There was a time, not too long ago, that my only concern regarding my baby girl's eyes was whether or not they will stay so perfectly blue, like her daddy's. But, last week, I realized very quickly that the color of Aria's eyes was much less important than what could be hiding behind them.
After the flash went off while I was taking a photo of my little princess, a white glow appeared in her right eye, sending up a huge red flag for conditions such as Coat's Disease or retinoblastoma. A quick call to the pediatrician had us squeezed in for an appointment first thing in the morning to see if anything was blocking the normal, red reflection we're used to seeing in photos. While the pediatrician didn't find anything concerning, the color in the picture was obvious enough that she urged us to follow up with an eye specialist the next day. And that's where my last post ended.
My heart raced as I filled out Aria's medical history forms. My ever-curious baby was wide awake, exploring the office with Jimmi, who was loving all the attention she was getting from the office staff and other waiting room inhabitants. It wasn't long before we were called to a lowly lit room where Jimmi was asked to sit in the patient's chair and hold our baby down, flat on his lap. I couldn't watch as happy coos instantly turned to piercing screams that became louder and more intense as each one of four drops hit her tiny eyes. When the torture had ended, I took my sweaty, red-faced, tear-streaked little girl into my arms and rocked her until she was settled.
We were sent to a small waiting area to allow Aria's pupils time to dilate before the doctor could look at them. The baby seemed to have forgotten all about the Hell she'd been through just minutes before, as she looked around at the pictures on the walls, giggling and "talking" happily to all of them.
And then the doctor called her name.
I suddenly felt sick at the possibly of hearing very bad news and I silently begged for my daughter to stay healthy and allow me to take any health problems on myself, in her place. Fears of my own 3-month CT scans were trivial compared to the absolute terror in my heart at that moment.
"So what brings you in today?" asked the friendly-faced Dr. K, who looked to be about my age, making me feel slightly inferior. But that was in my own head. I swiped to find the glowing-eye photo and handed her my phone. "This," I said, pointing. I saw the doctor's expression change for an instant as soon as she saw the problem but she composed herself quickly, for our benefit, and said, "Ok, let's take a look."
I don't think I breathed at all during Aria's exam. I watched the doctor's face for any signs of horror as she shined various lights into my daughter's eyes while holding colorful, jingly toys to keep the baby focused and her body calm. Nothing. Not one readable sign. I couldn't tell what she was seeing and I was too afraid to ask. When she hovered over Aria's right eye just a little too long for my comfort level, I was convinced we were in trouble.
The doctor stood up, removed her mining light, head contraption, and smiled sweetly. "Her eyes are perfect," she said. At that point I finally exhaled and the build-up of tears flooded my eyes and poured down my face. "I'm sorry," I said, accepting the tissue the doctor was holding in front of me. "It's perfectly fine," she said. "They're happy tears." I nodded and squeezed my little girl, who was oblivious to the entire fiasco. Then Dr. K continued, "I want you to know you did exactly the right thing. If you see a glow like that again, in the future, you should bring her back. No go enjoy her and those beautifully perfect eyes!"
There are plenty of blogs out there about the hellish world of cancer. But what happens to the "survivor" once the treatments are over and the disease appears to be gone? What does it feel like to live AFTER cancer? You may be surprised how scary it is to plan anything at all, let alone a major life-changer like the one we're about to take on...
Friday, September 5, 2014
Thursday, August 28, 2014
Know the Glow
I read an article that was posted online a few weeks ago. It was a true story about a woman who posted her child's photo on Facebook and a family friend or relative noticed a strange whitish-yellow glow in one of the kid's eyes. She immediately contacted the mom and urged her to take the child to the doctor. That strangely colored glow, unlike red eyes, which are commonly caused by flash photography, could indicate a number of serious eye diseases, including Coat's Disease and retinoblastoma, or cancer of the retina, which is the most common malignant eye tumor in children. The mom listened to the advice and, as it turned out, her child almost lost his eye to that cancer. Undetected, it could've spread to his brain and taken his life. Like most things I read, the story found its way into the recesses of my brain, where it could rest until the information was needed again.
I never thought I would need it so soon, for a reason so close to home.
If you know me, you know I like to post pictures of my 3 month-old, Aria, every day. She has so many adorable expressions and outfits that it's very hard for me not to share. Generally, I'll prop her up in the corner of the chair in her room and swivel it so the natural light from the window shines on her, making the flash on my phone unnecessary.
But, two days ago, Aria was cranky and wouldn't cooperate with our daily shoot schedule. It wasn't until I brought her downstairs that she cheered up and allowed me to shove the camera into her face. As the shades in our family room were closed to allow the boys a glare-free view of the TV, the flash went off to light up the subject of my photo. My heart stopped when I saw the frozen image appear on the screen.
Oh. My. God.
THE GLOW!
I couldn't speak right away. The pounding in my chest moved to my head and I felt like I'd been punched in the stomach. "That's not good," I said out loud, causing Jimmi to shoot me a puzzled look. I showed him the picture and he made a joke about Aria being possessed, and couldn't understand why I wasn't laughing with him. "That could mean something really bad," I explained quietly so the boys wouldn't overhear. I told Jimmi about the article I'd read and then I shrugged it off, along with the photo, assuming I was just overreacting. Seriously, it can't really be possible to diagnose eye cancer from a photo.
I allowed my brain to forget all about the glowing eyes until yesterday, when I was going through the photo album on my phone, deleting anything blurry or unimpressive. I almost hit the trash can icon on the bottom of my screen to remove the picture with weird colors in my princess's eyes for good, but the nagging voice in my head stopped me. "Call the pediatrician," it said. I picked up the phone and hung up before I could finish dialing. They're gonna think I'm nuts, I thought to myself. But the voice came back again, "You need to call the pediatrician." I knew it wouldn't quiet down until I obeyed, so I made the call.
"Hi, I took a picture of my baby and the flash made one of her eyes glow like a whitish-yellow. I read an article that the color could indicate some pretty serious conditions so I wanted to give you a call." The nurse put me on hold and I could almost hear her laughing at me as she told the other nurses about the crazy caller on the other end of the line. And then she came back to the phone, "Hi. I spoke to the doctor and she wants to see Aria as soon as possible. Can you come in tomorrow morning?"
What?
They want to see her first thing in the morning? Clearly, that's not a positive sign. I confirmed a time for our appointment and hung up the phone. I stood, motionless, for a few minutes before doing what I knew I shouldn't.
I Googled it.
I can't even begin to explain the fear that mounted as I scanned the results of my query. Knowtheglow.org popped up all over the place, with photos of babies and children with eyes that looked just like Aria's. The website warned parents not to ignore the visual symptom that has led to the diagnoses of 80% of children with Coat's Disease or retinoblastoma. Upon further research, Wikipedia informed me that one of the treatments for retinoblastoma includes chemotherapy. The thought of my tiny baby having to endure chemo caused my head to become fuzzy and my knees to buckle. I had to grab onto the counter to keep myself from falling. I was sick to my stomach as I told Jimmi what I'd just read. Always the calm to my storm, he insisted that I keep from worrying until the doctor checks her in the morning.
I changed Aria into her pajamas and gave her a bottle before bed last night. She fell soundly asleep in my arms almost immediately, but I couldn't put her down. I wouldn't put her down. I held my miracle baby close to my heart and rocked her for over an hour. I listened to her sigh happily while I watched her lips move as she sucked an imaginary nipple in her sleep.
I didn't sleep at all.
I woke up every hour, hoping it would be time to get ready to leave for our appointment. The time dragged on and on until, finally, the sun came up and I could get out of bed. Soon, I told myself. We'd have the answers soon.
We arrived exactly on time for our 9:50 am appointment and we made ourselves comfortable in the waiting room. Ten minutes turned to 30, and we still hadn't been called to an exam room. At the 45 minute mark, Aria had had enough and started to cry. "Can you tell me how much longer it'll be?" I begged the receptionist, who shrugged unsympathetically and replied, "There's only one doctor seeing the sick visits. She's going as fast as she can."
Damn you, last week of summer vacation!
Then we heard a voice call, "Eileen?" Silence. "Eileen?" More silence. I was already on my last nerve as I realized the medical technician was actually calling Aria by her middle name, which she had done once, in the past, and expected us to answer. I jumped up, baby in my arms, hoping Jimmi would follow, and barked, "Are you calling Aria by her middle name again?" She looked at me like I had horns on top of my head and asked, "Eileen?" What is WRONG with the woman? "Her name is Aria, not Eileen. Eileen is her middle name." She glared at me, not understanding my problem, "But it's still her name," she insisted. I couldn't play nicely, "It's her middle name. Her name is Aria. Do you answer to your middle name?" She responded with a bit too much attitude, "Eileen is easier to pronounce. Would it be better if I called her 'Kane'?" I lunged forward, then realized the baby would hinder me from strangling this bitch, "Yes! If you had called our last name it would've made more sense. At least we'd have known you were speaking to us!" Are we really having this discussion? Who calls patients by only their middle name and expects them to answer? She got sassy with me, "Eileen Aria. Kane Eileen. Kane Eileen Aria. Is that better?" I was silently counting to 10 to avoid a murder charge. "So, what's going on with AAAAAARRRIIIAAAA today?" she asked, dragging her name out like a snotty teenager. I chose to be an adult and just answer the question, "I took a picture of her and the flash made her eye glow white. I know there are some eye conditions that can cause that and wanted to have her checked." The tech stared at me blankly then glanced at Aria's perfect, blue eyes. "They look fine to me," she said snidely. I explained, "It only appears in photos." She was visibly confused. "You took a picture of it?" I whipped out my phone and handed it over. "So what's wrong with her eyes?" Oh, how I just wanted the damn doctor to save us from this stupidity! "Look!" I pointed. She still had no idea, "Her eye actually looked like this?"
AAAAARRRRRGGGGGHHHHH!!!
"No! It's the way the flash reflected in the retina! The white glow indicates a problem!" She finally caught on, "Oh. I see. Ok, the doctor will be right in." And she sailed out to the hallway.
Aria was handling the long wait surprisingly well until we hit the 75 minute mark and she began to scream bloody murder. "She's exhausted," I told Jimmi, "and she's getting hungry. But if I feed her she'll fall asleep and the doctor needs to see her eyes." Another five minutes passed and I opened the door, hoping anyone other than the nasty, moronic tech would be standing there. Luckily, Aria's primary doctor, who was seeing well-checks today, was in the hall. "What's going on?" she asked when she saw me. "She had a white glow in a photo and we've been waiting over an hour to be seen." She looked around then asked a nurse who was seeing sick visits. After she got an answer she turned to me and said, "I just looked at her eyes a few weeks ago and they were fine, so I'm sure you don't have to worry. If Dr. R isn't with you in a few minutes I'll come in and check them again myself." I thanked her and closed the door.
Aria continued to scream until, finally, the doctor appeared. "Poor baby!" she said as she entered. "Why are you so upset?" I couldn't help myself when I replied, "Because she's been waiting here for almost ninety minutes!" We got down to the issue immediately and I showed her the picture of Aria's glowing eye. The doctor's face showed obvious concern. "Ok, let me check her out. It's the right eye, correct?" she asked as she looked at the picture again. I nodded as Jimmi held the wailing baby. The doctor did her best to look into Aria's eyes with her light but they would squeeze tightly each time she'd let out a piercing cry. I shook toys in front of her face and was able to get her to stop screaming long enough for a quick peak. "They both look like they're reflecting red, which is good," said the doctor. She could tell I wasn't convinced. "Do you want to see?" she asked. Of course I did. She told me what to look for then handed me the special light. My baby was crying so hard, by that point, she wouldn't open her eyes at all. I made her a bottle, hoping it would calm her down enough to allow me to see for myself. And it did. I looked once, then twice, then a third time. The only color I could see, as I peered through the tool, was red.
But what about the picture?
"I really don't see anything of concern," said the doctor, "but, because of how her eye looks in that picture, I think she should see a specialist, just to be sure." I agreed. She continued, "Based on what I see, I'm not going to call and have them squeeze you in today, but I think she should be seen within the week. Don't wait longer than that." She knew what I was thinking. "Would you like me to have my nurse schedule something for you today or tomorrow?" Oh, thank you! "Tomorrow, please," I replied.
At 12:30 tomorrow, my sweet baby will be examined by a pediatric eye physician to determine whether or not she has any of 15 conditions that could lead to blindness, loss of an eye or, God forbid, death. I'm thankful her initial check seemed normal but, based on my own health issues, I know how quickly a diagnosis can change.
Please send positive thoughts and prayers to my baby girl.
Thank you.
I never thought I would need it so soon, for a reason so close to home.
If you know me, you know I like to post pictures of my 3 month-old, Aria, every day. She has so many adorable expressions and outfits that it's very hard for me not to share. Generally, I'll prop her up in the corner of the chair in her room and swivel it so the natural light from the window shines on her, making the flash on my phone unnecessary.
But, two days ago, Aria was cranky and wouldn't cooperate with our daily shoot schedule. It wasn't until I brought her downstairs that she cheered up and allowed me to shove the camera into her face. As the shades in our family room were closed to allow the boys a glare-free view of the TV, the flash went off to light up the subject of my photo. My heart stopped when I saw the frozen image appear on the screen.
Oh. My. God.
THE GLOW!
I couldn't speak right away. The pounding in my chest moved to my head and I felt like I'd been punched in the stomach. "That's not good," I said out loud, causing Jimmi to shoot me a puzzled look. I showed him the picture and he made a joke about Aria being possessed, and couldn't understand why I wasn't laughing with him. "That could mean something really bad," I explained quietly so the boys wouldn't overhear. I told Jimmi about the article I'd read and then I shrugged it off, along with the photo, assuming I was just overreacting. Seriously, it can't really be possible to diagnose eye cancer from a photo.
I allowed my brain to forget all about the glowing eyes until yesterday, when I was going through the photo album on my phone, deleting anything blurry or unimpressive. I almost hit the trash can icon on the bottom of my screen to remove the picture with weird colors in my princess's eyes for good, but the nagging voice in my head stopped me. "Call the pediatrician," it said. I picked up the phone and hung up before I could finish dialing. They're gonna think I'm nuts, I thought to myself. But the voice came back again, "You need to call the pediatrician." I knew it wouldn't quiet down until I obeyed, so I made the call.
"Hi, I took a picture of my baby and the flash made one of her eyes glow like a whitish-yellow. I read an article that the color could indicate some pretty serious conditions so I wanted to give you a call." The nurse put me on hold and I could almost hear her laughing at me as she told the other nurses about the crazy caller on the other end of the line. And then she came back to the phone, "Hi. I spoke to the doctor and she wants to see Aria as soon as possible. Can you come in tomorrow morning?"
What?
They want to see her first thing in the morning? Clearly, that's not a positive sign. I confirmed a time for our appointment and hung up the phone. I stood, motionless, for a few minutes before doing what I knew I shouldn't.
I Googled it.
I can't even begin to explain the fear that mounted as I scanned the results of my query. Knowtheglow.org popped up all over the place, with photos of babies and children with eyes that looked just like Aria's. The website warned parents not to ignore the visual symptom that has led to the diagnoses of 80% of children with Coat's Disease or retinoblastoma. Upon further research, Wikipedia informed me that one of the treatments for retinoblastoma includes chemotherapy. The thought of my tiny baby having to endure chemo caused my head to become fuzzy and my knees to buckle. I had to grab onto the counter to keep myself from falling. I was sick to my stomach as I told Jimmi what I'd just read. Always the calm to my storm, he insisted that I keep from worrying until the doctor checks her in the morning.
I changed Aria into her pajamas and gave her a bottle before bed last night. She fell soundly asleep in my arms almost immediately, but I couldn't put her down. I wouldn't put her down. I held my miracle baby close to my heart and rocked her for over an hour. I listened to her sigh happily while I watched her lips move as she sucked an imaginary nipple in her sleep.
I didn't sleep at all.
I woke up every hour, hoping it would be time to get ready to leave for our appointment. The time dragged on and on until, finally, the sun came up and I could get out of bed. Soon, I told myself. We'd have the answers soon.
We arrived exactly on time for our 9:50 am appointment and we made ourselves comfortable in the waiting room. Ten minutes turned to 30, and we still hadn't been called to an exam room. At the 45 minute mark, Aria had had enough and started to cry. "Can you tell me how much longer it'll be?" I begged the receptionist, who shrugged unsympathetically and replied, "There's only one doctor seeing the sick visits. She's going as fast as she can."
Damn you, last week of summer vacation!
Then we heard a voice call, "Eileen?" Silence. "Eileen?" More silence. I was already on my last nerve as I realized the medical technician was actually calling Aria by her middle name, which she had done once, in the past, and expected us to answer. I jumped up, baby in my arms, hoping Jimmi would follow, and barked, "Are you calling Aria by her middle name again?" She looked at me like I had horns on top of my head and asked, "Eileen?" What is WRONG with the woman? "Her name is Aria, not Eileen. Eileen is her middle name." She glared at me, not understanding my problem, "But it's still her name," she insisted. I couldn't play nicely, "It's her middle name. Her name is Aria. Do you answer to your middle name?" She responded with a bit too much attitude, "Eileen is easier to pronounce. Would it be better if I called her 'Kane'?" I lunged forward, then realized the baby would hinder me from strangling this bitch, "Yes! If you had called our last name it would've made more sense. At least we'd have known you were speaking to us!" Are we really having this discussion? Who calls patients by only their middle name and expects them to answer? She got sassy with me, "Eileen Aria. Kane Eileen. Kane Eileen Aria. Is that better?" I was silently counting to 10 to avoid a murder charge. "So, what's going on with AAAAAARRRIIIAAAA today?" she asked, dragging her name out like a snotty teenager. I chose to be an adult and just answer the question, "I took a picture of her and the flash made her eye glow white. I know there are some eye conditions that can cause that and wanted to have her checked." The tech stared at me blankly then glanced at Aria's perfect, blue eyes. "They look fine to me," she said snidely. I explained, "It only appears in photos." She was visibly confused. "You took a picture of it?" I whipped out my phone and handed it over. "So what's wrong with her eyes?" Oh, how I just wanted the damn doctor to save us from this stupidity! "Look!" I pointed. She still had no idea, "Her eye actually looked like this?"
AAAAARRRRRGGGGGHHHHH!!!
"No! It's the way the flash reflected in the retina! The white glow indicates a problem!" She finally caught on, "Oh. I see. Ok, the doctor will be right in." And she sailed out to the hallway.
Aria was handling the long wait surprisingly well until we hit the 75 minute mark and she began to scream bloody murder. "She's exhausted," I told Jimmi, "and she's getting hungry. But if I feed her she'll fall asleep and the doctor needs to see her eyes." Another five minutes passed and I opened the door, hoping anyone other than the nasty, moronic tech would be standing there. Luckily, Aria's primary doctor, who was seeing well-checks today, was in the hall. "What's going on?" she asked when she saw me. "She had a white glow in a photo and we've been waiting over an hour to be seen." She looked around then asked a nurse who was seeing sick visits. After she got an answer she turned to me and said, "I just looked at her eyes a few weeks ago and they were fine, so I'm sure you don't have to worry. If Dr. R isn't with you in a few minutes I'll come in and check them again myself." I thanked her and closed the door.
Aria continued to scream until, finally, the doctor appeared. "Poor baby!" she said as she entered. "Why are you so upset?" I couldn't help myself when I replied, "Because she's been waiting here for almost ninety minutes!" We got down to the issue immediately and I showed her the picture of Aria's glowing eye. The doctor's face showed obvious concern. "Ok, let me check her out. It's the right eye, correct?" she asked as she looked at the picture again. I nodded as Jimmi held the wailing baby. The doctor did her best to look into Aria's eyes with her light but they would squeeze tightly each time she'd let out a piercing cry. I shook toys in front of her face and was able to get her to stop screaming long enough for a quick peak. "They both look like they're reflecting red, which is good," said the doctor. She could tell I wasn't convinced. "Do you want to see?" she asked. Of course I did. She told me what to look for then handed me the special light. My baby was crying so hard, by that point, she wouldn't open her eyes at all. I made her a bottle, hoping it would calm her down enough to allow me to see for myself. And it did. I looked once, then twice, then a third time. The only color I could see, as I peered through the tool, was red.
But what about the picture?
"I really don't see anything of concern," said the doctor, "but, because of how her eye looks in that picture, I think she should see a specialist, just to be sure." I agreed. She continued, "Based on what I see, I'm not going to call and have them squeeze you in today, but I think she should be seen within the week. Don't wait longer than that." She knew what I was thinking. "Would you like me to have my nurse schedule something for you today or tomorrow?" Oh, thank you! "Tomorrow, please," I replied.
At 12:30 tomorrow, my sweet baby will be examined by a pediatric eye physician to determine whether or not she has any of 15 conditions that could lead to blindness, loss of an eye or, God forbid, death. I'm thankful her initial check seemed normal but, based on my own health issues, I know how quickly a diagnosis can change.
Please send positive thoughts and prayers to my baby girl.
Thank you.
Tuesday, August 19, 2014
ALS Ice Bucket Challenge
Unless you've been stranded on a remote island, without access to TV, newspapers, radio, texts, phone calls, or internet access, you've definitely found yourself drowning in videos of everyone from your next door neighbor's kid to Oprah Winfrey dousing themselves in buckets of ice water to raise money and awareness for ALS, or Lou Gehrig's Disease. Of course, Charlie Sheen took the stunt to another level, dumping $10,000 in cash over his head, which he plans to donate to the cause.
From what I understand, if you're nominated by a friend or family member to take The ALS Ice Bucket Challenge, you either need to subject yourself to the torture of a freezing cold splashdown AND donate $10 to ALS, or keep warm and cozy and donate $100 instead. Somewhere along the line the terms have gotten confused and some accepting participants have come to the conclusion that, if they take the plunge, they aren't required to donate money. Tell me, how is this helping anyone? But, no matter. Obviously, the confused individuals haven't hurt the game much since over $15,000,000 has been raised for ALS in the last two weeks.
Yes, you've read that correctly.
FIFTEEN MILLION DOLLARS.
Here's where my teeth begin to clench and my hands ball up into tight little fists.
Before I start my rant, I'd like to state, for the record, that I'm thrilled that a gimmick that was so simple took off and raised so much money and awareness for a great cause. ALS is a horrible, degenerative disease and anyone living with it, along with their families, deserve a cure that may come from the money that's been pouring in.
But...
As I watch one after another of my Small/Large Cell Neuroendocrine Carcinoma of the Cervix "sisters" suffer and die, the youngest being only 19 years old, I'm left to wonder what kind of internet sensation our small, yet mighty, group of women needs to create in order to fund the research to save our own lives.
Where is our Ice Bucket Challenge?
Of the thousands of cases of cervical cancer each year, only 100 women will be diagnosed with SCCC or LCCC worldwide. Of those cases, only 15 will live to see their next birthday. Of those 15, half may make it another year or more. But this cancer is sneaky. It hides deep in the trenches like a great white shark and, just when you think it's safe to go back into the water...BAM! It shoots up and grabs you tightly in its jaws, shaking your body around like a rag doll until it can no longer fight the beast anymore and finally succumbs to the attack. Most of my friends and family assume that, since I've been seemingly cancer-free for three years, I'm out of the woods. They're wrong.
You are NEVER out of the woods with SCCC/LCCC.
Regular cervical cancer has a clear-cut cause: HPV. There is a test for HPV and, now, a vaccine for HPV. And, when caught early, regular cervical cancer is a very treatable disease. Those rules don't apply to SCCC/LCCC. I've seen my "sisters," who were diagnosed at stage Ia, complete their treatment protocol and find out the cancer has spread throughout their bodies weeks later. No one knows the cause of SCCC/LCCC and they sure as Hell don't know how to treat it. My oncologist's exact words, when giving me the rundown of the hysterectomy, radiation and chemotherapy I'd have to endure were, "We need to throw everything at you and hope something sticks."
That was comforting.
So, why am I telling you all of this? What does it have to do with ALS and its brilliant fund-raising monster?
I don't want to watch any more of my friends die. Period.
It's enough already. We need money for research; we need money for testing; we need money to raise awareness. We need money to let women know they don't have to have a positive HPV test to end up with a cervical cancer diagnosis.
We need money to save our lives.
And here's what hurts. I've seen all of my friends and family who've posted their Ice Bucket videos and sent in their $10 or more, which is awesome. But how many of them actually know anyone suffering from that disease? Yesterday, I shared the link to the fundraising site for MY cancer on Facebook. The cancer my friends and family watched me fight while I tried so desperately to make it to my own wedding. The one that tore my reproductive organs out right before I planned to use them again. The one that left my kids terrified that their mommy was gonna die. I asked my 812 "friends", of whom, I probably actually know about 200, to please give just $10 and then share the link on their pages to help. Of the 200 people I know, 20 liked the post, 14 shared it, and 2 donated to our cause.
TWO.
Tell me, please, how does this make sense? Everyone and their mother is giving to a charity because it's trendy and they want to make a fun video, but do they even understand the disease they're supporting? Have they looked it up to find out what it's all about or are they just jumping on the bandwagon because everyone else is doing it? How should I feel knowing that my life means so little to my friends that they can't spare $10 to try and save it? I know I'm starting to sound a bit emo here, but, seriously?
Let me take this in another direction for a minute.
Robin Williams.
One week ago, a brilliant actor and comedian took his own life. He was suffering from severe depression and, as were were later told, Parkinson's Disease. I believe Facebook was filled with mental illness awareness memes for about a day before the ice buckets washed them all away. Shouldn't Mr. Williams have gotten the same attention and respect? Isn't mental illness a disease that deserves some awareness?
Look, I'm not bashing ALS here. As I've said, they deserve donations just as much as any other charity. All I'm trying to say is that there are other worthy foundations that need money to save lives as well. Can you find it in your hearts to share some of the wealth? Please click the link below.
Thank you.
Tuesday, July 29, 2014
Scan Results
I find blogging slips my mind a lot these days. Aria and the boys consume every minute of every day and I wouldn't have it any other way. Of course, I did have to leave the world of Mommyhood for a few hours to get to the doctor for a mammography, CT scan of my pelvis and chest, and an internal exam of my…well, you know.
Jimmi and I met my mom at the cancer center, which we do every three months, and I shivered as I walked through the door as soon as the familiar smell hit my nose.
It never gets easier.
The combination of latex gloves and hand sanitizer made my stomach churn as I ascended the stairs to the radiology department, where I checked in for my CT scan, filled out the annoying form asking if I'm pregnant (Why, oh, why do I have to fill it out EVERY time when the answer will NEVER change?), and waited for my oral fruit punch contrast to be served in all its strawberry, pink nastiness. As soon as the nurse placed the large, plastic bottle in my hands I left my mom and Jimmi in the waiting room and scooted back downstairs to sneak in the mammography during the hour I had to wait while I drank my sickeningly sweet beverage. "Nah, you can stay up here," I said when my mom asked if I wanted her to join me. "This is the easy one." Then I smiled and bounced down to the land of breast checks.
I was escorted into a locker room to undress from the waist up, then I sat in the chair and sipped my cocktail. "Suzanne?" called the technician and I hopped up and followed her into a small room with a machine designed to crush my boobs until I winced in pain, in order to check for lumps and bumps that don't belong. It's funny to me that, when I asked my oncologist for a prescription for the tit test, he replied, "How old are you? You really don't need to start this until you're forty."
Seriously? By the time I was 36 I'd already been diagnosed with thyroid cancer and one of the rarest types of cervical cancers out there. Why would my age be an issue here?
The tech told me to pull my left arm out of the robe and place my body against the machine. "It's cold!" I jumped back then moved in to try again. I started to sweat with nervous energy and became increasingly aware of the fact that I was not allowed to wear deodorant before this exam. She grabbed my left tata and squeezed it like it was a stress ball. As soon as she was protected behind the glass the machine pressed down, a picture was taken, and I was released. Four different painful positions on each side left my chest red and swollen enough for a dance on the pole. I was escorted back into the locker room to wait for results, which were given immediately after the radiologist perused my films.
I went back to drinking my sugar water while I waited…and waited…and waited. "This is taking too long," I texted my mom in the waiting area upstairs. My palms began to sweat and I could feel my heart beating a little too heavily in my chest. One by one, the other women in the locker room were taken for their tests, sent back in to wait, then handed a clean bill of health and sent on their way.
But I was still there.
Finally the door opened and the familiar tech greeted me with a very solemn expression. She said nothing, but pointed and me and motioned with her index finger to follow her. This can't be good, I thought to myself as I stood up from my seat. And, of course, I was alone. "Is something wrong?" I asked. She didn't answer directly. Instead, she skirted the question by saying, "The doctor needs a few more pictures of your right side. I need to use a different attachment that will spread out the tissue more evenly so she can see it clearly." I had to have more information. "Did she see something in there?" My throat was dry and I wanted to run out of the room and back up to my familiar CT scan, for which I was now late. "She just wants a few more pictures," was all she would tell me.
The small room with the boob-squeezing machine seemed much scarier when I entered it for the second time that morning. My entire body was shaking and, when the technician noticed, I shrugged it off and blamed it on a chill from the air conditioning blasting down upon my naked chest. I had about a minute to text my mom while an extra attachment that would "spread the breast tissue more evenly" was attached. "They need more pictures. I'm scared." I typed. Her response was calm and reassuring, as always, "That's happened to me, too. It's very common." But, for some reason, it didn't help.
"Ok, you can come over here and remove your right sleeve," instructed the technician. I obeyed her command then she grabbed hold of my milk jug and warned, "This is gonna be a bit more uncomfortable than last time. Hold still." I saw stars flashing before my eyes as this woman squeezed and flattened me into a vice that crushed my right mammary like it was juicing an orange. Then, finally, the torture was over. I was sent back to the locker room to await my fate. Seconds turned to minutes but it felt like days before she finally appeared again. This time, she was holding a paper, which she handed to me and said, "Enjoy the rest of your day. See you next year." A quick glance at the X next to, "Normal breast tissue" confirmed that the technician had just given me good news and I allowed myself to enjoy the relief for a few minutes until I redressed my upper half and headed back upstairs for my CT scan, for which I was now very late.
I barely had time to give Jimmi and my mom the results before my name was called again and I was brought to the room of doom. Each time I enter the CT prep room I start to feel sick to my stomach. Waves of nausea rush over me as the memories of being a "cancer patient" flood back into my brain. The situation unfolds the same way each time. I'll give my name, with spelling, and date of birth to the nurse, who will then ask me which arm is best for my IV. I'll expose both to show her that neither would win a prize for easy veins, but request that she not use the only decent one in my right arm because of all the scar tissue it accumulated during my stint as a regular medial pin cushion. She'll look, shake her head and tell me she'll try, but she might not have a choice. A stick or two, if she's having a bad day, and the bitter taste of saline will hit my tongue as the syringe is squeezed into the catheter in my arm before the drip begins. All of that fuss just to prepare me for a quick shot of contrast dye halfway through the scan. The the nurse will ask if I'm cold, bring me a blanket and tell me the tech will be in to get me shortly. I know the drill so well I could probably perform the entire operation myself.
The test itself lasts barely ten minutes, but I get most of my praying for the year done in that short time. "Please, God, let me be ok. Please don't let the cancer come back. Please let me live to watch my kids grow up." Into the machine I go. "Breathe in. Hold your breath," instructs the recorded voice. "Breathe," he commands after the picture is taken. Twice through, then the contrast is injected. Three more pictures and the IV is removed and I'm sent on my way, back downstairs to my gynecological oncologist, Dr. L's office, where I'll hear the results of the CT scan and enjoy the discomfort of an internal examination which, after a month of pelvic radiation, is not the walk in the park is used to be.
My mom, Jimmi and I sat in the third waiting area of the day and my legs bounced nervously. At least I would know soon if I could relax for a few months or not. At the beginning of my post-treatment scan days, I'd have the test on a Monday and have to wait until Friday to hear the results. One time I was having some severe back pain and the doctor sent me for a CT scan and had the report read immediately. Once I knew that was a possibility, there was no going back to the agony of an entire week of waiting.
"Suzanne?" smiled the nurse as she met my gaze. The three of us stood up and followed her through the doors where Nurse L, my favorite one, was sitting. "How's the baby?!" she gushed as I grabbed my phone to display some pictures. "Oh, she's just BEAUTIFUL!" she cooed, and, I had to agree.
We were taken across the hall to the largest and coldest exam room where, after my vitals were recorded, I was told to undress from the waist down. My mom and Jimmi went behind the curtain to give me privacy and I draped a sheet over my lap and told them to come back. Dr. L didn't make us suffer too long before bursting through the door with his mildly cocky, yet likable demeanor. "Scan was normal," he announced without even a "hello." My mom sighed audibly and Jimmi and I smiled with the relief of three more months to enjoy before the next appointment. After some smalltalk about Aria, of course, Dr. L said, "Oh, I gave your name to our public affairs department. They're doing a commercial for the hospital and they asked for interesting and unique cases. I hope you don't mind." Of course, I didn't. I enjoy being different, though, maybe for a less deadly reason. "How many of us do you still have?" I asked cautiously, knowing women with small cell neuroendocrine carcinoma of the cervix are a very rare find. "Well, I've only had five in my entire career. Unfortunately two just passed." I nodded. I knew one of them from my online support group. "But that won't happen to you. You'll be here for a long, long time," he said with positivity I've never heard from him. After all, he's a realist. He deals with cancer every day; he knows the realities of all types, especially an aggressive bastard like mine.
Then it was time to get down to the next moment of dread. I had to warn him that I hadn't done my required snoochie stretching exercises in awhile. I mean, really, who has time to stick a medical dildo into her love canal three times a week with a newborn at home? "Go easy on me with the speculum, please." He shook his head like a disapproving dad and eased the device inside me. I cringed as he slowly opened it up to get a peak at the site of my original cancer, which had been removed three years ago, along with my entire reproductive system. "Looks normal!" he announced and pulled out the vaginal opener. He followed with a quick manual check and closed with, "You NEED to use that dilater. The tightening is only gonna get worse." I nodded with no intent of following orders. I HATE that fucking thing!
As Dr. L wrote in my chart he marveled over the fact that my surgery was performed over three years ago. "Surprised I'm still alive?" I asked, only half-jokingly. "You're doing great," he said. "With most people it comes back within the first year or two. Fewer in years three and four, and, after five years, it'll rarely come back again." He looked at my eyes and knew I was secretly calling him out in my head. "Ok," he said. "You know how aggressive this type of cancer can be, but you're really doing well. I wouldn't worry." So I asked, "When will you change my scans from every three months to every six months?" He looked at my chart again, then at me, then back at my chart and said, "Well, we don't really like to over-scan people because it's not good for you, especially since you'll be with us for the next thirty or forty years." I smiled at his prediction. But then he must've remembered the severity of small cell and added, "I'll see you in three months. We can talk about it again at that point." That was fine with me.
I must say, I never thought I'd live to see 2014, but here I am! And I never ever thought I'd come home to a face like this, but...
Jimmi and I met my mom at the cancer center, which we do every three months, and I shivered as I walked through the door as soon as the familiar smell hit my nose.
It never gets easier.
The combination of latex gloves and hand sanitizer made my stomach churn as I ascended the stairs to the radiology department, where I checked in for my CT scan, filled out the annoying form asking if I'm pregnant (Why, oh, why do I have to fill it out EVERY time when the answer will NEVER change?), and waited for my oral fruit punch contrast to be served in all its strawberry, pink nastiness. As soon as the nurse placed the large, plastic bottle in my hands I left my mom and Jimmi in the waiting room and scooted back downstairs to sneak in the mammography during the hour I had to wait while I drank my sickeningly sweet beverage. "Nah, you can stay up here," I said when my mom asked if I wanted her to join me. "This is the easy one." Then I smiled and bounced down to the land of breast checks.
I was escorted into a locker room to undress from the waist up, then I sat in the chair and sipped my cocktail. "Suzanne?" called the technician and I hopped up and followed her into a small room with a machine designed to crush my boobs until I winced in pain, in order to check for lumps and bumps that don't belong. It's funny to me that, when I asked my oncologist for a prescription for the tit test, he replied, "How old are you? You really don't need to start this until you're forty."
Seriously? By the time I was 36 I'd already been diagnosed with thyroid cancer and one of the rarest types of cervical cancers out there. Why would my age be an issue here?
The tech told me to pull my left arm out of the robe and place my body against the machine. "It's cold!" I jumped back then moved in to try again. I started to sweat with nervous energy and became increasingly aware of the fact that I was not allowed to wear deodorant before this exam. She grabbed my left tata and squeezed it like it was a stress ball. As soon as she was protected behind the glass the machine pressed down, a picture was taken, and I was released. Four different painful positions on each side left my chest red and swollen enough for a dance on the pole. I was escorted back into the locker room to wait for results, which were given immediately after the radiologist perused my films.
I went back to drinking my sugar water while I waited…and waited…and waited. "This is taking too long," I texted my mom in the waiting area upstairs. My palms began to sweat and I could feel my heart beating a little too heavily in my chest. One by one, the other women in the locker room were taken for their tests, sent back in to wait, then handed a clean bill of health and sent on their way.
But I was still there.
Finally the door opened and the familiar tech greeted me with a very solemn expression. She said nothing, but pointed and me and motioned with her index finger to follow her. This can't be good, I thought to myself as I stood up from my seat. And, of course, I was alone. "Is something wrong?" I asked. She didn't answer directly. Instead, she skirted the question by saying, "The doctor needs a few more pictures of your right side. I need to use a different attachment that will spread out the tissue more evenly so she can see it clearly." I had to have more information. "Did she see something in there?" My throat was dry and I wanted to run out of the room and back up to my familiar CT scan, for which I was now late. "She just wants a few more pictures," was all she would tell me.
The small room with the boob-squeezing machine seemed much scarier when I entered it for the second time that morning. My entire body was shaking and, when the technician noticed, I shrugged it off and blamed it on a chill from the air conditioning blasting down upon my naked chest. I had about a minute to text my mom while an extra attachment that would "spread the breast tissue more evenly" was attached. "They need more pictures. I'm scared." I typed. Her response was calm and reassuring, as always, "That's happened to me, too. It's very common." But, for some reason, it didn't help.
"Ok, you can come over here and remove your right sleeve," instructed the technician. I obeyed her command then she grabbed hold of my milk jug and warned, "This is gonna be a bit more uncomfortable than last time. Hold still." I saw stars flashing before my eyes as this woman squeezed and flattened me into a vice that crushed my right mammary like it was juicing an orange. Then, finally, the torture was over. I was sent back to the locker room to await my fate. Seconds turned to minutes but it felt like days before she finally appeared again. This time, she was holding a paper, which she handed to me and said, "Enjoy the rest of your day. See you next year." A quick glance at the X next to, "Normal breast tissue" confirmed that the technician had just given me good news and I allowed myself to enjoy the relief for a few minutes until I redressed my upper half and headed back upstairs for my CT scan, for which I was now very late.
I barely had time to give Jimmi and my mom the results before my name was called again and I was brought to the room of doom. Each time I enter the CT prep room I start to feel sick to my stomach. Waves of nausea rush over me as the memories of being a "cancer patient" flood back into my brain. The situation unfolds the same way each time. I'll give my name, with spelling, and date of birth to the nurse, who will then ask me which arm is best for my IV. I'll expose both to show her that neither would win a prize for easy veins, but request that she not use the only decent one in my right arm because of all the scar tissue it accumulated during my stint as a regular medial pin cushion. She'll look, shake her head and tell me she'll try, but she might not have a choice. A stick or two, if she's having a bad day, and the bitter taste of saline will hit my tongue as the syringe is squeezed into the catheter in my arm before the drip begins. All of that fuss just to prepare me for a quick shot of contrast dye halfway through the scan. The the nurse will ask if I'm cold, bring me a blanket and tell me the tech will be in to get me shortly. I know the drill so well I could probably perform the entire operation myself.
The test itself lasts barely ten minutes, but I get most of my praying for the year done in that short time. "Please, God, let me be ok. Please don't let the cancer come back. Please let me live to watch my kids grow up." Into the machine I go. "Breathe in. Hold your breath," instructs the recorded voice. "Breathe," he commands after the picture is taken. Twice through, then the contrast is injected. Three more pictures and the IV is removed and I'm sent on my way, back downstairs to my gynecological oncologist, Dr. L's office, where I'll hear the results of the CT scan and enjoy the discomfort of an internal examination which, after a month of pelvic radiation, is not the walk in the park is used to be.
My mom, Jimmi and I sat in the third waiting area of the day and my legs bounced nervously. At least I would know soon if I could relax for a few months or not. At the beginning of my post-treatment scan days, I'd have the test on a Monday and have to wait until Friday to hear the results. One time I was having some severe back pain and the doctor sent me for a CT scan and had the report read immediately. Once I knew that was a possibility, there was no going back to the agony of an entire week of waiting.
"Suzanne?" smiled the nurse as she met my gaze. The three of us stood up and followed her through the doors where Nurse L, my favorite one, was sitting. "How's the baby?!" she gushed as I grabbed my phone to display some pictures. "Oh, she's just BEAUTIFUL!" she cooed, and, I had to agree.
We were taken across the hall to the largest and coldest exam room where, after my vitals were recorded, I was told to undress from the waist down. My mom and Jimmi went behind the curtain to give me privacy and I draped a sheet over my lap and told them to come back. Dr. L didn't make us suffer too long before bursting through the door with his mildly cocky, yet likable demeanor. "Scan was normal," he announced without even a "hello." My mom sighed audibly and Jimmi and I smiled with the relief of three more months to enjoy before the next appointment. After some smalltalk about Aria, of course, Dr. L said, "Oh, I gave your name to our public affairs department. They're doing a commercial for the hospital and they asked for interesting and unique cases. I hope you don't mind." Of course, I didn't. I enjoy being different, though, maybe for a less deadly reason. "How many of us do you still have?" I asked cautiously, knowing women with small cell neuroendocrine carcinoma of the cervix are a very rare find. "Well, I've only had five in my entire career. Unfortunately two just passed." I nodded. I knew one of them from my online support group. "But that won't happen to you. You'll be here for a long, long time," he said with positivity I've never heard from him. After all, he's a realist. He deals with cancer every day; he knows the realities of all types, especially an aggressive bastard like mine.
Then it was time to get down to the next moment of dread. I had to warn him that I hadn't done my required snoochie stretching exercises in awhile. I mean, really, who has time to stick a medical dildo into her love canal three times a week with a newborn at home? "Go easy on me with the speculum, please." He shook his head like a disapproving dad and eased the device inside me. I cringed as he slowly opened it up to get a peak at the site of my original cancer, which had been removed three years ago, along with my entire reproductive system. "Looks normal!" he announced and pulled out the vaginal opener. He followed with a quick manual check and closed with, "You NEED to use that dilater. The tightening is only gonna get worse." I nodded with no intent of following orders. I HATE that fucking thing!
As Dr. L wrote in my chart he marveled over the fact that my surgery was performed over three years ago. "Surprised I'm still alive?" I asked, only half-jokingly. "You're doing great," he said. "With most people it comes back within the first year or two. Fewer in years three and four, and, after five years, it'll rarely come back again." He looked at my eyes and knew I was secretly calling him out in my head. "Ok," he said. "You know how aggressive this type of cancer can be, but you're really doing well. I wouldn't worry." So I asked, "When will you change my scans from every three months to every six months?" He looked at my chart again, then at me, then back at my chart and said, "Well, we don't really like to over-scan people because it's not good for you, especially since you'll be with us for the next thirty or forty years." I smiled at his prediction. But then he must've remembered the severity of small cell and added, "I'll see you in three months. We can talk about it again at that point." That was fine with me.
I must say, I never thought I'd live to see 2014, but here I am! And I never ever thought I'd come home to a face like this, but...
Wednesday, July 16, 2014
Welcome to Motherhood…Again!
You may or may not have noticed my seven week absence from the work of blogging. You may have assumed I'd decided to stop writing once Aria was finally home with us. You may have wondered where I'd gone and if everything was alright in my world. The short answer to all of the statements above is:
Holy CRAP! Being a new mommy is a LOT of work!
Yes, I'm fully aware of the fact that this is not my first time at the circus. But, being that my boys are now 11 and 13, starting from step one is almost like having to learn the basics all over again. And some things have actually changed! When my boys were newborns we were told to have them sleep on their sides. They even had side-sleepers you could buy in the store if rolling a receiving blanket and propping the baby up on it was too much work for you. Now it's back-sleeping only, unless you're awake and available to check on them every five minutes to make sure they aren't suffocating themselves. But, for the most part, it's all coming back to me. Well, aside from the girl thing. Changing a girl's poopy diaper is a lot more challenging than changing a boy's poopy diaper. Let me explain without getting into too much detail. With a boy, you move it to one side, wipe the mess, move it to the other side, wipe the mess, clean up the backend however it's easiest, throw on a new diaper and, voila! Clean baby! A girl, however, has many, many more creases and crevices and nooks and crannies for the poop to hide. It takes a lot of spreading and investigating to really get them clean. And don't forget to wipe front to back only! Poor Jimmi gets so uncomfortable when he has to handle the stinky ones on his own, but he's a trooper and pushes through!
Speaking of Jimmi…I've never seen the man so in love with another woman. My heart explodes each time I see him with her, talking to her and kissing her and telling her how beautiful she is and how much he loves her. It doesn't hurt that she looks EXACTLY like him! I must've taken 1000 photos of the two of them because I need to know it's real, and not just my mind showing me what I want to see.
And the boys love having a sister, too! They read to her and sing to her and watch her while I clean up or take a shower. She's been such a perfect addition to our family and she was worth every minute we had to wait for her.
And I must tell you about Lyndsay. She's doing great! She still has good days and not so good days, but her doctor mentioned, on more than one occasion, that she is very lucky to still be around to tell the tale of Aria's crazy birth. Aria is eight weeks old and Lyndsay will finally be cleared to go back to work this coming Monday. We are still is awe of Lyndsay's incredible strength and resilience.
Two months. How is my little baby two months old already?
Since her birth she's grown almost four inches and five pounds! She can hold her head up, smile and coo. She loves to smile and "talk" to her invisible friends who gather around her changing table. Jimmi and I are convinced they must be our grandparents or her sisters who were lost at 9 weeks gestation. But our games of "Repeat the Sound" are her favorites, as seen here:
(If the video isn't embedded, copy and paste this link: https://www.youtube.com/watch?v=LqdZwN3-Rb4&feature=youtu.be)
Because of Aria, for the first time in the last three years, I've been able to forget about cancer. Well, not completely forget about it. But I've been so busy and so completely wrapped up in my beautiful creation that The Big C hasn't been able to take over my thoughts and ruin my days. But I knew, eventually, I'd have to start the countdown again. And now is the time.
T-minus 2 days until my next CT scan.
Yes, it's that time again. The week when I start nervously bingeing on as much chocolate as I can find. The week when I'll bite your head off if I don't like the way you say, "hello." The week when my heart beats so loudly in my head it keeps me awake at night. No matter how many times I've prepared for scan week, it never gets easier. And now I have a whole new set of worries. What will happen to little Aria if my cancer is back? Who will feed her and dress her and comfort her if I'm too sick? What if I die? My baby will never remember me. The boys are older now. That doesn't mean it would be easy for them to handle a recurrence, but at least they'd remember me if I didn't make it. Would Aria grow up calling someone else, "Mommy"?
Yes, these are the sick thoughts that travel through my pounding head. Friday will be here soon and my destiny will be revealed shorty after my body is scanned from knees to neck. Bad news will send me into a whirlwind of tests and treatments and good news will give me peace of mind…but only for the next three months until I start the countdown again.
Friday, May 23, 2014
The Most Terrifying Birth I've Ever Experienced
My eyes popped open before my brain registered that my phone was ringing. The blinking display told me Josh, Lyndsay's husband, was calling. It was 3:00 AM. Why the Hell would anyone be awake at that hour, let alone daring to wake me?
And then I figured it out.
"Hello?" I said, hoping it was the call we'd been waiting for.
"Hello," Josh responded, calmly.
"What's going on?" I asked, wanting his words to come out faster.
"Are you ready?" he questioned.
"Are we having a baby?" I shrieked excitedly as I sat straight up in bed.
"We're having a baby," he replied.
"How long until you get here?" I looked at the clock.
"We can see the building now," he answered.
From a conversation Lyndsay and I had just had yesterday afternoon, I knew she would labor at home as long as possible to make sure she wouldn't be sent home from the hospital once she got there. Since our hotel is directly across the street from the hospital, they waited to call us until they were sure it was really time.
"How long has she been contracting?" was my final question.
"A while. She finally decided it was time to go," Josh told me.
"Ok. Getting up now and we'll be right over!"
I hung up the phone and announced, "We're having a baby!" loudly enough to fully wake Jimmi from his interrupted dozing. "She's in labor?" he asked from under the warm covers. "Yup! They're getting to the hospital now!"
I dialed my parents' number. My mom's sleepy voice answered, "Hello?"
"We're having a baby!" I announced, only half believing it myself.
"You had a baby?!" my mom's excitement was clearly audible.
"We're HAVING a baby!" I reiterated. "She's almost at the hospital now."
"You're having a baby?" I could hear her holding back the happy tears.
"Yes! We're heading over in a few minutes. I'll call you when I know more."
I grabbed a hoodie and a pair of jeans from the hotel room closet, debated about whether or not to pack a suitcase, then decided Jimmi could always run back and get anything I needed. As I brushed my hair and threw on just enough makeup to make me feel presentable, I started to regret the fact that we'd stayed up late enough to only allow two hours of sleep on what will probably be our last chance for an uninterrupted night in a very, very long time. But who knew Lyndsay would go into labor two days before her actual due date? She's never been early before. In fact, she's always been late!
Jimmi and I took the elevator down to the subway level that connects our hotel to the hospital with underground tunnels and started following signs for the building that houses Labor & Delivery. A thought crossed my mind as we saw the closed doors at the end of the hallway. "I wonder if they lock this up at night?" One nonproductive push on the door told me my fear was correct. "Damnit!" We turned to the nearest stairway that would lead us to street level and headed out into the cool, Minnesota air. Our bearings were off when we exited the unfamiliar door. I looked across the street and was relieved to read the sign inside the glass doors. "That's the building we want," I pointed and we hurried toward it. But the bad luck continued when we reached the automatic doors and they didn't automatically open for us. "Shit!" I exclaimed, losing patience. We ran around the building to another set of doors that weren't about to let us in either. "I don't know where to go," I said, half to Jimmi, half to myself. I called Josh as Jimmi and I wandered around the building and before he had a chance to figure out exactly where we were, Jimmi spotted a security guard driving out of the hospital driveway and flagged him down like a New York City taxicab. The guard, who was much more helpful than anyone in NYC would ever be, pointed out the large, red button to the left of the first door we tried that, for some reason, we didn't see when we stood right in front of it a few minutes earlier. We thanked the guard and I pushed the button that elicited an awful buzzing noise. "May I help you?" asked the voice that stopped the buzzing. "Hi! We need to get to the third floor. We're having a baby!" The door magically opened, as if we'd told the guard at the giant door at The Emerald City that I was sent by Glinda, The Good Witch of the North, to see The Wizard. I just hoped she didn't look through a secret security camera, notice that I was clearly not pregnant, and send the flying monkeys to come take us away.
The five second long elevator ride seemed never-ending before the sound of the bell alerted us that we'd made it to level three. The way-too-cheery-for-three-thirty-AM receptionist smiled at us, "May I help you?" My mind drew a blank as I tried to come up with as few words as possible to explain our unusual situation. "Hi. We're the parents of the baby Lyndsay B is having right now." I expected a look of confusion to creep over her face but, instead, she nodded without losing her smile and sent us to the Family Waiting Room until Josh could come out with an update.
The room was small with nothing more than a vending machine and a TV. I found the remote and flipped to the Rock Show on VH1 Classic, where I was greeted with a Def Leppard video from the days when their drummer still had two arms. Jimmi dozed off in the chair next to mine and I pulled out my laptop and began to write. "Labor," I titled the post I hoped to publish within the next few hours while I waited for my daughter to make her appearance into the world. I knew Lyndsay had requested that Jimmi and I wait in the waiting area until she was ready to push, which I assumed would give me plenty of time to work on my prose.
Josh entered the room a few minutes later to let us know Lyndsay was four cm dilated and 75% effaced. She had gotten her epidural, so she was comfortable, and had invited us to come see her. I packed up my computer and Jimmi and I followed Josh through the maze of hallways the led to the room where my daughter would be born sometime that day.
*SIDE NOTE* All but the last two paragraphs above were written upon our arrival at the hospital last Friday, May 16, 2014, at 3:30 AM. The events that played out during the rest of the day left us all so traumatized, I was unable to write about it until now. Also, I wanted to make sure all of Lyndsay's family and friends knew what had happened before I broke the news in a blog and scared them all to death. I'll now continue with this post, attempting to remember all of the details.
Lyndsay looked tired but happy when we entered her room and I hugged her with excitement. She had a sly smile plastered across her face when she announced, "I've been having contractions since Tuesday night but I didn't want to say anything in case they stopped. Do you know how hard it was to keep a poker face in front of you whenever one of them would come?" I had no idea she'd been in pain for three out of the four days we'd been in Minnesota. She continued, "That's why I didn't want the midwife to do an internal at our appointment yesterday. I knew it was coming and I didn't want to stress you out until I was sure it was time. She knew I wasn't telling her something because she called me when I was on my way home to see if I was ok." I was stunned by that information, but it was probably smart of her to keep it from me since I probably would've been a nervous wreck if I'd known.
Jimmi and I sat on the couch in the labor suite and I made sure I let Lyndsay know she could kick us out at any point if she wanted to rest or just needed some space. I listened to my baby's heartbeat coming from the monitor that was wrapped around Lyndsay's belly while we waited and Jimmi and Josh kept themselves entertained watching Grouwn Ups 2 on TV. Then the labor nurse went over the birth plan with us. "Do you want the baby to come right to you when she's born or should we clean her up quickly first?" As much as I wanted her immediately, I decided wiping off some of the birth goo wouldn't necessarily be a bad idea. "Do you want to cut the cord, Dad?" she asked Jimmi, who nodded without enthusiasm. I hoped he was just tired and he'd actually show some kind of excitement sooner than later. "Are you planning on some skin-to-skin contact when we hand her over?" That was the question I was hoping for. If the nurse hadn't asked, I would have. It's been proven that babies develop better when they are cuddled with their naked bodies pressed up against their mom or dad's bare chest. I nodded emphatically and the nurse took a gown out of the closet so I would be prepared to strip down when the time came.
When the doctor arrived to check Lyndsay's progress, Jimmi and I stepped into the hall to give her some privacy. Yes, I know we'd be watching a baby emerge from her nether region in the next few hours but, until then, there was no reason we needed to see what was going on in her hoo-ha. The nurse opened the door when the exam was over and gave us some concerning news. "She's six centimeters dilated and ninety percent effaced, so things are moving along nicely. The doctor broke her water to get things going a little faster and there was a lot of thick meconium." I knew exactly what that meant. The baby had her first bowel movement inside the uterus, which is not a good thing. If she were to inhale any of it during the birthing process, it could cause breathing difficulties or an infection. The nurse could see the fear in my eyes. "Don't worry," she tried to calm me. "We'll monitor her very closely but, what this means to you now, is that we'll have some extra doctors from the neonatal pediatric team in the delivery room to really check her over as soon as she's born. It also means that you might have to wait a few extra minutes to hold her." After the nurse went back to check Lyndsay's monitor for contraction regularity and blood pressure, I explained everything she'd said to Jimmi, who wasn't able to follow any of it since he had never been through a pregnancy or birth before. "Is she gonna be ok?" he asked with a nice amount of fatherly concern. "I hope so," I replied, totally unaware of the drama that would soon ensue.
About an hour later, around 8:30 am, Jimmi was passed out on the couch in Lyndsay's room and Josh's eyes were growing very heavy. I was running on pure adrenaline and Lyndsay was too uncomfortable to sleep. The anesthesia running through her epidural catheter had made her very itchy and, while they weren't painful, she could still feel when she was having contractions, which was pretty constant, by that time.
I was happy that Lyndsay hadn't asked us to go back to the waiting room because I don't think I would've been able to deal with not knowing what was happening every single second of the process.
And that's when everything turned completely upside-down.
I heard Lyndsay calling to her husband, and her voice sounded odd, "Josh, can you come here?" Josh was half-asleep and trying to process her words when she called out a bit more desperately, "Can you check my blood pressure, Josh?" That didn't sound good. I looked up at Lyndsay and noticed that her face and chest were tomato red. "Are you ok?" I asked as I jumped up from the couch. "No!" she responded. "I can't breathe!" My heart stopped and everything started moving in high-speed. "Josh, get someone!" Lyndsay ordered. Josh was in shock and fear had him frozen. "Get someone, NOW!" she yelled from the bed. Jimmi woke up as Josh and I ran out of the room and every emergency alarm started blaring from Lyndsay's room. The lights outside her door were blinking and I stood there, helplessly, as about 20 doctors and nurses ran from their respective patients' rooms, into ours.
Jimmi finally joined me in the hallway as the room became too full for any additional onlookers. I heard someone say, "She passed out!" And then another, "Call pediatrics and neonatology NOW!" A nurse flew out of the room to make the calls and, within seconds, five more people were barreling down the hall and into Lyndsay's room. I tried to look in and see what was happening but I only caught a glimpse of the baby warmer being prepped. I could hear the sound of Lyndsay's bed being broken down to prepare for birth and I realized that I had no idea if either Lyndsay or the baby were ok.
A nurse made her way out to us and tried to speak in a calming tone, "Are you supposed to be in there for the birth?" she asked. "Yes. Is everything ok? Is the baby ok?" I could tell the nurse was hiding the seriousness of the situation when she said, "Ok, you're gonna need to hurry, but I just wanted to warn you that they're gonna need to use forceps to get the baby out." My body went numb and I cried, "No! No forceps! They'll crush her head!" Jimmi wrapped his arm around me and told me it would be alright, but he had no idea what the nurse was saying. I turned to him to explain, "One wrong move could cause cerebral palsy! They could kill her!" The color drained from Jimmi's face and the nurse tried to reassure me, "They're very good at it." I shook my head like a dog shakes a squirrel after catching it in his mouth, "No! No forceps!" The nurse was firm as she grabbed my hand, "They need to get the baby out NOW." I knew I had no choice but to allow it, then the sounds of the room filled my head and another nurse came out and said to us, "Get in here NOW!"
Jimmi and I hurried through the crowd of scrub-clad hospital staff until we made it to Lyndsay's bed. She was very pale, but awake, and wearing an oxygen mask. Her hair was matted to her face with sweat and her feet were in the stirrups as the doctor instructed her, "Push!" Lyndsay looked at me with tears in her eyes and kept repeating, "I'm sorry! I'm so sorry!" I didn't know if she was apologizing for whatever caused her to pass out or for starting to push without us but, whatever the reason, there was nothing to apologize for. And that's when I heard the angry cry of a baby who had just been forced out of her nice, cozy, temporary home into the cold, bright world outside. "What's the time?" called a doctor and the nurse shot back, "Nine o'clock on the nose!" There were so many people in the room that I wasn't able to see much of anything until they whisked her away and set her down in the warmer to check her over. Jimmi and I followed and my mind was all over the place. Is the baby ok? Is Lyndsay ok?
What the Hell just happened?
I turned to Jimmi, who was in a state of shock from what he'd just witnessed. While the doctors suctioned and cleaned the baby, I asked Jimmi, "Could you see anything?" He nodded with wide eyes. "Yeah! It was crazy! I got to the bed, Lyndsay's body contorted and the doctor pulled the baby out and held her up by her feet!" At that moment I didn't care that I'd missed it. For months I've been hoping and begging and praying that Jimmi would be present for his daughter's birth. And he was. He saw her take her first breath. But then a thought came to mind, "Did they use forceps?" The nurse replied, "They didn't need to. By the time they got everything ready Lyndsay was conscious and fully dilated. She was able to get her out in three pushes!" Wow. "You're very lucky," the nurse continued. "Her umbilical cord was in a true knot. That only happens in about one percent of pregnancies and usually results in fetal death."
What? My baby could've died at any point in the last few months and no one had any idea? I started to imagine a scenario where Jimmi and I flew out to Minnesota, excitedly awaiting our daughter's birth, only to find out her lifeline had been cut off and she passed at 39 weeks. My entire body shuddered at the thought.
"She looks perfect!" One of the pediatrician's words snapped me back into the present and I finally allowed myself to smile. "She's ok?" I asked. "Looks great! I don't think she inhaled any of the meconium, but we'll need to monitor her for the next twenty-four hours to make sure." A nurse handed Jimmi a scissors-like instrument and instructed, "Here you go, Dad. Cut right here. Be careful, it's tougher than you think!"
I was trying to listen to both sides of the room at once to make sure Lyndsay was doing alright, but it was tough. There was still a crowd around her as she tried to deliver the placenta so I couldn't really see what was happening. I turned back to the baby. Baby A. Aria. MY baby. I couldn't believe she was finally here. "Apgar eight at birth and nine at five minutes," called a doctor to a nurse, referring to the baby's color, muscle tone and breathing. "Nine?" I asked. "That's perfect," the nurse explained with a smile. "We never give a ten." Aria's weight was recorded at exactly 7 lbs. and her tiny frame measured 19 1/4 inches.
I turned back to Lyndsay and everything seemed to be getting back to normal on her side of the room so I began to relax for the first time all morning. I watched one of the nurses pull out and ink pad, look Jimmi up and down and giggle, "We usually stamp the footprints on Dad's arm so you can go across the street to Jimmy John's for a free cookie. Do you have any skin that isn't tattooed?" Jimmi laughed and lifted his shirt to reveal a virgin rib cage, where he plans to have Aria's footprints permanently placed later on. "That'll work!" said the nurse.
And then, finally, the moment came. It was time for me to hold my baby girl for the very first time. I didn't care who was in the room. All modesty went out the window as I stripped off my shirt and exchanged it for a hospital gown to make my bare chest more accessible for the baby's skin. I sat down in a chair and the nurse brought the beautiful angel to me, placed her in my arms and said, "It's time to meet your Mommy."
I cuddled the soft, warm newborn for awhile and then turned to Jimmi, "Ready, Daddy?" Jimmi took off his shirt and took over the chair where I'd been sitting. "How do I do it?" he asked, looking a bit terrified. "Don't worry, you won't break her," I giggled as I handed over our baby. "Whoa," said my husband with the first touch.
Once things had settled down with Lyndsay and the barrage of doctors and nurses had left the room, I walked over to her bed. She was still very pale and looked completely exhausted, but she was smiling upon completion of her promise to us: to care for and deliver a healthy baby. "Thank you," I whispered through tears as I leaned in to give her a hug. Then I took my little Aria from her daddy and handed her to Lyndsay.
Over the next hour or so we stayed in the labor suite while we waited to be moved to our neighboring rooms on the postpartum side of the floor. While Jimmi and I sat on the couch, getting to know the newest, tiny member of our family, Lyndsay had to endure frequent visits from the nurse who pressed down uncomfortably hard on her stomach, trying to help her uterus to contract and stop the bleeding, which is normal after giving birth. But, after about 45 minutes, I could tell something wasn't right. I couldn't hear what the nurse was saying but I caught a few words here and there that led me to believe they were worried about Lyndsay's copious blood loss and the fact that it didn't seem to be stopping, as it should have by that time. "I'm gonna take you two and the baby down to your room now," said the nurse, motioning to Jimmi and me. "Lyndsay will be down shortly and she'll have the room right next to yours." We put the baby in the rolling bassinet and followed the nurse down the hall to our own room.
The postpartum nurse greeted us with congratulations when we arrived then gave us a quick rundown of where we could find diapers, wipes and formula. She gave us a knitted hat for Aria that had way too much blue in it for my taste, then asked if we had any questions. I shrugged and shook my head and she seemed surprised. I had to explain to her that this wasn't my first rodeo. I may not have diapered a newborn in eleven years, but I was sure it would come back to me pretty quickly. When she left the room, Jimmi and I stared at each other for a moment, then looked down at our baby.
We were parents.
Exhaustion hit us quickly and the fact that we hadn't showered was pretty apparent. "Maybe we should take turns going back to the hotel to clean up," I suggested. Our hotel was right across the street from the hospital so it was a convenient solution. I made sure Jimmi felt comfortable staying with Aria on his own before I headed off into the fresh air. When I returned, refreshed but still tired, it was his turn. He came back faster that I'd expected and I smiled at the thought of him actually rushing to get back to our daughter.
It was then that I realized I hadn't heard from Lyndsay or Josh in quite some time. I shot Josh a text, "Everything ok?" Then I waited for a reply, which never came. We weren't allowed to take the baby to the other side of the floor, and one of us needed to stay with her, so I suggested that Jimmi run down to the labor suite where Aria was born to check on Lyndsay. He was just about to leave our room when the door burst open and Josh appeared, eyes red, tears staining his cheeks and the bracelet with a medal of St. Gerard, protector of pregnant women and babies, that I had given to Lyndsay at the beginning of our journey, wrapped around his left hand. When I saw him I stopped breathing.
Oh my, GOD! I thought. Lyndsay's dead.
I forced myself to speak while the baby his wife had just delivered for us slept on my chest, "What happened?" Josh sobbed uncontrollably, "They couldn't stop the bleeding. It wouldn't stop!" My heart was racing and all the joy of the day drained from my body. How could this be happening? People don't die in childbirth anymore. Do they? "Is she…" I couldn't get the words out. "Is she ok?" Josh wiped his eyes with his thumb and middle finger and answered, "She's in the O.R. She needs a transfusion then they need to clean everything out and look around to see if they can figure out what's causing it. They're gonna put some kind of balloon into her uterus to try and stop the bleeding but, if that doesn't work, she'll need to have a hysterectomy."
What?! No! That's not fair!
I didn't understand why this was happening. Why couldn't we have anything just work out the way it's supposed to? Why do I always need to have so much to write about? This woman had a baby for us, now her life is in danger? I thought about Josh and then I thought about Hallie and Hunter, their kids, and my heart was breaking. If Lyndsay didn't make it I would never forgive myself. We invited Josh to sit with us while he waited for Lyndsay to get back from surgery. He watched the clock for about an hour and then decided he needed to go back and wait in her room. Jimmi went with him so he wouldn't have to wait alone.
Time seemed to tick on forever before Jimmi returned. "Is she ok?" I asked, fearing the worst. "They didn't do the hysterectomy yet. They put the balloon in and got the bleeding to a trickle. They're gonna watch her for a few more hours. If it doesn't stop, they'll bring her back down to the O.R. and finish it." I wanted to go see Lyndsay. "Is she awake?" Jimmi told me she was in and out and I should probably wait awhile. When I couldn't stand it any longer I walked down the hall and knocked gently on her door before pushing it open, slowly. "May I come in?" I asked quietly. Josh waved me in and the sight of Lyndsay sent chills through my body. She was a ghostly white and her entire body was swollen. There was a catheter bag attached to the bed that was filling up with blood as I stood there. Josh said, "They're emptying the bag about every ten minutes now." I looked back at Lyndsay's puffy face. She blinked sleepily and tried to smile. "How are you feeling?" I asked. "I just wish I could go home," she replied, clearly still feeling the effects of the drugs she'd been given. It was best not to stay too long as she was completely wiped out and I knew she wouldn't even remember my visit in the morning. She needed to rest and get better so she could go home to her kids.
I went back to my room and gave Jimmi the update. Over the next few hours I waited on a text from Josh to tell us what was happening. Finally Jimmi went down to check on everyone. They decided to wait out the night before doing anything else. As long as the bleeding didn't get worse, Lyndsay would be able to keep her uterus. And the doctors still had no idea what had caused any of it.
Back in our room, Jimmi and I sat, staring at our little girl. She was just perfect. Absolutely, stunningly beautiful, and a miniature clone of her daddy. "Well, she's halfway there!" I teased, referring to my long-standing joke of hoping for a baby with Jimmi's looks and my brains. As Jimmi held Aria, completely in awe of her entire being, I noticed his eyes looked glassy. "Are you crying?" I asked my husband, the man who has only once shed a tear in front of me in the last eight years, and that was during my first chemo treatment. He lifted his hand to wiped the streams coming from his eyes and sobbed, "I don't know why! She just looks at me and I can't help it!" My own eyes began to well up at his confession and I snapped a picture to remember the moment forever. Though, I really didn't need to. The waterworks continued regularly, each time he looked at her, for two days!
Jimmi adjusted to fatherhood almost immediately as Aria melted his heart of stone with each bat of her eyes. Every sound she made throughout the night had her daddy jumping up to check on her and ask, "Is she ok?" It made me smile when I'd respond, "She's fine. Babies make noises." If she would get the hiccups, Jimmi would tense up nervously, "She has the hiccups. Is that alright?" I giggled, "It's fine. Babies get the hiccups." Slowly and patiently I taught my husband how to feed, burp and diaper our daughter, repeatedly reassuring him that he would not break her. The only thing I needed to get used to was bottle-feeding a newborn, as I had breastfed both boys from day one. Each time I'd stick the 2 ounce nursette into her mouth, I'd apologize, "I'm sorry I can't do it myself, Baby Girl. Please forgive me."
Learning to feed her (and still crying).
Letting her listen to The Beatles for the first time (and still crying).
We woke up the next morning - who am I kidding? We never actually slept - and the nurse informed us that Aria would need to have some blood drawn to screen for 50 different disorders that could be detected early. She would also have a hearing test later that day. I then asked her, "Are we allowed to bring the baby to see Lyndsay?" The nurse assumed it would be ok as long as they temporarily disconnected her anti-theft device, but she went out to make sure. I texted Josh, "How's Lyndsay?" He responded that she was doing better so I asked, "Think she'd be up for a tiny visitor?" He told me she'd like that and the nurse confirmed we were allowed.
Jimmi and I wheeled the baby down to the nursery where her blood would be taken from her tiny heel. I remembered that fiasco with Dylan and I dreaded hearing the blood-curdling scream she'd produce. But, surprisingly, she took the heel sticks and squeezes like a champ and barely made a sound. When she was done the nurse escorted us to Lyndsay's room. We entered to find a completely different scene from the day before. The swelling had gone down almost completely and Lyndsay was back to her normal color. I breathed in with relief, picked up Aria and placed her in Lyndsay's arms.
Looking at the two of them made me realize how lucky they both were to still be alive. I couldn't believe how close we were to a completely different outcome and I silently thanked the Man Upstairs for giving us the better of the two options.
We got back to our room just as the hearing specialist arrived. Aria immediately passed with her left ear but she needed two different tests to confirm the status of her right ear, which turned out to be just fine. I went back to our hotel room and started to pack up for our departure the next day. We had been given the option of flying home just 24 hours after Aria's birth but we didn't feel comfortable leaving until we were sure Lyndsay would be making a full recovery.
Sunday morning came quickly and we were shot into a whirlwind of final check-ups, discharge paperwork and packing. Lyndsay had been moved into the room next to ours the previous afternoon and I knew our last visit would be emotional for me and I didn't want it to feel rushed. I dressed the baby in her "Going Home" outfit and brought her to see the woman who had protected her for the last nine months.
I was so happy to see Lyndsay dressed in regular clothing and sitting up in a chair. All of her IVs and tubes had been removed, but they left some pretty brutal battle wounds. Her ever cheery smile spread across her face as she held my baby and Aria immediately relaxed at her familiar voice and scent. I found myself wondering if my baby would miss her. Would she feel abandoned? Would she know me as "Mom" or would she always feel incomplete?
We spent our last few minutes together before transport was called to escort us out of the hospital, with me in a wheelchair. No, I didn't need one, but the staff wanted me to feel like any other new mom on the floor and the wheelchair was part of the "normal" protocol. We gave our last few hugs and snapped a photo of both couples with our baby, then we placed Aria in her brand new car seat, picked up the diaper bag, and off we went.
Finally. We were going home with our beautiful daughter.
There were many questions about the safety of a 2 day old baby flying in an airplane. I made sure to clear the possibility of issues due to pressure changes in Aria's ears with the pediatrician, who assured us she should be alright, but keep a pacifier or bottle handy to help her pop her ears with the sucking motion, if necessary. But the part I worried about most was the going through a large airport with lots of people and even more germs. And what if we had to sit on the runway for another three hours due to the ongoing runway construction? What then? Well, luckily, that part was taken care of for us by some very generous friends who know people in high places. A private jet was lovingly donated to get our precious angel home without unnecessary exposure to germs she's too young to fight. And, let me tell you, it was pretty awesome traveling like a rock star! We called to tell the pilot when we wanted to leave, we drove our rental car right up the plane where a porter loaded our bags and returned the car for us. We got in, got strapped, immediately started down the runway and were in the air within 10 minutes of our arrival at the small airport. Barely two hours later we were on the ground in another small airport in New Jersey, where my parents were waiting for us in the car on the runway where we landed. The entire trip took three hours, door to door. It was crazy!
Jimmi's parents were waiting at our house when we arrived. They were so excited to meet their very first grandchild!
Jimmi's dad
Jimmi's mom
My dad
My mom (on a different day when Aria wasn't quite as happy).
My dad, staring in awe at his newest granddaughter.
Both grandpas, swooning and taking pictures.
At last, I've completed writing the terrifying story of Aria's birth. I hope you all understand why it's taken me so long to get it out. Our daughter is one week old, today, and we're all adjusting nicely. Jimmi was able to spend a few days bonding with his baby before leaving for tour on Wednesday, which is what I had hoped for. We are both, no, we are ALL so in love with this little miracle who has entered our lives and there aren't enough words to thank Lyndsay for all of the sacrifices she made to get her to us safely.
Now, please enjoy some additional photos of the many faces of Aria Eileen Kane:
Meeting her big brothers.
Winston loves Aria.
I loved waking up to this.
Chloe, the Nanny Dog.
Jimmi on the left and Jimmi's brother on the right. She definitely has Kane genes!
Big brother, Dylan.
Daddy's girl.
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