Okay, so I have finally found a way to blog from the hospital since they don't have wifi and my "smart" phone won't let me! This could get interesting...I am intrigued by this idea, because now not only can I blog more often when I am here for weeks at a time (instead of going AWOL for weeks at a time because I'm in the hospital with no wifi) but I can blog about the things I want to share as they happen, while they are still fresh in my mind. So, I am coming to you live via my laptop and an ancient ethernet cable that stretches clear across the room, and a physical therapy bench that I have turned into a makeshift desk. Today, after weeks of handling her chemo like a champ, Miss Boots has a fever, which spiked last night and never quite left. True to form, Miss Boots is playing on the floor with her Lalaloopsies as though she were sitting at home, wearing her favorite owl shirt and a red tutu. Her appetite is decreased, and at 1:00 in the afternoon, she has yet to ingest anything except her meds and the water she used to wash them down. I keep offering, she keeps refusing, and so it goes until about 10:30 at night when she all of a sudden eats an entire bag of popcorn and half a loaf of french bread...this is my daughter...
Other than that, it's pretty uneventful. The doctor says that the fever is almost to be expected since she's been neutropenic (that's fancy doctor-speak for "has no/low white blood cell counts") for about a week now, and that despite this and the bionic eye that refuses to go away (did I mention that because of low platelets she burst blood vessels in her eye, turning the entire white part a very disturbing and vampiric red?) that everything is okay. Now this is Dr. K., an elderly Hungarian gentleman who has been practicing for years and treats Sarah like a granddaughter, and sometimes worries more than I do about her. He says everything is fine, but there is something in his eyes that worries me, as though he is trying to convince himself. I suppose all it means is that for now, everything is fine, but we will be extra vigilant, just in case, which is fine by me. Sure beats the hell out of the rock star pediatrician who told me nothing was wrong and I was over-mothering.
The thing is, someone forgot to tell Sarah that there is any cause for concern whatsoever. As the doctors and nurses are "rounding", meaning that they are having a little mini-meeting to discuss the patients' progress and possible courses of action, he keeps looking through the glass doors at Sarah as he discusses with great gravity her arduous journey, her recent minor complications, and he sees her dancing, singing, playing with her Barbies on the bed, and a smile creeps across his face. Inwardly, this is a very sick little girl. Outwardly, this is a normal, funny, beautiful, incredibly SMART four year old. She is bossy and domineering, and she talks to me and the nurses like we're the help (don't worry, we're working on it, and she is improving!) but as Nurse Kerry put it last night after a five minute struggle to get her to take Tylenol, which is kiddie stuff compared to all the other crap that she takes with no problem, it is that spunk and fight in her that gives her the strength to go through this. That, and the wonderful, caring team that provides us with such loving care every single day, as well as all of the love and support from our wonderful friends and family. This is not an easy path we have to tread, and I am so thankful for those who have been there to help us through. We love you all! :)
More to
Monday, January 30, 2012
Saturday, January 14, 2012
Donate button...
In the first stage of Sarah's treatment for AML, a few people asked me about starting up a facebook page dedicated solely to Sarah and her progress, so I am pleased to announce the inception of Miss Boots vs. Cancer, Round 2, where I will be posting updates on Sarah's progress as she moves through the chemo treatment for AML, bone marrow donors and transplant, and beyond. At the behest of a few people as well, I have added to this blog a donate button that links directly to my paypal account for those of you generous folk who have asked about making financial contributions to aid Miss Boots and me in our fight. I have not tested this, so in case it doesn't work, my email address is molliecat2004@yahoo.com, and you can send money through paypal this way as well. The donate button does the same thing, it just makes the whole process a bit easier and more convenient. So there it is! :) I am not soliciting donations in any way, but if you want to help, there's the info on how to do it! :)
New Year...
Okay, so for those of you in the know, it is no surprise that it has taken me this long to get back to the page, since you already know that these past few months have been CRAAAAAZY!!! To say the least...For those of you not in the know, slightly in the know but looking for me to fill you in, or heard it all but don't mind hearing it again, here it is.
My mom's birthday was December 1. We went out with my grandma and my great aunt to celebrate, Miss Boots was well enough to tag along. We met at a restaurant that was a halfway point for all involved, in a mini mall in West Covina. We had a pleasant meal, and it was time to strap Miss Boots into her car seat. Now, since Miss Boots had been in maintenance for her ALL treatment for several months at this point, she had a sudden growth spurt and I had been fighting and struggling with her car seat for a few weeks since she no longer fit. My mom had promised to buy her a booster seat for Christmas, and since we were in a mini mall and a Target was within a short distance, my mother suggested we drive around to the Target and shop for a booster seat right then and there. We drove around, settled Miss Boots into a shopping cart, and proceeded to walk towards the entrance when my phone rang. I recognized the number as being the hospital where Sarah receives her treatment, so I answered it, thinking maybe they were going to change her appointment, or something else just as innocent. When I recognized her doctor and the tone of his voice on the other end of the line, I stopped dead in my tracks, still in the parking lot. This being a cold and windy evening, my mom took Sarah inside the store. The doctor informed me that Sarah had contracted AML (Acute Myeloid Leukemia), a secondary cancer which is much more aggressive and has a much lower survival rate, from the treatment for her ALL. He said it is rare that this happens, but that it does happen, and that it is treatable, but that her chances of survival are around 50%. He wanted us to come in the next day to be admitted to the hospital for treatment. I asked him how long, he said to plan for several weeks. I stood there for a second after he hung up, shocked, and in tears. I allowed myself a moment to cry, not wanting to frighten Sarah or my mother when I entered the store. After a minute, I entered the store and found my mother and daughter. I explained to my mother as calmly and as best I could what the doctor had said and what he wanted us to do, so we spent the rest of the shopping trip shopping not only for a booster seat, but for necessities for the hospital as well. My mother kept having to ask if I needed this or that, I was still in such a state of shock, I couldn't think about mundane things like cotton balls and q-tips. All I could think about was my daughter, how much I love her, how unfair it all is. She was supposed to be done in January. And somewhere within me, I had known. I had known, and I had dismissed it as pessimism, and banished the thought. Somewhere, whenever someone would mention the closure of her treatment, or my impending return to work, I felt uneasy, it didn't sit right with me, it didn't ring true that she would really be done, that this would be over in just a matter of months. It didn't feel over to me, and sure enough, here was the call from the doctor telling me that not only was it not over, it was about to get a hell of a lot more complicated. I had a 50/50 shot of keeping my daughter. She was not even four yet, and she has a fifty-fifty shot at surviving.
We completed our shopping trip and headed for home, so that I could pack myself and my daughter up in preparation for a month-long hospital stay. The next morning we checked in to the hospital, and chemo began immediately. Over a ten day course, Sarah received three different chemo drugs, three different antibiotics when the drugs caused fever and diarrhea, the diarrhea became worse with the antibiotics and it got to the point where every single diaper was full of diarrhea and we had to give her pain medication before diaper changes. Sarah spent her fourth birthday in the hospital as well as Christmas and New Year's. A CT scan revealed that Sarah had developed a bacterial infection called pseudopneumosis in her lungs that poses as pneumonia. More antibiotics which she HATES and fights with every dose. At the beginning of this month, we were granted a four day reprieve, and this past Wednesday, Sarah went back into the hospital for round 2 of her aggressive AML treatment. I was there for two days, then a cold I had been fighting got the better of me and I was forced to ask my mother to relieve me as my husband is also ill. I am currently doing everything I can to beat this cold so that I can get back to my daughter and help her through this second course. My mom reports that four days into chemo, she currently has no fevers and no diarrhea, and is eating decently, so that is a prayer answered in my book. She is still fighting her meds, but a session with a child life specialist revealed that Sarah does this because she is scared, and doesn't feel in control of much else right now. She is walking at a hobble right now, so she is being seen by a physical therapist, an occupational therapist for her writing skills, a speech therapist is coming Monday, and pain management and psychology are working closely with her. She is well covered and well taken care of. But so many people can look threatening to a small child, even if they are trying to help. I have tried so hard over the past two years to keep her feeling as normal as I possibly can, so all of these people coming in is like admitting there is something wrong with her. A lot to ask of a four year old. So we are fighting, together, to beat this monster called cancer that has tried to claim my baby not once but twice now. And we will continue fighting. It has been a crazy year, and my life has changed dramatically. I have lost people that mean a lot to me in the process. But my daughter has always been my first priority, and she is still here. She is still here, and the fact that she has so much energy to fight me, her grandmother, and her nurses about her medicine gives me hope.
It has been a year since I began this blog, as part of my New Year's Resolution promises to the committee. The committee has since fallen apart, my life has since fallen apart, so I decided that this year, I am not going to make resolutions that I am not going to even remember two weeks later. I am instead going to simply charge ahead and try to live this year with as much hope, love and gratitude as I can. We don't know how much time Sarah has. I don't know how much longer I get to be Sarah's mother. We could have a day, a week, a month, a year, a decade, a lifetime. We just don't know. That is in God's hands, and we just don't know how long we get. Even after the transplant, there is a chance it might not work. My life has become all about time. I am not thinking about the year ahead, I am thinking about now. Right now, this moment. This is what I have in my hand, this moment. I cannot think about the possibilities right now, the what-ifs, I will drive myself insane. All I have is right now, and right now, my daughter is alive. My daughter is fighting. Right now, my daughter is kicking cancer's ass. So if I resolve to do anything this year, it's to live each day like it's our last, because it very well could be. If this whole thing doesn't go the way we all hope and pray it will, I want Sarah to have had as full a life as I was able to give her. I want to know that I did the best I could by my daughter, that I was the best mother I could have been. I want to know that, either way. When I am planning her party to celebrate a year from transplant, and her high school graduation, her college graduation, her wedding, her baby shower, her grandchild's baby shower, I need to know that we lived every day loving, living, and appreciating each other as best as we know how. The rest will come unbidden and we will take it as it comes.
My mom's birthday was December 1. We went out with my grandma and my great aunt to celebrate, Miss Boots was well enough to tag along. We met at a restaurant that was a halfway point for all involved, in a mini mall in West Covina. We had a pleasant meal, and it was time to strap Miss Boots into her car seat. Now, since Miss Boots had been in maintenance for her ALL treatment for several months at this point, she had a sudden growth spurt and I had been fighting and struggling with her car seat for a few weeks since she no longer fit. My mom had promised to buy her a booster seat for Christmas, and since we were in a mini mall and a Target was within a short distance, my mother suggested we drive around to the Target and shop for a booster seat right then and there. We drove around, settled Miss Boots into a shopping cart, and proceeded to walk towards the entrance when my phone rang. I recognized the number as being the hospital where Sarah receives her treatment, so I answered it, thinking maybe they were going to change her appointment, or something else just as innocent. When I recognized her doctor and the tone of his voice on the other end of the line, I stopped dead in my tracks, still in the parking lot. This being a cold and windy evening, my mom took Sarah inside the store. The doctor informed me that Sarah had contracted AML (Acute Myeloid Leukemia), a secondary cancer which is much more aggressive and has a much lower survival rate, from the treatment for her ALL. He said it is rare that this happens, but that it does happen, and that it is treatable, but that her chances of survival are around 50%. He wanted us to come in the next day to be admitted to the hospital for treatment. I asked him how long, he said to plan for several weeks. I stood there for a second after he hung up, shocked, and in tears. I allowed myself a moment to cry, not wanting to frighten Sarah or my mother when I entered the store. After a minute, I entered the store and found my mother and daughter. I explained to my mother as calmly and as best I could what the doctor had said and what he wanted us to do, so we spent the rest of the shopping trip shopping not only for a booster seat, but for necessities for the hospital as well. My mother kept having to ask if I needed this or that, I was still in such a state of shock, I couldn't think about mundane things like cotton balls and q-tips. All I could think about was my daughter, how much I love her, how unfair it all is. She was supposed to be done in January. And somewhere within me, I had known. I had known, and I had dismissed it as pessimism, and banished the thought. Somewhere, whenever someone would mention the closure of her treatment, or my impending return to work, I felt uneasy, it didn't sit right with me, it didn't ring true that she would really be done, that this would be over in just a matter of months. It didn't feel over to me, and sure enough, here was the call from the doctor telling me that not only was it not over, it was about to get a hell of a lot more complicated. I had a 50/50 shot of keeping my daughter. She was not even four yet, and she has a fifty-fifty shot at surviving.
We completed our shopping trip and headed for home, so that I could pack myself and my daughter up in preparation for a month-long hospital stay. The next morning we checked in to the hospital, and chemo began immediately. Over a ten day course, Sarah received three different chemo drugs, three different antibiotics when the drugs caused fever and diarrhea, the diarrhea became worse with the antibiotics and it got to the point where every single diaper was full of diarrhea and we had to give her pain medication before diaper changes. Sarah spent her fourth birthday in the hospital as well as Christmas and New Year's. A CT scan revealed that Sarah had developed a bacterial infection called pseudopneumosis in her lungs that poses as pneumonia. More antibiotics which she HATES and fights with every dose. At the beginning of this month, we were granted a four day reprieve, and this past Wednesday, Sarah went back into the hospital for round 2 of her aggressive AML treatment. I was there for two days, then a cold I had been fighting got the better of me and I was forced to ask my mother to relieve me as my husband is also ill. I am currently doing everything I can to beat this cold so that I can get back to my daughter and help her through this second course. My mom reports that four days into chemo, she currently has no fevers and no diarrhea, and is eating decently, so that is a prayer answered in my book. She is still fighting her meds, but a session with a child life specialist revealed that Sarah does this because she is scared, and doesn't feel in control of much else right now. She is walking at a hobble right now, so she is being seen by a physical therapist, an occupational therapist for her writing skills, a speech therapist is coming Monday, and pain management and psychology are working closely with her. She is well covered and well taken care of. But so many people can look threatening to a small child, even if they are trying to help. I have tried so hard over the past two years to keep her feeling as normal as I possibly can, so all of these people coming in is like admitting there is something wrong with her. A lot to ask of a four year old. So we are fighting, together, to beat this monster called cancer that has tried to claim my baby not once but twice now. And we will continue fighting. It has been a crazy year, and my life has changed dramatically. I have lost people that mean a lot to me in the process. But my daughter has always been my first priority, and she is still here. She is still here, and the fact that she has so much energy to fight me, her grandmother, and her nurses about her medicine gives me hope.
It has been a year since I began this blog, as part of my New Year's Resolution promises to the committee. The committee has since fallen apart, my life has since fallen apart, so I decided that this year, I am not going to make resolutions that I am not going to even remember two weeks later. I am instead going to simply charge ahead and try to live this year with as much hope, love and gratitude as I can. We don't know how much time Sarah has. I don't know how much longer I get to be Sarah's mother. We could have a day, a week, a month, a year, a decade, a lifetime. We just don't know. That is in God's hands, and we just don't know how long we get. Even after the transplant, there is a chance it might not work. My life has become all about time. I am not thinking about the year ahead, I am thinking about now. Right now, this moment. This is what I have in my hand, this moment. I cannot think about the possibilities right now, the what-ifs, I will drive myself insane. All I have is right now, and right now, my daughter is alive. My daughter is fighting. Right now, my daughter is kicking cancer's ass. So if I resolve to do anything this year, it's to live each day like it's our last, because it very well could be. If this whole thing doesn't go the way we all hope and pray it will, I want Sarah to have had as full a life as I was able to give her. I want to know that I did the best I could by my daughter, that I was the best mother I could have been. I want to know that, either way. When I am planning her party to celebrate a year from transplant, and her high school graduation, her college graduation, her wedding, her baby shower, her grandchild's baby shower, I need to know that we lived every day loving, living, and appreciating each other as best as we know how. The rest will come unbidden and we will take it as it comes.
Monday, November 28, 2011
I know, I know...
Okay, so I realize that I've been kind of a slacker when it comes to this blog thing...I swore I was going to write the whole month of October, waxed intellectual about how much I love the holidays, blah, blah, blah....and then my world literally came crashing down on my head. No worries, the baby is fine, for the most part, and so am I. Sort of. I think.
Personal problems aside, I realized how lucky I am to have even a few people in my life that I can truly count on, because without them, I wouldn't have made it through this. Any of it. The holidays this year are not going to be what I thought they were, but they don't have to suck, either. I can create new traditions with my daughter, delight in her because, truly, she is my reason for living, anyway.
I know, I know, I'm being vague, but it would be in poor taste to explain myself in full detail on the internet, just know that it has taken me this long to say even this much, and that my return to this forum underneath my snazzy new banner (Thanks, April, you're the best!) is a huge step. Okay, it's a little step, but it's huge for me. I realized today that I need to focus more on the little things, the haves rather than the have nots of my life. Eschewing negativity is not a new pursuit for me, but truly being grateful is another matter entirely. My grandmother said something very profound to me tonight. She said something along the lines of, "Don't look to a rich man and compare what you have with what he has. It will only make you miserable. Look to someone who has less than you, and be grateful for what you have." Something like that, (she said it in Spanish) but I found that I should be doing this more often than I do. Yes, it has been a shitty couple of months. It's been a shitty couple of YEARS, if you want to split hairs. But aside from the obvious (I am alive, I breathe, my daughter breathes) I have so much to be grateful for, so many little things that I take for granted every day. Like too much food in the refrigerator, cuz my spoiled ass refuses to eat the same thing twice in one week. Like the fact that my daughter has not only every thing she needs, but most of what she wants (I do say no sometimes, although her room would suggest otherwise). Her complications with her illness, difficult as they are, are NOTHING compared to what some of these other kids go through, and their parents right along with them. Times are hard, and I have a roof over my head, food to eat, a warm safe place to sleep, and my daughter slumbers in peace tonight. Alive, and happy. More than that, I have a family who truly supports me, no matter what. It is enough. It is more than enough. My cup runneth over...
Personal problems aside, I realized how lucky I am to have even a few people in my life that I can truly count on, because without them, I wouldn't have made it through this. Any of it. The holidays this year are not going to be what I thought they were, but they don't have to suck, either. I can create new traditions with my daughter, delight in her because, truly, she is my reason for living, anyway.
I know, I know, I'm being vague, but it would be in poor taste to explain myself in full detail on the internet, just know that it has taken me this long to say even this much, and that my return to this forum underneath my snazzy new banner (Thanks, April, you're the best!) is a huge step. Okay, it's a little step, but it's huge for me. I realized today that I need to focus more on the little things, the haves rather than the have nots of my life. Eschewing negativity is not a new pursuit for me, but truly being grateful is another matter entirely. My grandmother said something very profound to me tonight. She said something along the lines of, "Don't look to a rich man and compare what you have with what he has. It will only make you miserable. Look to someone who has less than you, and be grateful for what you have." Something like that, (she said it in Spanish) but I found that I should be doing this more often than I do. Yes, it has been a shitty couple of months. It's been a shitty couple of YEARS, if you want to split hairs. But aside from the obvious (I am alive, I breathe, my daughter breathes) I have so much to be grateful for, so many little things that I take for granted every day. Like too much food in the refrigerator, cuz my spoiled ass refuses to eat the same thing twice in one week. Like the fact that my daughter has not only every thing she needs, but most of what she wants (I do say no sometimes, although her room would suggest otherwise). Her complications with her illness, difficult as they are, are NOTHING compared to what some of these other kids go through, and their parents right along with them. Times are hard, and I have a roof over my head, food to eat, a warm safe place to sleep, and my daughter slumbers in peace tonight. Alive, and happy. More than that, I have a family who truly supports me, no matter what. It is enough. It is more than enough. My cup runneth over...
Monday, October 3, 2011
Cancer tried to steal my mom...
Okay, so a friend of mine, April McDonald, the very same friend who is responsible for the adorable new look of this here blog, asked me a very important question yesterday...she asked me if I would be willing to write a "guest blog" on her blog page about breast cancer awareness and how breast cancer has affected my life, and how important it is to get checked...which, of course I was more than happy to do...I am reposting the blog I wrote here, in its entirety...
Early Detection and Its Importance...
Hi! This is Adriana Gonzalez. I am a friend of April's, and she asked me to post a guest blog on her page on a subject that is of great importance to her, to me, to all of us, really. October is Breast Cancer Awareness month, which I'm sure you knew, and each year, awareness seems to be growing, which is good. A person is hard-pressed to find someone who's life hasn't been touched by cancer, and I wish cancer would quit touching me and leave me the eff alone already! :D Seriously, though, I say that, because my daughter has leukemia, and has been battling it fiercely with that little attitude of hers for two years now, and my mom is currently six years cancer free from Breast Cancer. I used caps on purpose, because it is that big of a deal. I could rattle off streams of statistics, but numbers are just that. Numbers. The truth is, that in spite of the staggering number of lives that are lost to this disease each year, the only number that will matter to you and yours is one: the number of people in YOUR life who are afflicted by it.
My mother was diagnosed in 2005. While this is staggering news for anyone, it was especially so for me. A little background: My immediate family is relatively small. My parents divorced when I was four, and my dad hasn't really been all that involved, so it's pretty much just the three of us, my mom, my brother, who is two years my junior, and me. My brother at that time had just come off a tour of duty in Aghanistan, which was nerve-wracking enough for our miniscule little family, to say the least. He made it back safely, with eight men underneath him, a highly decorated Marine Corps Sergeant. Things were just starting to settle down, and now this. Now, a little background on my mother. My mother is, by nature, something of a worry wart. She stresses out easily, and she is paranoid to the point of extreme caution, but not excessively so. The upside to this, is she is extremely good at planning, and she takes EXCELLENT care of herself. Even before she got sick, she went to the doctor A LOT. Not excessively, in a hypochondriac fashion, but when there was cause for concern, no one had to convince her to go (like, they do for some people, like, ahem! me, for example...). The day she told me, I was about to go out with a friend of mine for coffee, and she told me nonchalantly, as though nothing in the world were wrong, that she had to tell me something. Now, being her only daughter, and one of her only two children, I knew something was wrong immediately. When she said the word cancer, I immediately felt my eyes well up. Cancer is a scary word, an even scarier disease, and my mother was all I had. I didn't have a husband at that time, much less a child, and my mother and I are extremely close. In that moment, my immediate thoughts were that I would not be able to survive without her, that I didn't want to. So I asked more questions. She told me that she caught it early, at stage 0, which gave her very good odds. Finally, her "paranoia" served a purpose. It saved her life.
Not to say the following months were easy. She had surgery to remove the cancer, surgery again to reconstruct her breast, and both times she needed to be monitored at home afterward, bandages changed, wounds cleaned, and my brother and I split the duty evenly, We didn't sit down and map it out, we just both knew it had to be done, we would both get up at the same time, and one or the other of us would send the other back to bed. My mother says I surprised her in that time, because as a sensitive kid (e.g. a "crier"), she underestimated me and didn't think I would be able to handle it. To be honest, I surprised myself. She went through radiation treatments for awhile, which made her sick, took her appetite, made her irritable, and yes, I'll say it, sometimes, just downright unreasonable. But I sucked it up and did what had to be done. I even subbed for her class the entire time she was out! She's my mother. She's all I have, and she would do the same for me in a heartbeat, and has.
The moral of the story is, early detection is key. Early detection saved my mother's life. Early detection meant my mother got to dance at my wedding, sit at my bedside while I lost three babies in two years, witness the birth of my beautiful baby girl, spoil the crap out of said baby girl, and now she gets to be by my side and support me yet again while my daughter fights her own cancer, not to mention that she can provide me invaluable details about how my daughter is feeling that Sarah herself cannot provide at three years old (although anyone who knows Sarah knows she is no slouch in the verbal department! lol). It is because of my mother's experience that she convinced me to go over the pediatrician's head when the moron told me the baby was fine and I was "over-mothering". Cancer tried to steal my mom, and early detection and early treatment gave her back to me.
Believe me, I know putting your boobs in a vice is no one's idea of a good time, but it is so important. SO, SO IMPORTANT!!!! Every woman is someone's daughter, someone's sister, someone's girlfriend, someone's wife, someone's best friend, someone's mother. SOMEONE, SOMEWHERE wants you on this planet, and would be devastated if you weren't here anymore. Get 'em checked, Ladies. You are SO worth it!!! :)
Thank you for reading!
Adriana
P.S. A few pics...
Early Detection and Its Importance...
Hi! This is Adriana Gonzalez. I am a friend of April's, and she asked me to post a guest blog on her page on a subject that is of great importance to her, to me, to all of us, really. October is Breast Cancer Awareness month, which I'm sure you knew, and each year, awareness seems to be growing, which is good. A person is hard-pressed to find someone who's life hasn't been touched by cancer, and I wish cancer would quit touching me and leave me the eff alone already! :D Seriously, though, I say that, because my daughter has leukemia, and has been battling it fiercely with that little attitude of hers for two years now, and my mom is currently six years cancer free from Breast Cancer. I used caps on purpose, because it is that big of a deal. I could rattle off streams of statistics, but numbers are just that. Numbers. The truth is, that in spite of the staggering number of lives that are lost to this disease each year, the only number that will matter to you and yours is one: the number of people in YOUR life who are afflicted by it.
My mother was diagnosed in 2005. While this is staggering news for anyone, it was especially so for me. A little background: My immediate family is relatively small. My parents divorced when I was four, and my dad hasn't really been all that involved, so it's pretty much just the three of us, my mom, my brother, who is two years my junior, and me. My brother at that time had just come off a tour of duty in Aghanistan, which was nerve-wracking enough for our miniscule little family, to say the least. He made it back safely, with eight men underneath him, a highly decorated Marine Corps Sergeant. Things were just starting to settle down, and now this. Now, a little background on my mother. My mother is, by nature, something of a worry wart. She stresses out easily, and she is paranoid to the point of extreme caution, but not excessively so. The upside to this, is she is extremely good at planning, and she takes EXCELLENT care of herself. Even before she got sick, she went to the doctor A LOT. Not excessively, in a hypochondriac fashion, but when there was cause for concern, no one had to convince her to go (like, they do for some people, like, ahem! me, for example...). The day she told me, I was about to go out with a friend of mine for coffee, and she told me nonchalantly, as though nothing in the world were wrong, that she had to tell me something. Now, being her only daughter, and one of her only two children, I knew something was wrong immediately. When she said the word cancer, I immediately felt my eyes well up. Cancer is a scary word, an even scarier disease, and my mother was all I had. I didn't have a husband at that time, much less a child, and my mother and I are extremely close. In that moment, my immediate thoughts were that I would not be able to survive without her, that I didn't want to. So I asked more questions. She told me that she caught it early, at stage 0, which gave her very good odds. Finally, her "paranoia" served a purpose. It saved her life.
Not to say the following months were easy. She had surgery to remove the cancer, surgery again to reconstruct her breast, and both times she needed to be monitored at home afterward, bandages changed, wounds cleaned, and my brother and I split the duty evenly, We didn't sit down and map it out, we just both knew it had to be done, we would both get up at the same time, and one or the other of us would send the other back to bed. My mother says I surprised her in that time, because as a sensitive kid (e.g. a "crier"), she underestimated me and didn't think I would be able to handle it. To be honest, I surprised myself. She went through radiation treatments for awhile, which made her sick, took her appetite, made her irritable, and yes, I'll say it, sometimes, just downright unreasonable. But I sucked it up and did what had to be done. I even subbed for her class the entire time she was out! She's my mother. She's all I have, and she would do the same for me in a heartbeat, and has.
The moral of the story is, early detection is key. Early detection saved my mother's life. Early detection meant my mother got to dance at my wedding, sit at my bedside while I lost three babies in two years, witness the birth of my beautiful baby girl, spoil the crap out of said baby girl, and now she gets to be by my side and support me yet again while my daughter fights her own cancer, not to mention that she can provide me invaluable details about how my daughter is feeling that Sarah herself cannot provide at three years old (although anyone who knows Sarah knows she is no slouch in the verbal department! lol). It is because of my mother's experience that she convinced me to go over the pediatrician's head when the moron told me the baby was fine and I was "over-mothering". Cancer tried to steal my mom, and early detection and early treatment gave her back to me.
Believe me, I know putting your boobs in a vice is no one's idea of a good time, but it is so important. SO, SO IMPORTANT!!!! Every woman is someone's daughter, someone's sister, someone's girlfriend, someone's wife, someone's best friend, someone's mother. SOMEONE, SOMEWHERE wants you on this planet, and would be devastated if you weren't here anymore. Get 'em checked, Ladies. You are SO worth it!!! :)
Thank you for reading!
Adriana
P.S. A few pics...
My brother, Ramon, me, and my mother, Gloria, on my wedding day, May 20, 2006
My daughter, Sarah, me, and my mother, Gloria, on my 32nd birthday, June 13, 2011, with the special Jell-o Cake she used to make every birthday when Ramon and I were kids! I think he ate about half...
Early detection gave me these moments with my mother...GET CHECKED!!!
Saturday, October 1, 2011
Halloweenie type-blog
Okay, so the four of you who actually read and follow this blog may have noticed that I have a fancy-pants new Halloween banner, designed by none other than the fabulous Mrs. April McDonald, fabulous friend and owner of SHEflops (http://www.sheflops.blogspot.com)! So I wrote this heavy blog the other day, and when I went back to edit, I looked at the cute little witch and thought she should have something light and Halloweenie underneath her, so here it is, a light, meaningless, Halloweenie-type blog...
So, today is October 1, and my mother has already started decorating the inside of the house, as much as she can around the papier mache mess that is our dining room table at the moment. Our dining room table is a papier mache mess because Mike needs papier mache skeleton heads and pumpkins to concoct his fabulous front-yard masterpiece for this year. For those of you who don't know, we live in a corner house. This means that not only is our house a prime spot for trick-or-treaters, but our house is highly visible from the street, and Mike loves to get his Rick Baker on, so every year, he builds this amazing front yard display that draws people for miles. Every year, he outdoes himself...this year is sure to be no exception, but such an alluring display takes time and effort, so we got an early start this year...I will post pics as they are available...but in the meantime, here was last year's display...
This was a wizard that my talented hubby made "animatronic" using the guts from an old fan and various pieces from old Halloween costumes and decorations from previous years...yes, seriously...
This was the rest of the yard, in front of the house, which he tries to make "kid-friendly" for the smaller kids so they don't get scared to come up to the front of the house...
So, that was last year...this year, in addition to making sticky papier mache heads and pumpkins with the kids for the display, I have also been busy crocheting, because Sarah decided that this year she wants to be a clown fish. Why, I have no idea...She loves Nemo as much as she loves all of her Disney movies, but I don't know that I would call it her favorite. So, I got right to work designing and crocheting a clown fish hat, because all of my costume designs for the crazy costumes this child comes up with that, of course, can not be found in any store or online, are based on one thing: WARMTH...we live in Southern California, which means that Autumn is a relative term denoting the general time of year and not necessarily the temperament of the weather. It was 86 degrees today. I am running the air conditioner right now praying that this child goes to sleep sometime soon. But come October 31, it's gonna get COLD...and I don't just mean cold, I mean ridiculously, "now, where did I leave that parka?" cold...and every year, I take the kids out in this cold in the spirit of not being the crazy mom who denies her children one of the pleasures of childhood because I'm too overprotective, and every year, either they end up sick, or I do and THEN they do...not fun...so instead of being the crazy mom who bans Halloween because it's too damn cold outside, I am the crazy mom who makes the kids wear sweaters, under or over their costumes, it's up to them. If it's one of those jumpsuit type costumes, then I layer them up with thermals and undershirts, a la Christmas Story ("I can't put my arms down!") So designing Sarah's costume the last two years has actually been good for me because I could give my little girl exactly what she wanted while still getting what I wanted.
Last year, she decided around this time that she wanted to be Coraline. Of course, I have yet to see a Coraline costume on or off line, so I set about to make one. Easy enough: Raincoat, sweater, jeans, rain boots, and a blue wig...only she wouldn't keep the wig on because it was "itchy". So I set about designing a sort of hat/wig combo, (which took hours) and it actually came out pretty cool, and she loved it...for about 30 seconds...she marched about the room, went to Ama's room to look at herself in the mirror, preened for a bit, and then threw the hat on the floor and declared that she didn't want to be Coraline anymore, she wanted to be Olivia. Sigh. I kept asking her again over the next couple of days, whether or not she would reconsider, but that would have been too easy. Nope. She absolutely refused to wear the Coraline costume. And since it was her first real time trick or treating (the year before her counts were low so we were forced to stay indoors), I begrudgingly obliged. I went to the fabric store, bought some red felt, and sewed a simple red jumper; painted red stripes on one of her turtlenecks with a fabric marker; made her a headband with pointy, Olivia-esque ears, which I inserted into a pink beanie; sewed a pair of too-large red and white striped tights to fit her, and finished it off with pink ballet slippers and a child's procedure mask with a snout drawn on it in crayon...she looked adorable, although most people thought she was a bunny, which seemed to upset her just a little...but she got a ton of candy, and she got to go around the block, plus she was super warm in her turtleneck, tights and several undershirts I layered underneath the turtleneck! Here is a picture...
So this year, I told Miss Bossy Boots that she needed to pick a costume and stick to it. She is adamant (so far) that she wants to be a clown fish, so I spent an entire day making this:
And she loves it! Wore it all day! Yay! Now to figure out the rest...so yesterday, Mike and I went running around with Sarah and Azrael after we picked Azrael up from school, and we picked up a pair of white sweats, because Mike said it would be much cooler if we tie-dyed them orange so they would have the subtle striping instead of just buying plain old orange sweats...so we went to the store to buy the sweats, and my daughter, who takes after me in almost NO way whatsoever, spends the entire time doing this:
She walked around the entire store so enraptured in her book that she was running into the racks! Then we ran the rest of our errands, and I spent my Friday night doing this:
You would think that after a few HOURS, her sweats would now be a vibrant, clown-fishy orange, right? Nope...her sweats are a sickly peachish color...so tomorrow, Daddy and I are going to look for orange paint for the air brush, or orange sweats as a backup...and if none of that works, we are going to break down and just buy this:
In case you can't tell, this is a PREMADE clownfish costume that according to my research did not exist two weeks ago...$20 at Big Lots...but then what do we do with the fabulous clownfish hat Momma made? Oh, well...
I for one am looking forward to this holiday season...already I have started making my daughter's halloween costume, eaten WAY too much Halloween candy, watched the Great Pumpkin about 14 million times, and am greatly looking forward to toasting pumpkin seeds with the kids as I do every year....the air is getting cooler (somewhat) and the time is drawing nigh for everyone to draw closer together...as this year draws slowly to a close, I realize that we have much to be thankful for, and I for one am looking forward to celebrating this upcoming holiday season as always...surrounded by those I love most.
So, today is October 1, and my mother has already started decorating the inside of the house, as much as she can around the papier mache mess that is our dining room table at the moment. Our dining room table is a papier mache mess because Mike needs papier mache skeleton heads and pumpkins to concoct his fabulous front-yard masterpiece for this year. For those of you who don't know, we live in a corner house. This means that not only is our house a prime spot for trick-or-treaters, but our house is highly visible from the street, and Mike loves to get his Rick Baker on, so every year, he builds this amazing front yard display that draws people for miles. Every year, he outdoes himself...this year is sure to be no exception, but such an alluring display takes time and effort, so we got an early start this year...I will post pics as they are available...but in the meantime, here was last year's display...
This was the rest of the yard, in front of the house, which he tries to make "kid-friendly" for the smaller kids so they don't get scared to come up to the front of the house...
So, that was last year...this year, in addition to making sticky papier mache heads and pumpkins with the kids for the display, I have also been busy crocheting, because Sarah decided that this year she wants to be a clown fish. Why, I have no idea...She loves Nemo as much as she loves all of her Disney movies, but I don't know that I would call it her favorite. So, I got right to work designing and crocheting a clown fish hat, because all of my costume designs for the crazy costumes this child comes up with that, of course, can not be found in any store or online, are based on one thing: WARMTH...we live in Southern California, which means that Autumn is a relative term denoting the general time of year and not necessarily the temperament of the weather. It was 86 degrees today. I am running the air conditioner right now praying that this child goes to sleep sometime soon. But come October 31, it's gonna get COLD...and I don't just mean cold, I mean ridiculously, "now, where did I leave that parka?" cold...and every year, I take the kids out in this cold in the spirit of not being the crazy mom who denies her children one of the pleasures of childhood because I'm too overprotective, and every year, either they end up sick, or I do and THEN they do...not fun...so instead of being the crazy mom who bans Halloween because it's too damn cold outside, I am the crazy mom who makes the kids wear sweaters, under or over their costumes, it's up to them. If it's one of those jumpsuit type costumes, then I layer them up with thermals and undershirts, a la Christmas Story ("I can't put my arms down!") So designing Sarah's costume the last two years has actually been good for me because I could give my little girl exactly what she wanted while still getting what I wanted.
Last year, she decided around this time that she wanted to be Coraline. Of course, I have yet to see a Coraline costume on or off line, so I set about to make one. Easy enough: Raincoat, sweater, jeans, rain boots, and a blue wig...only she wouldn't keep the wig on because it was "itchy". So I set about designing a sort of hat/wig combo, (which took hours) and it actually came out pretty cool, and she loved it...for about 30 seconds...she marched about the room, went to Ama's room to look at herself in the mirror, preened for a bit, and then threw the hat on the floor and declared that she didn't want to be Coraline anymore, she wanted to be Olivia. Sigh. I kept asking her again over the next couple of days, whether or not she would reconsider, but that would have been too easy. Nope. She absolutely refused to wear the Coraline costume. And since it was her first real time trick or treating (the year before her counts were low so we were forced to stay indoors), I begrudgingly obliged. I went to the fabric store, bought some red felt, and sewed a simple red jumper; painted red stripes on one of her turtlenecks with a fabric marker; made her a headband with pointy, Olivia-esque ears, which I inserted into a pink beanie; sewed a pair of too-large red and white striped tights to fit her, and finished it off with pink ballet slippers and a child's procedure mask with a snout drawn on it in crayon...she looked adorable, although most people thought she was a bunny, which seemed to upset her just a little...but she got a ton of candy, and she got to go around the block, plus she was super warm in her turtleneck, tights and several undershirts I layered underneath the turtleneck! Here is a picture...
and another...
and one more with Daddy...
You would think that after a few HOURS, her sweats would now be a vibrant, clown-fishy orange, right? Nope...her sweats are a sickly peachish color...so tomorrow, Daddy and I are going to look for orange paint for the air brush, or orange sweats as a backup...and if none of that works, we are going to break down and just buy this:
I for one am looking forward to this holiday season...already I have started making my daughter's halloween costume, eaten WAY too much Halloween candy, watched the Great Pumpkin about 14 million times, and am greatly looking forward to toasting pumpkin seeds with the kids as I do every year....the air is getting cooler (somewhat) and the time is drawing nigh for everyone to draw closer together...as this year draws slowly to a close, I realize that we have much to be thankful for, and I for one am looking forward to celebrating this upcoming holiday season as always...surrounded by those I love most.
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! :)
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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