Friday, September 5, 2014
The life of a 20-something cancer patient: Miracles
The life of a 20-something cancer patient: Miracles: I have always viewed my life to be in a state of constant disarray and unexpected spontaneity. I've continually had focus, and a tight ...
Miracles
I have always viewed my life to be in a state of constant disarray and unexpected spontaneity. I've continually had focus, and a tight grasp on the important elements of life, such as, education, family, morals, and maintaining long-lasting relationships. Other than that I have allowed myself to wander. Not necessarily wander aimlessly, rather, not denying my need to explore. I have always had an undeniable compulsion to try new things. Some might say that I live my life recklessly, but I choose to identify my life as a stimulating adventure. I rarely shy away from jumping in "feet first" to new experiences. I do not regret any of the choices I have made. I may be embarrassed by some of my poor decisions, but I've learned from them instead of punishing myself.
The last ten years have been a roller coaster. I have faced a number of ups and downs with wild twists in-between. The first five years were filled with wonderful highs, and incredible life-changing events. The lows were tough, but they were manageable, and I could get through those dark moments relatively easy. The next five years have been quite the opposite. I have been through peaks and valleys just like the years before, but this time around there have been many more lows than highs. The depression and despair is always lurking behind me, waiting to consume me once again. Alternatively my life has felt less like a roller coast, and more like being lost at sea. Many times I feel stranded and alone even though I have the most incredible friends, family, and healthcare staff supporting me. I feel guilty because I am letting all of these amazing advocates down by not getting better. In turn, my health is declining faster than ever. I am alone on a sinking vessel while mighty winds and waves are whirling all around me. All the while, my support system is stuck on land hoping I find my way home. Until yesterday, I had mentally succumbed to the conclusion that I was destined to sink. I would never find my way home again. To my surprise and elation, yesterday, my path toward home was rediscovered.
At approximately one o'clock in the morning I received the most astonishing and thrilling email of my life. I was unable to sleep(not uncommon for me) because of the pain and nausea I was experiencing. As I laid in bed, I reached over for my cell phone. I figured I would catch up on my news apps, scour Facebook, and possibly play a game or two. After retrieving my phone from my night stand, it buzzed in my hand. I noticed the notification for a new email. I figured it was some trivial email trying to sell me something, or some pointless email I wouldn't even bother opening. I was perplexed to see that the message in my inbox was from a dear friend. I was confused as to why he would be sending me an email at such an absurd hour. I swiftly clicked on the message to read it's contents. I was floored by what was written! He had explained to me that he was a match for my bone marrow transplant. I had no clue that he had already submitted his swab test. I was still gathering the names and information needed to give my doctor in order to send out the testing utensils to those willing to donate. We had time plenty of time to acquire the materials needed considering I cannot have the transplant until after my current round of chemo is complete. I have 2-3 weeks remaining. As I read further into the email, he explained to me he didn't want to wait. He was at the hospital one day and completed the test himself. He sent it off for analysis without mentioning it to me. Of course, he hoped he would be the match, but he wasn't counting on it. Bone marrow is challenging to match. So, as it turns out, he couldn't sleep that night either. He decided to go downstairs to his home office to pay some bills and catch up on some emails. He said that he about fell out of his chair when he read the message that he was a bone marrow match for me. The email said he had 48 hours to reply wether, or not he was still willing to donate. He confessed to me that his hands were shaking and he couldn't type the word "YES' fast enough, in response to the news. He emailed the unbelievable news to me, because he assumed I would be asleep. As soon as I read the last word of that email I screamed "OH MY GOD, OH MY GOD". My husband sprang out of bed disoriented, confused, worried and obviously pretty groggy. I could barely get the words out. I jumped into his arms and declared that a donor match was found! I hugged him tightly as our dogs barked and jumped around in agitation of the situation. As I embraced my husband, I shouted, I HAVE TO CALL MY PARENTS!!!! Jeff informed me that it was two o'clock in the morning, but it didn't faze me. I had to share this incredible news!
I am so outrageously fortunate to have found a bone marrow match and donor, but the most unimaginable part of this story is the revelation of my donor's identity. In a remarkable turn of events my doctor from Arizona is my "knight in shining armor". This man is once again saving my life. He was the only doctor whom ever truly listened to me, and took into account all of my symptoms 5 years ago. I had tirelessly gone from doctor to doctor and to countless hospitals to find out what was wrong with me. All of those physicians gave up on me because the diagnosis wasn't easy to detect, or they would tell me I'm just a hypochondriac. The most frustrating were the doctors who told me I was a young girl and it was all in my head. I just wanted to get out of going to school/work, or I wanted attention. They NEVER stopped to take the time to get to know me, and honestly listened to me. They dismissed me, as well as, the physical pain and mental anguish I was enduring. Dr. Reilly never did that. He fought for me, he listened to me without preconceived notions, and he cared about me. Three years after parting ways from a doctor/patient relationship, we've remain connected. Dr. Reilly has never been just a doctor to me, he is family. Not only did he save my life 5 years ago, he is going to once again save my life by giving me this selfless and generous gift. There are no words, or actions worthy enough to thank this man for what he has and will be giving to me.
Life leads us down many different paths. Many times we wish would could change course, or go back and pick a different path. I know I have felt that way many times, but I have learned that life is honestly about the journey, and the reactions we make in response to the actions we've chosen, as well as, acknowledging the accomplishments we have achieved by facing our fears and life's unexpected twists. No one is invincible, but we all carry a source of unwavering courage and strength within ourselves. We all must remember..."this too shall pass".
The last ten years have been a roller coaster. I have faced a number of ups and downs with wild twists in-between. The first five years were filled with wonderful highs, and incredible life-changing events. The lows were tough, but they were manageable, and I could get through those dark moments relatively easy. The next five years have been quite the opposite. I have been through peaks and valleys just like the years before, but this time around there have been many more lows than highs. The depression and despair is always lurking behind me, waiting to consume me once again. Alternatively my life has felt less like a roller coast, and more like being lost at sea. Many times I feel stranded and alone even though I have the most incredible friends, family, and healthcare staff supporting me. I feel guilty because I am letting all of these amazing advocates down by not getting better. In turn, my health is declining faster than ever. I am alone on a sinking vessel while mighty winds and waves are whirling all around me. All the while, my support system is stuck on land hoping I find my way home. Until yesterday, I had mentally succumbed to the conclusion that I was destined to sink. I would never find my way home again. To my surprise and elation, yesterday, my path toward home was rediscovered.
At approximately one o'clock in the morning I received the most astonishing and thrilling email of my life. I was unable to sleep(not uncommon for me) because of the pain and nausea I was experiencing. As I laid in bed, I reached over for my cell phone. I figured I would catch up on my news apps, scour Facebook, and possibly play a game or two. After retrieving my phone from my night stand, it buzzed in my hand. I noticed the notification for a new email. I figured it was some trivial email trying to sell me something, or some pointless email I wouldn't even bother opening. I was perplexed to see that the message in my inbox was from a dear friend. I was confused as to why he would be sending me an email at such an absurd hour. I swiftly clicked on the message to read it's contents. I was floored by what was written! He had explained to me that he was a match for my bone marrow transplant. I had no clue that he had already submitted his swab test. I was still gathering the names and information needed to give my doctor in order to send out the testing utensils to those willing to donate. We had time plenty of time to acquire the materials needed considering I cannot have the transplant until after my current round of chemo is complete. I have 2-3 weeks remaining. As I read further into the email, he explained to me he didn't want to wait. He was at the hospital one day and completed the test himself. He sent it off for analysis without mentioning it to me. Of course, he hoped he would be the match, but he wasn't counting on it. Bone marrow is challenging to match. So, as it turns out, he couldn't sleep that night either. He decided to go downstairs to his home office to pay some bills and catch up on some emails. He said that he about fell out of his chair when he read the message that he was a bone marrow match for me. The email said he had 48 hours to reply wether, or not he was still willing to donate. He confessed to me that his hands were shaking and he couldn't type the word "YES' fast enough, in response to the news. He emailed the unbelievable news to me, because he assumed I would be asleep. As soon as I read the last word of that email I screamed "OH MY GOD, OH MY GOD". My husband sprang out of bed disoriented, confused, worried and obviously pretty groggy. I could barely get the words out. I jumped into his arms and declared that a donor match was found! I hugged him tightly as our dogs barked and jumped around in agitation of the situation. As I embraced my husband, I shouted, I HAVE TO CALL MY PARENTS!!!! Jeff informed me that it was two o'clock in the morning, but it didn't faze me. I had to share this incredible news!
I am so outrageously fortunate to have found a bone marrow match and donor, but the most unimaginable part of this story is the revelation of my donor's identity. In a remarkable turn of events my doctor from Arizona is my "knight in shining armor". This man is once again saving my life. He was the only doctor whom ever truly listened to me, and took into account all of my symptoms 5 years ago. I had tirelessly gone from doctor to doctor and to countless hospitals to find out what was wrong with me. All of those physicians gave up on me because the diagnosis wasn't easy to detect, or they would tell me I'm just a hypochondriac. The most frustrating were the doctors who told me I was a young girl and it was all in my head. I just wanted to get out of going to school/work, or I wanted attention. They NEVER stopped to take the time to get to know me, and honestly listened to me. They dismissed me, as well as, the physical pain and mental anguish I was enduring. Dr. Reilly never did that. He fought for me, he listened to me without preconceived notions, and he cared about me. Three years after parting ways from a doctor/patient relationship, we've remain connected. Dr. Reilly has never been just a doctor to me, he is family. Not only did he save my life 5 years ago, he is going to once again save my life by giving me this selfless and generous gift. There are no words, or actions worthy enough to thank this man for what he has and will be giving to me.
Life leads us down many different paths. Many times we wish would could change course, or go back and pick a different path. I know I have felt that way many times, but I have learned that life is honestly about the journey, and the reactions we make in response to the actions we've chosen, as well as, acknowledging the accomplishments we have achieved by facing our fears and life's unexpected twists. No one is invincible, but we all carry a source of unwavering courage and strength within ourselves. We all must remember..."this too shall pass".
Tuesday, September 2, 2014
The life of a 20-something cancer patient: Living and Dying
The life of a 20-something cancer patient: Living and Dying: Why is it that with death comes new life? I'm not talking about the actual birth of a baby, I'm talking about taking a closer look ...
Living and Dying
Why is it that with death comes new life? I'm not talking about the actual birth of a baby, I'm talking about taking a closer look at the situations we are currently in. Why do we wait for tragedy before re-evaluating our lives? Why not truly live the life we want everyday, so that death can be more of a celebration of the deceased instead of a time of extreme sadness and mourning? I am in no way belittling funerals, mourning the loss of a loved one, or grieving the best ways we know how. I am only suggesting that we assess our lives more often than after a casualty.
I have been told by many doctors that my life will be cut short. Most of my family has come to realize that they will likely outlive me. Recognizing that is not easy to digest. It has taken a while for the news to settle in, and some of my family and friends choose not to accept it. I commend them for their positivity and hopefulness. I am extremely grateful to them for helping me through this horrific fight and for giving me the strength I need when I feel too weak to keep going. Their vitality, courage, strong will, faith, and love for me is what allows me to face each treatment, each surgery, each procedure, each doctor's appointment. All of the bad news I have received over the years has been easier to bear because of them. Every one of my family and friends have the ability to highlight the positive diagnoses and the challenges I have been able to overcome. I am surrounded by so many amazing people whom allow me to embrace life and live it to the fullest, despite that fact that I have cancer. There are many people who look at me with pity and sadness in their eyes, but my true friends and family still look at me as Meg. Meg, the silly, lighthearted, loving, caring, brave, unwavering, and a little bit crazy girl they've always known. My hair might be gone, I may be puffy and swollen from tumors and medications, I may get tired a lot faster and have to take more breaks during the day. I may only be able to wear sweatshirts(even if it's 100 degrees outside) and yoga pants because all other fabrics make my skin crawl. I may stand up to do something, but by the time I take two steps I've forgotten what I was going to do(because of the chemo and my daily medications). All of these things have changed my life, but I am still the same Meg inside. I will continue to laugh at my forgetfulness, I'll rock my bald head and I'll spice up my look with fun and colorful head wraps. I will always say what's on my mind without a filter. I will never be afraid to be loud, crazy and goofy in public(even though I might embarrass those with me). I will never stop singing at the top of my lungs along with the radio in the car, and bust out my sweet car dancing moves. Most of all I will never stop loving with my whole heart. At no time will I stop seeing the good in everyone I meet, even if I have to dig deep to set it free. Above all else, I will ALWAYS have a smile on my face. Sometimes that's all a person needs to brighten their day.
I want to take a moment to talk about a recent death that has had an immense impact on me. Being a cancer patient I encounter death more than I ever thought I would. I can't say that I have grown accustom to death and dying, but I've learned how to cope with the departure of a friend or family member. I have never cried over a celebrities death before the recent passing of Robin Williams. I have tirelessly cried because of the astute losses in my life, but never over someone in the public eye. I noticed a substantial change in emotion when I teared up over losing such an inspiring actor. I never met this man, yet he brought so much joy to my life, and to the life of so many others.
I am obviously profoundly distressed by his untimely passing, but at the same time, I am beyond grateful for the laughter and warmth he shared with the world. I doubt the world will ever see a soul as beautiful as Robin Williams. We will never know the pain he felt that led him to taking his own life, but we are lucky that his uplifting spirit and his undeniable talent will live on forever. May he rest in peace. Thank you, Robin Williams, for sharing your life with us all.
Death is inevitable. Sometimes we are aware the time is near. Other times death comes without warning. We will never know when our day will come to leave this earth. I am not happy that I have cancer, but it has allowed me to slow down and grasp what is genuinely important to me. Life is stressful, confusing, and, at times, unbearable. Take the time to stop and embrace life when you can. I have seriously thought about and attempted to end my life a few times, but I was lucky enough to be surrounded love stronger than any cancer. I am committed to celebrating my life from this point on. However much time I have left, I am going to live to the fullest! When the day comes that my life is finished, I want a party, not a funeral. Celebrate all the times we've shared. Please do not dwell on the unavoidable. Coming or going, I will forever be smiling!
Monday, September 1, 2014
The life of a 20-something cancer patient: Help For Us All
The life of a 20-something cancer patient: Help For Us All: Happy Labor Day! I hope that most, if not all, of you are enjoying an extra day off from work/school. I was flipping through the channels...
Help For Us All
Happy Labor Day! I hope that most, if not all, of you are enjoying an extra day off from work/school.
I was flipping through the channels on TV last night, and I came across the MDA telethon. It brought back a flood of memories. My family and I were usually in Iowa visiting my Grandma during Labor Day weekend. My grandma and my Aunt Karen would stay up ALL night to watch the telethon(back when Jerry Lee Lewis hosted). I was a girl of only eight or nine, so I wasn't sure what MDA was, or who more than half of the performers and spokespeople were. I just enjoyed spending time with my family. My parents and my sister would go to bed at a "normal" bed time. They would take me to bed as well, but I would wait until they were asleep to sneak out and watch the rest of the marathon with Grams and Karen. They would oogle at their favorite performers and cry at the sad stories of the struggling children. I would end up watching my Grams and my auntie Karen more than the actual telethon. I would become completely enamored by the response my family would have to complete strangers. It was inspiring. I would constantly ask them questions about muscular diseases and try to understand what the telethon was all about. The would never get annoyed by my persistent inquiries. They would answer to the best of their knowledge, and we would continue watching Jerry Lee Lewis and all his antics. I hold tightly onto those memories. It was such an innocent and bonding time. I'm so grateful they included me in their Labor Day ritual instead of ratting me out to my parents for being up past my bedtime.
Another staple of Labor Day was "filling the boot". For those of you who don't know of this tradition, it is when the local firefighters stand on street corners and/or at stop-and-go lights holding their fireman boots to collect donations for MDA. It was so exciting as a child to be driving down the road with my family and spot the first "fill the boot" intersection. I"ll admit I still get filled with delight when I see firemen collecting for MDA. It's a rare assurance now a days, but sometime I get lucky and find an area where they are taking donations. No matter the amount of money I have on me, it goes in the boot. I always laugh a little inside too because I reminisce about my dear sweet Grandma. She was hilarious when we would get close the the "fill the boot" intersection. She would frenziedly dig through her purse for spare money and change. My mom would always tell her it was fine, they had money for both my sister and I to put in the boot(clearly that was our favorite part of the weekend). That was never good enough for Grams though. She wanted to contribute to the fund as well. She always sat in the backseat with me and my sister. She would have her purse on her lap, and be chucking items all over myself and my sister. Anything and everything came out of that purse, so she could get to the bottom for loose change. Danielle and I would be covered in clean, and probably some used tissues, wrappers from her hard candies, her cigarettes, lighters, lint, and random papers filled with grocery lists, etc. The funniest part is that every year she would ask, "Do you think they'll take cinnamon certs?" The whole car would bust out in laughter. My parents would always end up pulling to the side of the road, or sitting idle at the stop-and-go light waiting for Grams to find her 38 cents to throw in the boot. She was relentless, but she did whatever she could to help the cause. I can't tell you how much I admire, adore, and miss the lady everyday of my life.
I am elated that the MDA has been putting on this telethon for so many years. I am also overjoyed by all of the attention and donations ALS has received through the "Ice Bucket Challenge". It's incredible how much money they have raised. It is truly wonderful to see that level of support for such a worthy cause. My only wish is that all organizations could get such funding. From small, personal fundraisers to worldwide charity events. I long for the day when each horrible disease, illness and condition would get equal financing. Logically, I know that day will doubtfully ever come, and that make me sad. It's no ones fault. Money doesn't grow on trees. That would be nice, but the truth is there is only so much people can give. It is also a personal choice whether or not to support an organization. Many people struggle to pay their own bills. They would love to help out, but they are financially incapable of providing monetary support. Others simply just don't care, nor do they want to back certain organizations. That is their prerogative. We all have to respect that, but I can't ignore the hurt I feel by their insensitivity.
I know I am bias because I struggle with medial cost daily. I have had to reach out to my family and friends numerous time. That makes me feel like a failure. I am almost 30 years old, and I still need help from mommy and daddy. It's not just my health that cancer has taken aways from me, it has also taken my dignity. I have never been much of a jealous person. I have always been genuinely happy for the successes of those around me. I still am, but I also wish that I could have a "normal" life. Cancer doesn't just affect one person, it affects all of those around them. It also doesn't just affect my body. Cancer has destroyed me physically, mentally, emotionally, financially and spiritually. I worry everyday that with each new diagnosis I won't be able to afford the treatments, the medications, the hospital visits, and the doctor visits. Even if I'm not ready to physically, or mentally give up, the cost of it all could very well be the death of me. Those thoughts terrify me to no end.
Either way, if the cancer itself kills me, money runs out, I get hit by a bus, or a I die an old lady in my bed, I will pass on with infinite love in my heart and a smile on my face. I know that for a fact because of all of you. All of you fantastic and awe-inspiring friends and family that have brought so much joy, love and laughter to my life. Thank you...a million times THANK YOU!
I was flipping through the channels on TV last night, and I came across the MDA telethon. It brought back a flood of memories. My family and I were usually in Iowa visiting my Grandma during Labor Day weekend. My grandma and my Aunt Karen would stay up ALL night to watch the telethon(back when Jerry Lee Lewis hosted). I was a girl of only eight or nine, so I wasn't sure what MDA was, or who more than half of the performers and spokespeople were. I just enjoyed spending time with my family. My parents and my sister would go to bed at a "normal" bed time. They would take me to bed as well, but I would wait until they were asleep to sneak out and watch the rest of the marathon with Grams and Karen. They would oogle at their favorite performers and cry at the sad stories of the struggling children. I would end up watching my Grams and my auntie Karen more than the actual telethon. I would become completely enamored by the response my family would have to complete strangers. It was inspiring. I would constantly ask them questions about muscular diseases and try to understand what the telethon was all about. The would never get annoyed by my persistent inquiries. They would answer to the best of their knowledge, and we would continue watching Jerry Lee Lewis and all his antics. I hold tightly onto those memories. It was such an innocent and bonding time. I'm so grateful they included me in their Labor Day ritual instead of ratting me out to my parents for being up past my bedtime.
Another staple of Labor Day was "filling the boot". For those of you who don't know of this tradition, it is when the local firefighters stand on street corners and/or at stop-and-go lights holding their fireman boots to collect donations for MDA. It was so exciting as a child to be driving down the road with my family and spot the first "fill the boot" intersection. I"ll admit I still get filled with delight when I see firemen collecting for MDA. It's a rare assurance now a days, but sometime I get lucky and find an area where they are taking donations. No matter the amount of money I have on me, it goes in the boot. I always laugh a little inside too because I reminisce about my dear sweet Grandma. She was hilarious when we would get close the the "fill the boot" intersection. She would frenziedly dig through her purse for spare money and change. My mom would always tell her it was fine, they had money for both my sister and I to put in the boot(clearly that was our favorite part of the weekend). That was never good enough for Grams though. She wanted to contribute to the fund as well. She always sat in the backseat with me and my sister. She would have her purse on her lap, and be chucking items all over myself and my sister. Anything and everything came out of that purse, so she could get to the bottom for loose change. Danielle and I would be covered in clean, and probably some used tissues, wrappers from her hard candies, her cigarettes, lighters, lint, and random papers filled with grocery lists, etc. The funniest part is that every year she would ask, "Do you think they'll take cinnamon certs?" The whole car would bust out in laughter. My parents would always end up pulling to the side of the road, or sitting idle at the stop-and-go light waiting for Grams to find her 38 cents to throw in the boot. She was relentless, but she did whatever she could to help the cause. I can't tell you how much I admire, adore, and miss the lady everyday of my life.
I am elated that the MDA has been putting on this telethon for so many years. I am also overjoyed by all of the attention and donations ALS has received through the "Ice Bucket Challenge". It's incredible how much money they have raised. It is truly wonderful to see that level of support for such a worthy cause. My only wish is that all organizations could get such funding. From small, personal fundraisers to worldwide charity events. I long for the day when each horrible disease, illness and condition would get equal financing. Logically, I know that day will doubtfully ever come, and that make me sad. It's no ones fault. Money doesn't grow on trees. That would be nice, but the truth is there is only so much people can give. It is also a personal choice whether or not to support an organization. Many people struggle to pay their own bills. They would love to help out, but they are financially incapable of providing monetary support. Others simply just don't care, nor do they want to back certain organizations. That is their prerogative. We all have to respect that, but I can't ignore the hurt I feel by their insensitivity.
I know I am bias because I struggle with medial cost daily. I have had to reach out to my family and friends numerous time. That makes me feel like a failure. I am almost 30 years old, and I still need help from mommy and daddy. It's not just my health that cancer has taken aways from me, it has also taken my dignity. I have never been much of a jealous person. I have always been genuinely happy for the successes of those around me. I still am, but I also wish that I could have a "normal" life. Cancer doesn't just affect one person, it affects all of those around them. It also doesn't just affect my body. Cancer has destroyed me physically, mentally, emotionally, financially and spiritually. I worry everyday that with each new diagnosis I won't be able to afford the treatments, the medications, the hospital visits, and the doctor visits. Even if I'm not ready to physically, or mentally give up, the cost of it all could very well be the death of me. Those thoughts terrify me to no end.
Either way, if the cancer itself kills me, money runs out, I get hit by a bus, or a I die an old lady in my bed, I will pass on with infinite love in my heart and a smile on my face. I know that for a fact because of all of you. All of you fantastic and awe-inspiring friends and family that have brought so much joy, love and laughter to my life. Thank you...a million times THANK YOU!
The life of a 20-something cancer patient: Slow Dance
The life of a 20-something cancer patient: Slow Dance: Have you ever watched kids On a merry-go-round? Or listened to the rain Dripping on the ground? Ever followed a butterfly's erratic flig...
The life of a 20-something cancer patient: Ralph - in red flannel
The life of a 20-something cancer patient: Ralph - in red flannel: I walk through many doors throughout the day: hospital doors, doctor's office doors, laboratory doors, imagining doors, etc. It may so...
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