, or as I like to call it, the Broviac Hokey Pokey!
Sarah's broviac just came out at the end of July (scroll back to July's blogs for a detailed account of how much that sucked), and then she had about a month and a half before she relapsed just recently. It wasn't until yesterday that the doc informed me that the port by itself wasn't going to cut it with the treatment they had in mind, they needed more access. So we had a choice: Peripheral IV (your standard, run of the mill, ol' fashioned IV that everyone and their mother gets in their hand or other extremity), which there was no way in hell with Miss Wiggle Pants over here. Next; PICC line, (Peripheral Inserted Central Catheter, similar to the broviac in that it's outside the body, and runs to a central line, but it's inserted peripherally; sort of like if a Peripheral IV and a Broviac had a baby! :) ) which usually gets inserted into the forearm or the crook of an elbow, and which my active girl on a good day would pull out in about 2 seconds. Yeah, not gonna happen. So we opted for the Broviac. Hence, the hokey pokey, cuz it just came out, and it's going back in. Get it? Yeah, I know, but I'm tired, what were you expecting, Shakespeare?
So, yeah...the whole SSU experience..let's just say that it was less than stellar today.
Usually, the policy on oncology kids is that they pick them up no more than 20 minutes before procedure time, so that they aren't waiting around, catching God knows what in the SSU (Short Stay Unit, where they perform quick surgical procedures), where it is about 50 below 0 at all times. I swear, there was a freaking polar bear freezing his ass off down there. I know germs don't like cold, but I could see my breath, people, turn it up a notch, wouldja?
So, true to form, procedure is at 2, they pick us up at 1:30. Awesome-sauce Cancer mom that I am, I am ready. Reusable bag full of snacks and stuff to do, water AND Gatorade (that's right, that's how I roll!), etc. I'm prepared and ready. Until Sarah poops the second Kara picks her up. Okay. Still not a problem. I grab a diaper, some wipes, and vow to change her when we get there.
We walk down there together, the transport guy, Kara and I, in semi-silence, and when we get to the SSU, Sarah's chart is waiting. Cool. They're ready. We walk in, I say wassup to the penguin in the corner (is it REALLY necessary to keep it so cold down there?) and proceed to answer the usual questions. She is allergic to Vankomycin, Pentamidine, Dapsone, Paper Tape and Emla cream, but the creamy part, not the lidocaine. Yes, I carried her to full term. No, she doesn't have asthma or diabetes. If it weren't for this blasted cancer, she'd be a healthy girl! Kara makes it a point to explain to the nurse that she is NOT to remove the port, which is accessed and hooked up to IV fluids. She said this in front of me, several times.They assure me the doctor and the anesthesiologist will be in shortly, which it seems like they are, until I look at the clock and realize that it's been AN HOUR AND A HALF since they took us down there!
Procedure was slated for 2, they don't take her in until almost 4. When the doctor comes to fill me in afterward, he tells me they took out the port so that he could have full access to the chest. My first thought is, Kara is going to be soooo pissed! But they already did it, so what can I do?
They take me back into the recovery room after about fifteen minutes, and Sarah is still asleep. The nurse tells me she started to spike a little fever, so she gave her Tylenol. That's all she tells me. I notice on my own that Sarah has a peripheral IV in her hand. Which she hates, and keeps screaming at the nurse to take out. Strike 2.
THEN, the nurse we had was forced to take a lunch break, so someone else takes over, and the nurse that's leaving tells the new nurse that she gave Sarah a Tylenol SUPPOSITORY. Now, let's pause for a second. I know it's been a long three years, but I'm pretty sure THING 1 they told me about cancer patients is that you don't ever, EVER do anything rectally because it can cause tearing, and if their platelets are low, they can bleed out that way and you would never even notice! So, on hearing that, I am slightly pissed, but again, they already did it, so it would do me no good to pimp slap a nurse in the middle of the recovery room for failing to read the extra-thick, dog-eared chart that is sitting at the end of her bed for all and sundry to read if they aren't too lazy to pull back the front cover which would probably conveniently disintegrate in their eager little hands the second they attempted it, for all it's so worn. But I am trying to surround my daughter with positive energy, so I let it go. It's over.
Sarah wakes up, notices the IV in her hand, and starts yelling at the nurse to take it out, so they call up to the OICU and speak to Kara, to see if they have orders to take out the PIV that they had no business placing in the first place. Kara tells them to take it out, so they do. They report to her that they gave her 625mg of Tylenol, FAIL TO FUCKING MENTION that they gave it RECTALLY, when Kara tells them that her dosage is more in the 400 range. The nurse double checks, chuckles as if to say, "ooops!" and says the other nurse charted it wrong, that it was 325 mg. I am losing my patience with this Keystone Cops bullshit, but I manage not to go batshit insane in the recovery room. I say nothing, get back to our room. Kara asks if they left the port accessed. I tell her they did not. She gives me this "Are you shitting me?" look, which I return with a look of sympathy. She tells me I have a choice between her accessing it with cold spray, or Melissa, the night nurse (another of Sarah's faves) accessing it with the LMX cream. I ask Sarah, and as she loves Kara but hates the cold spray, and both loves Melissa and the LMX cream, she opts for letting Melissa do it.
Kara goes to hook up her tubes, inspects the ends, then drops them, throwing her head back in an expression that can only be filed under "WTF!" I ask her what's wrong, she says they didn't cap the ends. Being a cancer mom who pays attention, I know exactly what this means, and I shake my head. This means that since they didn't cap the ends, her entire tubing system has been exposed to germs from here to the SSU, contaminating everything, so she now has to change out all of the tubes that were just changed last night. Poor Kara! I see a Starbucks card in her near future...
Mike and Azrael were waiting when we got back, which made Sarah happy, so that was something at least. She is now sleeping soundly, so soundly that her respiratory rate is concerning me, but I believe that I will trust that the machine will wake me if it drops too low and get some much needed rest. I am exhausted, and it's only been three days! How did I ever do this for three years straight?
Tomorrow is another day, and that's just the point, isn't it? As much as today sucked, it was another day with my daughter, and I will take a solid month, year, hell, a century of days like today as opposed to not having her at all.
Friday, August 31, 2012
Today sucks...
I'm sorry, I haven't had enough sleep to have more imagination than that today. Sarah went to bed late because the blood and platelets they topped her up with had her bouncing off the walls. Then eye drops at 3, then she wakes up at 8 crying because her stomach hurts, badly. She spiked another fever, tylenol did nothing, and the fever went even higher to 103.5! Sarah cries harder because she can't open her eyes, which Kara says is probably conjunctivitis because of the Ara-C, despite our torturing of this child three times a day with the dreaded eye drops! Sarah cries for two straight hours, and nothing I do can comfort her. I feel lost and alone and helpless. My husband asks if I want anything before he makes an appearance. What I want is for him to be here, I tell him. What I want is for her to be comfortable at least, if she can't be pain free. I want for her to stop crying, for her to stop hurting. I want for this fucking cancer to go away and leave us the fuck alone. That's what I want. But I don't say this aloud. I don't have the strength to argue today. Sarah begins to whimper again and I hang up the phone.
Nurse Kara pushes pain meds, which alleviates her pain at least to the point where she stops crying, thank Christ! She has to wait until 2 for the procedure to put her broviac back in. At least she had about a month of respite, and her one concern is that she won't be able to swim now. Her brief interlude with a normal childhood is over. All she wants is to be a normal kid, do what normal kids do. It should be the God-given right of every child, but this is her life. At this point, she has been fighting longer than she hasn't. Three long years.
I keep thinking about that, to the point where I'm almost sick of thinking about it. She had one perfect year. For her first year of life, Sarah was perfect! Perfectly healthy, perfectly strong. She was beautiful and vivacious, funny and sweet, SMART, everything a baby should be. Then at 13 months she had that seizure, and it was all downhill from there. I remember thinking during that perfect year that I was entirely content with my life in that moment. I had a husband who loved me, my stepchildren were improving and moving towards happiness in their own right, or so I thought. I finally got to hold my own child in my arms after three miscarriages, and she was absolutely perfect. I had a job that I loved, a career on the rise. My life wasn't exactly perfect, no one's is, but my child was, and I was content. Maybe I shouldn't have been so happy.
I have lost everything but my child, and she is struggling to live at the moment. I have never once asked myself why. God knows why, and that's all I need to know. I keep putting one foot in front of the other, I trust in the plan. I am a good little girl as always and do exactly what I know I'm supposed to do. But inwardly, I fight. I rage against the dying of the light. I am thankful for those who are with me in spirit, I am secretly resentful of those who aren't. If you can't make someone a priority when they're dying, when can you? I am disillusioned with it all. I can't help the way I feel, but I don't want to waste energy on things that don't matter, either. My daughter needs me, and I am essentially it. I am the one that's here, day in and day out. I don't have time to waste on bitterness or resentment.
Sarah cries and says that this isn't fair, that this is so much harder than she thought it was going to be. I am not paraphrasing. That is exactly, verbatim, what came out of my daughter's mouth. She was willing to fight, I asked her, and now that she's here in the fray, it was harder than she thought. At four. She said this at FOUR years old! She doesn't say she has "owies", or that she's sad, or simply cry for me like other four year olds. She says her medicine is disgusting, that she doesn't want to take it, that we need to leave her alone. She says that it isn't fair, that the cancer monster is trying to eat her, and that this is harder than she thought it was going to be. She blames her cancer for every ache and pain. And can you blame her? Essentially, she's right. I push back my tears, when all I want is a good cry. I have not afforded myself the luxury as yet. I don't have time, no one has the time for me to break down. Because I will completely lose my shit and be completely and utterly useless to everyone. I am it. I am her strength, and let's face it, when you're sick, all you want is your momma. I need to put my own selfish bullshit aside and be whatever she needs me to be, I need to be the woman I want her to become. She will do as I do, not as I say. I am afraid sometimes that she will mistake my feigned courage for stoicism, that she will think because I seem so strong, that she will think me unsympathetic, that she will think I don't care. But it only upsets her more to see me cry, and then she starts worrying about me, which I can't have. As big-hearted as my daughter is, and as funny as it sounds because all children are selfish, it's the nature of being a child, but it is time for her to be selfish now. It is time for her to worry only for herself, she shouldn't have to worry for me, too. And I am kidding myself if I think that she doesn't understand what is happening. She understands exactly what is happening here, and I am sure she understands my pain as well. When a child looks at you with a wisdom that far surpasses her years (she's FOUR!) caresses your cheek lovingly as a mother would do, and whispers, "It's okay, Momma. It's gonna be alright!" there is nothing more to conclude but that she understands all too well that I am suffering.
The other day, the very day that the doctor confirmed that her leukemia was back, I was packing up Sarah for our Disneyland trip, and she turns to me and hands me one of her princess crowns. "Here, Momma, I don't want this anymore," she says. Puzzled, because this child gives nothing away of her own volition, I asked her why, and she said, "I want you to have it. It will make you brave." Of course, all of the walls of bravery come crashing down at that point, and I start to cry. She's so little. Yet, she has a wisdom and strength that far surpasses my own and that of most adults.
All I can do is hope, pray, and do what I can for her. She is not ready to give up yet, so neither am I. I will never give up until the day she draws her last breath, whether that is in an hour, a week, a month, or eighty years from now. I will fight with whatever I have left.
This child can find a reason to dance when everything in her body hurts, when she has every reason to be whiny and irritable. If she can, then so can I.
Nurse Kara pushes pain meds, which alleviates her pain at least to the point where she stops crying, thank Christ! She has to wait until 2 for the procedure to put her broviac back in. At least she had about a month of respite, and her one concern is that she won't be able to swim now. Her brief interlude with a normal childhood is over. All she wants is to be a normal kid, do what normal kids do. It should be the God-given right of every child, but this is her life. At this point, she has been fighting longer than she hasn't. Three long years.
I keep thinking about that, to the point where I'm almost sick of thinking about it. She had one perfect year. For her first year of life, Sarah was perfect! Perfectly healthy, perfectly strong. She was beautiful and vivacious, funny and sweet, SMART, everything a baby should be. Then at 13 months she had that seizure, and it was all downhill from there. I remember thinking during that perfect year that I was entirely content with my life in that moment. I had a husband who loved me, my stepchildren were improving and moving towards happiness in their own right, or so I thought. I finally got to hold my own child in my arms after three miscarriages, and she was absolutely perfect. I had a job that I loved, a career on the rise. My life wasn't exactly perfect, no one's is, but my child was, and I was content. Maybe I shouldn't have been so happy.
I have lost everything but my child, and she is struggling to live at the moment. I have never once asked myself why. God knows why, and that's all I need to know. I keep putting one foot in front of the other, I trust in the plan. I am a good little girl as always and do exactly what I know I'm supposed to do. But inwardly, I fight. I rage against the dying of the light. I am thankful for those who are with me in spirit, I am secretly resentful of those who aren't. If you can't make someone a priority when they're dying, when can you? I am disillusioned with it all. I can't help the way I feel, but I don't want to waste energy on things that don't matter, either. My daughter needs me, and I am essentially it. I am the one that's here, day in and day out. I don't have time to waste on bitterness or resentment.
Sarah cries and says that this isn't fair, that this is so much harder than she thought it was going to be. I am not paraphrasing. That is exactly, verbatim, what came out of my daughter's mouth. She was willing to fight, I asked her, and now that she's here in the fray, it was harder than she thought. At four. She said this at FOUR years old! She doesn't say she has "owies", or that she's sad, or simply cry for me like other four year olds. She says her medicine is disgusting, that she doesn't want to take it, that we need to leave her alone. She says that it isn't fair, that the cancer monster is trying to eat her, and that this is harder than she thought it was going to be. She blames her cancer for every ache and pain. And can you blame her? Essentially, she's right. I push back my tears, when all I want is a good cry. I have not afforded myself the luxury as yet. I don't have time, no one has the time for me to break down. Because I will completely lose my shit and be completely and utterly useless to everyone. I am it. I am her strength, and let's face it, when you're sick, all you want is your momma. I need to put my own selfish bullshit aside and be whatever she needs me to be, I need to be the woman I want her to become. She will do as I do, not as I say. I am afraid sometimes that she will mistake my feigned courage for stoicism, that she will think because I seem so strong, that she will think me unsympathetic, that she will think I don't care. But it only upsets her more to see me cry, and then she starts worrying about me, which I can't have. As big-hearted as my daughter is, and as funny as it sounds because all children are selfish, it's the nature of being a child, but it is time for her to be selfish now. It is time for her to worry only for herself, she shouldn't have to worry for me, too. And I am kidding myself if I think that she doesn't understand what is happening. She understands exactly what is happening here, and I am sure she understands my pain as well. When a child looks at you with a wisdom that far surpasses her years (she's FOUR!) caresses your cheek lovingly as a mother would do, and whispers, "It's okay, Momma. It's gonna be alright!" there is nothing more to conclude but that she understands all too well that I am suffering.
The other day, the very day that the doctor confirmed that her leukemia was back, I was packing up Sarah for our Disneyland trip, and she turns to me and hands me one of her princess crowns. "Here, Momma, I don't want this anymore," she says. Puzzled, because this child gives nothing away of her own volition, I asked her why, and she said, "I want you to have it. It will make you brave." Of course, all of the walls of bravery come crashing down at that point, and I start to cry. She's so little. Yet, she has a wisdom and strength that far surpasses my own and that of most adults.
All I can do is hope, pray, and do what I can for her. She is not ready to give up yet, so neither am I. I will never give up until the day she draws her last breath, whether that is in an hour, a week, a month, or eighty years from now. I will fight with whatever I have left.
This child can find a reason to dance when everything in her body hurts, when she has every reason to be whiny and irritable. If she can, then so can I.
Thursday, August 30, 2012
Let the Shitstorm begin!!!
Okay, so I know it's a vulgar title, but there really is no other way to describe it, literally and figuratively. Sarah had a rough night Tuesday (and by "rough night," I mean she spiked a super high fever, fought her eye drops at 3 am, then proceeded to have night terrors the rest of the night about the eye drops, and wouldn't let me touch her because she thought I was trying to hold her down for more eye drops), slept most of the day yesterday because she was febrile (fancy doctor-speak for "she has a fever") was up for a few hours watching movies, then fell asleep around 10 or so. Not too bad, considering she had slept all day. Time to get my Hunger Games on, finally. I get about ten minutes in and fall asleep. Again.
Around 1, I can hear her whimpering in her sleep, so I get up to check on her. Heart rate is super high, so is her respiratory rate, so I call the nurse. I go to touch her, removing her sheet so that I can readjust it, and lo and behold, she is lying in a pool of her own excrement. "OH!" is my reaction as the nurse comes in, and I explain that this is not what I called her in for, but lookie what we have here! She graciously helps me to clean the bed and Sarah up, and no sooner do we finish this than Sarah starts to throw up, all over her freshly cleaned sheets and all over her freshly cleaned self. In my haste to get her something to puke in, I dumped out the basin holding her bathwater, but the drain wasn't fast enough, so there is now water on the floor, and by the time I got the basin there, she had stopped throwing up. Perfect.
We repeat the process again, obviously. New sheets, another wipe down, did I mention that Sarah has the shivers from her fever, so she is cold anyway, then being given a sponge bath in an air conditioned room? Not fun for her, which she is letting me know in no uncertain terms.I go to put fresh pajamas on her, then think better of it since her fever is so high and won't break. I don't know if I have ever recounted the story of the febrile seizure she had at thirteen months here, but since I probably have, and it's not the point anyway, let's just say high fevers make me seriously nervous. Seeing Sarah seize then go unconscious is still the worst experience of our lives to date, and this being said after going through three years of chemo. I wrap her in a towel and go to put her on my cot to at least put an undershirt on her, but she snuggles into my lap and falls asleep, and it makes me feel like I'm doing my job at least a little to hold her, because it's all I can do to ease her pain. So I hold her for awhile. Then I go to put her in her bed, put her undershirt on, and proceed to rinse out her clothes. The song "Chasing Cars" by Snow Patrol seeps into my head as I turn around from the sink where I am rinsing and watch her sleep for a second. I can't exactly explain why, the lyrics, maybe? I don't know. But there it is.
And now I can't sleep. Maybe because her heart rate has only just come down after two hours, maybe because I'm afraid the second I fall asleep she's going to poop or throw up again, maybe because I know the nurse will be in any minute with her eye drops, and the fight will begin anew, so I may as well stay alert. Like most people, I tend to have less patience when I'm half asleep. Maybe it's the fact that Kristie's Foundation left a pamphlet about hospice care services, and it is scaring the Bejeezus out of me. I don't feel in my heart that it's time for her to go, and my gut has never steered me wrong before, at least not where she is concerned. But I can't quite tell if that's denial, or a mother's intuition, and if I do say so myself, the force is quite strong with this one. I can always tell when something is going on with one of my kids. Always. Even the ones who don't want to be my kids anymore. I can't help it. It just is.
But then, there's that part of me that says I may just be fighting the inevitable. I have to banish those thoughts, because they are productive for no one right now, but at the same time, I am a realist. Denying the truth will not make it go away, Death is looming at our very door, how can I ignore it? Still, ignore it I am trying very hard to do the moment.
My mother has said of late that God or the Universe or what have you, has been putting the words "fear" and "faith" into her path lately. She is fond of quoting her favorite saying where this has occurred, "Never let your fear be stronger than your faith." All well and good. Then, in the ten minutes I happened to catch of the Hunger Games before I fell asleep, there was a line that caught my attention, as President Snow, and the other guy who I can't quite place because it has been months since I read the books and the movie hasn't stated his name, discuss the uprisings in the districts, and what they do to control it. President Snow asks the other guy (lol! I am so good with characters usually, this is cracking me up and bugging me at the same time that I can't remember!) if he knows why they have a Hunger Games at all. (For those of you living underneath a rock, the Hunger Games is a fight to the death between 24 contestants picked by lottery, two from each district, of which there are 12, ages 12 to 18. It's a death match, with only one victor, the last one standing. The victor gets riches, fame, etc. and mentors future contestants. They do this to remind the citizens of the government's generosity and their ultimate power.) Anyway, the president asks the other guy (Seneca Crane, the head game maker for the Hunger Games, thanks IMDb!) if he knows why they even have a Hunger Games, when they could just pick 24 kids and just execute them then and there. He says a single word, "Hope." Hope is stronger than fear, he says, and effective in ruling the people. A little hope is alright, a lot is dangerous. I think that's where I am right now. I want to hope that Sarah can make it through this, but I am afraid of hoping for too much, and then being all the more bitterly disappointed and saddened if it doesn't turn out the way I would like. I guess the best I can do is to hope just enough to keep us going.
Then again, a lot of hope is dangerous to the enemy because it gives courage and strength to do what you wouldn't do otherwise. Courageous people do great and incredible things because they believe there is a chance they can win. So maybe it's not so bad if I hope a little more than a little. It's gotten us this far.
Around 1, I can hear her whimpering in her sleep, so I get up to check on her. Heart rate is super high, so is her respiratory rate, so I call the nurse. I go to touch her, removing her sheet so that I can readjust it, and lo and behold, she is lying in a pool of her own excrement. "OH!" is my reaction as the nurse comes in, and I explain that this is not what I called her in for, but lookie what we have here! She graciously helps me to clean the bed and Sarah up, and no sooner do we finish this than Sarah starts to throw up, all over her freshly cleaned sheets and all over her freshly cleaned self. In my haste to get her something to puke in, I dumped out the basin holding her bathwater, but the drain wasn't fast enough, so there is now water on the floor, and by the time I got the basin there, she had stopped throwing up. Perfect.
We repeat the process again, obviously. New sheets, another wipe down, did I mention that Sarah has the shivers from her fever, so she is cold anyway, then being given a sponge bath in an air conditioned room? Not fun for her, which she is letting me know in no uncertain terms.I go to put fresh pajamas on her, then think better of it since her fever is so high and won't break. I don't know if I have ever recounted the story of the febrile seizure she had at thirteen months here, but since I probably have, and it's not the point anyway, let's just say high fevers make me seriously nervous. Seeing Sarah seize then go unconscious is still the worst experience of our lives to date, and this being said after going through three years of chemo. I wrap her in a towel and go to put her on my cot to at least put an undershirt on her, but she snuggles into my lap and falls asleep, and it makes me feel like I'm doing my job at least a little to hold her, because it's all I can do to ease her pain. So I hold her for awhile. Then I go to put her in her bed, put her undershirt on, and proceed to rinse out her clothes. The song "Chasing Cars" by Snow Patrol seeps into my head as I turn around from the sink where I am rinsing and watch her sleep for a second. I can't exactly explain why, the lyrics, maybe? I don't know. But there it is.
And now I can't sleep. Maybe because her heart rate has only just come down after two hours, maybe because I'm afraid the second I fall asleep she's going to poop or throw up again, maybe because I know the nurse will be in any minute with her eye drops, and the fight will begin anew, so I may as well stay alert. Like most people, I tend to have less patience when I'm half asleep. Maybe it's the fact that Kristie's Foundation left a pamphlet about hospice care services, and it is scaring the Bejeezus out of me. I don't feel in my heart that it's time for her to go, and my gut has never steered me wrong before, at least not where she is concerned. But I can't quite tell if that's denial, or a mother's intuition, and if I do say so myself, the force is quite strong with this one. I can always tell when something is going on with one of my kids. Always. Even the ones who don't want to be my kids anymore. I can't help it. It just is.
But then, there's that part of me that says I may just be fighting the inevitable. I have to banish those thoughts, because they are productive for no one right now, but at the same time, I am a realist. Denying the truth will not make it go away, Death is looming at our very door, how can I ignore it? Still, ignore it I am trying very hard to do the moment.
My mother has said of late that God or the Universe or what have you, has been putting the words "fear" and "faith" into her path lately. She is fond of quoting her favorite saying where this has occurred, "Never let your fear be stronger than your faith." All well and good. Then, in the ten minutes I happened to catch of the Hunger Games before I fell asleep, there was a line that caught my attention, as President Snow, and the other guy who I can't quite place because it has been months since I read the books and the movie hasn't stated his name, discuss the uprisings in the districts, and what they do to control it. President Snow asks the other guy (lol! I am so good with characters usually, this is cracking me up and bugging me at the same time that I can't remember!) if he knows why they have a Hunger Games at all. (For those of you living underneath a rock, the Hunger Games is a fight to the death between 24 contestants picked by lottery, two from each district, of which there are 12, ages 12 to 18. It's a death match, with only one victor, the last one standing. The victor gets riches, fame, etc. and mentors future contestants. They do this to remind the citizens of the government's generosity and their ultimate power.) Anyway, the president asks the other guy (Seneca Crane, the head game maker for the Hunger Games, thanks IMDb!) if he knows why they even have a Hunger Games, when they could just pick 24 kids and just execute them then and there. He says a single word, "Hope." Hope is stronger than fear, he says, and effective in ruling the people. A little hope is alright, a lot is dangerous. I think that's where I am right now. I want to hope that Sarah can make it through this, but I am afraid of hoping for too much, and then being all the more bitterly disappointed and saddened if it doesn't turn out the way I would like. I guess the best I can do is to hope just enough to keep us going.
Then again, a lot of hope is dangerous to the enemy because it gives courage and strength to do what you wouldn't do otherwise. Courageous people do great and incredible things because they believe there is a chance they can win. So maybe it's not so bad if I hope a little more than a little. It's gotten us this far.
Sunday, August 26, 2012
Reflections on the past three years.
Okay, so August 20th was the three year mark for Lil Missy and her ALL cancer diagnosis. Wow. Seems a long way to have come when you look back on it. Being a cancer mom kind of gives you tunnel vision, you go into survival mode and just focus on what is directly in front of you, take life in small increments that you can control. I can't fix her cancer. But I can make the appointment. I can cancel the other appointment. (That reminds me, I have to cancel an appointment! lol) I can dole out the meds, rub the aching limbs, hold her all day long when life just sucks and all she wants is her Momma. Check. I can do that. You try not to look at the big picture because it's all so overwhelming. As cliche as it sounds, it's sort of akin to climbing anything of a surmountable size. You can't look down, or you'll never make it. You will scare yourself into being physically unable to do anything.
As I was considering this long road we have traveled together, I took a mental inventory.
Cancer has cost me:
1. Two long time friends
2. A few family members
2. A happy marriage
3. Two stepchildren (who are actually speaking to me)
4. My career
5. My independence
That's a lot to give up. It's a lot of things that I held very dear that I lost because of all this. But there is an old Spanish proverb, roughly translated, that says,"Something good always comes from something bad." And cancer is very, VERY bad! So let's take stock of what I have gained through this experience:
1. An abundant wealth of new friends whom I know I can count upon at any given time and for absolutely anything, great or small, especially moral support, which is the most important.I am so, so grateful for each and every one of the people that is in my life at the present moment, both in person and from afar.
2. More self confidence and self esteem than I have ever had before. I never thought I was capable of going through something like this with my sanity intact.
3. An extended "family" for Sarah. So many people love her, and go out of their way for her. People tell me all the time that she inspires them, and that they pray for her every day. She is so, so loved, and that is a great thing to be! :) Is it wrong that I bask a little in the glow myself? If there is anything this experience has taught me, it's that people show their true colors in a crisis, and family is people who love you and are there for you. Period.
4. Broadened horizons, both within the cancer realm and without. I have such a greater sense of human nature now than I did before. I can see things so much clearer now, put things in order of importance. Life really is too short to harbor animosity or hatred. It's a waste of energy, and precious time. That being said, it's also too short to put up with bullshit, so I have strived to focus my energy and attention on those people who bring positivity and light into my atmosphere and especially that of my daughter. She needs that positive energy in order to heal, or, if things don't go the way we all hope, I do not want her time here to be clouded in negativity. She deserves sweetness and light. And love. Because in the end, doesn't it all boil down to love? Even hatred is love gone wrong. But you have to care to hate. That takes time and energy. And I don't have it to waste. I focus that energy and time instead into my daughter who needs it more.
5. Inspiration. There was a time where I had lost myself so completely that even to sit down to a twenty minute blog was a forced exercise. I had to tell myself to write. What used to be a compulsion was now a chore to keep myself from going insane, from completely losing who I am at the very heart of me. This blog and this experience has compelled me to write again, to capture every precious second before it's gone. One way or another, these are moments worth preserving, cancer or no. This afternoon, before we went to the candy store (that's another blog entirely!), Sarah was walking around speaking in a British accent because she had just watched a solid hour of Peppa Pig! Lol...the best part? Her accent wasn't half bad! :)
I'm sure there are many other things I can find that I have gained from this, but five and five seems to be a good place to end. Between this, the blog I mean to write after this about our adventures this week, and the 500-some-odd pictures I have posted for y'all to rifle through, I have kept you all quite busy! :)
Overall, I have gained so much more than I have lost. Maybe that was the point. All I can do is hold on to hope that Sarah will continue to be the rock star she is and sail through this the way she has sailed through everything else. She has inspired so many people, me most of all. And somehow, my Mommy Senses are telling me that she isn't done inspiring people yet. We still have a way to go.
As I was considering this long road we have traveled together, I took a mental inventory.
Cancer has cost me:
1. Two long time friends
2. A few family members
2. A happy marriage
3. Two stepchildren (who are actually speaking to me)
4. My career
5. My independence
That's a lot to give up. It's a lot of things that I held very dear that I lost because of all this. But there is an old Spanish proverb, roughly translated, that says,"Something good always comes from something bad." And cancer is very, VERY bad! So let's take stock of what I have gained through this experience:
1. An abundant wealth of new friends whom I know I can count upon at any given time and for absolutely anything, great or small, especially moral support, which is the most important.I am so, so grateful for each and every one of the people that is in my life at the present moment, both in person and from afar.
2. More self confidence and self esteem than I have ever had before. I never thought I was capable of going through something like this with my sanity intact.
3. An extended "family" for Sarah. So many people love her, and go out of their way for her. People tell me all the time that she inspires them, and that they pray for her every day. She is so, so loved, and that is a great thing to be! :) Is it wrong that I bask a little in the glow myself? If there is anything this experience has taught me, it's that people show their true colors in a crisis, and family is people who love you and are there for you. Period.
4. Broadened horizons, both within the cancer realm and without. I have such a greater sense of human nature now than I did before. I can see things so much clearer now, put things in order of importance. Life really is too short to harbor animosity or hatred. It's a waste of energy, and precious time. That being said, it's also too short to put up with bullshit, so I have strived to focus my energy and attention on those people who bring positivity and light into my atmosphere and especially that of my daughter. She needs that positive energy in order to heal, or, if things don't go the way we all hope, I do not want her time here to be clouded in negativity. She deserves sweetness and light. And love. Because in the end, doesn't it all boil down to love? Even hatred is love gone wrong. But you have to care to hate. That takes time and energy. And I don't have it to waste. I focus that energy and time instead into my daughter who needs it more.
5. Inspiration. There was a time where I had lost myself so completely that even to sit down to a twenty minute blog was a forced exercise. I had to tell myself to write. What used to be a compulsion was now a chore to keep myself from going insane, from completely losing who I am at the very heart of me. This blog and this experience has compelled me to write again, to capture every precious second before it's gone. One way or another, these are moments worth preserving, cancer or no. This afternoon, before we went to the candy store (that's another blog entirely!), Sarah was walking around speaking in a British accent because she had just watched a solid hour of Peppa Pig! Lol...the best part? Her accent wasn't half bad! :)
I'm sure there are many other things I can find that I have gained from this, but five and five seems to be a good place to end. Between this, the blog I mean to write after this about our adventures this week, and the 500-some-odd pictures I have posted for y'all to rifle through, I have kept you all quite busy! :)
Overall, I have gained so much more than I have lost. Maybe that was the point. All I can do is hold on to hope that Sarah will continue to be the rock star she is and sail through this the way she has sailed through everything else. She has inspired so many people, me most of all. And somehow, my Mommy Senses are telling me that she isn't done inspiring people yet. We still have a way to go.
Wednesday, August 22, 2012
Worst news ever. EVER.
Okay, so this is the post you need a box of tissues for, cuz shit's about to get real up in here.
Thursday, Doc calls me and says that Sarah's platelets have been trending downward (fancy doctor speak for "They're dropping") and they wanted to do a biopsy to find out what's going on. Fine. I have been wondering about the crazy huge bruises on her knees myself. Probably nothing, I say to myself. I make plans to go in the following day.
Friday, we go in for her bone marrow aspirate and biopsy. My mom decided to go with me, since she's on vacay and she wanted to hear what they had to say, plus she knows that LP/procedure days are THE WORST for me and for Sarah, so she wanted to be there for support. They do the biopsy, I cancel PT because there is no way Sarah is up for that after a procedure. I am told several times that they won't get the results back until the following week. That means probably while we're at Disneyland, but okay. I can deal.
Doctor calls at 2pm, but my phone is dead from the AMAZING outpouring of supportive messages from our awesome friends and family. So he leaves a voice mail, stating that they got the results of the biopsy back ALREADY and would like to discuss, he'll call me back later. Which of course, makes me crazy. So, I attempt to call the clinic and OPI to see if he's there, but he's MIA and I just have to wait until he calls me back. Easier said than done, but what are you gonna do? I distract myself with my little impish monkey of a daughter, and I wait it out.
Around 9 pm, when I am trying to coax the little diva into a bath, the doctor calls back and tells me that the results of the biopsy look like her leukemia is back, but that the pathologist didn't want to sign off 100% until the other tests came back. But he and the other doctors have pow-wowed, and they have a plan. Okay, I can deal with that. Pray like hell it's nothing. Could still be nothing. We'll see.
Yesterday, (Monday) the doc calls me after Sarah's labs (while I'm waiting for the car wash, no less!) to tell me that the other test results are back, and the leukemia is indeed back for the third time. Apparently, having it's ass kicked by my feisty little ragga-muffin wasn't enough for it. It wants Round 3. He wants to hospitalize us on Wednesday and start chemo. I tell him about Sarah's trip, beg and plead to postpone until next week, and he amiably agrees. We also agree that before Sarah's MRI we will meet to discuss the road map.Only everyone has gone for the day, so I have to call the clinic super early to schedule an appointment, while they're re-accessing Sarah, cuz Mommy is a big dummy and had them de-access after labs.
I call the clinic in the morning, they have me come in at 10, and I have to check in for her MRI at 11:30. They get us in asap. The doctor comes in not long after. Everyone is giving me and my mother these hang-dog sympathetic looks. They're sorry for us. They love Sarah, and while they see this daily, you can tell it hurts each and every time. The doctor attempts to give us hope without giving us false hope. They are going to give her drugs similar to what they gave prior to her transplant, except for the drug that prevents the graft vs. host, because the GVHD drugs also prevent the chemo from working in this case. And we really, REALLY want the chemo to work because she's got a 5% shot at a cure this time. He says he sees no reason why she couldn't be in that 5%, considering that my daughter is a freakin' ROCK STAR and pretty much sailed through chemo with nary a scratch. Still, we have to be prepared. If this doesn't work, that's pretty much it. When the terms "quality of life" and "hospice care" are bandied about, you know this is some serious shit. The rose-colored scope with which you view the world becomes the size of a pinhole. As her chances shrink, so does my hope that this will turn out all right.
I have to mentally prepare myself to lose my daughter. I don't know how to do that. Does anyone? I have to somehow make myself at least face the possibility now. For three years now, I have banished the thought. Whenever the thought of her being gone would creep in, nightmares of her funeral, who would be there, who I would kick out, who I would bitch-slap and THEN kick out for saying the wrong fucking thing to me, I would banish the thought as quickly as it would come. Stay positive, think about what you do want, not about what you don't want. She's still here, I would remind myself, and I would take a moment to study her face, to touch her, hug her, kiss her little round cheeks. And as long as she is still here, I can deal with anything. Do I have a choice? Everyone is encouraging me to take a little time to cry, to mourn, to curse and to hit things. And believe me, I would love nothing better than to drink myself insane and then sleep for a year.
But no one has time for me to fall apart right now, least of all Sarah. She needs me. She takes her cues from me for how to be in the world, for how to be a woman, for how to be a human being. If this is all I get, I'm not going to waste my time in self-pity. I'm going to take her to Disneyland, and spoil her rotten. I'm going to find the biggest lollipop they make and let her eat it for breakfast. I'm going to enjoy my daughter while she's still here, for however long that is. A week, a month, a year, twenty years after I am dead and gone, whatever it is, I intend to revel in it. I am going to savor every sweet morsel of time I have, because I may not get more. Time is all relative, anyway. Sarah has taught me more in her four short years than I ever thought capable of learning in a lifetime. Make no mistake, I am not prepared to lose her, not yet. We are still praying for a miracle, and we will not give up before it's time. But if this is all I get, I intend to live it out with no regrets.
Thursday, Doc calls me and says that Sarah's platelets have been trending downward (fancy doctor speak for "They're dropping") and they wanted to do a biopsy to find out what's going on. Fine. I have been wondering about the crazy huge bruises on her knees myself. Probably nothing, I say to myself. I make plans to go in the following day.
Friday, we go in for her bone marrow aspirate and biopsy. My mom decided to go with me, since she's on vacay and she wanted to hear what they had to say, plus she knows that LP/procedure days are THE WORST for me and for Sarah, so she wanted to be there for support. They do the biopsy, I cancel PT because there is no way Sarah is up for that after a procedure. I am told several times that they won't get the results back until the following week. That means probably while we're at Disneyland, but okay. I can deal.
Doctor calls at 2pm, but my phone is dead from the AMAZING outpouring of supportive messages from our awesome friends and family. So he leaves a voice mail, stating that they got the results of the biopsy back ALREADY and would like to discuss, he'll call me back later. Which of course, makes me crazy. So, I attempt to call the clinic and OPI to see if he's there, but he's MIA and I just have to wait until he calls me back. Easier said than done, but what are you gonna do? I distract myself with my little impish monkey of a daughter, and I wait it out.
Around 9 pm, when I am trying to coax the little diva into a bath, the doctor calls back and tells me that the results of the biopsy look like her leukemia is back, but that the pathologist didn't want to sign off 100% until the other tests came back. But he and the other doctors have pow-wowed, and they have a plan. Okay, I can deal with that. Pray like hell it's nothing. Could still be nothing. We'll see.
Yesterday, (Monday) the doc calls me after Sarah's labs (while I'm waiting for the car wash, no less!) to tell me that the other test results are back, and the leukemia is indeed back for the third time. Apparently, having it's ass kicked by my feisty little ragga-muffin wasn't enough for it. It wants Round 3. He wants to hospitalize us on Wednesday and start chemo. I tell him about Sarah's trip, beg and plead to postpone until next week, and he amiably agrees. We also agree that before Sarah's MRI we will meet to discuss the road map.Only everyone has gone for the day, so I have to call the clinic super early to schedule an appointment, while they're re-accessing Sarah, cuz Mommy is a big dummy and had them de-access after labs.
I call the clinic in the morning, they have me come in at 10, and I have to check in for her MRI at 11:30. They get us in asap. The doctor comes in not long after. Everyone is giving me and my mother these hang-dog sympathetic looks. They're sorry for us. They love Sarah, and while they see this daily, you can tell it hurts each and every time. The doctor attempts to give us hope without giving us false hope. They are going to give her drugs similar to what they gave prior to her transplant, except for the drug that prevents the graft vs. host, because the GVHD drugs also prevent the chemo from working in this case. And we really, REALLY want the chemo to work because she's got a 5% shot at a cure this time. He says he sees no reason why she couldn't be in that 5%, considering that my daughter is a freakin' ROCK STAR and pretty much sailed through chemo with nary a scratch. Still, we have to be prepared. If this doesn't work, that's pretty much it. When the terms "quality of life" and "hospice care" are bandied about, you know this is some serious shit. The rose-colored scope with which you view the world becomes the size of a pinhole. As her chances shrink, so does my hope that this will turn out all right.
I have to mentally prepare myself to lose my daughter. I don't know how to do that. Does anyone? I have to somehow make myself at least face the possibility now. For three years now, I have banished the thought. Whenever the thought of her being gone would creep in, nightmares of her funeral, who would be there, who I would kick out, who I would bitch-slap and THEN kick out for saying the wrong fucking thing to me, I would banish the thought as quickly as it would come. Stay positive, think about what you do want, not about what you don't want. She's still here, I would remind myself, and I would take a moment to study her face, to touch her, hug her, kiss her little round cheeks. And as long as she is still here, I can deal with anything. Do I have a choice? Everyone is encouraging me to take a little time to cry, to mourn, to curse and to hit things. And believe me, I would love nothing better than to drink myself insane and then sleep for a year.
But no one has time for me to fall apart right now, least of all Sarah. She needs me. She takes her cues from me for how to be in the world, for how to be a woman, for how to be a human being. If this is all I get, I'm not going to waste my time in self-pity. I'm going to take her to Disneyland, and spoil her rotten. I'm going to find the biggest lollipop they make and let her eat it for breakfast. I'm going to enjoy my daughter while she's still here, for however long that is. A week, a month, a year, twenty years after I am dead and gone, whatever it is, I intend to revel in it. I am going to savor every sweet morsel of time I have, because I may not get more. Time is all relative, anyway. Sarah has taught me more in her four short years than I ever thought capable of learning in a lifetime. Make no mistake, I am not prepared to lose her, not yet. We are still praying for a miracle, and we will not give up before it's time. But if this is all I get, I intend to live it out with no regrets.
Sunday, August 12, 2012
Grant's Wish update....
Sooooo.....For those of you living under a rock, Sarah has been granted another wish by Grant's Wishes (yay!), an organization that grants wishes (get it?) for kids who relapse or get a secondary diagnosis that have already been granted a wish through Make-a-Wish, cuz I guess they only do it once. So, we were thinking Florida, but they don't do out of state, so our little Disney Diva will be doing another stint at Disneyland with a stay at the hotel and everything! But shhhhh! It's a surprise! She doesn't know anything, and I even have her wishing on stars that she gets to go soon! :)
They called my mom on the DL and gave her some details that I am not privy to as well, so I get to be surprised, too! (Double yay!)
Us three girls (well, two since Sarah doesn't know) are sooooo looking forward to this much needed stay-cay, and I can't wait!!!!
Now, to pack the bags without my little super sleuth noticing, because she notices absolutely everything...
More later on this fabulous adventure coming up in just a little under two weeks!
They called my mom on the DL and gave her some details that I am not privy to as well, so I get to be surprised, too! (Double yay!)
Us three girls (well, two since Sarah doesn't know) are sooooo looking forward to this much needed stay-cay, and I can't wait!!!!
Now, to pack the bags without my little super sleuth noticing, because she notices absolutely everything...
More later on this fabulous adventure coming up in just a little under two weeks!
Time....
Random thought for the day. I realized that all of our lives are ruled by time. How much time it takes us to get here or there, how much time it takes to do this or that. Sarah's new favorite question is, "How long does it have to take?" because she is Miss Bossy Boots and wants everything done yesterday. We are all ruled by it, and yet we take it so much for granted. When it comes to something we want, we all have a child's impatience. How long does it have to take? But when it comes to something we don't want, we take forever. I'll do it tomorrow/later/never.
When you're a cancer mom, time becomes even more important, because it's crucial to your child's very existence. How long has it been since she had this or that medication? How long since her last bowel movement? How long since she had anything to eat? When did she have this or that procedure? And we remember it all off hand, rattle it off the cuff like our phone numbers or social security numbers because it's even more crucial that we remember. Time is literally precious because each moment with our babies is a gift and not at all guaranteed. Time is not guaranteed to any of us, but when your baby has spent his/her entire life on borrowed time, you realize just how precious it really is. Each birthday holds more meaning not only because it means you made it another year, but because you never know if it could be the last one you celebrate together. You buy the crap they don't need and you really can't afford, because you don't want to regret it later.
I cannot count how many times a day Sarah and I kiss and hug each other. Not five minutes goes by in the day without my telling her that I love her. Because I want to make sure she knows. I rain down so much affection on this child that she hates when I get short with her. "Are you still mad, Momma?" and how can I be mad after that? Life really is too short. I know it's trite to say that we need to savor every moment, but if I could freeze her exactly as she is now, I would. Children shed skin like snakes, and these kids, these warriors change even more than that depending on their treatment. Through her scrapbooks I can see Sarah's cheeks puff in and out from steroids, I can watch her hair grow and fall out and grow again. I never realize how bald she was until I see the pictures later. The baby I brought home from the hospital is gone. That tiny baby is a ghost of a memory, and I will never get her back. But I loved her so well that I don't really need to get her back.
When you spend your entire life fighting to survive, time is all you have. No wonder my baby doesn't want to waste a single minute now that she finally gets a little taste of what it is to live.
When you're a cancer mom, time becomes even more important, because it's crucial to your child's very existence. How long has it been since she had this or that medication? How long since her last bowel movement? How long since she had anything to eat? When did she have this or that procedure? And we remember it all off hand, rattle it off the cuff like our phone numbers or social security numbers because it's even more crucial that we remember. Time is literally precious because each moment with our babies is a gift and not at all guaranteed. Time is not guaranteed to any of us, but when your baby has spent his/her entire life on borrowed time, you realize just how precious it really is. Each birthday holds more meaning not only because it means you made it another year, but because you never know if it could be the last one you celebrate together. You buy the crap they don't need and you really can't afford, because you don't want to regret it later.
I cannot count how many times a day Sarah and I kiss and hug each other. Not five minutes goes by in the day without my telling her that I love her. Because I want to make sure she knows. I rain down so much affection on this child that she hates when I get short with her. "Are you still mad, Momma?" and how can I be mad after that? Life really is too short. I know it's trite to say that we need to savor every moment, but if I could freeze her exactly as she is now, I would. Children shed skin like snakes, and these kids, these warriors change even more than that depending on their treatment. Through her scrapbooks I can see Sarah's cheeks puff in and out from steroids, I can watch her hair grow and fall out and grow again. I never realize how bald she was until I see the pictures later. The baby I brought home from the hospital is gone. That tiny baby is a ghost of a memory, and I will never get her back. But I loved her so well that I don't really need to get her back.
When you spend your entire life fighting to survive, time is all you have. No wonder my baby doesn't want to waste a single minute now that she finally gets a little taste of what it is to live.
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