Please follow my new blog
The Next Chapter, A New Journey, A Life After...
https://awidowssong.blogspot.com/
Wednesday, February 6, 2019
Thursday, January 31, 2019
Forever His Legacy, Forever My Love
How can I choose the right words to describe the BEST MAN IN THE WORLD? He was the best father!! He was an amazing lover. And absolutely the GREATEST PARTNER any one could ask for. He demanded hard work and dedication. He didn't believe in excuses. No matter how sick Tony was, he always showed up. Especially for his boys. He was a father who lead by example with strength. His battle was for his family, for the kids, for me. His boys made him proud. He couldn't be disappointed, if he wasn't proud...and to his boys...He was so proud so proud of you all. You are his legacy. You will carry on his name. Tony's legacy of strength, courage, and love for family is one that will continue to live on in every person he came into contact with. He was a warrior and inspiration to so many. Tony made sacrifices for his family. He'd drive hours through the night just to make it to a birthday party while working on the road. He made it to sporting events despite his pain or sickness. He was the man that boys looked up to and strived to be. He believed you were who you associated with...so associate yourself with winners. Tony was a friend to all. But if you were a special friend, you were his family. Family was everything to Tony. He always said, "At the end of the day, family is all you have and can rely on." Especially, if you're last name is LEONARD. He'd always say to the boys, "You're a Leonard. Its in your blood boy." But if Tony called you family, it wasn't about blood...it was about love and trust.
Tony proved to me that TRUE LOVE does exist. Tony loved me more than I loved myself. He loved my faults, he loved my freckles, he loved my smiles, and my frowns. He knew how I was feeling by the looks on my face, and he knew what kind of day I was going to have just by how I woke up. Tony and I hated being apart. We could sit on the phone for hours and listen to each other breathe. If we blew up each others phones, it wasn't because we didn't trust one another, it was because we missed each other. Tony brought me roses when I was getting my hair done...it was our wedding anniversary. He was romantic and kind. I was his queen and he was my king. He exemplified how a husband treats a wife. He demonstrated passion and understanding. He trusted me with everything he had; and I him. He defended me, and would put me first. There were days that he'd drive me crazy, and I'd yell and fuss at him, but those moments would only last about 5 minutes. Tony and I didn't sweat the small stuff. Because most likely it was all small stuff. Just thinking about him makes me smile...but it also makes me miss him oh so much.
I have no regrets, no stone was left unturned. We did everything we had ever wanted to do. No secrets, nothing left unsaid. I am so blessed and grateful he allowed me to spend the rest of his life with him, and for the rest of mine, I will love him forever.
What is the message? Life is short, and its what you make it. If you're happy, embrace it, if you're not, DO something about it. Love one another and support your family and friends. Enjoy your life, because you only get one. Pick up the phone and call each other, spend the day in bed with someone you love. Tony said, "Life is determined by the choices you make." Make the BEST of each moment and don't dwell in the bad. "Regardless of how bad the news is, you still have a tomorrow. The sun will still come up." (Tony Leonard) Life goes on. We're still going to get up every morning, and go to work, and school; and no matter what, Tony is always going to be there. He's always going to be watching over us. This journey has taught me what unconditional love is, but most importantly, its taught me how to live.
Tony proved to me that TRUE LOVE does exist. Tony loved me more than I loved myself. He loved my faults, he loved my freckles, he loved my smiles, and my frowns. He knew how I was feeling by the looks on my face, and he knew what kind of day I was going to have just by how I woke up. Tony and I hated being apart. We could sit on the phone for hours and listen to each other breathe. If we blew up each others phones, it wasn't because we didn't trust one another, it was because we missed each other. Tony brought me roses when I was getting my hair done...it was our wedding anniversary. He was romantic and kind. I was his queen and he was my king. He exemplified how a husband treats a wife. He demonstrated passion and understanding. He trusted me with everything he had; and I him. He defended me, and would put me first. There were days that he'd drive me crazy, and I'd yell and fuss at him, but those moments would only last about 5 minutes. Tony and I didn't sweat the small stuff. Because most likely it was all small stuff. Just thinking about him makes me smile...but it also makes me miss him oh so much.
I have no regrets, no stone was left unturned. We did everything we had ever wanted to do. No secrets, nothing left unsaid. I am so blessed and grateful he allowed me to spend the rest of his life with him, and for the rest of mine, I will love him forever.
What is the message? Life is short, and its what you make it. If you're happy, embrace it, if you're not, DO something about it. Love one another and support your family and friends. Enjoy your life, because you only get one. Pick up the phone and call each other, spend the day in bed with someone you love. Tony said, "Life is determined by the choices you make." Make the BEST of each moment and don't dwell in the bad. "Regardless of how bad the news is, you still have a tomorrow. The sun will still come up." (Tony Leonard) Life goes on. We're still going to get up every morning, and go to work, and school; and no matter what, Tony is always going to be there. He's always going to be watching over us. This journey has taught me what unconditional love is, but most importantly, its taught me how to live.
Monday, January 28, 2019
You Took Your Last Breath....It Hurts So Bad
Is it a dream? Maybe you're just away on a business trip. Maybe my phone will ring and your voice is on the other end. I've been pretty numb. For 5 days I watched your words get fewer and voice softer. You moved into a hospital bed right next to our bed of 12 years and I still found a way to cuddle with you every night. You held my hand and held on tight. You were so weak but determined to still get up each day. The last time you stood up you gave me the longest hug we had had in a while. No words were shared, just holding one another and not wanting to let go. You were just skin and bones but our hearts were beating together. Your best friends were there every night. You weren't alone...and every time your breaths would pause, we would hold your hand and tell you it was ok...but you weren't ready my love. What were you holding on for? Aydin, he needed his time. I heard him cry as he said good bye. Ashton needed to know that time was getting close. I carefully put him in your armpit as you whispered to him it would be ok. Ashton cried and asked why...I had no answers other than, I don't know baby, but if daddy says we will be ok, we will be okay.
That night, Broin, Frank, and I stayed up with Tony all night. Tony was restless waking up and moaning every 15 min. Alternating the morphine and adivan I struggled. Was I killing the love of my life? I ad to dig deep because my love told me, don't let me lay there and not be able to say I love you. Don't let me lay there and not be able to tell you I was in pain.
My room smelled of death. Tony's organs were shutting down, his skin was dying, and my love didn't want to be like that. With all his strength he reached out out to our hospice nurse Brooke looking at her like he was begging for relief. Tony was choking on the morphine, I was having to suction his throat. Monday night, Broin and Frank went home and I fell asleep before I could set my alarm to give Tony his medicine. We all ironically slept peacefully.
I woke up Tuesday morning in a panic. I stared right at his chest, he was still breathing, but hadn't moved all night. Tony was no longer responding. Without saying anything to the boys, I got up them up for school like every other morning. Around 930, Brooke and her aide gave him a bath, Broin gave him a shave, I sprayed him with smell good (Aqua D'Gio) my love was ready to go home. When I said I love you, he would slowly blink his eyes. I knew he could hear me and was saying it back.
At 5:00pm I called the boys and Tony's friends, and said time to come home. We hooked him up to a morphine drip. My love didn't deserve to suffer any longer. It was the hardest decision I ever had to make, but Tony was specific in his instructions and it was my responsibility to follow them. I sat on the bathroom floor crying and asking for God's forgiveness. Selfishly I just wanted him here with me so we could still cuddle up at night. He had been sick for so long, it didn't seem any different. But it wasn't fair to him.
Around 923pm I called Brooke to ask her about his hands squeezing mine and broins hands. Frank then pointed out his breathing changed. NOOO....not happening. I don't want him to go. But there was nothing i could do other than put one hand on his chest and hold his other while I lay next to him watching his chest go up and down with each breath. There was no rattle, no gasping for air. I just know that my hand was raising with each breath and then...my hand didn't move. At that moment, I cried out in pain. My love was gone and damn did it hurt. I didn't think about his pain being gone or suffering, I just wanted to wake up from the nightmare. My sister held me and everything at that point is a blur. When I rolled over, Aydin had just woken up. Whats wrong mommy. I now had to tell my 10 year old that Daddy had died. Aydin jumped up and saw Tony laying there and broke down. Daddy, Daddy, he wasn't sure if it was real. Aydin crawled into the bed with him and wouldn't let go. He didn't want to leave his daddy. I comforted him while my mom called Brooke and told her it was time to come.
Brooke was amazing, she handled everything with tears pouring down her face. She's my family now, she was broken hearted like all of us. Tony impacted her like he had done for so many others. She comforted me while ensuring my wishes when the funeral home arrived were met. Anthoney stayed with me while they came and took Tony. I couldn't watch. I couldn't watch him leave our home...Anthoney watched him all the way down the driveway.
That night, I slept with a pillow in my arms while Aydin slept in Tony's hospital bed. At 7:00 the next morning, Ashton came running downstairs and woke me up. "Mommy, where's daddy?" My nightmare was real again. He's gone to heaven. He's with his family again. Ashton bursted into tears. "I didn't get to say good-bye mommy!!!" he cried. I reminded him that he did 2 days earlier when daddy told him that everything was going to be ok. He just layed in my arms and cried. I knew then, it was our worst reality.
We all knew that this day would come, we thought we prepared for it....but you can't. I would've done ANYTHING to have my love with me forever. We were supposed to beat this together...instead we experienced a deeper more beautiful love and that i will forever hold on to. But it hurts. The pain is physical yet my heart is numb. I don't feel like answering the phone, I don't feel like going out. But the sun came up this morning, the alarm clocks went off, and I put the boys on the bus to school. Its going to take me time. I'm never going to stop loving you Anthony Wayne Leonard. I know you said I would be ok because I'm strong, but today, I'm not....and that my friends, is ok.
That night, Broin, Frank, and I stayed up with Tony all night. Tony was restless waking up and moaning every 15 min. Alternating the morphine and adivan I struggled. Was I killing the love of my life? I ad to dig deep because my love told me, don't let me lay there and not be able to say I love you. Don't let me lay there and not be able to tell you I was in pain.
My room smelled of death. Tony's organs were shutting down, his skin was dying, and my love didn't want to be like that. With all his strength he reached out out to our hospice nurse Brooke looking at her like he was begging for relief. Tony was choking on the morphine, I was having to suction his throat. Monday night, Broin and Frank went home and I fell asleep before I could set my alarm to give Tony his medicine. We all ironically slept peacefully.
I woke up Tuesday morning in a panic. I stared right at his chest, he was still breathing, but hadn't moved all night. Tony was no longer responding. Without saying anything to the boys, I got up them up for school like every other morning. Around 930, Brooke and her aide gave him a bath, Broin gave him a shave, I sprayed him with smell good (Aqua D'Gio) my love was ready to go home. When I said I love you, he would slowly blink his eyes. I knew he could hear me and was saying it back.
At 5:00pm I called the boys and Tony's friends, and said time to come home. We hooked him up to a morphine drip. My love didn't deserve to suffer any longer. It was the hardest decision I ever had to make, but Tony was specific in his instructions and it was my responsibility to follow them. I sat on the bathroom floor crying and asking for God's forgiveness. Selfishly I just wanted him here with me so we could still cuddle up at night. He had been sick for so long, it didn't seem any different. But it wasn't fair to him.
Around 923pm I called Brooke to ask her about his hands squeezing mine and broins hands. Frank then pointed out his breathing changed. NOOO....not happening. I don't want him to go. But there was nothing i could do other than put one hand on his chest and hold his other while I lay next to him watching his chest go up and down with each breath. There was no rattle, no gasping for air. I just know that my hand was raising with each breath and then...my hand didn't move. At that moment, I cried out in pain. My love was gone and damn did it hurt. I didn't think about his pain being gone or suffering, I just wanted to wake up from the nightmare. My sister held me and everything at that point is a blur. When I rolled over, Aydin had just woken up. Whats wrong mommy. I now had to tell my 10 year old that Daddy had died. Aydin jumped up and saw Tony laying there and broke down. Daddy, Daddy, he wasn't sure if it was real. Aydin crawled into the bed with him and wouldn't let go. He didn't want to leave his daddy. I comforted him while my mom called Brooke and told her it was time to come.
Brooke was amazing, she handled everything with tears pouring down her face. She's my family now, she was broken hearted like all of us. Tony impacted her like he had done for so many others. She comforted me while ensuring my wishes when the funeral home arrived were met. Anthoney stayed with me while they came and took Tony. I couldn't watch. I couldn't watch him leave our home...Anthoney watched him all the way down the driveway.
That night, I slept with a pillow in my arms while Aydin slept in Tony's hospital bed. At 7:00 the next morning, Ashton came running downstairs and woke me up. "Mommy, where's daddy?" My nightmare was real again. He's gone to heaven. He's with his family again. Ashton bursted into tears. "I didn't get to say good-bye mommy!!!" he cried. I reminded him that he did 2 days earlier when daddy told him that everything was going to be ok. He just layed in my arms and cried. I knew then, it was our worst reality.
We all knew that this day would come, we thought we prepared for it....but you can't. I would've done ANYTHING to have my love with me forever. We were supposed to beat this together...instead we experienced a deeper more beautiful love and that i will forever hold on to. But it hurts. The pain is physical yet my heart is numb. I don't feel like answering the phone, I don't feel like going out. But the sun came up this morning, the alarm clocks went off, and I put the boys on the bus to school. Its going to take me time. I'm never going to stop loving you Anthony Wayne Leonard. I know you said I would be ok because I'm strong, but today, I'm not....and that my friends, is ok.
Tuesday, January 15, 2019
Watching Him Fade...Piece by Peace
Two short hours after I shared I wasn't ready to say good bye, I received a phone call from one of our amazing hospice nurses, Brooke. She wanted to help Tony and I renew our vows. I couldn't believe it. She said, Friday at 10:00!! Pastor Dennis would be officiating. I texted my mom and a few close friends. I pulled out 7 suits for Tony, all were too big. His 2 best friends came and helped him get dressed, my mom pinned on his boutonniere, all while I was upstairs getting dressed. Years before I had bought I white dress from Ross for about $20 that hung in my closet for the perfect moment. Friday was that moment. Brooke's mom did my hair, and just like 11 1/2 years before my baby sister was right there. She wiped my tears and led the way down the stairs. I can tell you, I didn't notice another person in the room except Tony with our 2 youngest by his side. It the older 3 stood next to Tony at our first wedding...having Aydin and Ashton next to him this time, completed everything. When I saw Tony, my heart broke. Instead of being filled with happiness, I felt dejected. We were supposed to spend the rest of our lives together. Grow old together. Then when Pastor Dennis started speaking, I looked into Tony's eyes, he whispered, "I love you," and I the same. Nothing else mattered at that point...just us loving one another and reminding each other of that. When we kissed, I felt like it would be the last time...and you know what, it was okay. We were complete. All the hard conversations were over, we renewed our vows, we even smashed cake in each other's faces. My love could've met our Lord and Savior right then and it would've been okay. I will have the PRIVILEGE and HONOR to have been married to my Tony for the rest of HIS life.
We thought he had days...but those days have again turned into a week, and now weeks. After we renewed our vows, my love started fading even more...just when I thought he couldn't lose more weight he did. Just when I thought he couldn't sleep more, he has. And just when I thought I was ready for him to stop suffering...I wasn't. There is a selfish side to all of this that I don't like to admit. I don't want him to go.
Last night after I helped Tony back from the bathroom, he fell into the bed, he didn't have the strength to move really, so I curled up with him as is. He had the strength to scratch my back, he had the strength to say I love you...and at that moment in time, I no longer was ok with him to leave. The world stood still at that moment in time. At that moment, there was no cancer, I felt no bones, and we were back to our happy lives.
Then reality struck 5 minutes later. He had to sit up quickly. He felt sick. The vomiting started. His eyes turning black with lack of oxygen. His weakness was apparent. I was so helpless. "My O2 baby," he gasped. At that moment I remembered how it wasn't fair for him. Its not fair for him to keep holding on...for me, for the kids. He's suffering.
This morning as I was laying in his arms, him holding my hand across his belly he felt my tears on his shoulder. "Don't cry baby." He whispered. "Its going to be ok." He's never said that before. He always said, "I'll be ok." Never, It... "I can't do it without you." "Yes you can, baby. You're a strong woman." He responded. My heart was physically breaking and hurting. I don't want to live without him. But its just not fair to him.
Tony's ulcer has gotten worse. Its opening now and his skin is just dying. Tony's not scared, we've checked all the boxes. Every day is a gift. Though he's breaking down piece by piece, HE, my love, my Tony, is finally at PEACE with life, with the final chapter. He continues to be strong for all of us. Our journey isn't over, but every morning he is able to say "I love you," is truly a blessing.
We thought he had days...but those days have again turned into a week, and now weeks. After we renewed our vows, my love started fading even more...just when I thought he couldn't lose more weight he did. Just when I thought he couldn't sleep more, he has. And just when I thought I was ready for him to stop suffering...I wasn't. There is a selfish side to all of this that I don't like to admit. I don't want him to go.
Last night after I helped Tony back from the bathroom, he fell into the bed, he didn't have the strength to move really, so I curled up with him as is. He had the strength to scratch my back, he had the strength to say I love you...and at that moment in time, I no longer was ok with him to leave. The world stood still at that moment in time. At that moment, there was no cancer, I felt no bones, and we were back to our happy lives.
Then reality struck 5 minutes later. He had to sit up quickly. He felt sick. The vomiting started. His eyes turning black with lack of oxygen. His weakness was apparent. I was so helpless. "My O2 baby," he gasped. At that moment I remembered how it wasn't fair for him. Its not fair for him to keep holding on...for me, for the kids. He's suffering.
This morning as I was laying in his arms, him holding my hand across his belly he felt my tears on his shoulder. "Don't cry baby." He whispered. "Its going to be ok." He's never said that before. He always said, "I'll be ok." Never, It... "I can't do it without you." "Yes you can, baby. You're a strong woman." He responded. My heart was physically breaking and hurting. I don't want to live without him. But its just not fair to him.
Tony's ulcer has gotten worse. Its opening now and his skin is just dying. Tony's not scared, we've checked all the boxes. Every day is a gift. Though he's breaking down piece by piece, HE, my love, my Tony, is finally at PEACE with life, with the final chapter. He continues to be strong for all of us. Our journey isn't over, but every morning he is able to say "I love you," is truly a blessing.
ABC11 Covered Renewal of Vows Click Here
Wednesday, January 2, 2019
I'm Not Ready To Say Goodbye
Have you told him its ok to go?
NO, NO I haven't. I can't. I think about what I'll say, or how I will say it, and then I break down. I don't want to accept that he will be gone forever. I don't want to be strong anymore and this will take all the strength I have. What will I have left for the boys?
I turned on our wedding song. I said, "Dance with me." He took my in his boney arms, and for a min the world stood still. We kissed, we hugged, we swayed, we cried. How do I tell the man that finds the strength to dance with me that he can go dance in heaven?
I have planned the funeral/celebration of life, I know what pictures I want to use, I have discussed it with his best friends....but I can't tell him good bye. I know he's tired, and I know he's holding on for me. Once upon a time, I thought our love could beat anything. It could survive anything...and maybe, just maybe our love could beat cancer. How can you love someone enough to tell them good bye...forever? We were supposed to grow old together. We were supposed to renew our vows, we were supposed to argue about money more, we were supposed to laugh more...we were robbed. I didn't choose this. We didn't leave each other, there wasn't a big fight, so how do I send him on his way?
I can't tell him I'll be ok, cause I won't be. I can promise him that I will raise our boys how he wanted them to be raised. I can promise him that he will be in EVERYTHING we do. I can promise him that I will miss him and that I will love him forever. I can promise him that his legacy will continue to inspire so many. I can promise him that Tony Leonard will become a household name. Cause trust me....the world will know about stomach cancer and Tony Leonard!!!
Tony's journey is coming to a rapid end. He has developed a Kennedy Ulcer (Kennedy terminal ulcer (KTU), is a dark sore that develops rapidly during the final stages of a person's life. Kennedy ulcers grow as skin breaks down as part of the dying process.) I discovered it last night. His nurse told me what it was this morning. It completely broke my heart. I now know we are looking at days. His blood pressure and oxygen continue to be low, but my love continues to force himself out of bed. My love is so strong. He is NOT WEAK.
Maybe that's what I tell him. No my love, you are not giving up, you are not weak, you are not letting me down. I love you too much to allow you to suffer like this any more. I'm sorry I couldn't save you, I'm sorry we didn't have more time, but "THANK YOU FOR ALLOWING ME TO SPEND THE REST OF YOUR LIFE WITH YOU!!!"
......Its almost time for you to be reunited with your mom, dad, and brother my love!! Tell my brothers I love him. Give your parents a hug for me. Please tell your mom I hope I made her proud with my Korean cooking. Tell your dad I MISS HIM SO MUCH. I never got to say good bye. And when you get to heaven my love, save a place for me right next to you, cause I will be there with you one day!!!
For now, I will dry my eyes, go lay in his arms, and kiss him, tell him I love him....and enjoy it.
NO, NO I haven't. I can't. I think about what I'll say, or how I will say it, and then I break down. I don't want to accept that he will be gone forever. I don't want to be strong anymore and this will take all the strength I have. What will I have left for the boys?
I turned on our wedding song. I said, "Dance with me." He took my in his boney arms, and for a min the world stood still. We kissed, we hugged, we swayed, we cried. How do I tell the man that finds the strength to dance with me that he can go dance in heaven?
I have planned the funeral/celebration of life, I know what pictures I want to use, I have discussed it with his best friends....but I can't tell him good bye. I know he's tired, and I know he's holding on for me. Once upon a time, I thought our love could beat anything. It could survive anything...and maybe, just maybe our love could beat cancer. How can you love someone enough to tell them good bye...forever? We were supposed to grow old together. We were supposed to renew our vows, we were supposed to argue about money more, we were supposed to laugh more...we were robbed. I didn't choose this. We didn't leave each other, there wasn't a big fight, so how do I send him on his way?
I can't tell him I'll be ok, cause I won't be. I can promise him that I will raise our boys how he wanted them to be raised. I can promise him that he will be in EVERYTHING we do. I can promise him that I will miss him and that I will love him forever. I can promise him that his legacy will continue to inspire so many. I can promise him that Tony Leonard will become a household name. Cause trust me....the world will know about stomach cancer and Tony Leonard!!!
Tony's journey is coming to a rapid end. He has developed a Kennedy Ulcer (Kennedy terminal ulcer (KTU), is a dark sore that develops rapidly during the final stages of a person's life. Kennedy ulcers grow as skin breaks down as part of the dying process.) I discovered it last night. His nurse told me what it was this morning. It completely broke my heart. I now know we are looking at days. His blood pressure and oxygen continue to be low, but my love continues to force himself out of bed. My love is so strong. He is NOT WEAK.
Maybe that's what I tell him. No my love, you are not giving up, you are not weak, you are not letting me down. I love you too much to allow you to suffer like this any more. I'm sorry I couldn't save you, I'm sorry we didn't have more time, but "THANK YOU FOR ALLOWING ME TO SPEND THE REST OF YOUR LIFE WITH YOU!!!"
......Its almost time for you to be reunited with your mom, dad, and brother my love!! Tell my brothers I love him. Give your parents a hug for me. Please tell your mom I hope I made her proud with my Korean cooking. Tell your dad I MISS HIM SO MUCH. I never got to say good bye. And when you get to heaven my love, save a place for me right next to you, cause I will be there with you one day!!!
For now, I will dry my eyes, go lay in his arms, and kiss him, tell him I love him....and enjoy it.
Saturday, December 29, 2018
Hospice, Heartache, and Healing
We are exactly at one month of hospice. Its actually a lot
better than we thought. First we didn't think he was going to make it
through the weekend. All of our friends came over. It was
great. We had food and fun. The kids were wondering what everyone
was doing here. I didn't have the heart to tell them at the time what was
going on.
Tony needed oxygen and hospice had moved in so quickly. I
think what had gotten to me more than anything else was they told they said it
was going to be fast. I guess they didn't know my Tony. He never
let anything go quickly. He sure as heck wasn't going to give up.
There were still things that needed to be said. Places to go
and people that we needed to see. That's when I decided we were going to
ENJOY hospice. We were NOT going to jus sit here and watch Tony
fade. We were going to LIVE. Tony got to make it to Aydin's
football games, got to teach Austin how to fix up his truck, snuggle up with
Ashton, enjoy time with his granddaughters, time with Anthoney and Alec and
everything. Tony even had the opportunity to sit down with the boys and
express his expectations after he's gone. Remind them we are still a
family even though he's gone. NOTHING will ever change that!! I think
what as almost more important, was the fact that we got to spend time as whole
family unit...as LEONARDS.
Christmas Eve, they were all here. No pictures, not poses,
just hot dogs, marsh mellows, pajamas, laughs, and even some tears. You
can't expect a night with 5 brothers to go completely smooth can
you? My parents came and mom forgot the presents an hour away. My
dad graciously went and retrieved them. The look on the older boys faces
were priceless. WHO DOES THAT?? A great husband, father, and
grandfather does. Its life by example. Tony and I got to enjoy it
all together. Aydin got a little upset when we pulled out old family
videos and pictures because he told me it wasn't fair that he wouldn't be able
to do that. I said Aydin, you have your OWN memories and daddy will still
be at everything and in everything you do and WE DO!!!
I truly wanted them to all make memories. I wanted to give
them the chance to say I'm sorry, I love you, and anything that they felt they
needed to say. Instead my little ones, I sometimes wish they didn't
know. They have fears that they didn't have before. Ashton often
says, Daddy, "I don't want to lose you," and breaks down. He
gets mad when people come to visit because he feels they are taking time away
from his time. But at the end of the day, I remind him that none of us
are promised tomorrow, so if you want to snuggle up with me or daddy, DO
IT!!! Aydin I have found has become a protector of me. He doesn't
like to see me upset. He makes comments like, "good to see you
eating mom." Or "Ashton, don't be disrespectful!!"
One night Aydin got mad at Tony, and Aydin ran into my office and told me he
hated him. "I HATE HIM MOM." I said, "No you
don't. You hate what the cancer has done to him." He looked at
me, and a tear fell from his eye. I said, "Aydin, if I told you that
dad just took his last breath, you would never be able to live with yourself
with what you just said." He agreed, and I told him now dry those
eyes, and go tell him you love him and apologize. See, that's a normal
life lesson. Suck it up, apologize, and move on. Raising the boys
and teaching them right from wrong doesn't stop just because Tony is sick...it
just hits them with a deeper reality.
Christmas morning was no different than last year, except I only
made frozen pizzas for dinner. I'm sorry I needed a break!! HAHAHA
The next day Anthoney and Akiya brought our granddaughters over. We made
slime, it was sooo much fun!! :) All the boxes were checked.
The list was about complete...and Tony has begun to decline...please pray for
all of us...we are on hard times.
Friday, December 14, 2018
EVERY DAY IS A GIFT
We told the boys...it was gut wrenching, it was hard. Aydin (10) yells NO NO NO MOMMY NO!! And runs down the hallway. Meanwhile Ashton (8) throws himself on Daddy's chest crying, WHAT DOES THAT MEAN? WHAT DOES THAT MEAN? The four of us cried, and then I took a deep breath and said, It means no more hospital stays, no more doctors, no more poking, no more surgeries, we can be home as a family!! The boys stopped crying and said YES!!! :) Kids are amazing!! They remind us that we HAVE to look at the bright side of things. With a fog there are always blessings.
We received letters from Duke to give to the boys' school so that the school would be patient for any missed days or assignments. I however, still was going to try and keep things as normal as possible. After about a week of coming home early from school and having a messy house, it was COME TO JESUS time. I lined them up and said...Boys...I get it, we got some really crappy news. But you know what, the sun comes up, the moon will too, and the dishwasher still has to be unloaded and loaded...the trash, still needs to make it to the curb, our lives...STILL go on. We don't just STOP living and doing what needs to be done. We are NOT going to just sit around and wait for daddy's end. The next week Tony went from rocky to stable. He didn't need his O2 as much, he was getting around more, wanting to go out shopping. He even bought a new handgun...I mean really, what am I supposed to say, No?
Our family stopped grieving, and started LIVING again. Tony even made it to Aydin's state Championship game. Not only did he make it...WE WON!!! Aydin played one of his best games ever.
This will be a short entry today because I'm spending more time with Tony and my boys. Tony's hospice agency granted Tony's final wish, to see Aydin play in Florida at Nationals. TONY IS LIVING...HE WILL NOT LAY DOWN!!! Just because Hospice is here does NOT mean you die tomorrow, it means you ENJOY LIFE COMFORTABLY. I wish sometimes we had brought hospice in earlier because Tony is finally not in as much pain as he was. He can receive medications without fail and question, I have help if need be, we have nurses who are members of our family now. Oxygen delivered same day, shower chairs, wound care. Our warrior is NOT giving up yall, he is STILL LIVING. He is tired, he is weak, but his mind is full and there and loving. Yes, Tony is losing weight and has issues eating, but that's not what this is about, its making EACH DAY A GIFT. A TREASURE. A BLESSING.
My Tony is strong with his heart and mind. I'd rather have that, than anything else!!!
We can't ever thank everyone enough for the love and support that we have received over the past month especially. Tony said, "I've never felt so loved in all my life." From the donations from mealtrain, household supplies from the stomach cancer warriors group, Debbies Dream Foundation for their continuous support and understanding, my PARENTS and BFF Nikki for dropping everything to let me cry and be selfish...and for all the newly diagnosed, i'm sorry you are going through this...welcome to the club. YOU ARE NOT ALONE. Tony has had 7 AMAZING years and is still holding on. Don't give up hope, treasure each moment, and when you are tired, its ok to be tired...you are not weak, you are the strongest for admitting so. I LOVE YOU ALL!!!
OUR JOURNEY ISN'T OVER!!!
We received letters from Duke to give to the boys' school so that the school would be patient for any missed days or assignments. I however, still was going to try and keep things as normal as possible. After about a week of coming home early from school and having a messy house, it was COME TO JESUS time. I lined them up and said...Boys...I get it, we got some really crappy news. But you know what, the sun comes up, the moon will too, and the dishwasher still has to be unloaded and loaded...the trash, still needs to make it to the curb, our lives...STILL go on. We don't just STOP living and doing what needs to be done. We are NOT going to just sit around and wait for daddy's end. The next week Tony went from rocky to stable. He didn't need his O2 as much, he was getting around more, wanting to go out shopping. He even bought a new handgun...I mean really, what am I supposed to say, No?
Our family stopped grieving, and started LIVING again. Tony even made it to Aydin's state Championship game. Not only did he make it...WE WON!!! Aydin played one of his best games ever.
This will be a short entry today because I'm spending more time with Tony and my boys. Tony's hospice agency granted Tony's final wish, to see Aydin play in Florida at Nationals. TONY IS LIVING...HE WILL NOT LAY DOWN!!! Just because Hospice is here does NOT mean you die tomorrow, it means you ENJOY LIFE COMFORTABLY. I wish sometimes we had brought hospice in earlier because Tony is finally not in as much pain as he was. He can receive medications without fail and question, I have help if need be, we have nurses who are members of our family now. Oxygen delivered same day, shower chairs, wound care. Our warrior is NOT giving up yall, he is STILL LIVING. He is tired, he is weak, but his mind is full and there and loving. Yes, Tony is losing weight and has issues eating, but that's not what this is about, its making EACH DAY A GIFT. A TREASURE. A BLESSING.
My Tony is strong with his heart and mind. I'd rather have that, than anything else!!!
We can't ever thank everyone enough for the love and support that we have received over the past month especially. Tony said, "I've never felt so loved in all my life." From the donations from mealtrain, household supplies from the stomach cancer warriors group, Debbies Dream Foundation for their continuous support and understanding, my PARENTS and BFF Nikki for dropping everything to let me cry and be selfish...and for all the newly diagnosed, i'm sorry you are going through this...welcome to the club. YOU ARE NOT ALONE. Tony has had 7 AMAZING years and is still holding on. Don't give up hope, treasure each moment, and when you are tired, its ok to be tired...you are not weak, you are the strongest for admitting so. I LOVE YOU ALL!!!
OUR JOURNEY ISN'T OVER!!!
Tuesday, November 20, 2018
....When Your Gut Is Right
Why did I say Christmas? Why was that always what stuck out in my mind? I told them...I told them they can't find it. THE CANCER IS THERE...YOU JUST CAN'T SEE IT!!! I mean I get it...diffused cancer, it doesn't show on scans. HE CANT POOP DOC!!! HE THROWS IT ALL UP DOC!!! HE IS IN PAIN DOC!! SOMETHING IS WRONG DOC!!! An obstruction...no cancer Ms. Leonard. THEN FIX IT...and so it was.
DOC...He can't control his bladder. Hes only 45 doc. WHATS WRONG DOC?? Its the cancer I'm telling you. Ms. Leonard, we don't see any cancer. THEN WHATS WRONG??? He tested positive for a UTI. Antibiotics are waiting for him at the pharmacy.
DOC...He can't control his bowels. ITS THE CANCER...I know it is. Christy, I'm admitting him and we will scan his spine...prepare yourself. Back to Duke for a 3 hour MRI. I'm ready Doc, just tell me. SCANS ARE CLEAR!!! WHAT??? SERIOUSLY??? THEN WHATS WRONG?? ITS THE CANCER I KNOW IT IS. Ms. Leonard we think its his nutrition...let start TPN.
Happy Birthday Tony...time to start TPN, when do you want to come to the hospital? Can it be after the boys football game this weekend? Its the second round of the playoffs and I don't want him to miss it. Absolutely the doc says.
DOC!!! HES PROJECTILE VOMITTING, HIS BELLY IS SWOLLEN...WHAT DO I DO DOC? I'm admitting him Christy. NOOOO He's going to miss the game...Christy, get it together...and so I did.
All this poking and prodding DOC...tell me...TELL ME!!! We don't have results yet. Then I'm going home for a couple of days to be with my boys. I love you honey, see you Thursday Doc.
Phone rings - Yes Doc? Are you home? Yes. Are you with the boys? Yes, but they are in the other room.
I'm sorry to do this over the phone...No Doc, say it aint so...His ascites tested positive for cancer cells...NO...NO...NO!!!!!!!!!! I am so sorry Christy. WHY DOC...HE FOUGHT SO HARD!! But...I knew. I knew all this time. My gut told me so. He said, you were right...you were right all along. I don't want you to tell him, not without me Doc. NOT ONE PERSON, I'll be there in the morning.
At that moment in time someone reached into my gut, punched me so hard, grabbed my heart and ripped it out. WHY GOD!???? WHY? WHY ARE YOU TAKING MY LOVE FROM ME? WHY ARE YOU TAKING MY BABY'S DADDY? WHAT DID HE EVER DO? HE'S A GOOD MAN GOD. WHY ARE YOU DOING THIS TO ME???? YOU TOOK MY BROTHER, YOU TOOK MY FATHER IN LAW, MY MOTHER IN LAW....WHY ARE YOU TAKING HIM FROM OUR FAMILY???
It hurts? I'm drowning...I can't breath. The tears are pouring and I have never felt so helpless in my life...then I take a deep breath and email the doc...What are our options Doc??? Tony's too weak for treatment, the recommendation is Hospice......NOOOOOOOOOOOOOOOOOOOOO any bit left of my heart fell to the floor with each tear my heart shattered.
.....and all I can think about now...is Dear God, how do I tell my boys??? Please pray for all of us. I still haven't told my little ones...I don't know how. Now...I am numb, for now my love is aware that his journey is coming to an end. A journey that he and I both fought so hard to continue till we were 100 years old. My love, my best friend, my everything. A piece of me will die with you...I will never be the same...But I promise you this...EVERYONE IN THIS WORLD WILL KNOW ABOUT STOMACH CANCER. I PROMISE YOU THIS...WITH EVERY BREATH I TAKE, MY BOYS WILL REMEMBER THEIR DADDY, WE WILL CONTINUE TO FIGHT FOR THOSE THAT FIGHT. YOUR LEGACY WILL BE AMAZING!!! and...you will always be close to me!! XOXOX
DOC...He can't control his bladder. Hes only 45 doc. WHATS WRONG DOC?? Its the cancer I'm telling you. Ms. Leonard, we don't see any cancer. THEN WHATS WRONG??? He tested positive for a UTI. Antibiotics are waiting for him at the pharmacy.
DOC...He can't control his bowels. ITS THE CANCER...I know it is. Christy, I'm admitting him and we will scan his spine...prepare yourself. Back to Duke for a 3 hour MRI. I'm ready Doc, just tell me. SCANS ARE CLEAR!!! WHAT??? SERIOUSLY??? THEN WHATS WRONG?? ITS THE CANCER I KNOW IT IS. Ms. Leonard we think its his nutrition...let start TPN.
Happy Birthday Tony...time to start TPN, when do you want to come to the hospital? Can it be after the boys football game this weekend? Its the second round of the playoffs and I don't want him to miss it. Absolutely the doc says.
DOC!!! HES PROJECTILE VOMITTING, HIS BELLY IS SWOLLEN...WHAT DO I DO DOC? I'm admitting him Christy. NOOOO He's going to miss the game...Christy, get it together...and so I did.
All this poking and prodding DOC...tell me...TELL ME!!! We don't have results yet. Then I'm going home for a couple of days to be with my boys. I love you honey, see you Thursday Doc.
Phone rings - Yes Doc? Are you home? Yes. Are you with the boys? Yes, but they are in the other room.
I'm sorry to do this over the phone...No Doc, say it aint so...His ascites tested positive for cancer cells...NO...NO...NO!!!!!!!!!! I am so sorry Christy. WHY DOC...HE FOUGHT SO HARD!! But...I knew. I knew all this time. My gut told me so. He said, you were right...you were right all along. I don't want you to tell him, not without me Doc. NOT ONE PERSON, I'll be there in the morning.
At that moment in time someone reached into my gut, punched me so hard, grabbed my heart and ripped it out. WHY GOD!???? WHY? WHY ARE YOU TAKING MY LOVE FROM ME? WHY ARE YOU TAKING MY BABY'S DADDY? WHAT DID HE EVER DO? HE'S A GOOD MAN GOD. WHY ARE YOU DOING THIS TO ME???? YOU TOOK MY BROTHER, YOU TOOK MY FATHER IN LAW, MY MOTHER IN LAW....WHY ARE YOU TAKING HIM FROM OUR FAMILY???
It hurts? I'm drowning...I can't breath. The tears are pouring and I have never felt so helpless in my life...then I take a deep breath and email the doc...What are our options Doc??? Tony's too weak for treatment, the recommendation is Hospice......NOOOOOOOOOOOOOOOOOOOOO any bit left of my heart fell to the floor with each tear my heart shattered.
.....and all I can think about now...is Dear God, how do I tell my boys??? Please pray for all of us. I still haven't told my little ones...I don't know how. Now...I am numb, for now my love is aware that his journey is coming to an end. A journey that he and I both fought so hard to continue till we were 100 years old. My love, my best friend, my everything. A piece of me will die with you...I will never be the same...But I promise you this...EVERYONE IN THIS WORLD WILL KNOW ABOUT STOMACH CANCER. I PROMISE YOU THIS...WITH EVERY BREATH I TAKE, MY BOYS WILL REMEMBER THEIR DADDY, WE WILL CONTINUE TO FIGHT FOR THOSE THAT FIGHT. YOUR LEGACY WILL BE AMAZING!!! and...you will always be close to me!! XOXOX
Saturday, November 17, 2018
When Is It All Too Much?
I'm sitting here in this hospital room again writing one of the hardest blogs writings I've ever put on paper. For some reason, when we think something, it doesn't seem real unless you say it. But then its still can be altered. However, when you put something on paper...its like etched in stone.
I have been very quiet these past couple of months. I have talked about long hospital stays, the waiting game, the ups and downs...what I haven't talked about is MY journey. Where am I at. I am struggling. I am struggling with what the right answer is. So many times these past couple of days I have just wanted to disconnect Tony from these IV's and take him home, put him in our bed, and just allow him to live or die...whatever God has planned. Then I look at my boys with him. I look at how they smile with him, how it doesn't matter WHAT they are doing as long as they can curl up next to their daddy and just spend time with him. Because honestly, that's all any of us want...more time. More time, but at what cost? I have sat back and watched Tony go through test after test after test and had things poked and examined, that NO MAN should have to go through. For what? 5 more weeks, 5 more months? or 5 more days? Are we just spinning our wheels doc? Cause I am struggling here. I am..going against EVERYTHING I PROMISED HIM AND MYSELF WE WOULD DO. I never said I would just keep putting him through this if it wasn't going to change the outcome.
I am hurting inside because I have no idea which direction to take. I don't want to lose him, I don't want to let my boys down. I don't want anyone to think I gave up or failed him. I don't want to rob this precious time they have with each other. And honestly, selfishly, I don't want to be alone. I don't want his side of the bed to be empty, I want to keep fussing at him for leaving his clothes on the bathroom floor, and I truly honestly...something most of you don't know, I really don't want to love someone more than myself and let them go again.
My chest hurts, my eyes burn, my head is pounding. I feel like I'm drowning. There is no right or wrong answer, no one is going to come out of this on top.
Why? Why am I feeling this way? I haven't shared a reason. Tony's MRI scans were clean. I couldn't believe it. I had mentally prepared myself for hospice. I was ready. I knew what I was going to say to the boys and our family and friends. I was prepared. When we got the news that everything was fine, I said, that's great...but then why the hell is all of this happening?
For the past 8 weeks Tony has had some personal issues killing his dignity, these past 2 weeks his bowels stopped moving. We agreed that TPN was the way to go in hopes that everything that he was experiencing was a result of malnutrition. Tony was supposed to be admitted Sunday to start TPN in the hospital and then we would go home after a week. Instead he woke up Thursday morning with his belly distended. Not too too much, but enough for me to notice and call the doctors. They moved his admission up to that same day. His CT of course showed not evidence of disease, but a slight increase in ascites. We agreed this was due to malnutrition and started TPN immediately. In the mean time they tried shots and suppositories to help his bowels move...nothing. They had him pee in a cup, examined his male parts, prostate exam, and more. They consulted with urology and wanted to scope his bladder. When I learned what that entailed, I said STOP!!! Hasn't this many been through enough? HIs surgeon who has been with us for these past 7 years came in and I broke down and cried. When is enough, enough? Tony has been poked and prodded in places NO MAN should EVER be. What is our goal here doc and what are you not telling me? His response...lets see what tests show. I'll talk with your oncologist this afternoon. He answered. He agreed, Tony is my husband, a daddy, not a guinea pig.
The lesson here is....don't be afraid to ask for a line in the sand. Don't be afraid to ask for a goal. MAKE SURE you aren't spending what could be your last days grasping for straws and putting your love through unnecessary tests. Lay in the bed with one another, kiss often. Follow your gut and speak up. Quality over Quantity.
I have been very quiet these past couple of months. I have talked about long hospital stays, the waiting game, the ups and downs...what I haven't talked about is MY journey. Where am I at. I am struggling. I am struggling with what the right answer is. So many times these past couple of days I have just wanted to disconnect Tony from these IV's and take him home, put him in our bed, and just allow him to live or die...whatever God has planned. Then I look at my boys with him. I look at how they smile with him, how it doesn't matter WHAT they are doing as long as they can curl up next to their daddy and just spend time with him. Because honestly, that's all any of us want...more time. More time, but at what cost? I have sat back and watched Tony go through test after test after test and had things poked and examined, that NO MAN should have to go through. For what? 5 more weeks, 5 more months? or 5 more days? Are we just spinning our wheels doc? Cause I am struggling here. I am..going against EVERYTHING I PROMISED HIM AND MYSELF WE WOULD DO. I never said I would just keep putting him through this if it wasn't going to change the outcome.
I am hurting inside because I have no idea which direction to take. I don't want to lose him, I don't want to let my boys down. I don't want anyone to think I gave up or failed him. I don't want to rob this precious time they have with each other. And honestly, selfishly, I don't want to be alone. I don't want his side of the bed to be empty, I want to keep fussing at him for leaving his clothes on the bathroom floor, and I truly honestly...something most of you don't know, I really don't want to love someone more than myself and let them go again.
My chest hurts, my eyes burn, my head is pounding. I feel like I'm drowning. There is no right or wrong answer, no one is going to come out of this on top.
Why? Why am I feeling this way? I haven't shared a reason. Tony's MRI scans were clean. I couldn't believe it. I had mentally prepared myself for hospice. I was ready. I knew what I was going to say to the boys and our family and friends. I was prepared. When we got the news that everything was fine, I said, that's great...but then why the hell is all of this happening?
For the past 8 weeks Tony has had some personal issues killing his dignity, these past 2 weeks his bowels stopped moving. We agreed that TPN was the way to go in hopes that everything that he was experiencing was a result of malnutrition. Tony was supposed to be admitted Sunday to start TPN in the hospital and then we would go home after a week. Instead he woke up Thursday morning with his belly distended. Not too too much, but enough for me to notice and call the doctors. They moved his admission up to that same day. His CT of course showed not evidence of disease, but a slight increase in ascites. We agreed this was due to malnutrition and started TPN immediately. In the mean time they tried shots and suppositories to help his bowels move...nothing. They had him pee in a cup, examined his male parts, prostate exam, and more. They consulted with urology and wanted to scope his bladder. When I learned what that entailed, I said STOP!!! Hasn't this many been through enough? HIs surgeon who has been with us for these past 7 years came in and I broke down and cried. When is enough, enough? Tony has been poked and prodded in places NO MAN should EVER be. What is our goal here doc and what are you not telling me? His response...lets see what tests show. I'll talk with your oncologist this afternoon. He answered. He agreed, Tony is my husband, a daddy, not a guinea pig.
The lesson here is....don't be afraid to ask for a line in the sand. Don't be afraid to ask for a goal. MAKE SURE you aren't spending what could be your last days grasping for straws and putting your love through unnecessary tests. Lay in the bed with one another, kiss often. Follow your gut and speak up. Quality over Quantity.
Monday, October 29, 2018
Waiting Is The Hardest Part
I'm sitting here waiting. Waiting because the next 24 hours will tell me what our fate is. Tony was admitted back into the hospital yesterday. I don't want to go into detail because part of this journey is keeping as much dignity for your loved one in tact. With that said, I went downstairs to get our coffee this morning, and on the way back they were taking him down for his MRI. The 2 hr long MRI that would tell us if Tony's cancer has spread to his spine. The symptoms are there, but we just don't know. Tony has diffused cancer, and it doesn't like to show up on scans. But something isn't right and we all know it.
Tony's malnutrition labs are right back to where they were a couple of months ago. My heart is breaking for him. Hell, my heart is breaking for me. I don't want to be selfish but it hurts. I haven't been able to stop crying since I got into it with God yesterday...I yelled at him. I told him I DIDN'T ASK FOR THIS!!! I DIDN'T WANT THIS LIFE!!! WHAT DID I DO TO YOU??? Then I called him an SOB. I know, I'm not supposed to go there, but damnit...my gut has been in knots and my chest hurts and until they tell me different, I know there is something wrong.
So back to the room I went...alone...watching the second hand tick on the clock. Looking at my phone to see if there was a text message or 2 not about Tony that could help me keep my mind off things. Wanting to cry with someone, but instead, I do what I always do. Focus on other things...like our golf tournament this weekend, the boys school, work....but honestly, I can't help but stare at the door and hope someone walks through with the verdict...as I type this the man in the white coat is standing outside the door....
My heart is racing, beating super fast. Come out with it already. They doc and PA are standing there and tell me his brain looked fine. We got the all clear. But his spine results weren't back yet. What could be causing all these issues Tony is having? What is the answer going to be, good, bad, indifferent? Not wanting the cancer, but wanting an answer so we can treat/fix it.
If the cancer is in his spine, then the journey is coming to an end. If its not, then what do we do so he won't starve to death? Someone please guide me? I don't' know what the right now.
I made the mistake at yelling at God. But I know he knows I didn't really mean it. I'm just wanting answers. Answers that will fix him. I ask him what's wrong, and he just shakes his head. He's so tired. I am too. I am straight exhausted. But I can't give up...not today, not ever!!!!
Thursday, October 25, 2018
Losing Faith...
Once upon a time there was a little girl who always had to have the closet light on when she went to sleep. She was afraid of her closet when it was dark. The door needed to be cracked just a bit so the light would act as a night light. See the monsters don't come out in the light, they only come out in the dark. They come out when no one is looking, when no one is watching, when our guard is down.
As the little girl got older she knew she could take on any monsters in her closet and learned to trust her gut, her strength, and face those monsters head on if they should ever appear. The now not so young girl learned to sleep in the dark soundly, peacefully, and without fear.
Just then, when she least expect it, the monsters would bang on the closet door and try to come out and scare her, but the now woman would simply take a deep breath, and turn on the light. For the light of the angles always protected her. See there were no monsters, just fear...but our fears always come out when we keep the light of God off. Her strength was so powerful, she forgot that God had given it to her.
And that my friends is where I am today. I am struggling today. I am struggling with trusting that light. Every night before bed, I turn off the lights, and I don't pray any more. I ask others to pray for me...cause I'm afraid if I pray, my prayers will be questions. My ask will scare me, and His will, yeah well I'm afraid of that too.
I REFUSE to ask God why...because EVERY DAY, my love wakes up, sips on his coffee, and makes plans to go out EVERY DAY. NO MATTER HOW TIRED. Even if its a trip down the street to Dollar General with the boys; Tony will find a way to make each and every day count. So who am I? Who am I to deny my love that memory or moment with his children? Prime example, last Saturday Tony decided to take the boys hunting. Now I can't get those two knuckleheads up on a school morning at 6am, but come Saturday morning at 430am they were up and dressed and waking us up to go hunting. Now I was maaaad. I knew darn well it was too cold and Tony didn't need to climb up a deer stand because I was so afraid he was going to fall. Then a friend reminded me...Christy, even if its for 5 minutes, don't take that memory away from him or the boys...and he was right.
See lately, I've been living in fear, waiting for the other shoe to drop. I've been living like that for a long time. The light...has been off. See sometimes I get mad at God. But that only means that I know he's there right? I mean, I'm sure I've made him mad a few times. I don't understand his plan or his reasons...and then I get a text message about how Tony offers HOPE. Or today during his CT scan, a man said, see, he's a walking miracle and a testament to what OUR GOD can do. And that my friends is why I'm afraid to pray...because I want him healed...and I'm afraid that in order to heal him, I'll have to let him go...and I'm not ready. My boys aren't ready. WE #TEAMTONY are NOT ready.
You see, Tony's birthday is coming up. Our 5th annual Stomach Cancer golf tournament and charity dinner is coming up. Our warrior is CELEBRATING LIFE with another birthday!! Come join us, join him. Every birthday for him is a miracle.
Tony had his CT scan today, and now we have more tests. We have MRIs next week. Tony's had some funky things going on with him lately and well, his body may say one thing, but his MIND says something completely different. And I as his wife will continue to stand by and fight and advocate and care for him as long as he allows me too. Our warrior is getting thin, our warrior may be tired, but our warrior is going to fight until its time, to join that protecting light.
As the little girl got older she knew she could take on any monsters in her closet and learned to trust her gut, her strength, and face those monsters head on if they should ever appear. The now not so young girl learned to sleep in the dark soundly, peacefully, and without fear.
Just then, when she least expect it, the monsters would bang on the closet door and try to come out and scare her, but the now woman would simply take a deep breath, and turn on the light. For the light of the angles always protected her. See there were no monsters, just fear...but our fears always come out when we keep the light of God off. Her strength was so powerful, she forgot that God had given it to her.
And that my friends is where I am today. I am struggling today. I am struggling with trusting that light. Every night before bed, I turn off the lights, and I don't pray any more. I ask others to pray for me...cause I'm afraid if I pray, my prayers will be questions. My ask will scare me, and His will, yeah well I'm afraid of that too.
I REFUSE to ask God why...because EVERY DAY, my love wakes up, sips on his coffee, and makes plans to go out EVERY DAY. NO MATTER HOW TIRED. Even if its a trip down the street to Dollar General with the boys; Tony will find a way to make each and every day count. So who am I? Who am I to deny my love that memory or moment with his children? Prime example, last Saturday Tony decided to take the boys hunting. Now I can't get those two knuckleheads up on a school morning at 6am, but come Saturday morning at 430am they were up and dressed and waking us up to go hunting. Now I was maaaad. I knew darn well it was too cold and Tony didn't need to climb up a deer stand because I was so afraid he was going to fall. Then a friend reminded me...Christy, even if its for 5 minutes, don't take that memory away from him or the boys...and he was right.
See lately, I've been living in fear, waiting for the other shoe to drop. I've been living like that for a long time. The light...has been off. See sometimes I get mad at God. But that only means that I know he's there right? I mean, I'm sure I've made him mad a few times. I don't understand his plan or his reasons...and then I get a text message about how Tony offers HOPE. Or today during his CT scan, a man said, see, he's a walking miracle and a testament to what OUR GOD can do. And that my friends is why I'm afraid to pray...because I want him healed...and I'm afraid that in order to heal him, I'll have to let him go...and I'm not ready. My boys aren't ready. WE #TEAMTONY are NOT ready.
You see, Tony's birthday is coming up. Our 5th annual Stomach Cancer golf tournament and charity dinner is coming up. Our warrior is CELEBRATING LIFE with another birthday!! Come join us, join him. Every birthday for him is a miracle.
Tony had his CT scan today, and now we have more tests. We have MRIs next week. Tony's had some funky things going on with him lately and well, his body may say one thing, but his MIND says something completely different. And I as his wife will continue to stand by and fight and advocate and care for him as long as he allows me too. Our warrior is getting thin, our warrior may be tired, but our warrior is going to fight until its time, to join that protecting light.
Friday, September 7, 2018
The Results Are In - After 19 Days!!!
Follow your gut. That's all I can say. I knew something was wrong, I could feel it. I just knew it. But no one believed me. We spent a week in the hospital 2 months ago and they couldn't find anything. Yet my gut was in knots. 2 months of the same thing, Tony intense pain, throwing up everything he put down...yet nothing made sense. It was time for routine scans and the CT showed an obstruction in his small bowel. The worst part, it was on the outside pushing in...yet no one could see what it was.
Tony's oncologist called his surgeon and they discussed a plan. Tony was too have an upper and lower GI scope to determine next steps. But most likely Tony was going to need another surgery. :(
Between being told no more chemo, and Tony being so sick, we decided it was time to for Tony to see everyone. All of our friends and family came over for a great Sunday dinner taking photos and lifting Tony's spirits. Little did they know about his recent obstruction and possible surgery, and neither did the kids. Not only did Tony have an obstruction, he was recovering from aspiration pneumonia.
I have never been so scared...or so I thought. Monday I got his scopes scheduled and he was to start is prep Wed...but low and behold Tony walked into the kitchen Tuesday night and said, I think we need to go to the hospital. TONY NEVER SAYS THAT!!! HE HATES THE HOSPITAL. I paged his oncologist and she called back right away. She said to get Tony to the Duke ER ASAP. She was afraid his obstruction had worsened.
We got to Duke and went straight back to a room. XRAY's, labs etc. Tony's liver enzymes had skyrocketed. I mean 12 to 212, and pancreatic enzymes, 16 to 637. My heart was racing. The attending came in and I demanded a CT. Explained what we had learned just 4 days earlier. He had a CT and it showed the obstruction had in fact worsened. Doc came in and said, I paged the Surgeon on call to see if you're going straight to an OR or a room upstairs. UMMMMMM, Yeahhhh sooooo you are only paging HIS SURGEON. Not some resident on call. When I told him who Tony's surgeon was, the team came down right away. Because Tony was stable, and his surgeon would be arriving in 90 min, we felt it could wait.
I called my mom in tears. "Mom, I don't know what's going on. I'm so scared. Everything is a mess. His pancreas and liver and acting up. He's in so much pain mom." Worse, we STILL didn't know what was causing the obstruction. I just knew...it was causing major issues.
Good news, no surgery that night. going upstairs and waiting for consult with "THE MAN."
Surgery was scheduled for the following Friday, we were told, but he wasn't healthy enough. Tony was so malnourished on a scale from 18-45, Tony was a 7. :( That's when we learned that Tony was to start TPN and had to stay in the hospital until surgery. Then, we needed another 7-10 days for him to recover and get healthy. I had NO idea how to tell the little ones, I had NO idea how I was going to do it, I had NO idea about anything at this point.
After talking to Tony, we decided I need to go home for a couple of days and break the news in person. On the way home, my best friend called me. She was coming to help!!! For as long as we needed her too. She was my angel.
I pulled into the driveway, and surprised the boys...then I heard from Ashton, wait...where's daddy mommy? My heart sunk. I told them to dry off and come inside.
Daddy's going to be in the hospital for a little while. How long mommy? A couple more weeks baby. Aydin ran upstairs and Ashton started to cry. Austin fought his tears, and I could see he wasn't happy. I mean who would be right?
That night, I crawled into bed...and his side of the bed...was empty.
A week went by of me going back and forth to the hospital, it was time for surgery. Surgery was a success, but when I asked about the obstruction...he didn't have an answer for me. He told me pathology would tell us for sure. At this point we were to focus on nutrition and recovery...but me, I only cared about pathology. Was it cancer? or not?
Tony was doing great for the first couple of days and then he took a quick turn and not for the good. Tony began to sleep, and sleep, and sleep. Couldn't hold a conversation and when he was awake, he was staring. When it was time to eat, he had no desire. A couple of bites, and he wanted me to take the tray away. His color was no longer good, and I felt like I was losing him. Four days I said, something is wrong. Four days I said, we are missing something. Four days, I relived what I went through with my mother in law, watching her die.
Palliative care was called. I told him what was going on. He asked me what I needed to know. I said, I need to know if my husband is dying and no one is telling me, I blurted out with tears pouring down my face. I JUST NEEDED TO KNOW!!!! He put his hand on my hand and said, I don't think that is what is going on here. I really don't. I looked up and said, REALLY?? He said, No. I think this is medication, something we did, and we can fix. We went through every little medication, change add, removal etc over the past few days. I said, wait...they increased his pump on Monday. So we decided to decrease his pain pump, and turn off the rest of the meds. The next day, Tony came a little more alert, but still no appetite. I had palliative care paged and said, I don't understand. We had another great conversation about quality of life and family and how Tony just wants to go home. We miss our kids, our family, our home, we told him.
Just then we had some great visitors and we all went down to get lunch. While we were sitting there, I received an email from Tony's surgeon.
Good news
Intraoperative biopsies did not show cancer, just scar tissue.
Ted Pappas
I gasped for air. I couldn't believe it. I turned my phone and showed it to Tony. Then Frank, then April. WE WERE ALL SMILING. I forwarded the message to his oncologist. When I turned around, who did I see in the cafeteria? But his oncologist!!! I said, did you hear? Did you get my message? She had not, I shared the news and we did a big hug and celebrated right where we were standing. IT WAS THE BEST NEWS EVER!!!
I replied to his surgeon and said, OMG OMG OMG REALLY? Followed by,
"Does that mean we can go home now?" I asked
"Yes, Tomorrow." He replied
"With or without TPN?"
"Without"
"YES!!!!!!!!!!!!!!!" I responded. HAPPY DAY HAPPY DAY, THANK YOU THANK YOU THANK YOU!!!
SO WITHOUT FURTHER ADIEU...I AM HAPPY TO SHARE THAT AFTER 19 DAYS AT DUKE UNIVERSITY HOSPITAL, TONY LEONARD AND I WILL BE GOING HOME!!! :)
We are surprising our boys at their first football game tomorrow, so please don't spoil the surprise!!! PICTURES TO FOLLOW!!!
We can't thank you all enough for the INCREDIBLE support. The visitors, the gift cards, donations, meals. Its just been amazing. Tony's journey and recovery is far from over. He is still very malnourished, and weak, but we can continue recovering while improving nutrition at home. I cant wait to sleep in the same bed with my love.
With that said, to my fellow caregivers. Don't EVER stop advocating for your loved ones. Wen you feel something is wrong, stomp those feet. Follow your gut. Family time is important. Don't be afraid to accept and ask for help. Demand the best. And most importantly...BELIEVE IN GOD AND MIRACLES!!! THEY REALLY DO HAPPEN EVERY DAY!!!
Tony's oncologist called his surgeon and they discussed a plan. Tony was too have an upper and lower GI scope to determine next steps. But most likely Tony was going to need another surgery. :(
Between being told no more chemo, and Tony being so sick, we decided it was time to for Tony to see everyone. All of our friends and family came over for a great Sunday dinner taking photos and lifting Tony's spirits. Little did they know about his recent obstruction and possible surgery, and neither did the kids. Not only did Tony have an obstruction, he was recovering from aspiration pneumonia.
I have never been so scared...or so I thought. Monday I got his scopes scheduled and he was to start is prep Wed...but low and behold Tony walked into the kitchen Tuesday night and said, I think we need to go to the hospital. TONY NEVER SAYS THAT!!! HE HATES THE HOSPITAL. I paged his oncologist and she called back right away. She said to get Tony to the Duke ER ASAP. She was afraid his obstruction had worsened.
We got to Duke and went straight back to a room. XRAY's, labs etc. Tony's liver enzymes had skyrocketed. I mean 12 to 212, and pancreatic enzymes, 16 to 637. My heart was racing. The attending came in and I demanded a CT. Explained what we had learned just 4 days earlier. He had a CT and it showed the obstruction had in fact worsened. Doc came in and said, I paged the Surgeon on call to see if you're going straight to an OR or a room upstairs. UMMMMMM, Yeahhhh sooooo you are only paging HIS SURGEON. Not some resident on call. When I told him who Tony's surgeon was, the team came down right away. Because Tony was stable, and his surgeon would be arriving in 90 min, we felt it could wait.
I called my mom in tears. "Mom, I don't know what's going on. I'm so scared. Everything is a mess. His pancreas and liver and acting up. He's in so much pain mom." Worse, we STILL didn't know what was causing the obstruction. I just knew...it was causing major issues.
Good news, no surgery that night. going upstairs and waiting for consult with "THE MAN."
Surgery was scheduled for the following Friday, we were told, but he wasn't healthy enough. Tony was so malnourished on a scale from 18-45, Tony was a 7. :( That's when we learned that Tony was to start TPN and had to stay in the hospital until surgery. Then, we needed another 7-10 days for him to recover and get healthy. I had NO idea how to tell the little ones, I had NO idea how I was going to do it, I had NO idea about anything at this point.
After talking to Tony, we decided I need to go home for a couple of days and break the news in person. On the way home, my best friend called me. She was coming to help!!! For as long as we needed her too. She was my angel.
I pulled into the driveway, and surprised the boys...then I heard from Ashton, wait...where's daddy mommy? My heart sunk. I told them to dry off and come inside.
Daddy's going to be in the hospital for a little while. How long mommy? A couple more weeks baby. Aydin ran upstairs and Ashton started to cry. Austin fought his tears, and I could see he wasn't happy. I mean who would be right?
That night, I crawled into bed...and his side of the bed...was empty.
A week went by of me going back and forth to the hospital, it was time for surgery. Surgery was a success, but when I asked about the obstruction...he didn't have an answer for me. He told me pathology would tell us for sure. At this point we were to focus on nutrition and recovery...but me, I only cared about pathology. Was it cancer? or not?
Tony was doing great for the first couple of days and then he took a quick turn and not for the good. Tony began to sleep, and sleep, and sleep. Couldn't hold a conversation and when he was awake, he was staring. When it was time to eat, he had no desire. A couple of bites, and he wanted me to take the tray away. His color was no longer good, and I felt like I was losing him. Four days I said, something is wrong. Four days I said, we are missing something. Four days, I relived what I went through with my mother in law, watching her die.
Palliative care was called. I told him what was going on. He asked me what I needed to know. I said, I need to know if my husband is dying and no one is telling me, I blurted out with tears pouring down my face. I JUST NEEDED TO KNOW!!!! He put his hand on my hand and said, I don't think that is what is going on here. I really don't. I looked up and said, REALLY?? He said, No. I think this is medication, something we did, and we can fix. We went through every little medication, change add, removal etc over the past few days. I said, wait...they increased his pump on Monday. So we decided to decrease his pain pump, and turn off the rest of the meds. The next day, Tony came a little more alert, but still no appetite. I had palliative care paged and said, I don't understand. We had another great conversation about quality of life and family and how Tony just wants to go home. We miss our kids, our family, our home, we told him.
Just then we had some great visitors and we all went down to get lunch. While we were sitting there, I received an email from Tony's surgeon.
Good news
Intraoperative biopsies did not show cancer, just scar tissue.
Ted Pappas
I gasped for air. I couldn't believe it. I turned my phone and showed it to Tony. Then Frank, then April. WE WERE ALL SMILING. I forwarded the message to his oncologist. When I turned around, who did I see in the cafeteria? But his oncologist!!! I said, did you hear? Did you get my message? She had not, I shared the news and we did a big hug and celebrated right where we were standing. IT WAS THE BEST NEWS EVER!!!
I replied to his surgeon and said, OMG OMG OMG REALLY? Followed by,
"Does that mean we can go home now?" I asked
"Yes, Tomorrow." He replied
"With or without TPN?"
"Without"
"YES!!!!!!!!!!!!!!!" I responded. HAPPY DAY HAPPY DAY, THANK YOU THANK YOU THANK YOU!!!
SO WITHOUT FURTHER ADIEU...I AM HAPPY TO SHARE THAT AFTER 19 DAYS AT DUKE UNIVERSITY HOSPITAL, TONY LEONARD AND I WILL BE GOING HOME!!! :)
We are surprising our boys at their first football game tomorrow, so please don't spoil the surprise!!! PICTURES TO FOLLOW!!!
We can't thank you all enough for the INCREDIBLE support. The visitors, the gift cards, donations, meals. Its just been amazing. Tony's journey and recovery is far from over. He is still very malnourished, and weak, but we can continue recovering while improving nutrition at home. I cant wait to sleep in the same bed with my love.
With that said, to my fellow caregivers. Don't EVER stop advocating for your loved ones. Wen you feel something is wrong, stomp those feet. Follow your gut. Family time is important. Don't be afraid to accept and ask for help. Demand the best. And most importantly...BELIEVE IN GOD AND MIRACLES!!! THEY REALLY DO HAPPEN EVERY DAY!!!
Wednesday, August 15, 2018
When Daddy Meets Jesus
My 10 year old Aydin and I had quite the conversation last week. It went like this.
Mom: Aydin, Do you have any questions about what is going on with Daddy?
Aydin: Ummm yeah, actually. When does daddy have chemo again?
It hit me, that Aydin was not aware that we were not going to do any more chemo...
Mom: Well baby, daddy isn't going to get any chemo for a while.
Aydin sat there looking around the room. You could tell he was thinking.
Mom: Do you have another question?
Aydin: Yes...soo if daddy isn't going to be getting chemo, what is going to keep him alive?
Mom (Deep Breath): Well baby, we just need to pray. Pray that daddy can get stronger and maybe gain some weight.
Aydin still had a look of thought on his face.
Mom: What are you thinking about buddy.
Aydin: What its going to be like...ya know.
Mom: I know sweetie, I think about that too sometimes.
Aydin: Mommy? Daddy's side of the bed is going to be empty...
All I could do was wrap my son in his arms and say, you can lay there if you want to.
One day, daddy is going to get to meet Jesus. He is going to prepare heaven for us and be ready to take us home when its our turn. And the truth is, none of us know when that will be. Isn't daddy lucky that he knows that heaven isn't so far away so that he can do ALLLL the things he's ever wanted to do before then? Its kinda neat right? We all say, if you heard the apocalypse was coming, what would you do? So why can't you ask the same question when you are told you have cancer? Because with cancer comes a fight. But sometimes that fight is painful. Sometimes that fight makes you tired and you lose who you are. And its ok to say, Jesus, Take me Home.
One day, my dear hubby will meet our creator. He will be reunited with his brother, him mom, and his dad. I don't know when that day will be, I just pray that I have the strength to keep my family together and Band-Aid their hearts...just for a moment. I want my boys to feel at peace because their daddy is no longer in pain. I don't want people to forget about my boys. I want them to still have a cheering section in the stands. I want people to treat them like NORMAL kids and most importantly I want my boys to SUCCEED.
So where are we in the journey? Tony has developed aspiration pneumonia...again. His liver enzymes have doubled in 2 weeks, white blood cell count is 17.6 (normal is 4.0). Physically he has been very tired and sleeping a lot. Mentally his fight is still on and strong. Friday is a big day for us. We have scans and come up with a plan. A plan that doesn't include chemo.
Saturday the boys come home from Camp Kesem. For those that don't know what that is, it s a camp for kids whose parents have been effected by cancer. It is put on my college students across the country and is FREE to the campers. http://campkesem.org/ its a place for the kids to get a break from what's going on at home and JUST BE KIDS!!! I just want my younger boys to laugh, and smile, and not have a worry on their mind...just for a moment.
BEACH TRIP JULY 2018
CAMP KESEM UNC CHAPEL HILL
Sunday, July 29, 2018
The Chemo Is Killing Him
I don't know what its like to lose a husband. I don't know what its like to lose a child. Right now I just know the pain of losing a brother. Everything else has been in the natural order of things.
What I do know is fear. Fear what its going to be like, guilt for thinking about it, grief of a past life, and anger for cancer making me feel all of this. I feel like I've been given a curfew that isn't fair. A curfew that I know exists but no one will tell me the time.
A month ago we tried a new chemo. Tony was pretty adamant about trying chemo again. He said a break in chemo would kill him. He said he knows what has happened to others when they stop chemo. Where as I disagreed. I felt like the chemo was making him sicker, weaker, and lose weight. But Tony was pretty determined to give it one more shot, and so we did.
Monday he weighed in at 138 pounds at Duke; A 7 pound weight loss in 2 weeks. His oncologist turned his chemo down in hopes that he could maintain his weight and be able to tolerate this new drug. By Thursday Tony was in uncontrollable pain. When its that bad, certain meds help so he can sleep through the pain. Saturday morning I convinced Tony to get on the scale. My fear was spot on, Tony had lost 12 pounds in just 6 days. At the same time his oncologist had emailed me asking for an update. We discussed the past few days and then I saw the last sentence in her email.
Regarding Chemo - NO MORE.
Tony is not able to tolerate anymore chemo...and honestly we are reluctant to try anything else. And now...I'm in uncharted territory.
We have been doing this fight for over six years. We are literally treating an invisible cancer. I truly hate not having a plan. I hate not being able to physically SEE what we are treating. Its hard to know what is the right decision to make. I fear that the chemo is going to take him before the cancer will, but if he doesn't have chemo, its only a matter of time. SO WHAT DO WE DO????? Well, Monday we go back to Duke for labs, fluids, chest x-ray, and a quick visit with the doc, and go from there.
I know he's tired physically, but mentally he's very much still there and wanting to fight. He's loving, kind, gentle, and still spending time with the boys. He's making those times special. He tells me not to worry, and that's he's ok. He allows the boys to play his phone while laying in his armpit. And the boys just want that time with him. It doesn't have to be anything extravagant. Just allowing that time to happen. It means going to bed late, and sharing your bed with the kiddos. It means dinner in bed with daddy, crumbs in the sheets, and a young one on my side of the bed. These memories will be what matters. So with that said, I'm ending this with, instead of typing, I'm going to join Tony and the boys in bed, and treasure every moment. Cause at the end of the day, that's all any of us have.
What I do know is fear. Fear what its going to be like, guilt for thinking about it, grief of a past life, and anger for cancer making me feel all of this. I feel like I've been given a curfew that isn't fair. A curfew that I know exists but no one will tell me the time.
A month ago we tried a new chemo. Tony was pretty adamant about trying chemo again. He said a break in chemo would kill him. He said he knows what has happened to others when they stop chemo. Where as I disagreed. I felt like the chemo was making him sicker, weaker, and lose weight. But Tony was pretty determined to give it one more shot, and so we did.
Monday he weighed in at 138 pounds at Duke; A 7 pound weight loss in 2 weeks. His oncologist turned his chemo down in hopes that he could maintain his weight and be able to tolerate this new drug. By Thursday Tony was in uncontrollable pain. When its that bad, certain meds help so he can sleep through the pain. Saturday morning I convinced Tony to get on the scale. My fear was spot on, Tony had lost 12 pounds in just 6 days. At the same time his oncologist had emailed me asking for an update. We discussed the past few days and then I saw the last sentence in her email.
Regarding Chemo - NO MORE.
Tony is not able to tolerate anymore chemo...and honestly we are reluctant to try anything else. And now...I'm in uncharted territory.
We have been doing this fight for over six years. We are literally treating an invisible cancer. I truly hate not having a plan. I hate not being able to physically SEE what we are treating. Its hard to know what is the right decision to make. I fear that the chemo is going to take him before the cancer will, but if he doesn't have chemo, its only a matter of time. SO WHAT DO WE DO????? Well, Monday we go back to Duke for labs, fluids, chest x-ray, and a quick visit with the doc, and go from there.
I know he's tired physically, but mentally he's very much still there and wanting to fight. He's loving, kind, gentle, and still spending time with the boys. He's making those times special. He tells me not to worry, and that's he's ok. He allows the boys to play his phone while laying in his armpit. And the boys just want that time with him. It doesn't have to be anything extravagant. Just allowing that time to happen. It means going to bed late, and sharing your bed with the kiddos. It means dinner in bed with daddy, crumbs in the sheets, and a young one on my side of the bed. These memories will be what matters. So with that said, I'm ending this with, instead of typing, I'm going to join Tony and the boys in bed, and treasure every moment. Cause at the end of the day, that's all any of us have.
PRAY FOR OUR HERO, OUR WARRIOR, OUR LOVE!! #TEAMTONY
Friday, June 29, 2018
Back To The Hospital
Its been a looooong week.
First I can't thank everyone for the get well cards/notes, gift cards, helping
at the house, prayers, and more this week. Our warrior has been through
hell and back. From his liver enzymes being elevated, white blood cell
count bottoming out, to poking and prodding, test after test. What do the
doctors know??? They don't. The hard part is we just don't know
because Tonys cancer hides and only offers symptoms.
To sum it up, Tony went into the
hospital Monday after a Duke ER visit that was suggested by his oncologist.
Tony DID NOT look so good. He was in excruciating pain, low BP and labs were
not pretty. On top of that he had finished a new chemo about a week prior and
it was hard to know if what was going on was chemo or something else.
Tuesday morning he had a barium
swallow study done that showed Tony has REDICULOUS esophageal spasms. Well DUH
I knew that doc. That's not the issue. Tony had a dilated liver bile duct and
his LFTs (Liver function tests) were a bit elevated. BUT with the power of God
and prayer, they returned to normal in 2 days.
He had a scope done with biopsies
Thursday morning and we hope to have the results next week. The doctors
are starting him on a new medication last night that should stop all the spasms
that are going on from his esophagus down to his large intestine. That
may or may not be the culprit, but it can't hurt to try. The drug will
counteract any of the effects the opiods he is on for pain and initiate
withdrawl from his gut. Yes you read right INITIATE WITHDRAWL.
Its was a long night, but Tony is
strong and was able to get through it. If the opioids that they have him
on have caused this, Tony should experience some relief in the next few
days. If not....well then I fear the worse....cancer spread.
At the end of the day, the good
news is while he was in the hospital his blood pressure is now back to normal,
he's hydrated, he and I have some one on one time and believe it or not, much
needed rest.
We hope to come home from the
hospital today. Tony is ready and honestly, so am I. I know the kids are
ready...its been a long week. I miss them dearly. If you're gonna be sick, and
the docs can't fix it, we'd rather be sick at home.
So where are we....well we are just
going to keep taking one day at a time and keep treating the symptoms. that's
all we really can do. I trust our team of doctors, I just don't trust the data
from the tests. That's a hard place to be in. I will write more later, but for
now...this is where we are.
Saturday, June 23, 2018
....Scan Results After The Break
Its been 6 weeks. An interesting 6 weeks. Lets start with the good news. Our middle son Austin graduated from high school!! BEST PART, TONY WAS HERE TO SEE IT. This time last year, I wasn't so sure he would see Austin cross that stage, but he did. The night he graduated Tony said, "Lord, please let me be here to see my little ones graduate." Aydin and Ashton still have 8-10 years until those days come for them. I listened to his prayer, and quietly thought, Thank you Lord for keeping him here for today. Often times we forget to say thank you. Thank you to our friends, and family. Thank you to our doctors and nurses. And often times, we forget to thank the good Lord upstairs for answering those prayers.
A week before Austin's graduation Tony was pretty sick. We didn't understand why Tony was getting sicker when he was off chemo...except that meant the chemo was working and this break was allowing the cancer to spread. So it was back to Duke we go. They admitted him for some tests to include a spinal tap. 3 days before graduation we got the NEGATIVE. The fear was that the cancer had spread to his spinal fluid...it had not. But why was Tony still sick?
The weekend after Austin's graduation was busy. Ashton's birthday, Father's Day, and Austin's grad party. Tony hardly participated. He was in bed most of the weekend. My gut was in knots. That Monday we went back to Duke. Of course his labs looked great, but Tony, not so much. Tony was very adamant about going back on chemo. He said, "I know what happens to people who stop chemo. This is my life we are talking about." I had never heard Tony be so stern about his health. The problem was though, he had maxed out his other chemo FOLFOX (5FU and Oxaliplatin).
I asked what would be next? I was told Irinotecan. "That's an older chemo right?" I asked. And in fact it was. I also said, what about scans? Don't we want a baseline before we start a new drug? We were told to come back the next day for scans and chemo. UGH...driving and hour and a half home to drive all the way back the next morning.
The next morning while Tony was waiting on chemo, they did scans. Tony started the new drug and within minutes started feeling horribly sick. They gave him another drug which abated the side effects and he felt better. All the meanwhile in the back of my head I'm thinking...what are the results of those scans. What about that spot in his lung? What exactly are we dealing with here? Just as I emailed the doc, the results came in. I couldn't believe what I was reading...the spot that had doubled in size from March to May in his right lung...WAS GONE!!!! IT WAS A MIRACLE!! I continued to read his scan...then I saw it, A NEW SPOT doubled in size on his left lung. I immediately called his doc. She explained to me that it could be inflammation but there is really no way of knowing and that we will just have to continue to watch it. They use the term Wax and Wane. I continued to read but nothing really to discuss. Concerns I had was the slowing down of his bowels and some bile duct dilation which both can cause obstructions. We don't need that right now...
Before I knew it, it was time to go home and it was time to share the next chapter of our journey with the kids. I called them all into the living room and said, dads going back on chemo. Matter of fact, he had it today. Their faces all dropped and they just looked devastated. I said its back to Duke every 2 weeks. I want you all to be prepared he may lose his hair this time. That hit them harder. Its easier to pretend that Daddys not sick when he doesn't "look" sick. Alec was on a cruise so I wasn't able to tell him until today. His response...WHY?!?!?! He was not happy about the news.
Aydin on the other hand has been doing lots of thinking. The other night he was lying on the couch with tears in his eyes. I asked what was wrong and he told me he's been thinking about what life would be like if daddy, well you know mom....died. I took a deep breath, fought back the tears, and decided to share in his fear and acknowledge it. I told him that even though none of us are promised tomorrow, that I too have the same fear. I told him we can be scared together so that we don't have to feel this way or be scared alone. He also asked me what Tony was like before he got sick. What kind of daddy he was. It really started to put more of his feelings and fears into perspective. I asked the older boys to share stories of their childhood with Tony, with Aydin and Ashton. These stories are important and so are the memories.
To sum it all up, I've also learned this is the nature of the beast of stage IV. Some scans will be good, some won't be good, sometimes spots pop up, and sometimes they don't. The truth is, I know there will be an end one day...but it doesn't mean I have to LIVE our life that way. We wake up, we put BOTH feet on the floor, and we continue on with our journey. What is the famous saying, Life is a gift, that's why its called the PRESENT.
A week before Austin's graduation Tony was pretty sick. We didn't understand why Tony was getting sicker when he was off chemo...except that meant the chemo was working and this break was allowing the cancer to spread. So it was back to Duke we go. They admitted him for some tests to include a spinal tap. 3 days before graduation we got the NEGATIVE. The fear was that the cancer had spread to his spinal fluid...it had not. But why was Tony still sick?
The weekend after Austin's graduation was busy. Ashton's birthday, Father's Day, and Austin's grad party. Tony hardly participated. He was in bed most of the weekend. My gut was in knots. That Monday we went back to Duke. Of course his labs looked great, but Tony, not so much. Tony was very adamant about going back on chemo. He said, "I know what happens to people who stop chemo. This is my life we are talking about." I had never heard Tony be so stern about his health. The problem was though, he had maxed out his other chemo FOLFOX (5FU and Oxaliplatin).
I asked what would be next? I was told Irinotecan. "That's an older chemo right?" I asked. And in fact it was. I also said, what about scans? Don't we want a baseline before we start a new drug? We were told to come back the next day for scans and chemo. UGH...driving and hour and a half home to drive all the way back the next morning.
The next morning while Tony was waiting on chemo, they did scans. Tony started the new drug and within minutes started feeling horribly sick. They gave him another drug which abated the side effects and he felt better. All the meanwhile in the back of my head I'm thinking...what are the results of those scans. What about that spot in his lung? What exactly are we dealing with here? Just as I emailed the doc, the results came in. I couldn't believe what I was reading...the spot that had doubled in size from March to May in his right lung...WAS GONE!!!! IT WAS A MIRACLE!! I continued to read his scan...then I saw it, A NEW SPOT doubled in size on his left lung. I immediately called his doc. She explained to me that it could be inflammation but there is really no way of knowing and that we will just have to continue to watch it. They use the term Wax and Wane. I continued to read but nothing really to discuss. Concerns I had was the slowing down of his bowels and some bile duct dilation which both can cause obstructions. We don't need that right now...
Before I knew it, it was time to go home and it was time to share the next chapter of our journey with the kids. I called them all into the living room and said, dads going back on chemo. Matter of fact, he had it today. Their faces all dropped and they just looked devastated. I said its back to Duke every 2 weeks. I want you all to be prepared he may lose his hair this time. That hit them harder. Its easier to pretend that Daddys not sick when he doesn't "look" sick. Alec was on a cruise so I wasn't able to tell him until today. His response...WHY?!?!?! He was not happy about the news.
Aydin on the other hand has been doing lots of thinking. The other night he was lying on the couch with tears in his eyes. I asked what was wrong and he told me he's been thinking about what life would be like if daddy, well you know mom....died. I took a deep breath, fought back the tears, and decided to share in his fear and acknowledge it. I told him that even though none of us are promised tomorrow, that I too have the same fear. I told him we can be scared together so that we don't have to feel this way or be scared alone. He also asked me what Tony was like before he got sick. What kind of daddy he was. It really started to put more of his feelings and fears into perspective. I asked the older boys to share stories of their childhood with Tony, with Aydin and Ashton. These stories are important and so are the memories.
To sum it all up, I've also learned this is the nature of the beast of stage IV. Some scans will be good, some won't be good, sometimes spots pop up, and sometimes they don't. The truth is, I know there will be an end one day...but it doesn't mean I have to LIVE our life that way. We wake up, we put BOTH feet on the floor, and we continue on with our journey. What is the famous saying, Life is a gift, that's why its called the PRESENT.
Subscribe to:
Posts (Atom)