When tucking Lauren into bed at night, I would say "arrivederci" and she would say "au revoir" which both mean "until we meet again". Both words are on my list of tattoos to get this year. We stole it from one of our favorite movies, 13 going on 30.
Last year brought with it a lot of heartache, to say the least, not to mention a feeling of hopelessness that I have never felt before in my life. I would say that, up until Lauren had the psychic reading in July, I was still hopeful that the cannabis oil was going to work. It was then that my hope began to fade and I began to come to terms with what was to come.
I had to continually remind myself that this was Lauren's journey, not mine. She is but part of my journey. Someone given to me to nurture and teach, only she taught me more than I could have ever taught her. I still have panic attacks with thoughts of whether I said all I needed to say. Things I may have forgotten.
In the last two days of her life, I prayed for her to go. I whispered in her ear how much we loved her and that it was okay. That we would be okay. I reminded her that I would keep my promise to take care of Jim. She was so worried about him. Even when the psychic channeled Lauren when she was sedated, less than 48 hours before she took her last breath, Lauren told her she was most worried about her dad. She said that she felt we were not ready yet. That is why I felt it was important for her to know we were and that we would be strong, for her.
I have had to watch my child endure more than most parents ever will. Things only nightmares are made of. Her suffering the last 12 hours. Almost like the final act of a horrible tragedy. I hated that she felt her identity had been stolen. As her mom, I wanted to fix EVERYTHING. But I could not and it will haunt me for the rest of my life.
I don't even know where I am these days. I am coping. That is the best that I can do. I guess I am lucky that I don't have anyone saying "get out, you will feel better" or "it is time to move on" ... In fact, I really don't have anyone saying anything. Sometimes it is good. I need the space. But sometimes the silence can be deafening, frightening, terrifying. But, I digress. I need that perfect someone that doesn't say "what do you need" but just does it.
This year is a new beginning for me. I was not ready to be an empty-nest'er. I am only 41 years old. When I stare into her eyes in the pictures I have hanging, I feel her warmth surround me. She is nurturing me.
Showing posts with label lola scott. Show all posts
Showing posts with label lola scott. Show all posts
Wednesday, January 22, 2014
Thursday, October 24, 2013
Rinse, lather, repeat.
Rinse, lather, repeat. That is how I feel like my life is going right now. I am on a routine and routines are good, right? Just so you know, I hate my routine.
I have been thinking in the back of my head for quite some time about how I have been neglecting this blog. Once Lauren posted the now infamous #LolasBucketList, my attention turned to her new blog, Love Like Lola and the completion of the aforementioned list. When things took a turn for the worst, I had a hard enough time keeping the Team Lola Facebook page updated, much less two different blogs. Alas, I digress. It is what it is...
Dates. They play an ever changing role in our lives. Births. Graduations. Weddings. Anniversaries. Milestones. Since the death of Lauren's best friend Megan in June 2009, I had always told Lauren don't dwell on the day that she died but rejoice on her birthday. We set off balloons to Megan every year since on her birthday in November. But as much as I would say that, I know that day would forever be etched in her memory. June 10th was the day we were told to go home and love one another, because there was nothing more that could be done to help Lauren and her fight against the worst swear word in the English language - cancer.
I tried to stay as optimistic and upbeat as I could from that day forward. If she wanted to talk about "stuff" then we would, but I would never bring it up on my own. I worry myself now about the things that must have crossed her mind. How she must have been thinking about her own mortality. It literally breaks my heart when I think about it. I remember when hospice delivered the oxygen tanks and how long the concentrator stayed unused in a corner. My optimism in believing that it would be weeks if not months before she would even need it. Sigh. If I would have known that I only had two more months with her, how I would have done things so differently.
When her NP told us about George Mark, I remembered a dear friend in my same situation saying it wasn't for her and her family. I hesitated. I spoke briefly to Lauren about it. We had many discussions about me stepping back and taking back my role as Mom and letting hospice take care of her. Of course, I would still need to administer medications round the clock but by this point, she was sleeping with me in my king size bed. It was easy. The night before we decided to go to GM, Lauren was restless and in pain for most of the night. She was still having problems with nausea as well. At one point, she woke up and told me "I think its time. Tonight will be the night mom." I wasn't sure if she was dreaming or not and I told her "That's fine bebe. If it is tonight, then you should not be scared." I laid awake watching her every breath, looking for movement in her chest. Nope, tonight would NOT be the night.
I have briefly mentioned on a few occasions about a psychic reading that Lauren had when we were in LA. Without going into it too much for privacy reasons, I will say that after speaking to the psychic, Lauren had a calm about her and life just made more sense to her. But she was solemn. Reasons became more clear. Unanswered questions were answered. She was holding on for so long because of us, her family, her loved ones. She always put others first before herself. She waited until she thought we were ready and then she did what we told her to do, she let go. I know it was hard for her. She loves us so much and having to watch us go through the pain of losing her was weighing on her every thought.
When I got the news one day after arriving at GM that radiation was no longer an option, my heart sank. She would not be leaving GM like we had planned and moving into our new house in Sacramento. It was Friday and my mom and Tyler were in Reno packing and Jim in Sac working. I called Jim and we decided to drop everything and they would come to us and they would bring Lola, Lauren's beloved child pup. I took Lauren for a walk in her wheelchair to break the painful news to her. God how many times have I had to have these conversations, but this one, this is it. We cried. She played the organ and the piano and we went back to the room. She loved George Mark from the moment we arrived and even asked me on that first day "Can I die here?" (because of television, she had this wild idea that she didn't want to die at home and burden us with that memory) Oh yeah, and she got to throw a slushy on one of her nurses from Children's. It was on her bucketlist =) There is a video on the Love Like Lola site.
They arrived late and mom and Tyler settled into the apartment and Jim and I stayed in the room with Lauren. I had them move in a full size hospital bed that I could sleep in with her. She was on high levels of oxygen by this time and in constant pain, but she was lucid and very aware and talkative. We made a plan to invite a few close friends to visit Saturday. Jim and Tyler went out for surprise tattoos in Lauren's honor while she visited with her friends. They made painted hand-print pictures, laughed hard and had a great time. None of us knew that this would be the last time they would see each other. Plans were made for them to come back the next day, but she began to deteriorate quickly and asked me to not let anymore visitors in, as she was very adamant that she didn't want anyone to see her like that. Always my strong girl.
The last twenty four hours of Lauren's life were the worst, for me, that I have ever had to endure. There are no words to describe the excruciating pain you feel having to watch your child suffer. While we had already started her on the heavy hitter sedation drug and had her on the maximum oxygen, each time her poor little cancer infected body took a breath, her chest would rise and then fall back, and I could tell it was difficult. The end stages of life are not beautiful like in the movies. The last ten hours of her life I begged her to let go. I promised her that it would not be scary. I sang to her and held her hand so tightly. Jim laid on the bed to her right and me in a chair on the left side of her. We stroked her hair and kissed her cheeks and told her that we were ready for her to go. We would be sad, but it was time. Please let go baby. You don't need to suffer anymore.
Shortly before 8am on Thursday, August 8th, Jim noticed that the swelling was back on her right side. The right side. It's always been the problematic side, but also the same side as her port (which is why we had to battle her the day before when her port stopped working - theorizing that it was tumor/end stage related - and had to start a peripheral IV of which I had to hold her down to get it done). The swelling was visually alarming, but in the back of my mind it was just another symptom to throw in that pile of things that I was just unable to control. I wanted to vomit. I stood up and I shouted "Why are you doing this to us God? Why are you letting her suffer like this and making us watch it? I just don't understand!" and at that very moment, Lauren took her last breath. Sweet dreams bebe. Rest well.
George Mark was supposed to be a transition place for Lauren until we got moved. Two days after we lost Lauren, my family moved from Reno to Sac. The house is smaller but I like small. Its cozy. Thankfully between my mother and Danielle, Tyler's girlfriend, Lauren's room was mostly packed. Her bed was still up and made. I laid down in it and held her blanket close, inhaling her scent. Ugh. That vomit feeling again. I still have all of her stuff in boxes on one side of the garage. It takes up one side of the garage! I tried a couple of weeks ago to look through it. I've bought purple plastic bins to preserve certain things. I got as far as opening the lid of one box and couldn't bear to go any farther. In time right?
I tried for hours on the day she passed to figure out what all the eights meant. I mean, August 8 at 8am. Then one of Lauren's friends mentioned the infinity sign and it all made sense. Lauren loved the infinity sign and even had a tattoo of it on her wrist that said "stay strong". Her first of three. Tyler and I have both gone out and got our own renditions of the infinity sign. It will always have a very special meaning for us. She was telling us that she would be with us forever.
We had her Celebration of Life on September 8th. It was amazing and beautiful and everything that was Lauren. We had everyone bring her favorite foods and it was a crazy potluck we affectionately called #EatLikeLola potluck. Some of her dear friends spoke about her and we had two amazing singing performances, one of which was Lauren's favorite song "Warrior" by Demi Lovato. I displayed all of her art from her room along with 70+ pics of her wearing sunglasses. There is a video of it on the Love Like Lola website as well. Thank you so much to everyone who came to say their final goodbyes and to remember Lauren. It was standing room only!
The first couple of weeks after we moved were filled with unpacking, organizing, and decorating. As things started to calm down, I still had the Celebration to plan. I am hoping to find a part time job soon to fill some time. I have cared for Lauren for three and a half years, round the clock. That constant worry feeling is no longer there, for obvious reasons. I often find myself irritable and restless. I do craft projects when those moments hit. There's always candy crush too. =) But honestly, when the bad days come, they hit hard and even the thought of having to work on a day like that is not appealing to me in the slightest.
Its been eleven weeks today. It still feels like yesterday. I made plans to join a support group for parents but haven't gone yet. They only meet once a month. I've spoken twice to palliative nurses at the hospital over the phone. It was nice to let some things out. I have so many memories of Lauren, especially over the June and early July. Fresh GOOD memories. But the ones that are etched in my memories right now are from the last three days of her life. They are not full of joy and bliss. They are straight up out of a horror story and they play over and over in my mind. The picture in this post is the very last picture that I took of her. Six days later she was gone.
My mother went home today. She has stayed with us a total of 17 months in the last three and a half years. I am so thankful that she has the ability to do this. I don't know what I would have done without her. I love you mom and I will miss you. But today, the band-aid was ripped off and I feel as though I am starting the process all over again. This time though, there will be no more major changes. This time I can start to grieve properly and start to settle in my new life, without my daughter.
If you are still with me, thank you for taking the time to read this. It has been a few months in the making and there is so much more I could probably include but I have already spent two days composing this one. It is time to hit the post button and share it on social media. The first thing I am going to do tomorrow is make a list. I need to keep myself busy. I need a list of things that need to be done (more boxes to unpack - procrastinating), a list of classes I want to take and a list for getting started on the creation of The Love Like Lola Foundation. I will also be updating #LolasBucketList with everything that has been accomplished by our wonderful friends around the world as well as anything in the future, as I plan to take care of most of the travel items to spread her ashes.
Really, all I can do right now is live moment to moment. Rinse, lather, repeat.
My beautiful baby girl ... I can no longer see you with my eyes or touch you with my hands, but I will feel you in my heart forever.
#LoveLikeLola
I have been thinking in the back of my head for quite some time about how I have been neglecting this blog. Once Lauren posted the now infamous #LolasBucketList, my attention turned to her new blog, Love Like Lola and the completion of the aforementioned list. When things took a turn for the worst, I had a hard enough time keeping the Team Lola Facebook page updated, much less two different blogs. Alas, I digress. It is what it is...
Dates. They play an ever changing role in our lives. Births. Graduations. Weddings. Anniversaries. Milestones. Since the death of Lauren's best friend Megan in June 2009, I had always told Lauren don't dwell on the day that she died but rejoice on her birthday. We set off balloons to Megan every year since on her birthday in November. But as much as I would say that, I know that day would forever be etched in her memory. June 10th was the day we were told to go home and love one another, because there was nothing more that could be done to help Lauren and her fight against the worst swear word in the English language - cancer.
I tried to stay as optimistic and upbeat as I could from that day forward. If she wanted to talk about "stuff" then we would, but I would never bring it up on my own. I worry myself now about the things that must have crossed her mind. How she must have been thinking about her own mortality. It literally breaks my heart when I think about it. I remember when hospice delivered the oxygen tanks and how long the concentrator stayed unused in a corner. My optimism in believing that it would be weeks if not months before she would even need it. Sigh. If I would have known that I only had two more months with her, how I would have done things so differently.
When her NP told us about George Mark, I remembered a dear friend in my same situation saying it wasn't for her and her family. I hesitated. I spoke briefly to Lauren about it. We had many discussions about me stepping back and taking back my role as Mom and letting hospice take care of her. Of course, I would still need to administer medications round the clock but by this point, she was sleeping with me in my king size bed. It was easy. The night before we decided to go to GM, Lauren was restless and in pain for most of the night. She was still having problems with nausea as well. At one point, she woke up and told me "I think its time. Tonight will be the night mom." I wasn't sure if she was dreaming or not and I told her "That's fine bebe. If it is tonight, then you should not be scared." I laid awake watching her every breath, looking for movement in her chest. Nope, tonight would NOT be the night.
I have briefly mentioned on a few occasions about a psychic reading that Lauren had when we were in LA. Without going into it too much for privacy reasons, I will say that after speaking to the psychic, Lauren had a calm about her and life just made more sense to her. But she was solemn. Reasons became more clear. Unanswered questions were answered. She was holding on for so long because of us, her family, her loved ones. She always put others first before herself. She waited until she thought we were ready and then she did what we told her to do, she let go. I know it was hard for her. She loves us so much and having to watch us go through the pain of losing her was weighing on her every thought.
When I got the news one day after arriving at GM that radiation was no longer an option, my heart sank. She would not be leaving GM like we had planned and moving into our new house in Sacramento. It was Friday and my mom and Tyler were in Reno packing and Jim in Sac working. I called Jim and we decided to drop everything and they would come to us and they would bring Lola, Lauren's beloved child pup. I took Lauren for a walk in her wheelchair to break the painful news to her. God how many times have I had to have these conversations, but this one, this is it. We cried. She played the organ and the piano and we went back to the room. She loved George Mark from the moment we arrived and even asked me on that first day "Can I die here?" (because of television, she had this wild idea that she didn't want to die at home and burden us with that memory) Oh yeah, and she got to throw a slushy on one of her nurses from Children's. It was on her bucketlist =) There is a video on the Love Like Lola site.
They arrived late and mom and Tyler settled into the apartment and Jim and I stayed in the room with Lauren. I had them move in a full size hospital bed that I could sleep in with her. She was on high levels of oxygen by this time and in constant pain, but she was lucid and very aware and talkative. We made a plan to invite a few close friends to visit Saturday. Jim and Tyler went out for surprise tattoos in Lauren's honor while she visited with her friends. They made painted hand-print pictures, laughed hard and had a great time. None of us knew that this would be the last time they would see each other. Plans were made for them to come back the next day, but she began to deteriorate quickly and asked me to not let anymore visitors in, as she was very adamant that she didn't want anyone to see her like that. Always my strong girl.
The last twenty four hours of Lauren's life were the worst, for me, that I have ever had to endure. There are no words to describe the excruciating pain you feel having to watch your child suffer. While we had already started her on the heavy hitter sedation drug and had her on the maximum oxygen, each time her poor little cancer infected body took a breath, her chest would rise and then fall back, and I could tell it was difficult. The end stages of life are not beautiful like in the movies. The last ten hours of her life I begged her to let go. I promised her that it would not be scary. I sang to her and held her hand so tightly. Jim laid on the bed to her right and me in a chair on the left side of her. We stroked her hair and kissed her cheeks and told her that we were ready for her to go. We would be sad, but it was time. Please let go baby. You don't need to suffer anymore.
Shortly before 8am on Thursday, August 8th, Jim noticed that the swelling was back on her right side. The right side. It's always been the problematic side, but also the same side as her port (which is why we had to battle her the day before when her port stopped working - theorizing that it was tumor/end stage related - and had to start a peripheral IV of which I had to hold her down to get it done). The swelling was visually alarming, but in the back of my mind it was just another symptom to throw in that pile of things that I was just unable to control. I wanted to vomit. I stood up and I shouted "Why are you doing this to us God? Why are you letting her suffer like this and making us watch it? I just don't understand!" and at that very moment, Lauren took her last breath. Sweet dreams bebe. Rest well.
George Mark was supposed to be a transition place for Lauren until we got moved. Two days after we lost Lauren, my family moved from Reno to Sac. The house is smaller but I like small. Its cozy. Thankfully between my mother and Danielle, Tyler's girlfriend, Lauren's room was mostly packed. Her bed was still up and made. I laid down in it and held her blanket close, inhaling her scent. Ugh. That vomit feeling again. I still have all of her stuff in boxes on one side of the garage. It takes up one side of the garage! I tried a couple of weeks ago to look through it. I've bought purple plastic bins to preserve certain things. I got as far as opening the lid of one box and couldn't bear to go any farther. In time right?
I tried for hours on the day she passed to figure out what all the eights meant. I mean, August 8 at 8am. Then one of Lauren's friends mentioned the infinity sign and it all made sense. Lauren loved the infinity sign and even had a tattoo of it on her wrist that said "stay strong". Her first of three. Tyler and I have both gone out and got our own renditions of the infinity sign. It will always have a very special meaning for us. She was telling us that she would be with us forever.
We had her Celebration of Life on September 8th. It was amazing and beautiful and everything that was Lauren. We had everyone bring her favorite foods and it was a crazy potluck we affectionately called #EatLikeLola potluck. Some of her dear friends spoke about her and we had two amazing singing performances, one of which was Lauren's favorite song "Warrior" by Demi Lovato. I displayed all of her art from her room along with 70+ pics of her wearing sunglasses. There is a video of it on the Love Like Lola website as well. Thank you so much to everyone who came to say their final goodbyes and to remember Lauren. It was standing room only!
The first couple of weeks after we moved were filled with unpacking, organizing, and decorating. As things started to calm down, I still had the Celebration to plan. I am hoping to find a part time job soon to fill some time. I have cared for Lauren for three and a half years, round the clock. That constant worry feeling is no longer there, for obvious reasons. I often find myself irritable and restless. I do craft projects when those moments hit. There's always candy crush too. =) But honestly, when the bad days come, they hit hard and even the thought of having to work on a day like that is not appealing to me in the slightest.
Its been eleven weeks today. It still feels like yesterday. I made plans to join a support group for parents but haven't gone yet. They only meet once a month. I've spoken twice to palliative nurses at the hospital over the phone. It was nice to let some things out. I have so many memories of Lauren, especially over the June and early July. Fresh GOOD memories. But the ones that are etched in my memories right now are from the last three days of her life. They are not full of joy and bliss. They are straight up out of a horror story and they play over and over in my mind. The picture in this post is the very last picture that I took of her. Six days later she was gone.
My mother went home today. She has stayed with us a total of 17 months in the last three and a half years. I am so thankful that she has the ability to do this. I don't know what I would have done without her. I love you mom and I will miss you. But today, the band-aid was ripped off and I feel as though I am starting the process all over again. This time though, there will be no more major changes. This time I can start to grieve properly and start to settle in my new life, without my daughter.
If you are still with me, thank you for taking the time to read this. It has been a few months in the making and there is so much more I could probably include but I have already spent two days composing this one. It is time to hit the post button and share it on social media. The first thing I am going to do tomorrow is make a list. I need to keep myself busy. I need a list of things that need to be done (more boxes to unpack - procrastinating), a list of classes I want to take and a list for getting started on the creation of The Love Like Lola Foundation. I will also be updating #LolasBucketList with everything that has been accomplished by our wonderful friends around the world as well as anything in the future, as I plan to take care of most of the travel items to spread her ashes.
Really, all I can do right now is live moment to moment. Rinse, lather, repeat.
My beautiful baby girl ... I can no longer see you with my eyes or touch you with my hands, but I will feel you in my heart forever.
#LoveLikeLola
Tuesday, May 7, 2013
Sharing Is Caring
A little over a year ago I was inspired to start this blog. I had been contemplating it for some time. I had been journaling on Caringbridge, mostly about Lauren's journey through treatment. I needed something that I could call my own, while still keeping everyone up to date on Lauren. What was my inspiration you say? It was attending the Stupid Cancer OMG! Summit for Young Adults.
I signed Lauren and I up for this conference for different reasons, yet they were so similar. We were both in desperate need of "fitting in" in a world where we were lost. My friends came to my rescue in the beginning and wrapped their loving protective arms around me, but after the initial shock wore off and things became routine, they had their own lives to get back to while mine stayed on cruise control in Cancerville. The best way to describe how I was feeling is to listen to the song Pardon Me, by Incubus.
So Pardon me while I burst into flames.
I've had enough of the world, and its people's mindless games
So Pardon me while I burn, and rise above the flame
Pardon me, pardon me. I'll never be the same.
I needed a support group or something similar and I found that at OMG2012! I found a renewed spirit that I didn't want to end. Ever. I wanted to place all of these new friends in my purse and take them home with me so that I would have my posse with me at all times. Luckily there's this thing called social media, and while I would love to have all these friends as close as possible, they too have their own lives and keeping in touch via Facebook and Twitter was what I had to settle with for now.
A year has gone by. Over the last year we have been embraced by the Stupid Cancer community in ways I could have never imagined. We were guests on the Stupid Cancer Radio Show and a pic posted of Lauren to cheer her on during treatment is THE most viral photo to date with over 450k likes and over three million people reached. WOW.
But the most powerful to date, for me, is being asked to be on the panel of other caregivers (parents) at the OMG2013 Summit. I felt so honored that they had enough confidence in me and my experiences as a caregiver to Lauren to ask this of me and I honestly couldn't wait to share. I knew that last year's summit was GREAT, but this year, 2013, was going to be AWESOME!
Everyone kept asking me if I was nervous about being a panelist. When you talk about cancer as much as I do, it becomes second nature. I am telling you right now, sans a degree/medical school, I am an honorary Momcologist (mom/nurse/oncologist). If you were to ask me all of Lauren's past and present medication list, I can name it off AND spell every single one (yes, I do have a cheat sheet on my iPhone but that's so I can print it out instead of writing down every single one - she currently takes about 80 pills per day including herbal supplements).
I also feel like I am an expert on telling people what NOT to do! I think all of my fellow panelists reiterated over and over that you HAVE to take time out for yourself. How do we know? Because we didn't and we all suffered for it. Asking for help has never been easy for me and still, to this day, I have trouble reaching out when I need the help. Setting up the fundraiser to help with travel for our Alabama trips wasn't even my idea but a really good friend's and I am so glad I took her advice. But I would have never done that on my own.
Aside from congregating with other Mom & Dad caregivers at OMG2013, I also attended a session on Healthcare Legislation and Reform as well as Expressive Writing For Wellness And Personal Growth, both very important topics to me. In the healthcare session, I learned what options we will have in the future in regards to insurance (something I've always worried about for both Lauren and myself; both having pre-existing conditions). The expressive writing session helped me (and Lauren - the only session we attended together) with the struggling I encounter on how much I want to share. I think it is important to share as much as possible in the hopes that what I am going through will help other Momcologists on their own journeys. And that is all I want to do ... contribute & share.
I met some pretty awesome survivors and caregivers at OMG2013. People of all walks of life, sharing in the same misfortune. Sharing. I love that word and if I didn't take anything away from the summit (and I did!), it is sharing Lauren and her journey with others. Sharing her has been extremely difficult for me since her diagnosis. Just ask her. Two summer camps cancelled at the last minute because I couldn't bear to be away from her (I'm talking about full on anxiety attacks at the thought of her being away from me for more than a few hours). Last year, she went to all the sessions with me. This year, we only went to one together. What I do know is that, if I am going to share her with anyone, it would be the 450+ new friends we made at OMG2013. I trust them. They love her too. Something we would have never found without Stupid Cancer.
Thank you Stupid Cancer.
Be sure to check out the pics from last year and this year ->> link on the right =)
PS. Lauren's CT scan is scheduled for tomorrow! Will update as soon as I get the report =)
I signed Lauren and I up for this conference for different reasons, yet they were so similar. We were both in desperate need of "fitting in" in a world where we were lost. My friends came to my rescue in the beginning and wrapped their loving protective arms around me, but after the initial shock wore off and things became routine, they had their own lives to get back to while mine stayed on cruise control in Cancerville. The best way to describe how I was feeling is to listen to the song Pardon Me, by Incubus.
So Pardon me while I burst into flames.
I've had enough of the world, and its people's mindless games
So Pardon me while I burn, and rise above the flame
Pardon me, pardon me. I'll never be the same.
I needed a support group or something similar and I found that at OMG2012! I found a renewed spirit that I didn't want to end. Ever. I wanted to place all of these new friends in my purse and take them home with me so that I would have my posse with me at all times. Luckily there's this thing called social media, and while I would love to have all these friends as close as possible, they too have their own lives and keeping in touch via Facebook and Twitter was what I had to settle with for now.
A year has gone by. Over the last year we have been embraced by the Stupid Cancer community in ways I could have never imagined. We were guests on the Stupid Cancer Radio Show and a pic posted of Lauren to cheer her on during treatment is THE most viral photo to date with over 450k likes and over three million people reached. WOW.
But the most powerful to date, for me, is being asked to be on the panel of other caregivers (parents) at the OMG2013 Summit. I felt so honored that they had enough confidence in me and my experiences as a caregiver to Lauren to ask this of me and I honestly couldn't wait to share. I knew that last year's summit was GREAT, but this year, 2013, was going to be AWESOME!
Everyone kept asking me if I was nervous about being a panelist. When you talk about cancer as much as I do, it becomes second nature. I am telling you right now, sans a degree/medical school, I am an honorary Momcologist (mom/nurse/oncologist). If you were to ask me all of Lauren's past and present medication list, I can name it off AND spell every single one (yes, I do have a cheat sheet on my iPhone but that's so I can print it out instead of writing down every single one - she currently takes about 80 pills per day including herbal supplements).
I also feel like I am an expert on telling people what NOT to do! I think all of my fellow panelists reiterated over and over that you HAVE to take time out for yourself. How do we know? Because we didn't and we all suffered for it. Asking for help has never been easy for me and still, to this day, I have trouble reaching out when I need the help. Setting up the fundraiser to help with travel for our Alabama trips wasn't even my idea but a really good friend's and I am so glad I took her advice. But I would have never done that on my own.
Aside from congregating with other Mom & Dad caregivers at OMG2013, I also attended a session on Healthcare Legislation and Reform as well as Expressive Writing For Wellness And Personal Growth, both very important topics to me. In the healthcare session, I learned what options we will have in the future in regards to insurance (something I've always worried about for both Lauren and myself; both having pre-existing conditions). The expressive writing session helped me (and Lauren - the only session we attended together) with the struggling I encounter on how much I want to share. I think it is important to share as much as possible in the hopes that what I am going through will help other Momcologists on their own journeys. And that is all I want to do ... contribute & share.
I met some pretty awesome survivors and caregivers at OMG2013. People of all walks of life, sharing in the same misfortune. Sharing. I love that word and if I didn't take anything away from the summit (and I did!), it is sharing Lauren and her journey with others. Sharing her has been extremely difficult for me since her diagnosis. Just ask her. Two summer camps cancelled at the last minute because I couldn't bear to be away from her (I'm talking about full on anxiety attacks at the thought of her being away from me for more than a few hours). Last year, she went to all the sessions with me. This year, we only went to one together. What I do know is that, if I am going to share her with anyone, it would be the 450+ new friends we made at OMG2013. I trust them. They love her too. Something we would have never found without Stupid Cancer.
Thank you Stupid Cancer.
Be sure to check out the pics from last year and this year ->> link on the right =)
PS. Lauren's CT scan is scheduled for tomorrow! Will update as soon as I get the report =)
Saturday, February 2, 2013
The Red Pill or The Blue Pill?
Lauren's first roommate was a 20 year old Leukemia patient. She was about four months into her two year treatment plan. Her mom was a plethora of information and I am not sure I could have made it that first week without her. The girl was a huge help for Lauren too. She showed Lauren her broviac and we talked about what it felt like and how sore she would be the first couple of days. I think she made Lauren feel more at ease in the worst possible situation. Unless you are on the same protocol, chances of seeing a roommate you once had are slim. So when we didn't see her for a few months I thought nothing of it, until Lauren was admitted to the immuno-compromised wing of the oncology floor for IV pain management with a zero ANC. When I first saw her mom, I was actually happy (I was naive back then and didn't think that not seeing someone might mean the worst possible scenario). After we hugged, she pulled me into the kitchen and told me that her daughter had a bad reaction (neuro) to chemo and she was completely immobile, unable to walk, talk, eat. The good news? She was still alive. She may make a full recovery after months and months of rehabilitation. I saw the girl's mom about six months later, when Lauren was getting her broviac taken out and I was hanging in the cafeteria waiting. They were being discharged after over seven months straight in the hospital. I was so happy for them. She was actually walking on her own now and making slow but good progress. I didn't bother asking her about prognosis. It didn't matter. She was alive and going home.
What happened to this girl scared the crap out of me and it has haunted me for the last two years. What if the next protocol we decide to give Lauren does the same thing to her? Exactly how much can one's body take before it finally gives in? Have you ever actually looked at the ingredients for some of these chemotherapy drugs? The suffering they go through while this poison courses through their body. I struggle with the treatment decisions we've made, I've made. Am I being selfish putting Lauren through conventional treatment? Watching your child suffer is the worst possible thing in the world a parent can experience. Your only reason for living is to take care of this child and yet, there is nothing you can do to make them better. Not having control of the situation is unbearably torturous. I have learned over time that I have to let go of what I can't control, but it seems as of late that there is NOTHING in the world under my control.
We got the worst possible news we could get last week. Lauren's tumors are growing, during treatment. Well, one of them is still growing. She also has a new spot that was never reported. So where she stands now is spot #1 and #2 are stable nodules (both in the left lung). Spot #3 has grown a couple of millimeters (located subpleural; right lung) and the SUV has risen and now this new tiny spot that was missed over and over at the base of her right lung. While Lauren's cancer has never appeared to be super aggressive, it is still very smart and continually gives us the finger as it grows stronger and more resistant to what we throw at it. Unfortunately, that is what cancer does.
We met with the conventional team (Onc #1) on Thursday. I had really hoped for more options but as it stands, one was presented. It's a Phase 1 clinical trial at UCSF using Topotecan, Cytoxan (a nitrogen mustard alkylating agent) and Rapamycin (an immunosuppressant drug). While it is a phase 1, all of these agents have been tested separately, so the "1" just means that they are testing these as a new combo. Ironically, when Lauren relapsed the first time in November 2011, low doses of Rapamycin was discussed with her Naturopath. The plan would be to get a few cycles in, repeat imaging to measure response and if there is a response, surgery to remove the remaining nodules, though there is some discussion on whether surgery on both lungs is an option. Theoretically, we'd hope that the remaining small stable nodules would be shrunk by the protocol, only leaving the larger one to remove. The process of removing them is what we are not all on the same page about. The conventional team would love to cut them out, while Lauren's Naturopath thinks that radio frequency or cryo-ablation is a better less invasive option, even though surgically they would be going in thoracoscopically.
The CAM team presented a much different plan. Barring any complications with insurance authorizations (and disagreements from the conventional team), we would take Lauren to Kentucky, where a skilled Interventional Radiologist would ablated the lesions using radio frequency or cryo, while at the same time, injecting the lesions with either BCG (a tuberculosis vaccine) or Iscador. The purpose of the injections would be to further push a response from Lauren's natural immune system. The RFA or CA would push that type of response, where surgery would not. Then add the injection and BAM! her own body's natural defenses should kick in. If we got clear margins, she would be started immediately on the TM (lowers copper) and most likely Iscador sub-q injections. We would need her to stay at a NED status for at least six months (before that sigh of relief comes), but ideally for two years. If at any point during those two years she relapses, then all bets are off and we are back at square one. The good news is that the doctor in Kentucky has had really good results with previous patients; some out as far as 10 years with NED. It's a really promising idea, but I am so damn afraid that insurance will nix this one quickly and from what I understand, the treatment out of pocket is around $15k. How the hell do you put a price on the health of your child? I'd sell everything I owned if it meant it would cure Lauren's cancer. I know every other parent would say the same thing. If insurance rejects this plan, we could still do the ablation procedure using a local doctor (or someone from the Bay area) without the injections (although they are really key in this treatment plan).
So, here we are again. This will be Lauren's FIFTH line of treatment but I am happy to still have options. Some families I know do not have that luxury and it breaks my heart. My first step will be calling the insurance to find out in a general way if they will cover ablation for pulmonary lesions/metastatic disease. Without knowing the answer, we cannot move forward. In addition, I am waiting for more information from Lauren's ND about a test that can be ran prior to starting the Topetecan, as it's sister, Irinotecan has been known to certain people with a specific variance in their enzymes to be *more* toxic to a person without this variance. It's still unclear if this is a problem with Topetecan. Hence, the opening story ... my fear of a toxic reaction she may never recover from. And the side effects list from the Cytoxan are crazy. It in itself is a carcinogen. Again choosing the lesser of two evils isn't easy at all. So the very chemo we use to save her life may cause a secondary cancer. Oh, that's just great (said as sarcastically as humanly possible). Sigh.
So, do we choose the red pill or the blue pill?
peace and <3
-cherri
What happened to this girl scared the crap out of me and it has haunted me for the last two years. What if the next protocol we decide to give Lauren does the same thing to her? Exactly how much can one's body take before it finally gives in? Have you ever actually looked at the ingredients for some of these chemotherapy drugs? The suffering they go through while this poison courses through their body. I struggle with the treatment decisions we've made, I've made. Am I being selfish putting Lauren through conventional treatment? Watching your child suffer is the worst possible thing in the world a parent can experience. Your only reason for living is to take care of this child and yet, there is nothing you can do to make them better. Not having control of the situation is unbearably torturous. I have learned over time that I have to let go of what I can't control, but it seems as of late that there is NOTHING in the world under my control.
We got the worst possible news we could get last week. Lauren's tumors are growing, during treatment. Well, one of them is still growing. She also has a new spot that was never reported. So where she stands now is spot #1 and #2 are stable nodules (both in the left lung). Spot #3 has grown a couple of millimeters (located subpleural; right lung) and the SUV has risen and now this new tiny spot that was missed over and over at the base of her right lung. While Lauren's cancer has never appeared to be super aggressive, it is still very smart and continually gives us the finger as it grows stronger and more resistant to what we throw at it. Unfortunately, that is what cancer does.
We met with the conventional team (Onc #1) on Thursday. I had really hoped for more options but as it stands, one was presented. It's a Phase 1 clinical trial at UCSF using Topotecan, Cytoxan (a nitrogen mustard alkylating agent) and Rapamycin (an immunosuppressant drug). While it is a phase 1, all of these agents have been tested separately, so the "1" just means that they are testing these as a new combo. Ironically, when Lauren relapsed the first time in November 2011, low doses of Rapamycin was discussed with her Naturopath. The plan would be to get a few cycles in, repeat imaging to measure response and if there is a response, surgery to remove the remaining nodules, though there is some discussion on whether surgery on both lungs is an option. Theoretically, we'd hope that the remaining small stable nodules would be shrunk by the protocol, only leaving the larger one to remove. The process of removing them is what we are not all on the same page about. The conventional team would love to cut them out, while Lauren's Naturopath thinks that radio frequency or cryo-ablation is a better less invasive option, even though surgically they would be going in thoracoscopically.
The CAM team presented a much different plan. Barring any complications with insurance authorizations (and disagreements from the conventional team), we would take Lauren to Kentucky, where a skilled Interventional Radiologist would ablated the lesions using radio frequency or cryo, while at the same time, injecting the lesions with either BCG (a tuberculosis vaccine) or Iscador. The purpose of the injections would be to further push a response from Lauren's natural immune system. The RFA or CA would push that type of response, where surgery would not. Then add the injection and BAM! her own body's natural defenses should kick in. If we got clear margins, she would be started immediately on the TM (lowers copper) and most likely Iscador sub-q injections. We would need her to stay at a NED status for at least six months (before that sigh of relief comes), but ideally for two years. If at any point during those two years she relapses, then all bets are off and we are back at square one. The good news is that the doctor in Kentucky has had really good results with previous patients; some out as far as 10 years with NED. It's a really promising idea, but I am so damn afraid that insurance will nix this one quickly and from what I understand, the treatment out of pocket is around $15k. How the hell do you put a price on the health of your child? I'd sell everything I owned if it meant it would cure Lauren's cancer. I know every other parent would say the same thing. If insurance rejects this plan, we could still do the ablation procedure using a local doctor (or someone from the Bay area) without the injections (although they are really key in this treatment plan).
So, here we are again. This will be Lauren's FIFTH line of treatment but I am happy to still have options. Some families I know do not have that luxury and it breaks my heart. My first step will be calling the insurance to find out in a general way if they will cover ablation for pulmonary lesions/metastatic disease. Without knowing the answer, we cannot move forward. In addition, I am waiting for more information from Lauren's ND about a test that can be ran prior to starting the Topetecan, as it's sister, Irinotecan has been known to certain people with a specific variance in their enzymes to be *more* toxic to a person without this variance. It's still unclear if this is a problem with Topetecan. Hence, the opening story ... my fear of a toxic reaction she may never recover from. And the side effects list from the Cytoxan are crazy. It in itself is a carcinogen. Again choosing the lesser of two evils isn't easy at all. So the very chemo we use to save her life may cause a secondary cancer. Oh, that's just great (said as sarcastically as humanly possible). Sigh.
So, do we choose the red pill or the blue pill?
peace and <3
-cherri
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