I have thought very long and hard about writing this letter to you, but can no longer hold myself back. I just have this feeling like it needs to be known just how much you have changed my life and the perspective of it. As an avid musical theatre actress and HUGE fan of your work, you have inspired me to continue my work in the arts despite the hardships currently facing me. My name is Maddie and I'm 24 years old. I remember watching the Tony's when In The Heights won best musical...it was the same year I got involved in my high school's drama department and I got my first lead role of Vi in the musical Footloose (a show I hear was a favorite of yours as well). I remember being totally blown away and thinking that you were going to go on and make some great work in the future to come. Little did I know you would be satisfying my obsession with the Revolutionary War history in musical format.
When Hamilton first came out I was immediately struck...not just by how perfect the music and lyrics were...but how diverse and unique it was. I actually made so many attachments to characters like Lafayette (I'm French dual-citizen) and Angelica because she stands for equality and isn't afraid to voice what she believes to be true even when others shirk. In a world that is growing darker and darker, your work made it seem less dim to me. I believe in hope more than anything because of you.
I don't want to make a sob story out of this but I was diagnosed with Lymphoma back in 2015 just when Hamilton took flight. As time went on, my cancer didn't respond and only progressed...however I kept fighting. Every time I went into treatment I would listen to the music from Hamilton and even got one of my nurses into it. We'd rock out to "My Shot" because I wasn't going to let cancer take away my shot at life.
Since my diagnosis, I've been writing my own music and lyrics (currently working on an Agatha Christie musical). Your positive messages on your Facebook account are always a pleasure and a joy to wake up to. Everyday I sing away the troubles, sometimes alongside the mixtape. I even wrote a blog to try to reach out to others fighting battles such as my own, and I often drew inspiration through your music and words.
This past month though was a particularly hard one for me...I was told that none of my treatments have worked and my cancer is now incurable....and the first thought to go through my mind was "I am not throwing away my shot"...I told my doctor that I wasn't giving up and have already signed up for clinical trials....even if it kills me. But it's the spirit of Hamilton that has kept me going...
I guess all I'm trying to say is 1) thank you for reading this if you have and 2) your work and all that you do has had such a positive impact on my life, and I don't think I would have gotten this far without you. Even if you never read this letter, I simply had to write it anyway because you deserve so much recognition for turning me into the positive fighter that I am today. Thank you for all that you have done, all that you are doing, and all that is to come from your creative genius.
I have the honor to be your most avid fan-girl,
Maddie S.
Monday, February 6, 2017
Detox
Just figured I'd post a little blurb on here with an update. After my sob story last month, I had a lot to think about. Obviously.
As I stated before, I am NOT giving up and I'm going to keep fighting to the bitter end. So rest assured I'm not just kicking the bucket and watching the days go by. My oncologist told me that I'm supposed to be hearing from someone at NIH about the enrollment for a clinical trial. It's a trial called the "CAR T-cell Project"...no idea what it stands for, but I did get a brief low-down on the details when I met with them last fall. Essentially it's pretty easy. After taking self-injections for at least a week (yay...), I go in one day and have two catheters put in (one in each arm). Through one catheter they withdraw blood and it goes through some kind of machine where they separate the T-cells. They return the leftover blood through the other catheter. Then over 2 or 3 weeks, they genetically modify the cells to attack my cancer. They return my cells (I'm assuming through an IV) and see if it works after about a month. It sounds TOTALLY cool and super sci-fi but I think they are on to something.
While I'm waiting for that phone call from NIH, my doctor and I are trying to look into other clinics around the country if NIH can't take me asap. During this time I've also been trying to eat SUPER HEALTHY. Not just fruits and veggies but I've been looking into supplements and vitamins. I figured I'd give anything a try in order to slow any progression or see if I have any luck in decreasing any cells. I'm desperate for a miracle and I won't go down without a fight.
So I'm currently detoxing this week and boy is it a KILLER. My body is showing all the usual symptoms of detoxing (minor skin irritation, body aches, bloating, and general irritability) but it's draining on me. Don't get me wrong, I'm not overdoing it...I feel like it's necessary to cleanse after having all these toxins roaming in my body. It's just....I can't seem to stay focused. I even got angry at my blender while making a shake last night, because I was so frustrated that I couldn't figure out how to put the lid on. Waking up this morning I had one mission...to search for new motivations to keep me going.
First stop was Hot Topic and I got a new carrying bottle for my shakes...it's a Deadpool design. For those who live under a rock or don't care for superheros, Deadpool is an anti-super-hero who is a cancer survivor and finds humor in everything...my hero through this nightmare.
Then I made a stop for a new heating pad that was on sale at Bed Bath and Beyond, because last night when my back decided to scream for help, my heating pad conveniently disappeared. And once I finish this post, I'm going to be bold and write up a message to one of my idols. He has inspired me to write what's on my mind and in my heart, and his music has been my rock through this whole journey...I'm speaking of none other than the genius himself...Lin-Manuel Miranda. My letter to him will be posted here, in the impossible miracle that he may see it one day.
As I stated before, I am NOT giving up and I'm going to keep fighting to the bitter end. So rest assured I'm not just kicking the bucket and watching the days go by. My oncologist told me that I'm supposed to be hearing from someone at NIH about the enrollment for a clinical trial. It's a trial called the "CAR T-cell Project"...no idea what it stands for, but I did get a brief low-down on the details when I met with them last fall. Essentially it's pretty easy. After taking self-injections for at least a week (yay...), I go in one day and have two catheters put in (one in each arm). Through one catheter they withdraw blood and it goes through some kind of machine where they separate the T-cells. They return the leftover blood through the other catheter. Then over 2 or 3 weeks, they genetically modify the cells to attack my cancer. They return my cells (I'm assuming through an IV) and see if it works after about a month. It sounds TOTALLY cool and super sci-fi but I think they are on to something.
While I'm waiting for that phone call from NIH, my doctor and I are trying to look into other clinics around the country if NIH can't take me asap. During this time I've also been trying to eat SUPER HEALTHY. Not just fruits and veggies but I've been looking into supplements and vitamins. I figured I'd give anything a try in order to slow any progression or see if I have any luck in decreasing any cells. I'm desperate for a miracle and I won't go down without a fight.
So I'm currently detoxing this week and boy is it a KILLER. My body is showing all the usual symptoms of detoxing (minor skin irritation, body aches, bloating, and general irritability) but it's draining on me. Don't get me wrong, I'm not overdoing it...I feel like it's necessary to cleanse after having all these toxins roaming in my body. It's just....I can't seem to stay focused. I even got angry at my blender while making a shake last night, because I was so frustrated that I couldn't figure out how to put the lid on. Waking up this morning I had one mission...to search for new motivations to keep me going.
First stop was Hot Topic and I got a new carrying bottle for my shakes...it's a Deadpool design. For those who live under a rock or don't care for superheros, Deadpool is an anti-super-hero who is a cancer survivor and finds humor in everything...my hero through this nightmare.
Then I made a stop for a new heating pad that was on sale at Bed Bath and Beyond, because last night when my back decided to scream for help, my heating pad conveniently disappeared. And once I finish this post, I'm going to be bold and write up a message to one of my idols. He has inspired me to write what's on my mind and in my heart, and his music has been my rock through this whole journey...I'm speaking of none other than the genius himself...Lin-Manuel Miranda. My letter to him will be posted here, in the impossible miracle that he may see it one day.
Tuesday, January 17, 2017
Numb
I knew something was wrong when I ran into my chemo nurse, and she gave me a hug and hinted at getting me impossible Hamilton tickets. I had an appointment with my oncologist to discuss the results of my PET scan. I told him I didn't want to hear anything through email or over the phone and would wait until I see him in person. I went into this appointment already expecting the worst and hoping for the best. I just wasn't really prepared to actually hear it being said to me.
Excuse me if I sound very blunt. I'm still very numb and recalling what happened makes me want to burst into tears, but it's an important chapter to this adventure and I figured I'd document it here. So after waiting a good long while, my doc comes in and broke the news as gently as one could. He said the treatment didn't work and we are looking at an incurable cancer. The cancer only progressed and even started attacking my bones. My only option is clinical trials at NIH and there are no statistics. I'm in a grey area where I don't know what will happen and how long I have anymore.
As I was hearing all these details of how my odds are low and that this treatment is solely to prolong however long my life may be, I started to drift into my infamous daydreams. I thought to myself that this is kind of like going into a duel. You are facing the end of a gun just a few feet away. You don't know if it will hit or miss. You don't know if you will die slowly, instantly, or escape it all completely intact. It's a risk and once the gun is loaded there's really no going back. I've heard the gun click and bracing for the worst and possibly the unknown. You start to wonder how people will take the news or what legacy you leave behind. But you can't show it...you can't be a coward and run away.
That is the best way I can describe to you how I felt and how I'm still taking the news. Apparently I'm a walking contradiction since I look and feel ok despite the increase in cancer. My doc says that I'm in the best shape to be going into this clinical trial so there is still some hope and I'm not giving up. I will fight this to the bitter end.
But facing ones mortality is truly a struggle that I'm still trying to understand. I feel like I haven't done enough. I feel like I have so much more to do. I want to travel and meet people. I want to go back to school and step back on the stage someday. I am worried about my family and how they will cope with this news. I feel like I've made more mistakes than accomplishments. I don't feel like I've had a chance to make an impact and make a difference. I don't want fame but I want to feel like I succeeded in any of my dreams. God only knows I've been praying and praying and yet I'm given all this!! It makes no sense to me. It's not that I fear death but I fear the lack of what I leave behind.
It's just a lot to take in and the wound is still very fresh. As I said, I will keep on fighting...but I need your help. Please...whoever is reading this...say a little prayer. Not just for me but for my family. Say a prayer for those who are also dealing with horrible news like this as I am not the only one suffering. Say a prayer that one day we find a cure and that future families will never have to face something like this.
Excuse me if I sound very blunt. I'm still very numb and recalling what happened makes me want to burst into tears, but it's an important chapter to this adventure and I figured I'd document it here. So after waiting a good long while, my doc comes in and broke the news as gently as one could. He said the treatment didn't work and we are looking at an incurable cancer. The cancer only progressed and even started attacking my bones. My only option is clinical trials at NIH and there are no statistics. I'm in a grey area where I don't know what will happen and how long I have anymore.
As I was hearing all these details of how my odds are low and that this treatment is solely to prolong however long my life may be, I started to drift into my infamous daydreams. I thought to myself that this is kind of like going into a duel. You are facing the end of a gun just a few feet away. You don't know if it will hit or miss. You don't know if you will die slowly, instantly, or escape it all completely intact. It's a risk and once the gun is loaded there's really no going back. I've heard the gun click and bracing for the worst and possibly the unknown. You start to wonder how people will take the news or what legacy you leave behind. But you can't show it...you can't be a coward and run away.
That is the best way I can describe to you how I felt and how I'm still taking the news. Apparently I'm a walking contradiction since I look and feel ok despite the increase in cancer. My doc says that I'm in the best shape to be going into this clinical trial so there is still some hope and I'm not giving up. I will fight this to the bitter end.
Friday, December 30, 2016
Happy Bags
Sorry for the delay in making a new post. This is becoming a common occurrence on this blog and I apologize...I will try harder to keep up. However with the Christmas/Chanukah/New Years celebrations happening this month, there was just so much to do with so little time! Though I did somehow miraculously managed to get all my Christmas shopping and wrapping done all in one week...along with some crafting on the side. Maybe with these skills I should apply for a job at the North Pole?
So I had one week where I was running all over MD/VA/DC delivering presents to friends of mine. Before that I even managed to push through my cancer treatment fatigue to go to a rally in DC. It was to protest the Dakota Access Pipeline and over 1,000 of us walked down the streets of DC from the Justice Department to the Washington Monument where we had a HUGE rally.
(I'm the one in the center just above the "IS" in the sign wearing a blue beanie!)
Even special speakers came out including Dennis Kucinich, Shailene Woodley, and Chase Iron Eyes, the latter of whom I walked side by side with for most of the march. It was quite the experience and I can't wait to go to more rallies like this in DC...*cough*WOMEN'S MARCH 2017*cough*
I also manged to see the new spin-off Harry Potter movie called "Fantastic Beasts And Where To Find Them" a grand total of 4 times in the span of one month. As a die-hard Harry Potter fan, this movie was absolutely brilliant! I couldn't even contain my excitement as I was bouncing out of my chair during the big reveal ending...no spoilers.
Eventually all this running around and attending outings caught up with me, and I had to stay in for a bit...a lot of napping occurred in December. However it wouldn't stop me from pursuing my big Happy Bags Project. For those just tuning in, I mentioned in a few previous posts how I wanted to do a sort of "give-back" and spread some joy and laughter to those who find it difficult to experience that piece of happiness. I decided I would give out fun little goodie bags to the local children's hospice center. Each had little toys, treats, and activities for all ages, and every bag had my favorite life motto...a quote by Charlie Chaplin which reads "A day without laughter is a day wasted!". I try to live my life by this quote and wanted to share this little piece of wisdom.
So I made 22 bags of various colors and sizes and stashed them all in the trunk of my car. I drove out the next day and was able to deliver most of the bags to the staff members there to deliver to the children.
I sat down with some of the people who work there to discuss where I was coming from with this project, and I explained how I wanted to continue this Happy Bags idea every month or so. I was then told to sign up as a volunteer, to which I could even put my theatre/music talents to good use. I thought this was a brilliant idea as I haven't been working and wanted to personally meet the kids who received the Happy Bags. I immediately signed up and sent in my volunteer application.
About two days later I got an email back with something I was not expecting. One of the people from management responded to me and thanked me for my Happy Bags idea. However she continued to say she admired my courage and strength that I had with my ongoing cancer battle...but that I could in no way be a volunteer for the Hospice Center because I was currently undergoing treatment. Those who know me, know that I will most likely be on some form of treatment the rest of my life....therefore I could never be a volunteer. That shattered a layer of self-respect and pride in me as I really wanted this. They didn't give me any other explanation as to why that rule exists, but they said they wanted to meet with me to discuss if there is anything else I can do to help out. Perhaps I can continue the Happy Bags in some other way?...I won't know until late January when I meet with them. In the meantime I'm just bummed...
January is a month I'm not entirely looking forward to though. I am set to have my next PET scan on the 12th and it will be my first scan after starting this new immunotherapy. I'm already incredibly worried that it may not be having any good effect on the cancer. Just on Christmas day I noticed the lump on the side of my neck seemed more prominent and sore and I had a panic attack during the family dinner. I have a bad feeling I won't be getting good news next month...but I'm trying not to think about it too much...
Thankfully my grandmother and extended family are letting me take a 5 day vacation trip down to South Carolina where I can piece my mind back together and try to relax. Perhaps I will try blogging during my stay there and ignore all my stupid anxieties.
(Me ignoring my anxiety...obviously)
So while I try to relearn how to deep breathe and relax, I hope the rest of you out there have a wonderful start to the new year, and that you all were able to spend time with family, friends, and loved ones over the holiday. *Raises a glass of sparkling cider* So long 2016...you were horrific....and cheers to a better 2017!!! See you all there!
So I had one week where I was running all over MD/VA/DC delivering presents to friends of mine. Before that I even managed to push through my cancer treatment fatigue to go to a rally in DC. It was to protest the Dakota Access Pipeline and over 1,000 of us walked down the streets of DC from the Justice Department to the Washington Monument where we had a HUGE rally.
Even special speakers came out including Dennis Kucinich, Shailene Woodley, and Chase Iron Eyes, the latter of whom I walked side by side with for most of the march. It was quite the experience and I can't wait to go to more rallies like this in DC...*cough*WOMEN'S MARCH 2017*cough*
I also manged to see the new spin-off Harry Potter movie called "Fantastic Beasts And Where To Find Them" a grand total of 4 times in the span of one month. As a die-hard Harry Potter fan, this movie was absolutely brilliant! I couldn't even contain my excitement as I was bouncing out of my chair during the big reveal ending...no spoilers.
Eventually all this running around and attending outings caught up with me, and I had to stay in for a bit...a lot of napping occurred in December. However it wouldn't stop me from pursuing my big Happy Bags Project. For those just tuning in, I mentioned in a few previous posts how I wanted to do a sort of "give-back" and spread some joy and laughter to those who find it difficult to experience that piece of happiness. I decided I would give out fun little goodie bags to the local children's hospice center. Each had little toys, treats, and activities for all ages, and every bag had my favorite life motto...a quote by Charlie Chaplin which reads "A day without laughter is a day wasted!". I try to live my life by this quote and wanted to share this little piece of wisdom.
So I made 22 bags of various colors and sizes and stashed them all in the trunk of my car. I drove out the next day and was able to deliver most of the bags to the staff members there to deliver to the children.
I sat down with some of the people who work there to discuss where I was coming from with this project, and I explained how I wanted to continue this Happy Bags idea every month or so. I was then told to sign up as a volunteer, to which I could even put my theatre/music talents to good use. I thought this was a brilliant idea as I haven't been working and wanted to personally meet the kids who received the Happy Bags. I immediately signed up and sent in my volunteer application.
About two days later I got an email back with something I was not expecting. One of the people from management responded to me and thanked me for my Happy Bags idea. However she continued to say she admired my courage and strength that I had with my ongoing cancer battle...but that I could in no way be a volunteer for the Hospice Center because I was currently undergoing treatment. Those who know me, know that I will most likely be on some form of treatment the rest of my life....therefore I could never be a volunteer. That shattered a layer of self-respect and pride in me as I really wanted this. They didn't give me any other explanation as to why that rule exists, but they said they wanted to meet with me to discuss if there is anything else I can do to help out. Perhaps I can continue the Happy Bags in some other way?...I won't know until late January when I meet with them. In the meantime I'm just bummed...
January is a month I'm not entirely looking forward to though. I am set to have my next PET scan on the 12th and it will be my first scan after starting this new immunotherapy. I'm already incredibly worried that it may not be having any good effect on the cancer. Just on Christmas day I noticed the lump on the side of my neck seemed more prominent and sore and I had a panic attack during the family dinner. I have a bad feeling I won't be getting good news next month...but I'm trying not to think about it too much...
Thankfully my grandmother and extended family are letting me take a 5 day vacation trip down to South Carolina where I can piece my mind back together and try to relax. Perhaps I will try blogging during my stay there and ignore all my stupid anxieties.
So while I try to relearn how to deep breathe and relax, I hope the rest of you out there have a wonderful start to the new year, and that you all were able to spend time with family, friends, and loved ones over the holiday. *Raises a glass of sparkling cider* So long 2016...you were horrific....and cheers to a better 2017!!! See you all there!
Friday, November 25, 2016
The Woes of Thanksgiving
Hey everyone...as I stated in my last post, I went a little MIA to just take some time for myself. I don't really know how well I succeeded in that since I'm still overwhelmed with the stress of cancer issues...but I'm gonna take a moment to catch you up. REWIND!!
In my last post I mentioned how I had breathing problems during my first treatment of this new immunotherapy and that the nurses decided that next time to prevent that from happening I would need to take some pre-meds...no problem. Well the next time I went to my appointment, I was all prepared, didn't even seem anxious about the last time...I just wanted to get in and out that day. They hooked me up, and after dealing with staff problems and blood test result problems, they started me on my pre-med followed by my treatment and then BAM!!!
Last time it was a slow progression of not being able to breathe...this time it was quick and sudden. I felt like I was being strangled from my chest...I would breathe but no air would go into my lungs. I've never had issues with drowning but I guess that's what it feels like. As the nurses rushed over to stop my treatment, give me an emergency shot of steroids, and put an oxygen mask on, I started seeing stars. It was weirdly fascinating actually...my only thought (besides "I can't breathe") was "so this is what the paparazzi look like"...weird I know.
Eventually the nurses got my vitals back to normal and I could breathe easily on my own about 2 minutes later. We started the treatment again and then...no problems. It turns out the reason for my breathing problems was because they were administering it too quickly, and my body wasn't capable of adjusting to the drugs fast enough.
As they say, third times the charm...my next treatment came around and the nurses adjusted my infusion time so I am there for 2 hours COMPLETELY doped up on benadryl and other pre-meds just for precaution. It was smooth sailing and I never stopped breathing...instead I just slept through it. I'm just happy they didn't discontinue this treatment due to my body's reaction. It's not just the breathing problems now...I have MAJOR headaches the day after...so bad I can hardly move without feeling like my head will explode...thankfully that goes away after a day or so.
I've also noticed that my legs are feeling very fatigued due to my being anemic. I can't walk for very long without needing to sit down and take a breather...staircases are the death of me sometimes. Thankfully handicap parking comes in handy for those rough days where I just want to get in and out of the doctors office instead of hiking across an entire parking lot. It also comes in handy on days like Black Friday shopping...which my sister and I experimented on today. We had a lovely spot just waiting by the entrance to the mall, where so many other people were driving in circles to find a spot. Who knew cancer had perks? Haha!
Speaking of Thanksgiving, to be honest, I didn't really look forward to it. After Halloween, it's just been a crazy ride of bad news, unnecessary drama, and raised emotions. But the thing that really set me off was hearing some people complain about petty things the day before Thanksgiving...it really got under my skin this time.
Most people use this day to reflect on what they should be thankful for...but most people don't even realize the enormity of it all. Hell, I don't even need a single holiday every year to know how thankful I am to still be alive! I remind myself everyday and thank God for modern medicines and doctors. A lot of people like me would never make it this far in other countries. So many children go without food, drinkable water, medicine, and even proper education! And to hear people I love complain over something like sweet potatoes or point fingers at others and complain...that just really upsets me. I mean.....
So with Thanksgiving in the past, I urge you all to keep reminding yourselves how lucky you really are. I mean, you are simply lucky to even have internet access and read this silly post!! I'm not saying we all live plentiful lives...I know we all face our own trials and struggles...but there is ALWAYS something to be grateful for. And with that being said, thank you to everyone who has supported me through EVERYTHING...I love you all and I hope you had a happy holiday.
In my last post I mentioned how I had breathing problems during my first treatment of this new immunotherapy and that the nurses decided that next time to prevent that from happening I would need to take some pre-meds...no problem. Well the next time I went to my appointment, I was all prepared, didn't even seem anxious about the last time...I just wanted to get in and out that day. They hooked me up, and after dealing with staff problems and blood test result problems, they started me on my pre-med followed by my treatment and then BAM!!!
Last time it was a slow progression of not being able to breathe...this time it was quick and sudden. I felt like I was being strangled from my chest...I would breathe but no air would go into my lungs. I've never had issues with drowning but I guess that's what it feels like. As the nurses rushed over to stop my treatment, give me an emergency shot of steroids, and put an oxygen mask on, I started seeing stars. It was weirdly fascinating actually...my only thought (besides "I can't breathe") was "so this is what the paparazzi look like"...weird I know.
Eventually the nurses got my vitals back to normal and I could breathe easily on my own about 2 minutes later. We started the treatment again and then...no problems. It turns out the reason for my breathing problems was because they were administering it too quickly, and my body wasn't capable of adjusting to the drugs fast enough.
As they say, third times the charm...my next treatment came around and the nurses adjusted my infusion time so I am there for 2 hours COMPLETELY doped up on benadryl and other pre-meds just for precaution. It was smooth sailing and I never stopped breathing...instead I just slept through it. I'm just happy they didn't discontinue this treatment due to my body's reaction. It's not just the breathing problems now...I have MAJOR headaches the day after...so bad I can hardly move without feeling like my head will explode...thankfully that goes away after a day or so.
I've also noticed that my legs are feeling very fatigued due to my being anemic. I can't walk for very long without needing to sit down and take a breather...staircases are the death of me sometimes. Thankfully handicap parking comes in handy for those rough days where I just want to get in and out of the doctors office instead of hiking across an entire parking lot. It also comes in handy on days like Black Friday shopping...which my sister and I experimented on today. We had a lovely spot just waiting by the entrance to the mall, where so many other people were driving in circles to find a spot. Who knew cancer had perks? Haha!
Speaking of Thanksgiving, to be honest, I didn't really look forward to it. After Halloween, it's just been a crazy ride of bad news, unnecessary drama, and raised emotions. But the thing that really set me off was hearing some people complain about petty things the day before Thanksgiving...it really got under my skin this time.
Most people use this day to reflect on what they should be thankful for...but most people don't even realize the enormity of it all. Hell, I don't even need a single holiday every year to know how thankful I am to still be alive! I remind myself everyday and thank God for modern medicines and doctors. A lot of people like me would never make it this far in other countries. So many children go without food, drinkable water, medicine, and even proper education! And to hear people I love complain over something like sweet potatoes or point fingers at others and complain...that just really upsets me. I mean.....
So with Thanksgiving in the past, I urge you all to keep reminding yourselves how lucky you really are. I mean, you are simply lucky to even have internet access and read this silly post!! I'm not saying we all live plentiful lives...I know we all face our own trials and struggles...but there is ALWAYS something to be grateful for. And with that being said, thank you to everyone who has supported me through EVERYTHING...I love you all and I hope you had a happy holiday.
Monday, October 17, 2016
Mindfulness and Meditation
Uh oh...Maddie's gone MIA again. This time there's really no good explanation why besides just being lost in my thoughts and neglecting to document them. After my week in hell I kind of went into a "hibernation" of thoughts, fears, and seclusion from the world. There was a good week where I just didn't want to do anything. I kind of cut myself off from the world in order to process all the horrible news and doubts I got from the doctors and specialists. It was a blur really. I found it very hard to really take in everything, and guilt started creeping back into my life for having to get my siblings involved with my future transplant now. I felt horrible for my parents who had to take in the information and face the unknown. After the roller coaster of being told either I'm going to be cured or die...I just didn't know how to take this anymore. So I hit my shut down button and turned in on myself.
After a few days of hibernation, I started to be somewhat more active. I took my mom to Gettysburg, took up therapy again, and started attending a "mindfulness and meditation group" which really helped sort out my thoughts in a calming manner. In all honesty, I think I might have been lost without this group. My hair had continued to fall out to the point where I had to completely buzz it off. I also became very weak and my appetite disappeared. If I hadn't joined this mindfulness group and taken up therapy again, I probably wouldn't be here to write on my blog anymore. I would have given up.
The group even helped me get to a state of confidence when faced with my next obstacle...my new treatment. My first immunotherapy appointment was coming up and I went into it thinking "well I've gone through 2 kinds of treatments...I know everyone in the infusion center...I know I can do this and I'll just take whatever symptoms come with it".....little did I know this would be an ordeal on it's own.
I went to my first appointment with my head held high. I greeted the nurses there as if I had just seen them yesterday (it felt like I had). They got the needle into my chemo port with ease, but there was an issue with the blood return. After a few flushes and a little bit of time, they fixed the problem. I was then told that because it's immunotherapy, I didn't need any premeds (chalky steroid pills that keep me awake for hours) and they started me right away on my hour long IV drip. I started watching the news of Hurricane Matthew on their little TV system they have for patients...when all of a sudden I realized I couldn't take a deep breath. At first I just shrugged it off thinking maybe it was my anxiety...and then my breathing got shallower and shallower. I was becoming flushed and had just enough breath to call the nurse over and tell her I couldn't breathe.
All of a sudden it was panic in the infusion center. So many nurses rushed over to take my vitals, put an oxygen mask on, cut off my IV, and call over one of the oncologist to diagnose the situation. Apparently this drug was causing my veins to constrict and they had to administered a drug to fix it. They said I would need to take this as a premed before each of my treatments (darn). Once I was off the oxygen mask they started me up again on my treatment and before I knew it I was done. But since I had never had a breathing problem ever in my life, I was totally scared going to sleep that night...thinking I would go to sleep and stop breathing in the middle of the night and not wake up.
With a little meditation that I had learned from the group I was able to coax myself to sleep and haven't had an issue since. I may not be back to the mindset I was before my week in hell, but I can definitely say without a doubt that thanks to meditations, I am so much more better off than I was before. Sure I have my low points and dark moments but I truly think the positive outweighs the negative. We all have to find things to laugh and smile about. Every once in a while we just need to breathe and take notice that we are. I think everyone, not just cancer patients, should take a moment everyday and just look at themselves from the inside out, breathe, look around, and realize how lucky they are to be alive.
"Look around, look around at how lucky we are to be alive right now!" -Hamilton the musical
After a few days of hibernation, I started to be somewhat more active. I took my mom to Gettysburg, took up therapy again, and started attending a "mindfulness and meditation group" which really helped sort out my thoughts in a calming manner. In all honesty, I think I might have been lost without this group. My hair had continued to fall out to the point where I had to completely buzz it off. I also became very weak and my appetite disappeared. If I hadn't joined this mindfulness group and taken up therapy again, I probably wouldn't be here to write on my blog anymore. I would have given up.
The group even helped me get to a state of confidence when faced with my next obstacle...my new treatment. My first immunotherapy appointment was coming up and I went into it thinking "well I've gone through 2 kinds of treatments...I know everyone in the infusion center...I know I can do this and I'll just take whatever symptoms come with it".....little did I know this would be an ordeal on it's own.
I went to my first appointment with my head held high. I greeted the nurses there as if I had just seen them yesterday (it felt like I had). They got the needle into my chemo port with ease, but there was an issue with the blood return. After a few flushes and a little bit of time, they fixed the problem. I was then told that because it's immunotherapy, I didn't need any premeds (chalky steroid pills that keep me awake for hours) and they started me right away on my hour long IV drip. I started watching the news of Hurricane Matthew on their little TV system they have for patients...when all of a sudden I realized I couldn't take a deep breath. At first I just shrugged it off thinking maybe it was my anxiety...and then my breathing got shallower and shallower. I was becoming flushed and had just enough breath to call the nurse over and tell her I couldn't breathe.
All of a sudden it was panic in the infusion center. So many nurses rushed over to take my vitals, put an oxygen mask on, cut off my IV, and call over one of the oncologist to diagnose the situation. Apparently this drug was causing my veins to constrict and they had to administered a drug to fix it. They said I would need to take this as a premed before each of my treatments (darn). Once I was off the oxygen mask they started me up again on my treatment and before I knew it I was done. But since I had never had a breathing problem ever in my life, I was totally scared going to sleep that night...thinking I would go to sleep and stop breathing in the middle of the night and not wake up.
With a little meditation that I had learned from the group I was able to coax myself to sleep and haven't had an issue since. I may not be back to the mindset I was before my week in hell, but I can definitely say without a doubt that thanks to meditations, I am so much more better off than I was before. Sure I have my low points and dark moments but I truly think the positive outweighs the negative. We all have to find things to laugh and smile about. Every once in a while we just need to breathe and take notice that we are. I think everyone, not just cancer patients, should take a moment everyday and just look at themselves from the inside out, breathe, look around, and realize how lucky they are to be alive.
"Look around, look around at how lucky we are to be alive right now!" -Hamilton the musical
Sunday, September 18, 2016
The Week From Hell
Sorry for being a little MIA lately. This past month has been a roller coaster of news about my cancer and what to expect. To sum things up, the treatment that I have been on since May, "Brentuximab", is no longer working. It keeps my disease stable at the moment but my cancer is no longer responsive and has already shown to have had progressions in certain areas of my body. When I told my oncologist that I felt a lump on my collarbone, he immediately went to work and created a list of appointments for me which all happened this past week. So I guess the best way to talk about it is from the beginning...
MONDAY- This was originally supposed to be the easiest day for me. All I had scheduled was a session with my therapist. While I was there though, I decided to kill two birds with one stone and get my bloodwork done (I was originally getting it done Tuesday). Sadly this was a big mistake as I don't normally go to this lab and the usual guy I go to didn't work at this location. There was one person there, he could hardly speak a word of English, and was ABSOLUTELY HORRIBLE when it came to sticking people with needles. I think he got me at a pressure point or something because my arm was badly bruised afterwards and pain was shooting up to my shoulder. He couldn't even wrap my arm up properly with pressure...needless to say, I will never go back there again.
TUESDAY- Since I had the horror show of getting my bloodwork done the day before, I didn't have anything planned...instead I tried to rest my beaten up arm and was on a strict diet for tomorrow's appointment. Then I get a phone call from my oncologist to discuss my upcoming appointments...and in the middle of the conversation he went very serious and said something that has been echoing in my head lately. He said that because I've never been in remission and had no response from two treatments, I'm what you call "Primary Refractory" (very rare) and my chances of ever being in remission are very slim...pretty much at 20%. My odds aren't great but we both decided to keep moving forward and fight for that cure....I didn't exactly sleep well after that phone conversation...
WEDNESDAY- Today was PET scan day. Which meant I had to roll out of bed at around 5:45am, get changed, and head out to the center of Washington DC in the middle of rush hour traffic to get a scan that can take up to 2 hours to complete. Thankfully one of our family friends, Linda, decided to help us out and drive me to and from my appointment which made for an interesting ride. Haha! This way my mom could catch up on sleep since she came home at 1am from work. The scan went well...so much that I actually slept through half of it and got out 15 minutes earlier than expected. Later that day, my mom and I met up with Linda again and had dinner...I had hardly any appetite and what little I was able to eat, sadly didn't stay with me for very long and I had a rather sickly night.
THURSDAY- The day I was dreading the most...I was scheduled to meet with a top specialist from the National Cancer Institute (NCI)...but in order to get that appointment I had to spend hours of waiting and being carted from one room to the next. After going through intense vehicle inspections and finding my way through a maze of a parking garage, I went to admissions where I registered as a patient. I was surprised to see the lady handling my case was so rude, never smiled, and acted like I just didn't exist. That already gave me a very negative vibe. Next, I was sent to the wrong floor where after waiting 15 minutes in the waiting room I was told where I was correctly supposed to go. I went to get more bloodwork done and by this point I was already on edge. Then I went to the 12th floor for a head to toe physical. After the physical the fellow said that it was going to be up to an hour wait in the room until I met the specialist.
So I decided to pass the time by calling my mom while I waited. I had convinced my mom not to come with me because she already had enough on her mind with the phone call I got on Tuesday and I didn't want her to wait around during tests and things I can do on my own. So we passed the hour by talking on the phone until I heard footsteps on the other side of the door. Then all of a sudden an army of doctors filed into this little room...one of them even wearing a public health officer uniform which was very intimidating. I felt like I was contagious with some rare strand of Ebola or something. The way they looked at me made me feel like I could die at any moment. After they introduced themselves they just stared at me for a few seconds.
The man in the uniform did most of the talking and asked me detailed questions about the start of my cancer all the way to the present. He then continued to my options...he strongly advised I stay away from chemo and go with an immunotherapy, as my body seems to reject chemo treatments and it will only make me weaker. He said that the immunotherapy can be followed up with a transplant...not just any transplant....a donor transplant. My original plan to use my own bone marrow was now off the table simply because my own cells are trying to kill me. Then he went on to say that with the transplant I have a 1/3 chance of being cured, 1/3 chance of having complications and inevitably dying from them, or a 1/3 chance I simply don't make it past the transplant at all. But I have a better chance of surviving this with an immunotherapy rather than a chemo, because the immunotherapy is less toxic and I can build up my strength. The only thing that worried me at that point was...who is going to be the donor. My siblings have to be tested and I didn't want them getting involved in all this. I was devastated. I met up with my mom and Linda afterwards, and they treated me out to bowling and a makeover to get my mind off of things...after a good cry of course. I'm just happy they were there for me when I needed them.
(not actually....this is just how I felt that day lol!)
FRIDAY- This was the day I was going to speak with my oncologist and discuss what the next step was going to be...the only problem was, I waited by the phone all day and never heard from him...I even had a set time I was supposed to expect him to call but the call never came. I sent him an email hoping I'd hear back the next morning...
SATURDAY- I waited by the phone and had my email open most of the day and again didn't hear back...I was beginning to worry that something might be wrong...
SUNDAY (today)- I finally got a call from my oncologist...apparently there was some sort emergency with a patient when he was supposed to call me on Friday. We spent a good 30 minutes discussing the pros and cons of my options when we finally decided that we are going to go with the immunotherapy and potentially a donor bone marrow transplant later down the line. I'll be getting treatment once every 2 weeks and hopefully symptoms won't be too bad. There's no set end date for how long I may be on this as it was only approved a couple months ago, so there are no long term statistics.
So with all this information that I've gotten over the course of 7 days...I feel like I need a serious vacation as an escape to get away from it all. I haven't cried over this since Thursday but I do have this lingering question of "what has happened to my life?"...my odds are no longer very favorable and I don't really know how to take this. I don't know what this means for my future or the plans I once had. I worry about my family and friends and how they will take to this news. All I know is that I have to live every day to the fullest, keep fighting to stay alive, and just give thanks for every moment I get.
MONDAY- This was originally supposed to be the easiest day for me. All I had scheduled was a session with my therapist. While I was there though, I decided to kill two birds with one stone and get my bloodwork done (I was originally getting it done Tuesday). Sadly this was a big mistake as I don't normally go to this lab and the usual guy I go to didn't work at this location. There was one person there, he could hardly speak a word of English, and was ABSOLUTELY HORRIBLE when it came to sticking people with needles. I think he got me at a pressure point or something because my arm was badly bruised afterwards and pain was shooting up to my shoulder. He couldn't even wrap my arm up properly with pressure...needless to say, I will never go back there again.
TUESDAY- Since I had the horror show of getting my bloodwork done the day before, I didn't have anything planned...instead I tried to rest my beaten up arm and was on a strict diet for tomorrow's appointment. Then I get a phone call from my oncologist to discuss my upcoming appointments...and in the middle of the conversation he went very serious and said something that has been echoing in my head lately. He said that because I've never been in remission and had no response from two treatments, I'm what you call "Primary Refractory" (very rare) and my chances of ever being in remission are very slim...pretty much at 20%. My odds aren't great but we both decided to keep moving forward and fight for that cure....I didn't exactly sleep well after that phone conversation...
WEDNESDAY- Today was PET scan day. Which meant I had to roll out of bed at around 5:45am, get changed, and head out to the center of Washington DC in the middle of rush hour traffic to get a scan that can take up to 2 hours to complete. Thankfully one of our family friends, Linda, decided to help us out and drive me to and from my appointment which made for an interesting ride. Haha! This way my mom could catch up on sleep since she came home at 1am from work. The scan went well...so much that I actually slept through half of it and got out 15 minutes earlier than expected. Later that day, my mom and I met up with Linda again and had dinner...I had hardly any appetite and what little I was able to eat, sadly didn't stay with me for very long and I had a rather sickly night.
THURSDAY- The day I was dreading the most...I was scheduled to meet with a top specialist from the National Cancer Institute (NCI)...but in order to get that appointment I had to spend hours of waiting and being carted from one room to the next. After going through intense vehicle inspections and finding my way through a maze of a parking garage, I went to admissions where I registered as a patient. I was surprised to see the lady handling my case was so rude, never smiled, and acted like I just didn't exist. That already gave me a very negative vibe. Next, I was sent to the wrong floor where after waiting 15 minutes in the waiting room I was told where I was correctly supposed to go. I went to get more bloodwork done and by this point I was already on edge. Then I went to the 12th floor for a head to toe physical. After the physical the fellow said that it was going to be up to an hour wait in the room until I met the specialist.
So I decided to pass the time by calling my mom while I waited. I had convinced my mom not to come with me because she already had enough on her mind with the phone call I got on Tuesday and I didn't want her to wait around during tests and things I can do on my own. So we passed the hour by talking on the phone until I heard footsteps on the other side of the door. Then all of a sudden an army of doctors filed into this little room...one of them even wearing a public health officer uniform which was very intimidating. I felt like I was contagious with some rare strand of Ebola or something. The way they looked at me made me feel like I could die at any moment. After they introduced themselves they just stared at me for a few seconds.
The man in the uniform did most of the talking and asked me detailed questions about the start of my cancer all the way to the present. He then continued to my options...he strongly advised I stay away from chemo and go with an immunotherapy, as my body seems to reject chemo treatments and it will only make me weaker. He said that the immunotherapy can be followed up with a transplant...not just any transplant....a donor transplant. My original plan to use my own bone marrow was now off the table simply because my own cells are trying to kill me. Then he went on to say that with the transplant I have a 1/3 chance of being cured, 1/3 chance of having complications and inevitably dying from them, or a 1/3 chance I simply don't make it past the transplant at all. But I have a better chance of surviving this with an immunotherapy rather than a chemo, because the immunotherapy is less toxic and I can build up my strength. The only thing that worried me at that point was...who is going to be the donor. My siblings have to be tested and I didn't want them getting involved in all this. I was devastated. I met up with my mom and Linda afterwards, and they treated me out to bowling and a makeover to get my mind off of things...after a good cry of course. I'm just happy they were there for me when I needed them.
FRIDAY- This was the day I was going to speak with my oncologist and discuss what the next step was going to be...the only problem was, I waited by the phone all day and never heard from him...I even had a set time I was supposed to expect him to call but the call never came. I sent him an email hoping I'd hear back the next morning...
SATURDAY- I waited by the phone and had my email open most of the day and again didn't hear back...I was beginning to worry that something might be wrong...
SUNDAY (today)- I finally got a call from my oncologist...apparently there was some sort emergency with a patient when he was supposed to call me on Friday. We spent a good 30 minutes discussing the pros and cons of my options when we finally decided that we are going to go with the immunotherapy and potentially a donor bone marrow transplant later down the line. I'll be getting treatment once every 2 weeks and hopefully symptoms won't be too bad. There's no set end date for how long I may be on this as it was only approved a couple months ago, so there are no long term statistics.
So with all this information that I've gotten over the course of 7 days...I feel like I need a serious vacation as an escape to get away from it all. I haven't cried over this since Thursday but I do have this lingering question of "what has happened to my life?"...my odds are no longer very favorable and I don't really know how to take this. I don't know what this means for my future or the plans I once had. I worry about my family and friends and how they will take to this news. All I know is that I have to live every day to the fullest, keep fighting to stay alive, and just give thanks for every moment I get.
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