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.
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 =)
Monday, April 22, 2013
Post Ablation ... Pre OMG!
Hmmm, where to begin??? =D
Throughout this journey, I have had some dark times. Some have been shared through either Lauren's CaringBridge journal or here on this blog. Some of it has not been shared. I think it is important for other parents/caregivers to know that they are not alone and that while we try our hardest to remain upbeat and positive, we also have times when the dark horse shows it's ugly face.
Sharing some of this is very hard because it shows our vulnerabilities. We are not always the strong person we portray. Sometimes, it is easier to put a smile on my face and pretend, rather to admit what I am feeling. The fear becomes unbearable at times, but one thing that has remained constant is my HOPE. When presented with ONE option from our conventional team once we found out that her disease was growing during chemo, I never lost HOPE. My hope comes from my LOVE for this girl and the purity she has in her heart. She inspires me in so many ways.
Three weeks ago today Lauren and I were on our way to Alabama for her first ablation procedure. Nervous, but hopeful, we had NO idea how this part of her journey was going to turn out and let me tell you, the "unknowns" are the scariest part of a cancer diagnosis.
Lauren was scanned prior to the procedure (the machines used in this facility have 60% less radiation, allowing for multiple scans without risk of radiation exposure) and we were told that the small nodule that we went back and forth on for the last six months was indeed a nodule and now instead of two nodules, there were three in the left lung. There was also some growth in the nodule in the right lung, not to mention it was sitting in a very tricky place close to the heart and esophagus.
The procedure was done through the back and was only about an hour long using only a local (lidocaine) and sedation. Knowing the right lung was going to be challenging, he chose to do it first. He said he was comfortable that he got about 75% of it using ablation as its location and proximity to the heart made it difficult to freeze because the heart keeps everything warm and heated. He scanned her before we left that day and said that the tumor looked pretty beat up.
The following day we went in for a follow-up scan. I knew in my heart of hearts what I wanted to hear, but always go in with a realistic mind set. When he said the other part of the tumor that he couldn't ablate looked beat up too, my heart skipped a beat. This really was working and with minimal side effects (VAT surgery to remove these tumors would have been a minimum of 2-3 day stay in the hospital)!!! She was sore for the first week or so but gradually got better with each passing day.
We arrived home the following Friday to rest up for a week and then go back to Alabama for the second part of this procedure, ablating the remaining tumors that were in the left lung. We were told that the risk of a pneumorthorax was higher as he would be "poking" her three times but were assured that it could be handled in clinic.
Over the week that we were at home, we increased all of her supplements concentrating on anti-inflammatory in trying to help the right lung heal. We slowly decreased the pain medication and by Monday following her procedure, she was off all narcotics completely. The only residual side effect was the lidocaine injection. Since he used so much, she was still a little numb (more like pins and needles) in the area under her right breast around the ribs.
Iscador was ordered as well as TM, the drug we will be using to lower her copper. She will be on this drug for at least two years as we attempt to keep her at a NED status. We need to the recurrences away for this to really work the way we want.
The second of the two procedures was scheduled for last Tuesday but after two CT scans, with and without contrast, we got the news we were hoping for. The remaining tumors in the left lung had shrunk by 75% with the smallest gone completely! They were so small that the doctor didn't think he could even get to them to ablate them. The curious part of the scan was that the right lung appeared to be full of "something". He quickly ruled out tumor progression and leaned more towards inflammation.
When looking at a scan of the lungs, anything white is pretty scary as they should appear clear. After some discussion, it was believed that the white we saw encompassing Lauren's entire right lung was neutrophils, or STRONG white blood cells fighting off this cancer. While we wanted so badly to have a PET CT done (so that we could get a status of the disease and whether it was truly a dead nodule), if in fact this was inflammation caused by the procedure plus the abundance of WBC's present, this inflammation would also light up rendering the scan unreadable and without definitive answers.
Since Lauren is clearly not symptomatic, we decided to wait three weeks and rescan using the CT machine and if the lung looks better, we will have a PET CT ordered. Since we are in this holding pattern, we have also decided to hold off on the TM and Iscador until we know more.
Because it would have cost more to change flights to go home early than to actually stay in Gulf Shores, we chose to stay. We hung out on the beach doing yoga, went sight seeing and enjoyed a painting class paid for by one of Team Lola's supporters, Charla Miley. Thank you Charla!!! And THANK YOU to everyone who donated to our fundraiser. Without you, none of this would have been possible! We are forever grateful!
April has been a crazy month and it is about to come to a very memorable end. I started this blog last year after attending the Stupid Cancer OMG! Summit for Young Adults. While the Caringbridge journal was a great way to keep everyone up to date on Lauren's journey, I wanted something a little of my own. I wanted to be able to keep everyone updated on Lauren, but also add a little bit of me. Attending the Summit inspired me.
On Thursday, Lauren and I will be leaving for Las Vegas! This trip would not have happened without a grant from Northern Nevada Children's Cancer Foundation, who funded the travel portion of this trip for both of us.
This is THE conference of the year for anyone age 15-40, diagnosed with cancer and their friends/caregivers. This year, I will be a panelist at the break out session for parents of diagnosed "kids" and I couldn't be more excited to offer some of my expertise on this subject! Stupid Cancer has been a lifesaver for both Lauren and I. The support we receive from the foundation and it's members is undeniably, hands down, immeasurable.
I am also in charge of organizing outings for the attendees under the age of 21. What I am most excited about is Lauren meeting these young people. It's important on this journey to not feel alone and being a teenager with cancer has its own challenges in itself, but having friends who can relate (though I do not wish this disease on anyone) helps Lauren feel less disconnected to her peers.
Throughout this journey, I have had some dark times. Some have been shared through either Lauren's CaringBridge journal or here on this blog. Some of it has not been shared. I think it is important for other parents/caregivers to know that they are not alone and that while we try our hardest to remain upbeat and positive, we also have times when the dark horse shows it's ugly face.
Sharing some of this is very hard because it shows our vulnerabilities. We are not always the strong person we portray. Sometimes, it is easier to put a smile on my face and pretend, rather to admit what I am feeling. The fear becomes unbearable at times, but one thing that has remained constant is my HOPE. When presented with ONE option from our conventional team once we found out that her disease was growing during chemo, I never lost HOPE. My hope comes from my LOVE for this girl and the purity she has in her heart. She inspires me in so many ways.
This saying reminds me of why we do what we do...why we advocate!
Three weeks ago today Lauren and I were on our way to Alabama for her first ablation procedure. Nervous, but hopeful, we had NO idea how this part of her journey was going to turn out and let me tell you, the "unknowns" are the scariest part of a cancer diagnosis.
Lauren was scanned prior to the procedure (the machines used in this facility have 60% less radiation, allowing for multiple scans without risk of radiation exposure) and we were told that the small nodule that we went back and forth on for the last six months was indeed a nodule and now instead of two nodules, there were three in the left lung. There was also some growth in the nodule in the right lung, not to mention it was sitting in a very tricky place close to the heart and esophagus.
The procedure was done through the back and was only about an hour long using only a local (lidocaine) and sedation. Knowing the right lung was going to be challenging, he chose to do it first. He said he was comfortable that he got about 75% of it using ablation as its location and proximity to the heart made it difficult to freeze because the heart keeps everything warm and heated. He scanned her before we left that day and said that the tumor looked pretty beat up.
The following day we went in for a follow-up scan. I knew in my heart of hearts what I wanted to hear, but always go in with a realistic mind set. When he said the other part of the tumor that he couldn't ablate looked beat up too, my heart skipped a beat. This really was working and with minimal side effects (VAT surgery to remove these tumors would have been a minimum of 2-3 day stay in the hospital)!!! She was sore for the first week or so but gradually got better with each passing day.
We arrived home the following Friday to rest up for a week and then go back to Alabama for the second part of this procedure, ablating the remaining tumors that were in the left lung. We were told that the risk of a pneumorthorax was higher as he would be "poking" her three times but were assured that it could be handled in clinic.
Over the week that we were at home, we increased all of her supplements concentrating on anti-inflammatory in trying to help the right lung heal. We slowly decreased the pain medication and by Monday following her procedure, she was off all narcotics completely. The only residual side effect was the lidocaine injection. Since he used so much, she was still a little numb (more like pins and needles) in the area under her right breast around the ribs.
Iscador was ordered as well as TM, the drug we will be using to lower her copper. She will be on this drug for at least two years as we attempt to keep her at a NED status. We need to the recurrences away for this to really work the way we want.
The second of the two procedures was scheduled for last Tuesday but after two CT scans, with and without contrast, we got the news we were hoping for. The remaining tumors in the left lung had shrunk by 75% with the smallest gone completely! They were so small that the doctor didn't think he could even get to them to ablate them. The curious part of the scan was that the right lung appeared to be full of "something". He quickly ruled out tumor progression and leaned more towards inflammation.
When looking at a scan of the lungs, anything white is pretty scary as they should appear clear. After some discussion, it was believed that the white we saw encompassing Lauren's entire right lung was neutrophils, or STRONG white blood cells fighting off this cancer. While we wanted so badly to have a PET CT done (so that we could get a status of the disease and whether it was truly a dead nodule), if in fact this was inflammation caused by the procedure plus the abundance of WBC's present, this inflammation would also light up rendering the scan unreadable and without definitive answers.
Since Lauren is clearly not symptomatic, we decided to wait three weeks and rescan using the CT machine and if the lung looks better, we will have a PET CT ordered. Since we are in this holding pattern, we have also decided to hold off on the TM and Iscador until we know more.
Because it would have cost more to change flights to go home early than to actually stay in Gulf Shores, we chose to stay. We hung out on the beach doing yoga, went sight seeing and enjoyed a painting class paid for by one of Team Lola's supporters, Charla Miley. Thank you Charla!!! And THANK YOU to everyone who donated to our fundraiser. Without you, none of this would have been possible! We are forever grateful!
Yoga on the beach
Painting at Life's a Canvas
Beach selfie
April has been a crazy month and it is about to come to a very memorable end. I started this blog last year after attending the Stupid Cancer OMG! Summit for Young Adults. While the Caringbridge journal was a great way to keep everyone up to date on Lauren's journey, I wanted something a little of my own. I wanted to be able to keep everyone updated on Lauren, but also add a little bit of me. Attending the Summit inspired me.
On Thursday, Lauren and I will be leaving for Las Vegas! This trip would not have happened without a grant from Northern Nevada Children's Cancer Foundation, who funded the travel portion of this trip for both of us.
This is THE conference of the year for anyone age 15-40, diagnosed with cancer and their friends/caregivers. This year, I will be a panelist at the break out session for parents of diagnosed "kids" and I couldn't be more excited to offer some of my expertise on this subject! Stupid Cancer has been a lifesaver for both Lauren and I. The support we receive from the foundation and it's members is undeniably, hands down, immeasurable.
I am also in charge of organizing outings for the attendees under the age of 21. What I am most excited about is Lauren meeting these young people. It's important on this journey to not feel alone and being a teenager with cancer has its own challenges in itself, but having friends who can relate (though I do not wish this disease on anyone) helps Lauren feel less disconnected to her peers.
Lauren on the beach showing how to GET BUSY LIVING!
Lauren and I getting ready for OMG!
SUCK IT CANCER!
I've kept you all long enough, but I hope that you have enjoyed reading and sharing in our journey. We love you all and hope that you continue to keep Lauren and our family in your thoughts and prayers as we begin this new part of our journey.
Peace & <3
-cherri
Friday, March 29, 2013
Long Time No Talk ;-)
overwhelmed past participle, past tense of o·ver·whelm
(Verb)
After two very long months (Lauren's last chemo dose was January 21), we finally got the green flag that the cryoablation was happening. It really was a very long two months trying to work this out and I can't tell you how beautifully it came together. There was a lot of back and forth, especially with the four doctors. As luck would have it, Lauren will have two of the BEST Interventional Radiologists working on her and we couldn't be happier. These doctors have really high success rates with high risk recurrence patients, some 10+ years out with no new disease. We are really hopeful that this procedure is going to work. Aside from some residual side effects from the past treatments, Lauren is probably the healthiest that she has ever been which makes her an even better candidate for this procedure. Unlike surgery, this procedure will also initiate a natural response from her immune system, which should take care of any microscopic disease left in her body.
We had discussed in depth on whether to have the procedure(s) done at the same time, 24 hours apart, two weeks apart and one month apart. We finally settled on two weeks apart. Once the wheels started to roll, that good ole' overwhelming feeling started to rear its ugliness and landed me in bed for almost two days last week. Stress in a diabetic works against the body and I was left feeling crummy, with ketones present in my urine. That is not a good thing for a diabetic as ketones mean that your body is attacking itself and can sometimes get you an admit to the hospital to treat if you cannot get it under control. What I was most stressed about - paying for not only one trip to Alabama, but two.
At the suggestion of an awesome friend and cancer survivor (Amanda!!!!), I set up a fundraiser online through Give Forward. As many of my friends know, I have a really hard time asking for help, much less asking for money. It really wasn't the route I wanted to take, but at the time, I felt I had no other choice. My family isn't wealthy. I don't have anyone that I can turn to for that kind of financial assistance. We live paycheck to paycheck, as most cancer families do. Our savings was gone a long time ago and we've sold anything of value to cover living expenses. What happened next amazed me and frankly restored my faith in humanity. Up until last week, I really thought that most people wanted to just sweep childhood cancer under the rug and play like its not real. But people really do rally to help others and our family will be eternally grateful for the help that we have received in a little more than one week. With the help of social media like Twitter, Facebook and Instagram, we have raised almost $4,000 and both trips have been booked. The lodging was donated by Karen Bobe, who owns Sunset Properties in Gulf Shores, through Melissa Byrd, who lost her son Jensen to cancer when he was only five years old. We also received assistance from The Carrie Premsagar Foundation and The For Kids Foundation plus I am still receiving checks in the mail from friends and family. AMAZED is one word that can describe my feelings. HUMBLED is the other. Jim said last night, "When we can, I want to pay these people back." =) Somehow, someway, we will pay it forward. Together, we are stronger!
So ... Lauren and I will be leaving on Monday, April 1st, to head to Alabama to have the first of the two procedures done. We will need to stay a couple of days for follow-up care, home for a week, then back again on April 15th. Rinse. Repeat. We will follow this procedure with high dose immunotherapy and hopefully keep Lauren in a NED status for two years. Once we pass that two year mark, we can breath a deep sigh of relief and not worry as much about recurrences. We could be making medical history here and I couldn't be more excited.
To add to the overwhelming feeling is the fact that my son Tyler is graduating in two months! There are activities to pay for, college applications to fill out, financial aid assistance to submit and I feel like I just keep adding to the list. His prom is tomorrow night of which I will have to succumb to the fact that I will only get to see him and his girlfriend Dani quickly as we stop by the venue on our way back from our St. Baldrick's event down in Oakland (a one day round trip). Sometimes you just have to go with the flow and this is one of those times.
Speaking of St. Baldrick's, Lauren decided yesterday that she would be shaving as well. She has always been the reason why we shave and has always been our cheerleader on the sidelines but this year, she has been moved by the show of support in our childhood cancer community and she wants to show her gratitude and also show other kids with cancer that bald is beautiful! This girl continues to amaze me. We should all aspire to #LoveLikeLola <3
Last but by far not least, Lauren wrote a blog post for the awesome peeps over at Stupid Cancer on how much she loved the OMG2012 Summit for AYA's in Las Vegas last year. It was posted to Act.MTV.com - "MTV Act is where fist-pumping and lending a helping hand collide. We raise a glass to the risk-takers and change-makers, and make it easy for everyone to take action - right now - on issues they care about." A week later, we found out that The Huffington Post wanted to cross-post it and of course we said YES! She is looking forward to contributing more to the Generation WHY side of the Huff Post in the future.
As I draw this blog post to a close, I want to again thank each and every person who has helped our family along the way, whether you helped back in the beginning with meals and the fundraisers and blood drives we did in California, to the AWESOME new friends we have made since moving to Reno, we are so humbled and grateful for your assistance. I will be closing the fundraiser at Give Forward in the next day or so, as we have reached our goal! Without the support of friends like you, we would have never been able to do this and we would be slowly running out of time to treat Lauren's cancer.
(Verb)
- Bury or drown beneath a huge mass.
- Defeat completely.
After two very long months (Lauren's last chemo dose was January 21), we finally got the green flag that the cryoablation was happening. It really was a very long two months trying to work this out and I can't tell you how beautifully it came together. There was a lot of back and forth, especially with the four doctors. As luck would have it, Lauren will have two of the BEST Interventional Radiologists working on her and we couldn't be happier. These doctors have really high success rates with high risk recurrence patients, some 10+ years out with no new disease. We are really hopeful that this procedure is going to work. Aside from some residual side effects from the past treatments, Lauren is probably the healthiest that she has ever been which makes her an even better candidate for this procedure. Unlike surgery, this procedure will also initiate a natural response from her immune system, which should take care of any microscopic disease left in her body.
We had discussed in depth on whether to have the procedure(s) done at the same time, 24 hours apart, two weeks apart and one month apart. We finally settled on two weeks apart. Once the wheels started to roll, that good ole' overwhelming feeling started to rear its ugliness and landed me in bed for almost two days last week. Stress in a diabetic works against the body and I was left feeling crummy, with ketones present in my urine. That is not a good thing for a diabetic as ketones mean that your body is attacking itself and can sometimes get you an admit to the hospital to treat if you cannot get it under control. What I was most stressed about - paying for not only one trip to Alabama, but two.
At the suggestion of an awesome friend and cancer survivor (Amanda!!!!), I set up a fundraiser online through Give Forward. As many of my friends know, I have a really hard time asking for help, much less asking for money. It really wasn't the route I wanted to take, but at the time, I felt I had no other choice. My family isn't wealthy. I don't have anyone that I can turn to for that kind of financial assistance. We live paycheck to paycheck, as most cancer families do. Our savings was gone a long time ago and we've sold anything of value to cover living expenses. What happened next amazed me and frankly restored my faith in humanity. Up until last week, I really thought that most people wanted to just sweep childhood cancer under the rug and play like its not real. But people really do rally to help others and our family will be eternally grateful for the help that we have received in a little more than one week. With the help of social media like Twitter, Facebook and Instagram, we have raised almost $4,000 and both trips have been booked. The lodging was donated by Karen Bobe, who owns Sunset Properties in Gulf Shores, through Melissa Byrd, who lost her son Jensen to cancer when he was only five years old. We also received assistance from The Carrie Premsagar Foundation and The For Kids Foundation plus I am still receiving checks in the mail from friends and family. AMAZED is one word that can describe my feelings. HUMBLED is the other. Jim said last night, "When we can, I want to pay these people back." =) Somehow, someway, we will pay it forward. Together, we are stronger!
So ... Lauren and I will be leaving on Monday, April 1st, to head to Alabama to have the first of the two procedures done. We will need to stay a couple of days for follow-up care, home for a week, then back again on April 15th. Rinse. Repeat. We will follow this procedure with high dose immunotherapy and hopefully keep Lauren in a NED status for two years. Once we pass that two year mark, we can breath a deep sigh of relief and not worry as much about recurrences. We could be making medical history here and I couldn't be more excited.
To add to the overwhelming feeling is the fact that my son Tyler is graduating in two months! There are activities to pay for, college applications to fill out, financial aid assistance to submit and I feel like I just keep adding to the list. His prom is tomorrow night of which I will have to succumb to the fact that I will only get to see him and his girlfriend Dani quickly as we stop by the venue on our way back from our St. Baldrick's event down in Oakland (a one day round trip). Sometimes you just have to go with the flow and this is one of those times.
Speaking of St. Baldrick's, Lauren decided yesterday that she would be shaving as well. She has always been the reason why we shave and has always been our cheerleader on the sidelines but this year, she has been moved by the show of support in our childhood cancer community and she wants to show her gratitude and also show other kids with cancer that bald is beautiful! This girl continues to amaze me. We should all aspire to #LoveLikeLola <3
Last but by far not least, Lauren wrote a blog post for the awesome peeps over at Stupid Cancer on how much she loved the OMG2012 Summit for AYA's in Las Vegas last year. It was posted to Act.MTV.com - "MTV Act is where fist-pumping and lending a helping hand collide. We raise a glass to the risk-takers and change-makers, and make it easy for everyone to take action - right now - on issues they care about." A week later, we found out that The Huffington Post wanted to cross-post it and of course we said YES! She is looking forward to contributing more to the Generation WHY side of the Huff Post in the future.
As I draw this blog post to a close, I want to again thank each and every person who has helped our family along the way, whether you helped back in the beginning with meals and the fundraisers and blood drives we did in California, to the AWESOME new friends we have made since moving to Reno, we are so humbled and grateful for your assistance. I will be closing the fundraiser at Give Forward in the next day or so, as we have reached our goal! Without the support of friends like you, we would have never been able to do this and we would be slowly running out of time to treat Lauren's cancer.
This is an edit of a photo Jim took of Lauren when they were hiking
Lauren, yesterday, at lunch with Jane, one of her chemo nurses that no longer works at the clinic here in Reno
If you are looking for more frequent updates on Lauren's treatment, you can like our Facebook page and keep up there. I will try to update my blog more regularly, but for the month of April, I will barely have time so Facebook will be the easiest way to keep up =)
Happy Easter!
peace & <3
-cherri
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
Thursday, January 10, 2013
Chronic Illness is NOT Okay.
Ever seen the side effects list from a chemotherapy drug? Normally they are listed in three categories -- most likely, less likely and least likely. Under most likely is stuff like nausea and low blood counts while least likely is usually a secondary cancer and death. Usually the most likely will most likely happen. Over the last three years, Lauren has experienced nausea, vomiting, loss of appetite, weight loss (20 lbs in one month), hair loss, hypersensitivity to skin (specifically hands), low blood counts resulting in the need for transfusions, nose bleeds, severe neuropathy that took away her ability to walk unassisted, mucositis so bad she had to be admitted for IV pain management and radiation burns that were in places that NO ONE should ever have skin burns. That's just the short list.
Precursor for the rest of the blog entry -- Lauren and I have talked a lot about how personal these issues are for her, especially being a 15 year old girl, but we both feel that telling her story, in full, may benefit someone else out there that is newly diagnosed. Precautions, at least for some of what she is experiencing, could and should have been taken. Fertility should have been discussed. I've written several times about the seriousness of her radiation side effects. Aside from the fibrosis (no immediate concern, but eventually I am sure she will want to have an intimate relationship), the normal growth of her uterus has been stunted and she will always have the uterus of a 12 year old making it impossible to carry a child to full term. No precautions were taken to harvest eggs or at the very least, tissue so that she could, when the time came, produce her own child. This very thing weighs very heavy with her and it breaks my heart every time we talk about it.
The latest in the barrage of radiation side effects is chronic urethritis, although right now, it is still "undiagnosed". Since September, she has been dealing with classic UTI symptoms, but each time I have them run a culture (this week will be the fourth) nothing grows. Again on Tuesday she presented some pretty serious pain so I had the clinic run another UA. The dip done at the clinic showed WBC and protein present in her urine, but the absence of an increase in her WBC in her blood don't point towards an infection. We opted out of an antibiotic prescription until the culture comes back, because once before the same thing happened yet nothing on the cultures. Anyone who has ever had a UTI or bladder infection knows how uncomfortable and painful they can be. Imagine having those symptoms for over three months. Now, some days are better than others, but when she does have a "flare up" it comes on with a vengeance. The oncologist doesn't really know what to do. The ND thinks that Lauren's body is under a tremendous amount of stress and this is how her body is reacting to the stress. When someone is stressed, nervous or anxious, the organs most affected are the kidneys and bladder so I guess it does make sense that this is where she has the most problems right now. Baths help, as does cold compresses. Medicinally, she is taking some natural stuff (D-Mannose powder and kava capsules) to help, but aren't instant. I have noticed that the more hydrated she is, the better she feels (all around) but it's been difficult to get her to drink massive amounts of water (doc wants 2-3 liters per day). I number the caps of water bottles to keep track. Some days she does really good, but the days where she isn't feeling well (when she really needs it the most) it's almost impossible to get that much water into her little body. It's a touchy subject here at home between the two of us (who said being a caregiver was the easiest job?). Sometimes I become the water police and it's not a fun job (same goes for pills/medications). So today, our home healthcare company delivered 14 liter bags of saline, some pre-filled saline/heparin syringes and a folding IV pole. The only other solution would be to take Lauren to clinic everyday for IV fluids and who knows how much that would cost?!? If she could have her chemo infused here at home she would. You are never as comfortable in the infusion center as you are at home <3
We (me and the ND) talked about hyperbaric oxygen therapy (HBOT) again. I want to explore this more because it can have real healing effects for Lauren and the radiation damage. She is already taking a few things to direct blood supply to the fibrosis to help along the healing process. I am still very open to other "alternative" treatment options as well and believe me, we have discussed some very alternative options. We will never put "all of our eggs in one basket". It's still very hard for me to trust the conventional team and just in the last six months have started to build a relationship. Even though Lauren was treated at CHO and these doctors travel from CHO to Reno, I met Onc#1 the day Lauren was admitted (December 17, 2009) and maybe saw her in-patient once or twice. Our primary was a fellow and he left the hospital in May 2011 to finish up his fellowship in Africa (we still talk in email). He was awesome, but we too had a bit of a rocky road. I am 100% sure it was my persistence but somehow we came to an understanding and it was all good. Most pediatric oncologists aren't open to CAM and I am just happy that ours are (some more reluctantly than others) and have been working wonderfully together. They all love Lauren very much and only want the best for her. That's all I can ask for right?
Now that Lauren is mobile again she has been asking us for a bicycle. We were hesitant because she still has some neuropathy in her feet, primarily the right one. It's impossible for her to stand on her tippy-toes and unless she wants a bike made for a kid, she will need to tippy-toe to stop and start. We didn't think of this when she asked for a bike from the foundation, who adopted us for Christmas. She is now the owner of a hot pink cruiser! We did give her the present a few days early and were disappointed but she was determined to ride with the wind. At that point, it really wasn't safe for her and I was scared to death that she wouldn't be able to stop and would have a bad fall. We searched for adult size tricycles online thinking that would be her best bet while still trying to heal from the neuropathy. Unfortunately, they are not cheap. The same day Jim and I discussed the trike, I got a Facebook message from a dear friend from Dallas. Vickie and Norman Prewitt are family friends who I have known since I was a teenager. Norman was a Firefighter/Paramedic with my dad and I love him like a brother. Their Sunday school class wanted to help our family. Their donation helped us buy Lauren an adult trike and we paid for express shipping to get it here by Christmas. It's perfect for her and it has a basket in the back that Lola can ride in =). Needless to say, we are truly blessed by wonderful friends and family and this Christmas was awesome for our family because of those friends and family. Thank you so much to Vickie and Norman, to The Northern Nevada Children's Cancer Foundation and the office that adopted us (PMA) and everyone else that sent Lauren presents. Our cup runneth over xoxoxo
If you are a close friend, you will know my undying love for all things Bob Marley. His life and music inspire me to be a better person, to love harder. Lauren drew and painted a picture for me for Christmas and I must say I almost cried when I opened it. As any mother can agree, the homemade gifts always mean more...
Lauren wants to do a couple of drawings to raffle off for Team Lola and I think that is a great idea! So stay tuned for her next work of art =)
It's taken me three days to write this blog entry. It's been really tough concentrating and I am glad I am finally done =)
I will close this post with a dedication to a little nine year old named Vinny. I had heard about Vinny through Ariel's momcologist Crystal around a year ago. He has Rhabdomyosarcoma, the same cancer as Ariel. His journey started almost five years ago and he has already been sent home before on hospice only to rally and come back fighting. This time, as his momcologist Sarah writes, is different. A month ago he was expected to live hours or days and he is still holding on but a CaringBridge update last night told us that he is starting to fade slowly. I ask everyone reading this to please lift this family up in prayers. Vinny is so brave and like Lauren, seems too wise for such a young soul.
peace and <3
-cherri
Precursor for the rest of the blog entry -- Lauren and I have talked a lot about how personal these issues are for her, especially being a 15 year old girl, but we both feel that telling her story, in full, may benefit someone else out there that is newly diagnosed. Precautions, at least for some of what she is experiencing, could and should have been taken. Fertility should have been discussed. I've written several times about the seriousness of her radiation side effects. Aside from the fibrosis (no immediate concern, but eventually I am sure she will want to have an intimate relationship), the normal growth of her uterus has been stunted and she will always have the uterus of a 12 year old making it impossible to carry a child to full term. No precautions were taken to harvest eggs or at the very least, tissue so that she could, when the time came, produce her own child. This very thing weighs very heavy with her and it breaks my heart every time we talk about it.
The latest in the barrage of radiation side effects is chronic urethritis, although right now, it is still "undiagnosed". Since September, she has been dealing with classic UTI symptoms, but each time I have them run a culture (this week will be the fourth) nothing grows. Again on Tuesday she presented some pretty serious pain so I had the clinic run another UA. The dip done at the clinic showed WBC and protein present in her urine, but the absence of an increase in her WBC in her blood don't point towards an infection. We opted out of an antibiotic prescription until the culture comes back, because once before the same thing happened yet nothing on the cultures. Anyone who has ever had a UTI or bladder infection knows how uncomfortable and painful they can be. Imagine having those symptoms for over three months. Now, some days are better than others, but when she does have a "flare up" it comes on with a vengeance. The oncologist doesn't really know what to do. The ND thinks that Lauren's body is under a tremendous amount of stress and this is how her body is reacting to the stress. When someone is stressed, nervous or anxious, the organs most affected are the kidneys and bladder so I guess it does make sense that this is where she has the most problems right now. Baths help, as does cold compresses. Medicinally, she is taking some natural stuff (D-Mannose powder and kava capsules) to help, but aren't instant. I have noticed that the more hydrated she is, the better she feels (all around) but it's been difficult to get her to drink massive amounts of water (doc wants 2-3 liters per day). I number the caps of water bottles to keep track. Some days she does really good, but the days where she isn't feeling well (when she really needs it the most) it's almost impossible to get that much water into her little body. It's a touchy subject here at home between the two of us (who said being a caregiver was the easiest job?). Sometimes I become the water police and it's not a fun job (same goes for pills/medications). So today, our home healthcare company delivered 14 liter bags of saline, some pre-filled saline/heparin syringes and a folding IV pole. The only other solution would be to take Lauren to clinic everyday for IV fluids and who knows how much that would cost?!? If she could have her chemo infused here at home she would. You are never as comfortable in the infusion center as you are at home <3
We (me and the ND) talked about hyperbaric oxygen therapy (HBOT) again. I want to explore this more because it can have real healing effects for Lauren and the radiation damage. She is already taking a few things to direct blood supply to the fibrosis to help along the healing process. I am still very open to other "alternative" treatment options as well and believe me, we have discussed some very alternative options. We will never put "all of our eggs in one basket". It's still very hard for me to trust the conventional team and just in the last six months have started to build a relationship. Even though Lauren was treated at CHO and these doctors travel from CHO to Reno, I met Onc#1 the day Lauren was admitted (December 17, 2009) and maybe saw her in-patient once or twice. Our primary was a fellow and he left the hospital in May 2011 to finish up his fellowship in Africa (we still talk in email). He was awesome, but we too had a bit of a rocky road. I am 100% sure it was my persistence but somehow we came to an understanding and it was all good. Most pediatric oncologists aren't open to CAM and I am just happy that ours are (some more reluctantly than others) and have been working wonderfully together. They all love Lauren very much and only want the best for her. That's all I can ask for right?
Now that Lauren is mobile again she has been asking us for a bicycle. We were hesitant because she still has some neuropathy in her feet, primarily the right one. It's impossible for her to stand on her tippy-toes and unless she wants a bike made for a kid, she will need to tippy-toe to stop and start. We didn't think of this when she asked for a bike from the foundation, who adopted us for Christmas. She is now the owner of a hot pink cruiser! We did give her the present a few days early and were disappointed but she was determined to ride with the wind. At that point, it really wasn't safe for her and I was scared to death that she wouldn't be able to stop and would have a bad fall. We searched for adult size tricycles online thinking that would be her best bet while still trying to heal from the neuropathy. Unfortunately, they are not cheap. The same day Jim and I discussed the trike, I got a Facebook message from a dear friend from Dallas. Vickie and Norman Prewitt are family friends who I have known since I was a teenager. Norman was a Firefighter/Paramedic with my dad and I love him like a brother. Their Sunday school class wanted to help our family. Their donation helped us buy Lauren an adult trike and we paid for express shipping to get it here by Christmas. It's perfect for her and it has a basket in the back that Lola can ride in =). Needless to say, we are truly blessed by wonderful friends and family and this Christmas was awesome for our family because of those friends and family. Thank you so much to Vickie and Norman, to The Northern Nevada Children's Cancer Foundation and the office that adopted us (PMA) and everyone else that sent Lauren presents. Our cup runneth over xoxoxo
If you are a close friend, you will know my undying love for all things Bob Marley. His life and music inspire me to be a better person, to love harder. Lauren drew and painted a picture for me for Christmas and I must say I almost cried when I opened it. As any mother can agree, the homemade gifts always mean more...
Lauren wants to do a couple of drawings to raffle off for Team Lola and I think that is a great idea! So stay tuned for her next work of art =)
It's taken me three days to write this blog entry. It's been really tough concentrating and I am glad I am finally done =)
I will close this post with a dedication to a little nine year old named Vinny. I had heard about Vinny through Ariel's momcologist Crystal around a year ago. He has Rhabdomyosarcoma, the same cancer as Ariel. His journey started almost five years ago and he has already been sent home before on hospice only to rally and come back fighting. This time, as his momcologist Sarah writes, is different. A month ago he was expected to live hours or days and he is still holding on but a CaringBridge update last night told us that he is starting to fade slowly. I ask everyone reading this to please lift this family up in prayers. Vinny is so brave and like Lauren, seems too wise for such a young soul.
peace and <3
-cherri
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