Today was a festive day at the hospital! One of my precious "kids" celebrated her eighth birthday. It is incredibly depressing having to a birthday party at the cancer center. It truly does suck, but we(the parents, nurses, and myself) try to make each child's birthday memorable, unique, and most of all, a happy occasion.
Ava has been dealt a tough hand. She was originally diagnosed at age four. Unfortunately, she was only in remission for a year. She has been trapped in the hospital 24/7 since the age of five. Ava has been a prisoner to a hospital bed, and this lifestyle for far too many years. Occasionally, they have had to restrain her because she gets furiously upset and frustrated by her situation. My hear aches for this you girl.
On her good days, she is an absolute delight. She's cheerful, playful, and silly. She makes me laugh so hard that tears roll down my cheeks. I know, if given the chance, she would change the world. She is wise beyond her years, innovative, and extremely creative. It kills me to see her wasting away in her hospital bed. I have privately talked to her family about her current state of health and condition a few weeks ago. They didn't even have to utter a word. Their faces and eyes told me everything I needed to know. I hugged her family, and made my way to the hallway before breaking down. I couldn't let Ava see me crying. I was hysterically sobbing and prematurely grieving for this adorable little girl I have grown to love. As I sat in the hallway thinking about Ava, a thought came to mind. I knew her birthday was approaching. I would throw her and the other kids an over-the-top birthday party for all the children to enjoy. Ava's parents were on board, so we began to plan. Ava is infatuated with Rainbow Bright and Furbys. It seemed like the most logical party theme, so we ran with it.
Ava's parents, fellow parents, some nurses and myself pitched in to decorate the room and supply gifts. We scrambled to get the room set up before the children came back from their treatments, doctor's appointments and procedures. It was a mad dash, but we accomplished the feat. We were wrapping the last two presents and stuffing the "goodie bags" just as the kids were arriving back to the room. My back was turned when the first child was wheeled back to he bed. All I heard was "wow, our room looks like cotton candy threw up everywhere"! I chuckled to myself. I turned around to see another child being wheeled back to the room. We let everyone know that it was a surprise birthday party for Ava. The floor nurses even asked the treatment nurses to stall, so she would be the last to arrive. That way everyone could join in on saying "surprise"!!
As soon as everyone was in place the floor nurse called to have Ava brought back to the room. We all anxiously waited for her arrival. We hear the elevator door ding and the creeky wheelchair roll closer to the room. As the nurse opened the door was all gently, but enthusiastically yelled "Happy Birthday'!!!! We didn't want to scare to poor girl, but we wanted to make her feel special and loved by all. Her face lit up, and tears welled up in her eyes. She was shocked and so grateful for putting a surprise party together for her. It was a beautiful and heartwarming sight to see. She went around hugging every one of her friends, family, and nurses that were in the room. When it was my turn for a hug, she held me tight and whispered in my ear, "I know you did all of this". I told her it was a collective effort because we all adore her. That was the moment tears started running down her cheeks. She was elated. It was the happiest I had seen her in weeks! My heart melted.
We quickly switched moods to party mode. We play fun dance music, open presents, and shared copious amounts of laughter. All that was left was the cake. Ava's mom made her favorite kind and I brought the number eight candle. Ava's dad brought the cake out and lit the candle. We all sang "Happy Birthday" to her before she mad a wish and blew out the candle. We sliced up the cake, served up some ice cream and enjoyed each other's company, It was an exquisite birthday party, especially considering the setting.
It is a day I will never forget. Of course, mingling with my 'kids", their families and a plethora of nurses was a blast, but it was what happened as we were cleaning up that made my day. Ava walked over to me as I was wiping down a table. She told me that she had a secret. I was intrigued. I stopped wiping the table and knelt down to be eye-level with her. She looked me straight in the eyes before wrapping her arms around my neck. As she hugged me, she whispered in my ear. She told me that her birthday wish was that we would both be cured of our cancers so we can be friends forever. I was immediately filled with love. I choked back the tears and whispered back to her "me too".
Today was one of those "once in a lifetime moments". A moment that will likely never happen again, but will stay with you for the rest of your life. A moment that restores faith in those around us. Whether we know them personally, or only by a smile and a nod. We could all benefit from being a little less cynical and more open-minded. We might just learn a thing, or two. We might even realized the need for change lies within ourselves. Blame is easy to place on others, but virtually impossible to take complete credit for. We live and we learn, but we all too often don't apply what we learned to our daily lives. It's time to make those changes before it's too late.
Wednesday, November 19, 2014
Tuesday, November 11, 2014
Spreading holiday cheer 🎄❄️🍗🎅🎁🎆
This campaign is raising money for "Holiday Cheer for Cancer Kids"
http://www.gofundme.com/gnfaa4
Please donate if you can. With help from the donations, I plan on giving my friends and their families at the cancer center a holiday season they can enjoy, and will never forget!
Your generosity will not go unrecognized. My appreciate is endless.
Thank you!
The Fundraiser will continue until December 20th 2014. Please be a part of giving these children as holiday season they so very much deserve! Thanks again!
http://www.gofundme.com/gnfaa4
Please donate if you can. With help from the donations, I plan on giving my friends and their families at the cancer center a holiday season they can enjoy, and will never forget!
Your generosity will not go unrecognized. My appreciate is endless.
Thank you!
The Fundraiser will continue until December 20th 2014. Please be a part of giving these children as holiday season they so very much deserve! Thanks again!
Friday, November 7, 2014
The life of a 20-something cancer patient: Millicent
The life of a 20-something cancer patient: Millicent: I am incredibly fortunate to meet such interesting, intriguing, delightful, and hilarious patients on a daily basis. Their families are, mo...
Millicent
I am incredibly fortunate to meet such interesting, intriguing, delightful, and hilarious patients on a daily basis. Their families are, most of the time, just as pleasant. I have recently met the most extraordinary lady. She is on the higher end of the age scale. She is an absolutely "classic beauty". She is always "dressed to the nines", her make-up is flawless, and her hair is always in a perfect bun. Quite simply, she is the most statuesque woman I have ever crossed paths with. She is elegant, filled with knowledge, always following proper manners, but never comes off as arrogant, or self-absorbed. Most of the time she is very "buttoned-up" and chic. In fact no one(even her doctors) know her true age. She maintains the thought that a "true lady" never discloses her age. On the other hand, she can let her hair down and even get a get a little risqué at times. She swears like a sailor, drinks like a fish, and lives life on her time. She is a truly dynamic woman. "Millicent the magnificent", as I like to call her. :)
Everyone at the hospital calls her Millie, but I only call her by her given name. She never matters, either way, how people addressed her. She once told me that someone could throw a bottle of scotch at her head and she would happily respond with a "Howdy"! I couldn't help but chuckle when she said that. She is certainly one-of-a-kind, and I just eat it up! I was surprised the other day when she asked me why I only call her Millicent. My reasoning was because Millicent sounds so distinguished, debonaire and classy. I feel that name suits her perfectly. Her eyes welled up with tears as she listened to my explanation. I was confused. I wrapped my arms around her and told her I didn't mean to upset her. She said she wasn't upset, rather she was appreciative. She grew up very poor. The lack of wealth made her feel like people degraded her because of her financial situation. She worked hard her entire life to become wealthy and successful. She never made it to wealthy, but she married, had children and they were financially comfortable. When I told her the reasoning behind me calling her Millicent, it made her feel like she finally achieved her goal. I reassured her that she more than achieved her goal many years ago. She supported herself, married the man of her dreams, and raised four lovely children.
Millicent surpassed her goal without even realizing it. I told her that she should feel like the richest woman in the world because she always strived to be and do the best she could while she traveled the "road of life". She is, and will always be an exceptionally loving, caring, and generous lady. She devoted her life to her family and that is worth more than all the money in the world.
I would be lost, alone, terrified, and even more anxious than I already am, if I had to navigate through life without the outstanding support system around me. I have been fortunate to have loved ones I could lean on when all I saw was darkness and all I felt was pain. The most precious gift in life is sharing experiences with family and friends. We have all taken these relationships for granted at times, but we must learn from past behavior. We all need to let the ones we love know they are appreciated from time-to-time instead of assuming they know. Everyone needs to know they are loved for nothing other than being a part of your life.
Everyone at the hospital calls her Millie, but I only call her by her given name. She never matters, either way, how people addressed her. She once told me that someone could throw a bottle of scotch at her head and she would happily respond with a "Howdy"! I couldn't help but chuckle when she said that. She is certainly one-of-a-kind, and I just eat it up! I was surprised the other day when she asked me why I only call her Millicent. My reasoning was because Millicent sounds so distinguished, debonaire and classy. I feel that name suits her perfectly. Her eyes welled up with tears as she listened to my explanation. I was confused. I wrapped my arms around her and told her I didn't mean to upset her. She said she wasn't upset, rather she was appreciative. She grew up very poor. The lack of wealth made her feel like people degraded her because of her financial situation. She worked hard her entire life to become wealthy and successful. She never made it to wealthy, but she married, had children and they were financially comfortable. When I told her the reasoning behind me calling her Millicent, it made her feel like she finally achieved her goal. I reassured her that she more than achieved her goal many years ago. She supported herself, married the man of her dreams, and raised four lovely children.
Millicent surpassed her goal without even realizing it. I told her that she should feel like the richest woman in the world because she always strived to be and do the best she could while she traveled the "road of life". She is, and will always be an exceptionally loving, caring, and generous lady. She devoted her life to her family and that is worth more than all the money in the world.
I would be lost, alone, terrified, and even more anxious than I already am, if I had to navigate through life without the outstanding support system around me. I have been fortunate to have loved ones I could lean on when all I saw was darkness and all I felt was pain. The most precious gift in life is sharing experiences with family and friends. We have all taken these relationships for granted at times, but we must learn from past behavior. We all need to let the ones we love know they are appreciated from time-to-time instead of assuming they know. Everyone needs to know they are loved for nothing other than being a part of your life.
Tuesday, November 4, 2014
The life of a 20-something cancer patient: Food for Thought
The life of a 20-something cancer patient: Food for Thought: My day-to-day life is not ordinary, to say the least. There are many days I wish I was able to go to work, hit up a happy hour with friend...
Food for Thought
My day-to-day life is not ordinary, to say the least. There are many days I wish I was able to go to work, hit up a happy hour with friends occasionally, and spend the evenings relaxing before settling into bed for the night. I ache for that sense of routine and comfort. Having a second income in my household would be extremely helpful, as well. I think what I miss the most is conversing with fellow employees, and hearing all the stories of their lives. I am extremely grateful for the wonderful friends I have at the cancer center, but we all live a pretty conservative lifestyle. We don't have many other options.
As you can imagine, I have a lot of time on my hands to stew over the many thoughts that enter my mind. As a self proclaimed "writer", I enjoy writing, telling stories, playing word games, etc, to keep me busy. More often than not, I get completely enamored in my own thoughts. I slip into my own little world(often leaving me looking stoned with a strange look on my face). I consider myself lucky to be able to entertain myself so easily...ha! As a matter of fact, many people have asked me how I can remain happy and keep a smile on my face while enduring such difficult times.
Allow me to let you in on my secret to my senseless moments of bliss. The truth is, I'm just kinda crazy. I don't know how to turn off all of my wild thoughts scrambling around in my head, but at times I can manipulate the "hamster" running my brain into spinning his wheel in a certain direction. ;) Instead of becoming consumed with the pain, discomfort and suffering all around me, I think of a word and put it into a "six degrees of Kevin Bacon" type thought.
Here's a little sample of how I play the game. I think of any interesting word. One of my favorite words is derrière, so I'll use it in this example. It's a funny word to pronounce and it's a fancy way to say tushy! Ha! I love it! After picking out a word I plug in as my starting word. Derrière is the "trunk" of my "word tree". The next word is the first similar sounding word I think of. In this case it makes me think of dairy. Dairy is the second word. Dairy makes me think of farm. Farm turns into the next word. Then I turn that word into a phrase. My mind pops up with fat farm which makes me think of a big fat booty. That leads my thoughts to Sir Mix-a-lot's Classic "Baby Got Back". Before ya know it a big goofy grin slaps across my face, and I'm humming the tune of "Baby Got Back" to myself. Even if it only lasts for a moment, the ability to escape seemingly horrific surroundings comes with ease. Excuse me for sounding dreadfully "corny", but it's a simple way to "turn that frown upside down"! I'm sure the majority of you reading this must think I'm crazy. I may very well be, but I prefer to think of it as clever.
Well, I have fittingly titled this post. All this "thinking" has made me hungry. Time for a snack. Anything but Jello! They always try to force that dreadful substance down your throat at hospitals! Just thinking about it gives me the heebie-jeebies...yuck! I'll stick to the soda crackers. ;)
Friday, October 31, 2014
The life of a 20-something cancer patient: Tricks and Treats
The life of a 20-something cancer patient: Tricks and Treats: Happy Halloween! I hope you all enjoy costume parties, taking family and/or friends trick-or-treating, and indulging in some Halloween good...
Tricks and Treats
Happy Halloween! I hope you all enjoy costume parties, taking family and/or friends trick-or-treating, and indulging in some Halloween goodies! I know I haven't been able to resist putting a bag, or four, of decadent sweets in my shopping cart! HA! I am grateful to be able to enjoy some yummy treats today because I have been dealt my fair share of tricks in the past few months.
I am terrible at tricking people. I always give myself away with a smile, or nervous energy. I'm much more suited for treating those around me. Unfortunately, I am extremely gullible to tricks, spooks and scares. I never see them coming. Recently, I was subject to the most gut wrenching ruse. I was completely unprepared for the nightmare I was embarking upon. My entire world was turned upside down without any warning.
About two months ago I went into the hospital for a fairly routine procedure. Little did I know that within the next 48 hours I would be told I was going to die. If hearing that news wasn't bad enough, being deceived by my doctors was the "icing on the cake".
Said procedure had been scheduled and re-scheduled multiple times. When the actual day came for the surgery, my husband was unable to be there due to work obligations. The hospital had given me such short notice that Jeff was inadequately staffed to take the day off. I wasn't concerned. Over the years I have gotten used to going through some procedures and/or surgeries on my own. As I mentioned earlier, this was a rather conventional operation. I had my medi-van transportation set up, and Jeff would care for me when he returned home. I felt that I had all my "ducks in a row". I would be in-and-out in a matter of a few hours. Needless to say, that is not how the plan played out. There were many unexpected complications that occurred while I was on the operating table. Since none of my family was at the hospital the doctors made all the decisions regarding my healthcare. They never even bothered to call my emergency contacts.
After a slue of obstacles, my heart stopping twice, and after almost bleeding to death, I slipped into a coma. I later found out that the doctors had put me into a medically induced coma. At this time, I was laying lifeless in a hospitals bed with a ventilator, heart monitors, IVs, and a number of other machines attached to me. I was expected to be in this coma for a month or two!! The most outrageous piece of information was that none of my emergency contact had yet been called! How ridiculous is that?!?!?
A couple hours after being placed in a medical coma, to everyone's surprise, I woke up. It was a shock to everyone, especially me! I had tubes down my throat, wires hooked up to every inch of my body, and monitors blaring. Three nurses ran into my room. I was hysterical. I had no clue as to what happened, and I didn't recognized anyone around me. The nurses were trying to calm me down and explain what was going on, but in my frenzied state all I heard was blurred noise. I had so many questions. I was terrified and I needed answers. I finally ended up pulling out my ventilator tube, tore off all my leads and wires, and ripped out my IV. I did not want anyone putting anything more into my body without me knowing what it was and what it was for. The nursing staff was in a panic. They called my doctor and tried to calm me down before he arrived. I was scared, anxious and furious! I waited for my doctor to get to my room, so I could get some answers. The nurses tended to my wounds as I warily awaited my doctors arrival. I saw the shock on his face when he strutted into my hospital room. He was obviously amazed to see me awake and sitting up. I immediately started badgering him with questions. He responded abruptly with one word answers and absolutely no compassion. His disposition was one more of anger than care and concern. Quite frankly his attitude disgusted me. I stood up and grabbed my clothes. I began changing when he told me if I leave I will bleed out and die. I looked up at him, stared straight into his eyes, and said "come again". He glared back at me, said "you heard me" and walked out of the room. I was floored by the "bomb" my doctor just dropped on me. I was completely appalled by his behavior. He never bother to explain to me what was going on inside my body. I had to be updated by one of the nurses. She told me as much as she knew. While they were in surgery they discovered that my blood was not clotting. I had to have two blood transfusions. If I went home I would likely bleed out. I was in a state of utter fear and apprehension. I had two choices. One, stay in the hospital and the doctors would put me back into a medically induced coma, or two, go home and die. Since the day I got diagnosed with cancer I said that I will not die alone in a hospital bed. I opted to go home. I was prepared to die. I could no longer run away from it.
My buddy Tony came to the hospital, picked me up, and took me home to my bed. He could sense that something wasn't right. He didn't press the issue. He calmly walked me to the van without asking any questions. He acted the same way he always did even though he could sense the gravity of the situation. He slowly helped me into the van. When I was securely seated, he jumped in the driver's chair. He turned back at me and said "let's ride doll face". I smiled softly in response to his kind words. He looked at me in the rearview mirror and smiled back at me. He winked at me and said "there's that sparkle I'm used to seeing". I reached over and took his hand in mine. I held firmly, yet gently and whispered "thank you". It was one of those moment that you just connect with a person. Your heads and your hearts are in the same place. Few words need to be said, but those words convey many emotions. He held my hand for the entire drive. It was the comfort I most certainly needed. As he parked in my driveway, he came around the van to help me out. He gave me a hug(which wasn't unusual), but that hug embodied much more than just a friendly hug. That hug communicated all of the the feelings we couldn't find the words to express.
Once I entered my house, I took my boys outside and then headed to bed. All three boys cuddled up with me as I laid there replaying the memories of my life. I turned my phone off, and drifted to sleep expecting not to wake up. I wasn't happy, but I also wasn't sad. I had come to peace with my impending death.
A few hours later my husband arrived home in a panic. He rushed into the bedroom. I was obviously not deceased. He had talked to my family. Everyone was unnerved and confused. I was expecting to not wake up after the threat my doctor gave me. Since I was still alive, I explained the best I could as to what all happened. We all cried, screamed, yelled, and ultimately broke down. I was at the weakest point I have ever been. My mom jumped in her car and drove to New York to help me figure all of this out. She knew her little girl needed her.
If the operation and the stressful situation after the surgery wasn't enough, I still needed to figure out what the next steps of my healthcare were. Did I need to plan my funeral, or was there a treatment option? I contacted my doctor and set up a meeting with him to discuss my future. I could feel his cold-as-ice attitude as he walked toward me. He was not ready to have calm and logical conversation. He had come to give me an ultimatum. He told me either you let me put you in a medically induced coma for a month, or possibly TWO! If I didn't agree to that he said that he considered me a quitter and no longer would be my oncologist. I was enamored by his harsh words and belittling behavior. I knew right then that he would no longer be my doctor.
Talk about terrified. I had recently been told that my blood is not clotting and I would bleed out without treatment, and I just lost my doctor. I felt stuck. The only thing I could think to do was reach out to my original oncologist from Arizona. He is semi-retired, but still consults on my healthcare. I knew I could turn to him. I contacted him as soon as possible and without hesitation he started working on a plan of action. He never missed a beat. This man found my cancers after many doctors failed to, he has treated/consulted my health for years, he is my bone marrow match, and now he is going to save me from this awful blood condition. He is truly my hero.
Once all of the doctors, treatments, and care plans were established, mom and I traveled back to Wisconsin with my first born fur baby in toe. I needed to have 24 hour care and maintain a strict routine to regiment my blood. The best place for me was at my parent's home, in my childhood town of Beaver Dam. I could get some treatment there and the rest in near by Madison. The one major downfall was that I had to leave my husband and my two other fur babies for an entire month! The internal struggle was torturous. I couldn't imagine being away from my hubby and two of my boys for so long, but we all knew it was best for my health. I traveled the almost 1000 miles back to Wisconsin. It was wonderful being with my parents and being able to see my sister and brother-in-law a couple times, but I missed my little family back in NY. I was uneasy about being so far from home. What if something happened and my health declined quickly? Would my husband make it to WI in time? All of those questions ran through my mind constantly. I just had to be hopeful that I was making the right decision.
Thankfully, everything worked out as planned. I got the treatments I needed and my blood is clotting again. I am back in NY and jumping back into chemo and radiation, so I can get my cancers back in check. I have found a new doctor that I connect very well with and trust immensely. I have restored faith in the hospital and cancer center. I also have renewed confidence in myself. My family continues to show me that they will go to the ends of the earth for me. I could not be more grateful and fortunate to all the amazing people in my life.
I have been handed far too many tricks lately. I'm hoping that after today I will receive many more treats than tricks. Either way, I now know I have to the strength to "weather the storm" and find my way back to optimism and determination.
Wishing you all few tricks and many treats!
I am terrible at tricking people. I always give myself away with a smile, or nervous energy. I'm much more suited for treating those around me. Unfortunately, I am extremely gullible to tricks, spooks and scares. I never see them coming. Recently, I was subject to the most gut wrenching ruse. I was completely unprepared for the nightmare I was embarking upon. My entire world was turned upside down without any warning.
About two months ago I went into the hospital for a fairly routine procedure. Little did I know that within the next 48 hours I would be told I was going to die. If hearing that news wasn't bad enough, being deceived by my doctors was the "icing on the cake".
Said procedure had been scheduled and re-scheduled multiple times. When the actual day came for the surgery, my husband was unable to be there due to work obligations. The hospital had given me such short notice that Jeff was inadequately staffed to take the day off. I wasn't concerned. Over the years I have gotten used to going through some procedures and/or surgeries on my own. As I mentioned earlier, this was a rather conventional operation. I had my medi-van transportation set up, and Jeff would care for me when he returned home. I felt that I had all my "ducks in a row". I would be in-and-out in a matter of a few hours. Needless to say, that is not how the plan played out. There were many unexpected complications that occurred while I was on the operating table. Since none of my family was at the hospital the doctors made all the decisions regarding my healthcare. They never even bothered to call my emergency contacts.
After a slue of obstacles, my heart stopping twice, and after almost bleeding to death, I slipped into a coma. I later found out that the doctors had put me into a medically induced coma. At this time, I was laying lifeless in a hospitals bed with a ventilator, heart monitors, IVs, and a number of other machines attached to me. I was expected to be in this coma for a month or two!! The most outrageous piece of information was that none of my emergency contact had yet been called! How ridiculous is that?!?!?
A couple hours after being placed in a medical coma, to everyone's surprise, I woke up. It was a shock to everyone, especially me! I had tubes down my throat, wires hooked up to every inch of my body, and monitors blaring. Three nurses ran into my room. I was hysterical. I had no clue as to what happened, and I didn't recognized anyone around me. The nurses were trying to calm me down and explain what was going on, but in my frenzied state all I heard was blurred noise. I had so many questions. I was terrified and I needed answers. I finally ended up pulling out my ventilator tube, tore off all my leads and wires, and ripped out my IV. I did not want anyone putting anything more into my body without me knowing what it was and what it was for. The nursing staff was in a panic. They called my doctor and tried to calm me down before he arrived. I was scared, anxious and furious! I waited for my doctor to get to my room, so I could get some answers. The nurses tended to my wounds as I warily awaited my doctors arrival. I saw the shock on his face when he strutted into my hospital room. He was obviously amazed to see me awake and sitting up. I immediately started badgering him with questions. He responded abruptly with one word answers and absolutely no compassion. His disposition was one more of anger than care and concern. Quite frankly his attitude disgusted me. I stood up and grabbed my clothes. I began changing when he told me if I leave I will bleed out and die. I looked up at him, stared straight into his eyes, and said "come again". He glared back at me, said "you heard me" and walked out of the room. I was floored by the "bomb" my doctor just dropped on me. I was completely appalled by his behavior. He never bother to explain to me what was going on inside my body. I had to be updated by one of the nurses. She told me as much as she knew. While they were in surgery they discovered that my blood was not clotting. I had to have two blood transfusions. If I went home I would likely bleed out. I was in a state of utter fear and apprehension. I had two choices. One, stay in the hospital and the doctors would put me back into a medically induced coma, or two, go home and die. Since the day I got diagnosed with cancer I said that I will not die alone in a hospital bed. I opted to go home. I was prepared to die. I could no longer run away from it.
My buddy Tony came to the hospital, picked me up, and took me home to my bed. He could sense that something wasn't right. He didn't press the issue. He calmly walked me to the van without asking any questions. He acted the same way he always did even though he could sense the gravity of the situation. He slowly helped me into the van. When I was securely seated, he jumped in the driver's chair. He turned back at me and said "let's ride doll face". I smiled softly in response to his kind words. He looked at me in the rearview mirror and smiled back at me. He winked at me and said "there's that sparkle I'm used to seeing". I reached over and took his hand in mine. I held firmly, yet gently and whispered "thank you". It was one of those moment that you just connect with a person. Your heads and your hearts are in the same place. Few words need to be said, but those words convey many emotions. He held my hand for the entire drive. It was the comfort I most certainly needed. As he parked in my driveway, he came around the van to help me out. He gave me a hug(which wasn't unusual), but that hug embodied much more than just a friendly hug. That hug communicated all of the the feelings we couldn't find the words to express.
Once I entered my house, I took my boys outside and then headed to bed. All three boys cuddled up with me as I laid there replaying the memories of my life. I turned my phone off, and drifted to sleep expecting not to wake up. I wasn't happy, but I also wasn't sad. I had come to peace with my impending death.
A few hours later my husband arrived home in a panic. He rushed into the bedroom. I was obviously not deceased. He had talked to my family. Everyone was unnerved and confused. I was expecting to not wake up after the threat my doctor gave me. Since I was still alive, I explained the best I could as to what all happened. We all cried, screamed, yelled, and ultimately broke down. I was at the weakest point I have ever been. My mom jumped in her car and drove to New York to help me figure all of this out. She knew her little girl needed her.
If the operation and the stressful situation after the surgery wasn't enough, I still needed to figure out what the next steps of my healthcare were. Did I need to plan my funeral, or was there a treatment option? I contacted my doctor and set up a meeting with him to discuss my future. I could feel his cold-as-ice attitude as he walked toward me. He was not ready to have calm and logical conversation. He had come to give me an ultimatum. He told me either you let me put you in a medically induced coma for a month, or possibly TWO! If I didn't agree to that he said that he considered me a quitter and no longer would be my oncologist. I was enamored by his harsh words and belittling behavior. I knew right then that he would no longer be my doctor.
Talk about terrified. I had recently been told that my blood is not clotting and I would bleed out without treatment, and I just lost my doctor. I felt stuck. The only thing I could think to do was reach out to my original oncologist from Arizona. He is semi-retired, but still consults on my healthcare. I knew I could turn to him. I contacted him as soon as possible and without hesitation he started working on a plan of action. He never missed a beat. This man found my cancers after many doctors failed to, he has treated/consulted my health for years, he is my bone marrow match, and now he is going to save me from this awful blood condition. He is truly my hero.
Once all of the doctors, treatments, and care plans were established, mom and I traveled back to Wisconsin with my first born fur baby in toe. I needed to have 24 hour care and maintain a strict routine to regiment my blood. The best place for me was at my parent's home, in my childhood town of Beaver Dam. I could get some treatment there and the rest in near by Madison. The one major downfall was that I had to leave my husband and my two other fur babies for an entire month! The internal struggle was torturous. I couldn't imagine being away from my hubby and two of my boys for so long, but we all knew it was best for my health. I traveled the almost 1000 miles back to Wisconsin. It was wonderful being with my parents and being able to see my sister and brother-in-law a couple times, but I missed my little family back in NY. I was uneasy about being so far from home. What if something happened and my health declined quickly? Would my husband make it to WI in time? All of those questions ran through my mind constantly. I just had to be hopeful that I was making the right decision.
Thankfully, everything worked out as planned. I got the treatments I needed and my blood is clotting again. I am back in NY and jumping back into chemo and radiation, so I can get my cancers back in check. I have found a new doctor that I connect very well with and trust immensely. I have restored faith in the hospital and cancer center. I also have renewed confidence in myself. My family continues to show me that they will go to the ends of the earth for me. I could not be more grateful and fortunate to all the amazing people in my life.
I have been handed far too many tricks lately. I'm hoping that after today I will receive many more treats than tricks. Either way, I now know I have to the strength to "weather the storm" and find my way back to optimism and determination.
Wishing you all few tricks and many treats!
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