So something must really be wrong with me if I thought that anything really MASSIVELY important in my life could go smoothly.
Ughh I feel like such an idiot now.
It is Thursday June 20th 2013 and Im SUPPOSED to get MARRIED tomorrow, and guess where I have been since tuesday morning.........
CCI BLOODY HOSPITAL ADMITTED AS A FUCKING INPATIENT!!!!!!!!!!
I had a very high fever and should of come in monday night but of course my mom wants to wait and says it'll be okay, I have my own damn car I should of just drove myself for christ sake.
Anyway, tuesday I got to CCI and was so weak I needed a wheelchair to move around, my counts were so low. I still had a fever, I saw Dr. Chu for a couple minuets and told him I had a fever and I wasn't sure what to do, because we did see a medi- center doctor but didn't have a fever at the time but had a sore throat. He checked my temp in the waiting room and I spiked to 39.5 and he said I needed to be admitted so I could be monitored and watched so I would make it to the wedding.
Later on we got the results of my blood test and turned out I reached Neutropenic standards in record time, ALL of my counts had bottomed out!!! Platelets at 11, hemo 72, white cell .4......... thats pretty horrific no wonder I couldn't walk around without falling on my face!!!
They took blood cultures and tubes and tubes of blood and tests, its thursday morning and I still don't know if I cant go home yet.
Im mad and frustrated and stressed more than ever and anxious and just so not in a good mood at all I don't want to see anyone including Benjamin, I don't want to see my family or friends I swear if I see anyone at my present state i'm going to rip into someone and never look bad i'm so mad right now.
I realize God tests our faith and holy shit do I feel so incredibly tested right now, Im putting everything in his hands and have hope and faith that he will provide for me. But i'm also human and that means that I am still worried and stressed and mad because out of all of the weeks this could happen in my life it has to happen the WEEK THAT IM SUPPOSE TO BE MARRIED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HOW MESSED UP IS THAT!!!
Not only have I missed out on doing some important last min wedding stuff, I missed the arrival of many family members! I missed doing my nails with my bridesmaids! I didn't even pack up my bag for the honeymoon weekend downtown NOT THAT, THAT WILL EVEN HAPPEN NOW!!!
My mom and dad and ben will be at The Palace dropping off all the necessary things for the reception, and Im praying they get it right, the bride is suppose to be in charge of this stuff and i'm in the hospital!!!!
Not to mention I didn't get my nails done yet, i'm bruised from being in the hospital and getting needle after needle taking pill after pill and IV drug after IV drug!!!!
I HAVE GOTTEN NO SLEEP because I need to be up for half the procedures they do to me at night! and then vitals every 30min after that!!! My eyes are red and i have a dry cough and OMG I WANT OUT ALREADY!!!!!!!!!!!!!!!!!!!!!!!
Everyone is praying for me and I more than believe its whats keeping me from going off the deep end here with myself. I believe that everyones prayers has kept the fever away and I'm hoping that everyones prayers will help in bring my blood cultures back negative for any kind of infection, because if they do come back negative I may actually get out of here TODAY!!!!
and actually be able to make it to my wedding without having to come back to CCI for any procedure.
I have a lot of people in my corner and I appreciate that blessing very much,
BUT I CANT NOT WORRY AT THE SAME TIME ITS MY FREAKING WEDDING!!!!
Im pretty sure if anyone else were in my shoes they would of had a melt down much sooner that I would have, I just want to be out of here so I cant get something done for myself and shower in my own house and sleep in my own room and be able to say I CAN GET MARRIED....
not OH I MIGHT HAVE TO CANCEL BECAUSE MY BODY HATES ME WITH A PASSION!!!
Dont get me wrong I love God and I am honestly trying to put him first in my life, im having a hard time finding my own balance im hoping after marriage it will be much easier.
I get that you have to put your faith and hope in God and He will take care of you if you love him he will provide for you, if you pay attention to his word and his lessons and teaching that he will bless you for life.
Im just having a hard time right now having to be comfortable with putting everything in Gods hands and trusting in him completely, when I am so angry right now this comes from being human but I know he would not harm me unintentionally. I know he is testing me, and its when we feel most worn out that he will push us to our very end to temp us and tease us so we can show our trust and faith in him.
I just hope im passing because I know I could do better, but my humanity is getting the better part of me.
"For I know the plans I have for you." Declares the Lord, "plans to prosper you and not harm you, plans to give you hope and a future."
- Jeremiah 29:11
Praying I calm the Hell down and stop being a baby and breath and my results come back negative and I can get out of the hospital and make it to my wedding!
Thursday, June 20, 2013
Thursday, June 6, 2013
16 days
Its been just over a month since my last entry, I've been wanting to write for so long just Im at a loss for words sometimes. Or I cant type things fast enough for me to feel better.
I got through the transfusion and I've gotten through more chemo therapy cycles, the last one I received was a little scary, I was over dosed the first day of my three day regiment. Holy lord was I happy I caught that mistake or I would of been in serious trouble. God must of been looking out for me that morning or I would of been passed out sleeping the whole time.
I cant even remember all the things I've gotten through in the last couple weeks, planning a wedding is intense but its actually not that difficult, basically just making decisions and following through. Its the dealing with people that gets overwhelming at times and dealing with everyones endless amount of opinions.
It is impossible to make everyone happy and satisfied! Im sure many people are not pleased with some of the decisions I've decided upon, but Im the bride so what I say goes.
It took a while for everyone to kinda get the picture, because generally Im the one serving others not the other way around. Ive realized that I really do worry a lot and a lot about things that I truly have no control over, but Its hard for me to shake that trait Ive done it for so long.
I would of loved to have the time and the means to plan a wedding that everyone could of had more time to digest what was going on and not seem like a shot gun wedding.
Im starting to get so nervous and my thoughts are racing, am I really ready for this? am I nuts, I have cancer for christ sake? Is he ready? Will he be able to take care of me will I be able to take care of him? will i be able to care for myself, Izzy, and Ben? Will I feel like a servant? This commitment is so BIG? Is it too soon? am I making a mistake?
The questions are never ending in my head and Im starting to get worried, I know I love him and we will do our best, but I want a lasting marriage not a trial run to see if we can handle it.
Its going to be such a big change with living together and away from home and responsible for each other and our loyalty is to each other not our parents anymore. The change is huge.
Everything for the wedding is basically set, all that needs to be done is seating arrangements, sleeping arrangements, liquor license, packing over night bag, touching up vows, meeting with our Mcs and our Dj. I cant believe we got all this done so fast!! Less than three months I had to plan this wedding and I wont be running round with my head cut off, I think thats pretty successful =) Im actually quite proud of myself =)
Ill be having quite a few family members coming in from out of town and even the country, which is pretty cool. I have not seen some of them in 13 years! and some of them even more! Im excited to see everyone and Im just praying that all goes well with the wedding and that I will learn to let little things go and just take it easy and relax and really enjoy the experience and not end up serving people!!!
I have one more chemo therapy to go before the wedding, and Im praying all goes well this round and that I will bounce back okay and be able to manage the day of the wedding! Im going to be so incredibly embarrassed if something goes wrong while Im in front of all my friends and family on stage.
We will have two chairs just incase to be safe but still Im praying I wont need it, Ive been practicing wearing heels for hrs straight and wearing my wig for hours without taking it off and make up, its harder than it looks. But for the wedding Im hoping that Ill be able to withstand everything for a full 24 hr day that I will be having.
Just 16 more days to go and Ill be a married young adult that has incurable cancer..... does this happen?
I got through the transfusion and I've gotten through more chemo therapy cycles, the last one I received was a little scary, I was over dosed the first day of my three day regiment. Holy lord was I happy I caught that mistake or I would of been in serious trouble. God must of been looking out for me that morning or I would of been passed out sleeping the whole time.
I cant even remember all the things I've gotten through in the last couple weeks, planning a wedding is intense but its actually not that difficult, basically just making decisions and following through. Its the dealing with people that gets overwhelming at times and dealing with everyones endless amount of opinions.
It is impossible to make everyone happy and satisfied! Im sure many people are not pleased with some of the decisions I've decided upon, but Im the bride so what I say goes.
It took a while for everyone to kinda get the picture, because generally Im the one serving others not the other way around. Ive realized that I really do worry a lot and a lot about things that I truly have no control over, but Its hard for me to shake that trait Ive done it for so long.
I would of loved to have the time and the means to plan a wedding that everyone could of had more time to digest what was going on and not seem like a shot gun wedding.
Im starting to get so nervous and my thoughts are racing, am I really ready for this? am I nuts, I have cancer for christ sake? Is he ready? Will he be able to take care of me will I be able to take care of him? will i be able to care for myself, Izzy, and Ben? Will I feel like a servant? This commitment is so BIG? Is it too soon? am I making a mistake?
The questions are never ending in my head and Im starting to get worried, I know I love him and we will do our best, but I want a lasting marriage not a trial run to see if we can handle it.
Its going to be such a big change with living together and away from home and responsible for each other and our loyalty is to each other not our parents anymore. The change is huge.
Everything for the wedding is basically set, all that needs to be done is seating arrangements, sleeping arrangements, liquor license, packing over night bag, touching up vows, meeting with our Mcs and our Dj. I cant believe we got all this done so fast!! Less than three months I had to plan this wedding and I wont be running round with my head cut off, I think thats pretty successful =) Im actually quite proud of myself =)
Ill be having quite a few family members coming in from out of town and even the country, which is pretty cool. I have not seen some of them in 13 years! and some of them even more! Im excited to see everyone and Im just praying that all goes well with the wedding and that I will learn to let little things go and just take it easy and relax and really enjoy the experience and not end up serving people!!!
I have one more chemo therapy to go before the wedding, and Im praying all goes well this round and that I will bounce back okay and be able to manage the day of the wedding! Im going to be so incredibly embarrassed if something goes wrong while Im in front of all my friends and family on stage.
We will have two chairs just incase to be safe but still Im praying I wont need it, Ive been practicing wearing heels for hrs straight and wearing my wig for hours without taking it off and make up, its harder than it looks. But for the wedding Im hoping that Ill be able to withstand everything for a full 24 hr day that I will be having.
Just 16 more days to go and Ill be a married young adult that has incurable cancer..... does this happen?
Monday, April 29, 2013
Tuesday April 30, 2013
So April 19, 2013 was a very stressful night and the morning of April 20, 2013, was even more so.
Benjamin came to my house in the morning my parents and I were up and getting ready, we all piled into the SUV and rolled out to CCI. We all did not say much, we were all pretty nervous.
So we get there and its pretty routine, wait in line and check in and then go to the lab wait your turn, they call your name you pray you get a tech that will find your vein the first time and then you get poked and go back to your family. Once your done you can actually eat and drink something other than water so Benjamin would get me a latte that I could share with him cause lets face it I do not eat or drink much. We all head to the area in which we have to wait to see the doctor, and it was a brutal wait because they were behind by over an hour, needless to say we started to get very antsy!
We all get called into the room where I will meet with my doctor, and surprise surprise they have new residents that are working with the doctors! and it was pretty hilarious because both new residents were brother and sister and had the last name of Chu!!!! So I would be dealing with 3 doctors all by the same last name! haha it was pretty hilarious.
And I really did like the approach of Dr. Chu *the new resident* very much, rather than talk to be as if I were a symptom to be treated he talked to me as if I were a person. He was cheerful and not grave, took his time which is a real quality to value in a doctor I think he will go very far with his patients!
My doctor Chu came in once to pop his head in and said he would be back shortly and I continued with any concerns i had with the new resident Chu.
By the end of it I just wanted to know what the hell my results were!!!! We waited long enough and I did not enjoy the feeling that my life was in someone else's knowledge and not my own!
Dr. Chu came in and he was all smiles, he just started randomly talking about blood and that I actually needed blood, I had to get a transfusion because I was low and I had no idea, I thought I was just tired from all the wedding planning running around I had been doing.
He looked at me and said we need to transfuse you and do not freak out that my scans came back great and he just does not know what to do with me. My mom and dad and Ben all had to ask him and the resident again about the results so we all knew we heard him right!!!
The tumours had SHRUNK and the big tumour STAYED the same!!!
We all could not believe it and it went by in a blur after that, we all took a huge breath looked at each other and just could not stop smiling.
I WAS GONNA BE OKAY........ the tumours even SHRANK!
My mind was racing I almost cried.....
first thing was first I handed Dr. Chu the very first invitation that me and Benjamin wrote for our wedding =)
He said he might just be in town so he might actually come!!
Then I thought. . . . . O M G that means that I will actually be able to be okay for the wedding!
I WAS GONN GET MARRIED I AM GETTING MARRIED
........ Benjamin and I were going to able to experience this and be able to commit ourselves to each other.
I thought oh my gosh I'm gonna be here for a couple more months and be able to breath again for awhile, of course I'm not out of the woods but it wasn't so stressful
I thought oh my gosh I can get excited because I can tell my friends and my family that Im gonna be okay for now that it isn't so bad right now that we can try to move forward a little bit more!!
I thought I get more time with the ones i care about deepest. I get more time with Ben.
It was a great feeling even in those brief moments i appreciated the breather it was amazing and peaceful and zen and pure to me.
Then i got back into my human mode and realized that i needed a transfusion and that i would be started chemo in 3 days time, and i was not so ecstatic, but it has been a long time that i thought about chemotherapy and said this drug regardless of how harsh and how much i hate it, God send my way to help me live. Even though its killing me faster its keeping me here for as long as possible.
And to chemotherapy and God i was thankful. . . thankful for the pain, aches, stress, appointments, pokes of needles and day procedures. The things that make my life a living hell sometimes also are the things that keep me living.
So for the record, IM GONNA BE OKAY......... at least for a little while, but I will try not to be greedy and take what I receive it to the best of my ability with open arms and with an open heart.
Benjamin came to my house in the morning my parents and I were up and getting ready, we all piled into the SUV and rolled out to CCI. We all did not say much, we were all pretty nervous.
So we get there and its pretty routine, wait in line and check in and then go to the lab wait your turn, they call your name you pray you get a tech that will find your vein the first time and then you get poked and go back to your family. Once your done you can actually eat and drink something other than water so Benjamin would get me a latte that I could share with him cause lets face it I do not eat or drink much. We all head to the area in which we have to wait to see the doctor, and it was a brutal wait because they were behind by over an hour, needless to say we started to get very antsy!
We all get called into the room where I will meet with my doctor, and surprise surprise they have new residents that are working with the doctors! and it was pretty hilarious because both new residents were brother and sister and had the last name of Chu!!!! So I would be dealing with 3 doctors all by the same last name! haha it was pretty hilarious.
And I really did like the approach of Dr. Chu *the new resident* very much, rather than talk to be as if I were a symptom to be treated he talked to me as if I were a person. He was cheerful and not grave, took his time which is a real quality to value in a doctor I think he will go very far with his patients!
My doctor Chu came in once to pop his head in and said he would be back shortly and I continued with any concerns i had with the new resident Chu.
By the end of it I just wanted to know what the hell my results were!!!! We waited long enough and I did not enjoy the feeling that my life was in someone else's knowledge and not my own!
Dr. Chu came in and he was all smiles, he just started randomly talking about blood and that I actually needed blood, I had to get a transfusion because I was low and I had no idea, I thought I was just tired from all the wedding planning running around I had been doing.
He looked at me and said we need to transfuse you and do not freak out that my scans came back great and he just does not know what to do with me. My mom and dad and Ben all had to ask him and the resident again about the results so we all knew we heard him right!!!
The tumours had SHRUNK and the big tumour STAYED the same!!!
We all could not believe it and it went by in a blur after that, we all took a huge breath looked at each other and just could not stop smiling.
I WAS GONNA BE OKAY........ the tumours even SHRANK!
My mind was racing I almost cried.....
first thing was first I handed Dr. Chu the very first invitation that me and Benjamin wrote for our wedding =)
He said he might just be in town so he might actually come!!
Then I thought. . . . . O M G that means that I will actually be able to be okay for the wedding!
I WAS GONN GET MARRIED I AM GETTING MARRIED
........ Benjamin and I were going to able to experience this and be able to commit ourselves to each other.
I thought oh my gosh I'm gonna be here for a couple more months and be able to breath again for awhile, of course I'm not out of the woods but it wasn't so stressful
I thought oh my gosh I can get excited because I can tell my friends and my family that Im gonna be okay for now that it isn't so bad right now that we can try to move forward a little bit more!!
I thought I get more time with the ones i care about deepest. I get more time with Ben.
It was a great feeling even in those brief moments i appreciated the breather it was amazing and peaceful and zen and pure to me.
Then i got back into my human mode and realized that i needed a transfusion and that i would be started chemo in 3 days time, and i was not so ecstatic, but it has been a long time that i thought about chemotherapy and said this drug regardless of how harsh and how much i hate it, God send my way to help me live. Even though its killing me faster its keeping me here for as long as possible.
And to chemotherapy and God i was thankful. . . thankful for the pain, aches, stress, appointments, pokes of needles and day procedures. The things that make my life a living hell sometimes also are the things that keep me living.
So for the record, IM GONNA BE OKAY......... at least for a little while, but I will try not to be greedy and take what I receive it to the best of my ability with open arms and with an open heart.
Friday, April 19, 2013
April 19 2013
Here we are again, the night before a BIG reveal.
I wish it was some show case for a movie or some sort of ripleys believe it or not showcase.
Unfortunately life doesnt always work as planned that I definately know. So tomorrow we find out if I am in fact unstable or if I am still stable.
Now if I am stable that would be AMAZING BOMB ASS CRAZY OMG news for me!!! That means I still to my normal route of the dreaded Chemotherapy drugs for 3days and about 7hrs a day. Not to mention that everything for the wedding should be able to run smoothly which kind of excites me.
Now on the other hand if I am in fact unstable then I have no idea what to tell anyone. I made the personal choice NOT to give up but refusing a treatment that would turn my potential last days into a vegaitation state. Thats no way to live the last few days of your life, being completely lifeless.
If God is calling me home then I will do as much as humanly possible In the time God graces me with.
Ill have no much time on my hands, I wont have to do constant check ups and no chemo so then ill have more than 3 week break....which i havent had in well lets face it 4 years. . . . wow
But this posses a problem for me and planning the wedding reception, by that time I could be experiencing so much pain standing may be difficult. But we did say that even if we dont do the reception that we WILL no matter what be getting married =)
Im nervous to hear those words and see my doctors expression......... it normally speaks volumes for him. He will probubly think im crazy as me and ben hand in the very first invite we give out to our wedding to him!
The results can go one of both ways and its so difficult to guess which one.
How on earth at 22 am I suppose to ACCEPT that I may die, that Gods calling me home when he has giving me so much to live and breath for. How could be call my name when there is so much I want to accomplish first so much I want to experience. How do i accept my fate and then comfort those around me, the ones who cant even speak the words or even want to hear the words that i may passaway.
Most of them dont realize that this is my reality that i have to deal with death at my door step, and unlike them i must answer the door, while the rest of them can leave it shut.
I love my parents, they have been my best supports and have been there since day one and will continue to be my main rocks for the rest of my life. No one will take care of me the way they do, NO ONE, because i'm there one and only little girl. I would of loved to make them so proud of me, to get a degree find a career I love and work hard towards that goal. To be working in a career I loved and making my own means to help myself. But all those dreams all those goals were lost when we heard the words "You have cancer we need to start treatment immediately". I pray that even know I have not been able to go to school or work or what else they had in mind for me that they are still proud of me.
My family, my aunts, uncles, cousins, tones of family friends and just life long friends and friends. All those memories that flash in my mind when I think on their name, the words the moments we all shared together with all those bonds and connections.
Ben, the love of my life and my everything and I cant function without him properly, because with him im whole.
How the hell do I say good bye, how do I let go, How do I comfort them, when me alone needs some comforting. I dont want to have to watch everyone else watch me disintergrate into nothing and NOT remember me a month later. To have learned nothing from me and my life scares me the most! that I have not left any kind of mark on peoples hearts or prespectives.
I dont want to say good bye, I dont want to leave all these people I love so much.
How do I accept death, ive been working on it for years and havent found the answer. I know that the only person or thing you should fear is God. But I am also human with flaws and weaknesses and one of things is fearing what comes after death.
Have I been good enough in mt short life time to earn a place amoung heaven? Will it hurt? Will I know that im about to go will I be concious and be able to say I love you one last time? Will there only be darkness and then nothing?!
All these i think about in the last few weeks and has been stressing me out. But the wedding has giving me a great excuse to be distracted so I dont have to think sooooooo much on it.
But until tmr i guess i will never know what my immediate future holds.
Please pray for me, that I receive good results.
I wish it was some show case for a movie or some sort of ripleys believe it or not showcase.
Unfortunately life doesnt always work as planned that I definately know. So tomorrow we find out if I am in fact unstable or if I am still stable.
Now if I am stable that would be AMAZING BOMB ASS CRAZY OMG news for me!!! That means I still to my normal route of the dreaded Chemotherapy drugs for 3days and about 7hrs a day. Not to mention that everything for the wedding should be able to run smoothly which kind of excites me.
Now on the other hand if I am in fact unstable then I have no idea what to tell anyone. I made the personal choice NOT to give up but refusing a treatment that would turn my potential last days into a vegaitation state. Thats no way to live the last few days of your life, being completely lifeless.
If God is calling me home then I will do as much as humanly possible In the time God graces me with.
Ill have no much time on my hands, I wont have to do constant check ups and no chemo so then ill have more than 3 week break....which i havent had in well lets face it 4 years. . . . wow
But this posses a problem for me and planning the wedding reception, by that time I could be experiencing so much pain standing may be difficult. But we did say that even if we dont do the reception that we WILL no matter what be getting married =)
Im nervous to hear those words and see my doctors expression......... it normally speaks volumes for him. He will probubly think im crazy as me and ben hand in the very first invite we give out to our wedding to him!
The results can go one of both ways and its so difficult to guess which one.
How on earth at 22 am I suppose to ACCEPT that I may die, that Gods calling me home when he has giving me so much to live and breath for. How could be call my name when there is so much I want to accomplish first so much I want to experience. How do i accept my fate and then comfort those around me, the ones who cant even speak the words or even want to hear the words that i may passaway.
Most of them dont realize that this is my reality that i have to deal with death at my door step, and unlike them i must answer the door, while the rest of them can leave it shut.
I love my parents, they have been my best supports and have been there since day one and will continue to be my main rocks for the rest of my life. No one will take care of me the way they do, NO ONE, because i'm there one and only little girl. I would of loved to make them so proud of me, to get a degree find a career I love and work hard towards that goal. To be working in a career I loved and making my own means to help myself. But all those dreams all those goals were lost when we heard the words "You have cancer we need to start treatment immediately". I pray that even know I have not been able to go to school or work or what else they had in mind for me that they are still proud of me.
My family, my aunts, uncles, cousins, tones of family friends and just life long friends and friends. All those memories that flash in my mind when I think on their name, the words the moments we all shared together with all those bonds and connections.
Ben, the love of my life and my everything and I cant function without him properly, because with him im whole.
How the hell do I say good bye, how do I let go, How do I comfort them, when me alone needs some comforting. I dont want to have to watch everyone else watch me disintergrate into nothing and NOT remember me a month later. To have learned nothing from me and my life scares me the most! that I have not left any kind of mark on peoples hearts or prespectives.
I dont want to say good bye, I dont want to leave all these people I love so much.
How do I accept death, ive been working on it for years and havent found the answer. I know that the only person or thing you should fear is God. But I am also human with flaws and weaknesses and one of things is fearing what comes after death.
Have I been good enough in mt short life time to earn a place amoung heaven? Will it hurt? Will I know that im about to go will I be concious and be able to say I love you one last time? Will there only be darkness and then nothing?!
All these i think about in the last few weeks and has been stressing me out. But the wedding has giving me a great excuse to be distracted so I dont have to think sooooooo much on it.
But until tmr i guess i will never know what my immediate future holds.
Please pray for me, that I receive good results.
With all the pieces of my soul
It is exactly one month since Ive written. In that month ALOT has happened. Honestly I don't know even if I should put it all on the net but here goes.
After the news a month ago of the new treatment option and the potential of me being unstable Benjamin and I had a discussion on what it really is we want out of our time together. On the list were several things: Travel, get married, move out, experience all we could together in the time we have, regardless of how long or how short.
Benjamin and I decided after go back and forth and back and forth through situations and ideas, that well we decided that on June 21st 2013 is the day we are going to get MARRIED.
Yeah you read right.......MARRIED.
Crazy right. When does this ever happen, you get life shattering news that the cancer may be growing and instead of taking time to heal and rest we rush and decide why the hell wait. At this point we have nothing to lose but money and money is trivial (yet vital).
I can not believe that God blessed me with finding someone that was strong enough to say NO cancer does not matter. To have the courage to say YES she still deserves to be loved and experience fun things. And brave enough to say YES I want her to be mine, my own to hold and cherish for however long that may be. God sent me a man that needed a push to grow up in areas and I ended up being that PUSH. He has been there for me through the whole second half of my cancer journey. Of course we have had our moments of being scared and running away from each other because what I go through and the reality of it is so heavy for people our age. We have both grown so much together in the last (almost 4) couple years, he's made my last few years SO much brighter and more colourful and fun.
I asked God to help me live with the time I had left and I did not imagine it would come in the form of a 25 year old Sri Lankan CA.
Needless to say I love him with all the pieces of my heart and soul and my very being. He makes me mad at times and his gracefulness needs work and his etiquette, but these things can be taught I know that. But you cant teach a person to emotionally supporting, physically comforting, gentle with his words, kind, thoughtful, and to exude love towards you. He knows how to make me laugh and how to explain something if I do not understand something, he has patience with me when I have lost mine with him. He hugs me and gently kisses my forehead and I feel safe from all chaos in my life, which is why I never let go before he does. I rarely get that feeling from anyone but my parents and to have found it in someone else who is willing to risk everything to go along with me, takes my breath away.
Although this life I live is hard, I also have to remind myself that this life is also the one Ben choose to be apart of regardless of the stress, pain, and torture he would endure. Even though he knew it would be hard and very painful and possibily unbearable if I were to ever pass, he still CHOOSE this.
For any man to choose such a path deserves amazing comendation, how many people out there would say that they didnt care about health status, like 90% of the men would say that Ben was crazy and to get the hell out. OR they would tell him something along the lines of wow man thats pretty brave, and I dont know what to say.
Anyway my basic point is that i'm blessed with a burden by God with having cancer, but God didnt leave me alone in this, he send me Ben. In my eyes God does some crazy things to make his points made, and I realize that I may feel like God has abandoned me. But I trully believe that he send me my own brave, courageous, strong, man to withstand the burden God gave to me and that I wont have to go through it alone.
And that I find trully amazing in how God works.
And its different when he says hes gonna date you and be your man, but he even asked me to marry him and i accepted. Planning a wedding is NEVER something I had in my mind, and I cant believe im sitting here planning wedding details for a marriage!!!
Its incredibly surreal and I dont even feel like the bride, but I have to admitt its so much fun =) I get to be the bossy one now pahahahha but I wont lie its a lot of work!! and organizing!!!
But im really stocked that i even have the opportunity to even do this, how cool is that.
Who would of imagined a woman with a life threatening disease and her health may be going south but regardless we are planning to get marriaged anyway lol its something you find only in movies.
Tuesday, March 19, 2013
Now
Since Jan 26 2013 for events lots has happened. Another super bowl was played, my grandmother Nora was in edmonton, Ben's parents came back from Sri lanka, I started tutoring, I got to go to an oilers game and had awesome seats thanks to my fiance Ben. Another valentines day came and went, I started at good life fitness, had a few chemotherapy sessions, attended one of my friends first baby shower, had a scan and even managed to go on a last min spur of the moment trip to Cuba with my parents.
This year started out being pretty busy with treatment and family matters. It hasn't gotten any easier. I got back to Edmonton from Cuba on March 5th and on March 8th Benjamin and I would attend another results meeting with my doctor. Everyone wasn't worried for the past year Ive been doing really well on this IE treatment. But i knew better and i felt something just wasn't right and since the beginning of this year i felt like this year would be a very rough one for me.
March 8th 2013 Benjamin and I walked into cross cancer a little nervous as always but together which is what mattered most. Dr. Chu informed us that my cancer was in fact growing, but that i was in a limbo stage again because some nodes seem to shrink in size. Difference between this scan and others was that the growth out weighed the shrinkage, and that the small nodes grew significantly in mm, for example 1.2mm to 2.6mm. These nodes were located exactly where I was experiencing weeks before the appointment, which did not surprise me.
Dr. Chu was beside himself, he had absolutely no idea on what direction to travel in and what actions to make, so asked what I wanted. Its odd sometimes when your oncologist does not know how to respond to a scan and expects you too, I drew a complete blank for a couple of seconds. I mean i was trying to process the fact that my cancer could be unstable! Since i seemed to be in a middle situation I decided the best thing to do was to complete 2 more cycles of IE treatment and then scan again. So its not as long as 3 cycles and we should be able to see if the treatment is making a difference or not and to note how my cancer responds at this point with the same treatment. After that decision Benjamin and I only had one more question to ask, " If the scans show I'm unstable, whats the next available treatment?"
And Dr. Chu informed us that I only have one available option left that does not even look promising to him. He tried with other patients and found the results were terrible the patients did not handle the drug well and their bodies took a brutal beating by the combination of drugs. The treatment is used sometimes by the pediactric departments in other hospitals. It involves a 5-10 day STAY IN hospital to administer the drugs and i would get dosed every 3 weeks. The side effects other than the usual would include a severe drop in immunity to the point of almost hitting isolation standards after every dose. It would not only harm my red blood cell count but my white, my platelets, even the blood plasma. It would wipe my entire system and with continued treatment it would take my body longer to recover from every dose.
I know this from last year, my body has reached a breaking point around the end of 2011, it took almost a full year for me to get my body back in proper shape to be fit and survive chemo well enough to have some quality of life. My body takes longer to heal, I get weak and tired quickly my memory is worse, my blood counts take longer to come back to normal to the point of needing transfusions much more often. I already have a very difficult time being in hospital for 7hrs a day 3 days in a row for the IE treatment i am currently on. I will not tolerate an inpatient stay well emotionally and mentally it will destroy me, i know physically my body will not stand well with this drug if it wipes out systems like Dr. Chu described. I will be so weak id probubly be bed ridden once out of the hospital for the short 2 n a half weeks i will have to myself. What on earth would i accomplish or achieve from being bed ridden?
But the main issue im having, is that this treatment is all I have left at this very moment in time.
And I have personally made the choice to refuse treatment if my scans come back unstable......
Needless to say my parents, Benjamin, and me are all stressed beyond words because we have no idea what we will do if my scans show up unstable. We have no informed the family yet so not to worry then unnecessarily and once we know whats going on we will inform them.
So now, "now" is all I could potentially have left. How do you fit a lifetime of want and desire into "now"?!
This year started out being pretty busy with treatment and family matters. It hasn't gotten any easier. I got back to Edmonton from Cuba on March 5th and on March 8th Benjamin and I would attend another results meeting with my doctor. Everyone wasn't worried for the past year Ive been doing really well on this IE treatment. But i knew better and i felt something just wasn't right and since the beginning of this year i felt like this year would be a very rough one for me.
March 8th 2013 Benjamin and I walked into cross cancer a little nervous as always but together which is what mattered most. Dr. Chu informed us that my cancer was in fact growing, but that i was in a limbo stage again because some nodes seem to shrink in size. Difference between this scan and others was that the growth out weighed the shrinkage, and that the small nodes grew significantly in mm, for example 1.2mm to 2.6mm. These nodes were located exactly where I was experiencing weeks before the appointment, which did not surprise me.
Dr. Chu was beside himself, he had absolutely no idea on what direction to travel in and what actions to make, so asked what I wanted. Its odd sometimes when your oncologist does not know how to respond to a scan and expects you too, I drew a complete blank for a couple of seconds. I mean i was trying to process the fact that my cancer could be unstable! Since i seemed to be in a middle situation I decided the best thing to do was to complete 2 more cycles of IE treatment and then scan again. So its not as long as 3 cycles and we should be able to see if the treatment is making a difference or not and to note how my cancer responds at this point with the same treatment. After that decision Benjamin and I only had one more question to ask, " If the scans show I'm unstable, whats the next available treatment?"
And Dr. Chu informed us that I only have one available option left that does not even look promising to him. He tried with other patients and found the results were terrible the patients did not handle the drug well and their bodies took a brutal beating by the combination of drugs. The treatment is used sometimes by the pediactric departments in other hospitals. It involves a 5-10 day STAY IN hospital to administer the drugs and i would get dosed every 3 weeks. The side effects other than the usual would include a severe drop in immunity to the point of almost hitting isolation standards after every dose. It would not only harm my red blood cell count but my white, my platelets, even the blood plasma. It would wipe my entire system and with continued treatment it would take my body longer to recover from every dose.
I know this from last year, my body has reached a breaking point around the end of 2011, it took almost a full year for me to get my body back in proper shape to be fit and survive chemo well enough to have some quality of life. My body takes longer to heal, I get weak and tired quickly my memory is worse, my blood counts take longer to come back to normal to the point of needing transfusions much more often. I already have a very difficult time being in hospital for 7hrs a day 3 days in a row for the IE treatment i am currently on. I will not tolerate an inpatient stay well emotionally and mentally it will destroy me, i know physically my body will not stand well with this drug if it wipes out systems like Dr. Chu described. I will be so weak id probubly be bed ridden once out of the hospital for the short 2 n a half weeks i will have to myself. What on earth would i accomplish or achieve from being bed ridden?
But the main issue im having, is that this treatment is all I have left at this very moment in time.
And I have personally made the choice to refuse treatment if my scans come back unstable......
Needless to say my parents, Benjamin, and me are all stressed beyond words because we have no idea what we will do if my scans show up unstable. We have no informed the family yet so not to worry then unnecessarily and once we know whats going on we will inform them.
So now, "now" is all I could potentially have left. How do you fit a lifetime of want and desire into "now"?!
Saturday, January 26, 2013
2013
So its officially 2013 and the year is well on the way almost February already i have a feeling this year is going to go by very fast. so its been really crazy for me the last three months, then again I'm not very sure when my life isn't ever crazy. November was filled with family and friends birthdays and there was so much celebrating i didn't even feel like celebrating mine lol so i didn't, i was off chemo not even 24hrs when i turned 22. I actually paid for my own birthday dinner this year kinda odd but worth it. after birthdays i was dosed for chemo at the very end of November and the first week of December i was off to Mexico less than 4 days off chemotherapy. That was an intense trip i was so incredibly nervous, not only me but Benjamin as well it would be the first time that Ben and I traveled with me being sick and alone. We were anal because the consequences were extremely dangerous.
We proceeded to wipe everything down and keep me out of crowds and eating only hot food watching where i step so i don't fall or cut myself. The rules we had were extensive and I'm happy to say that we got through the whole week with no major problems. We even got to go to Chichen Itza one of the seven wonders of the world and home to the Mayan ruins in which the Mayan calender is based upon. It was amazing and so much fun!!!
But that trip to Mexico also made me feel the most isolated and out of place in a while! Of course there is some awkwardness when you are meeting all new people and you literally only know four people. But when I'm in a mood and not feeling confident or well, informing everyone that I'm sick isn't my favorite thing to do. I'm sometimes ashamed to admit that at 21 i had accomplished nothing but scars, heart ache, a high pain threshold, and a permanently bruised Ivad that sticks out of the right side of my chest like a black man in white only club. I was surrounded by people only years older than me with tones of energy and crazy spirit to party. . . . more than anything i wished i was one of them. I felt so horrible about Ben having to babysit me half the time even for my own safety. I desperately wanted Ben to have fun with everyone even if I couldn't join so at least one of us could say we had an awesome time. I felt like a total party pooper and what was worse was that the people that didn't know me assumed i was a pooper, that hurt most. The next few days would consist of me trying to get my spirit and strength back so i could try to explain my situation, and in the end I got their respect and some their pity lol at that point i didn't care i only cared about trying to enjoy myself. Then came home and got scanned and then dosed again right after new years day. Christmas and new years were quiet but busy! no crazy parties but lots of Xmas dinners and family get together both Benjamin's and mine.
January is pretty chilled. I've noticed that since the trip to Mexico my attitude hasn't been the best, those looks that I got from people and having to always go to the room when everyone else was just starting to get ready to party took its tool mentally and emotionally. Physically i couldn't keep up with anyone. Emotionally and mentally I was getting beat up and torn down and eventually my resolve broke. The past four weeks have been the roughest in a long time for me, just event after event keep piling up. I just feel honestly discouraged most of all, I'm discouraged to keep my faith up, my positivity, my strength to survive. If i feel like I'm trying so hard and I explain myself why do I still get the looks like I'm lower than everyone. So in turn now I feel lower than anyone and no matter how hard i am trying to convince myself otherwise i still have that subconscious feeling of . . . maybe I'm not maybe i should be feeling this inadequate.
I dont know whats going to help me anymore and i dont know whats going to help me feel better either. Im not always able to make plans and go out when ever everyone people get ready too and lately as fate would have it, everytime im sick or recovering thats when my friends get together. Because I cant make a few events I stop getting invited or stop being someone for anyone to confide in or gossip with. Im very positive that my friends have more than once spoke about how annoying it is that i am not able to make it or dont ask her she'll just be sick or too tired to go.
So if i cant be a friend to my friends, then whats to keep them as my friends?! How do i keep the friends I have, if im unable to be a friend to them?!
We proceeded to wipe everything down and keep me out of crowds and eating only hot food watching where i step so i don't fall or cut myself. The rules we had were extensive and I'm happy to say that we got through the whole week with no major problems. We even got to go to Chichen Itza one of the seven wonders of the world and home to the Mayan ruins in which the Mayan calender is based upon. It was amazing and so much fun!!!
But that trip to Mexico also made me feel the most isolated and out of place in a while! Of course there is some awkwardness when you are meeting all new people and you literally only know four people. But when I'm in a mood and not feeling confident or well, informing everyone that I'm sick isn't my favorite thing to do. I'm sometimes ashamed to admit that at 21 i had accomplished nothing but scars, heart ache, a high pain threshold, and a permanently bruised Ivad that sticks out of the right side of my chest like a black man in white only club. I was surrounded by people only years older than me with tones of energy and crazy spirit to party. . . . more than anything i wished i was one of them. I felt so horrible about Ben having to babysit me half the time even for my own safety. I desperately wanted Ben to have fun with everyone even if I couldn't join so at least one of us could say we had an awesome time. I felt like a total party pooper and what was worse was that the people that didn't know me assumed i was a pooper, that hurt most. The next few days would consist of me trying to get my spirit and strength back so i could try to explain my situation, and in the end I got their respect and some their pity lol at that point i didn't care i only cared about trying to enjoy myself. Then came home and got scanned and then dosed again right after new years day. Christmas and new years were quiet but busy! no crazy parties but lots of Xmas dinners and family get together both Benjamin's and mine.
January is pretty chilled. I've noticed that since the trip to Mexico my attitude hasn't been the best, those looks that I got from people and having to always go to the room when everyone else was just starting to get ready to party took its tool mentally and emotionally. Physically i couldn't keep up with anyone. Emotionally and mentally I was getting beat up and torn down and eventually my resolve broke. The past four weeks have been the roughest in a long time for me, just event after event keep piling up. I just feel honestly discouraged most of all, I'm discouraged to keep my faith up, my positivity, my strength to survive. If i feel like I'm trying so hard and I explain myself why do I still get the looks like I'm lower than everyone. So in turn now I feel lower than anyone and no matter how hard i am trying to convince myself otherwise i still have that subconscious feeling of . . . maybe I'm not maybe i should be feeling this inadequate.
I dont know whats going to help me anymore and i dont know whats going to help me feel better either. Im not always able to make plans and go out when ever everyone people get ready too and lately as fate would have it, everytime im sick or recovering thats when my friends get together. Because I cant make a few events I stop getting invited or stop being someone for anyone to confide in or gossip with. Im very positive that my friends have more than once spoke about how annoying it is that i am not able to make it or dont ask her she'll just be sick or too tired to go.
So if i cant be a friend to my friends, then whats to keep them as my friends?! How do i keep the friends I have, if im unable to be a friend to them?!
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