Hey Mom....
So I got some good and some probably not so good news. The rest result for my biopsy came back and looked great. There was absolutely no kidney damage whatever! Yay for us! Bad News: the form of lupus nephritis attacking my kidney is the most aggressive kind. And it is most often treated with chemotherapy... That's a big one to swallow I know. Fortunately my rheumy decided to try a different tactic first. So he had me hospitalized the whole last weekend through Monday, and IV blasted me with 1000mg of prednisone a day and also started me on something new called cellcept. After I was discharged I felt really good, I guess being in constant pain everyday eventually leaves it to be forgotten about. But waking up with no pain, NO PAIN, at all, and being able to breath and hiccup without a painful back spasm. I forgot how empowering the feeling is. Health can seem like such a fantasy land when it's no where near your grasp. One forgotten what it's like to have a vacation there for awhile. But in all seriousness, I do feel better. But the side effects of the new drug are so awful. Prednisone and it's slow build up I dealt with before. But really, an overly noticeable muffin top that claimed it's real estate in 4 days? I need for time to adjust than that. Plus! (this is outrageous and TMI) this afternoon at work i noticed that the top from of my vagina, like the v shaped pubed area, was swollen at least 3-4X normal size! WTF?! Sorry, I can't handle the magical spontaneous appearance of a small butt making it's home on top of my vag. Don't they call that a front butt? Yuck, it definitely interfered with the way my pants fit too. It's happening to fast...
I get that there will be changes,believe me I know I'm not immune to them. But they aren't suppose to come on so fast, and weird body parts swelling. I'm not okay with it. At mydoctors apt on Monday I think I'm going to ask him to take me off it, it feels like poison in my body.
I take have so more lab tests tomorrow. We will get the results at my Monday apointment. I'm praying so hard that those treatments worked. Chemotherapy is just so brutal, I saw what it did to you mom. You tried to hide it and put a smile on your face and be tough for us. This time I can't try to be you, I dont know if I'll be able to do it. Especially not alone, at least I have Mike who has already proven himself a keeper through all this. But if I was doing chemo I think I would need more help, therapist help. That's an okay route to go down, isn't it? I'm just nervous!
Mom please put in a good word for me up there,so this could maybe turn out for me?
I love you soooo much
Wish I could have some of your wonderful advice,
Love Sunshine
Thursday, October 27, 2011
Friday, October 21, 2011
Dear Mom,
Life has been rather rough lately, really rough. I love living in this new city though, it's just the right size for me and I absolutely love the fresh air. I haven't really made too many new friends but school and work keep me pretty busy and Michael is enough for me :). Other than that, I've had alot of health problems the last several months. I've been in the emergency room twice and I finally got in to see a rheumatologist, who
Told me I am having a flare up of my lupus. Not only that, but that it has escalated and is attacking my kidneys. I'm not going to lie, it's absolutely terrifying. Especially being practically alone here in a new City with family so many thousands of miles away. I had to have a kidney biopsy last Thursday and it wasn't as bad as I had expected but it wasn't exactly fun either. Oh, and another thing: the doctor put me on a bunch of steroids again, so I'm going to get a fat face again. Honestly I don't know how I am going to get through this this time. When I think about what an emotional roller coaster ride I went through last time I just don't know if I can handle that again. I'm not sure how I survived last time, especially I'm the midst of your death adding to it all.
This time it just seems even scarier. Of course I have to wait a week for the results of my biopsy to see how bad the kidney damage is. What if it's really bad? What if I have to do dialysis? Or even worse, a kidney transplant?! What if I die? Renal failure doesn't sounds like a pleasant way to die. I'm going to be a pessimist here and say IM SICK OF ALL THE BAD THINGS HAPPENING TO ME!! GOOD GOD PICK ON SOMEONE ELSE FOR A CHANGE, I THINK IVE HAD MY FAIR SHARE OF SHIT FOR ONE LIFE TIME. Yes, I'm ANGRY, I feel alone, and I wish you were here to help me through this. I need you desperately.
Love your daughter,
Sunshine
Life has been rather rough lately, really rough. I love living in this new city though, it's just the right size for me and I absolutely love the fresh air. I haven't really made too many new friends but school and work keep me pretty busy and Michael is enough for me :). Other than that, I've had alot of health problems the last several months. I've been in the emergency room twice and I finally got in to see a rheumatologist, who
Told me I am having a flare up of my lupus. Not only that, but that it has escalated and is attacking my kidneys. I'm not going to lie, it's absolutely terrifying. Especially being practically alone here in a new City with family so many thousands of miles away. I had to have a kidney biopsy last Thursday and it wasn't as bad as I had expected but it wasn't exactly fun either. Oh, and another thing: the doctor put me on a bunch of steroids again, so I'm going to get a fat face again. Honestly I don't know how I am going to get through this this time. When I think about what an emotional roller coaster ride I went through last time I just don't know if I can handle that again. I'm not sure how I survived last time, especially I'm the midst of your death adding to it all.
This time it just seems even scarier. Of course I have to wait a week for the results of my biopsy to see how bad the kidney damage is. What if it's really bad? What if I have to do dialysis? Or even worse, a kidney transplant?! What if I die? Renal failure doesn't sounds like a pleasant way to die. I'm going to be a pessimist here and say IM SICK OF ALL THE BAD THINGS HAPPENING TO ME!! GOOD GOD PICK ON SOMEONE ELSE FOR A CHANGE, I THINK IVE HAD MY FAIR SHARE OF SHIT FOR ONE LIFE TIME. Yes, I'm ANGRY, I feel alone, and I wish you were here to help me through this. I need you desperately.
Love your daughter,
Sunshine
Thursday, August 25, 2011
The Count Down...
Dear Momma,
I miss you. Alot. In three days time it will be the 3 year anniversary of your death. For the past week, maybe even two, it's felt like a countdown. Everyday I flash back to three years ago, and what we were doing that day, how you were feeling. Today three years ago was the last time a got to speak with you before you died, before you were too deep in a coma like state. You were awake, but your speech was muffled and sounded clouded. We had a hard time understanding you but knew you were telling us you loved us and not to worry. We all gathered around you and said our goodbyes, and hugged and kissed you. I said to you "Mom I want to have adventures like you did, and every thing I will be in honor of you".
We took our last family photo that day. But it isn't a pleasant photo to look upon, our tear streaked cheeks and blotchy faces. Your cheeks hollow and skin pale, but your smile still the bright joyful smile of the woman who raised me. You constantly amazed me, and even on that sad day when you were in pain and dying you gave us as much of yourself as possible. You put a real smile on your face for us to cherish. Even if we look scared and sad, your bright personality is still there for us to cherish. We love you Mom, and we miss you...
I miss you. Alot. In three days time it will be the 3 year anniversary of your death. For the past week, maybe even two, it's felt like a countdown. Everyday I flash back to three years ago, and what we were doing that day, how you were feeling. Today three years ago was the last time a got to speak with you before you died, before you were too deep in a coma like state. You were awake, but your speech was muffled and sounded clouded. We had a hard time understanding you but knew you were telling us you loved us and not to worry. We all gathered around you and said our goodbyes, and hugged and kissed you. I said to you "Mom I want to have adventures like you did, and every thing I will be in honor of you".
We took our last family photo that day. But it isn't a pleasant photo to look upon, our tear streaked cheeks and blotchy faces. Your cheeks hollow and skin pale, but your smile still the bright joyful smile of the woman who raised me. You constantly amazed me, and even on that sad day when you were in pain and dying you gave us as much of yourself as possible. You put a real smile on your face for us to cherish. Even if we look scared and sad, your bright personality is still there for us to cherish. We love you Mom, and we miss you...
Sunday, July 31, 2011
Moving on...
Dear Grandpa,
I am leaving Arizona today. I feel more than a little guilty for leaving Grandma Mona alone. This will be hard on her.
We started the road trip this morning, and our destination will be a small town in North Dakota. I am moving up there with Michael, you actually met him right before you died, but you were pretty deep in a pain killer fog. He's a really great guy! He just graduated with his degree in automotive technology and got offered a job in North Dakota. I decided to go with, he's a pretty big part of my life. It worked out nice because the town actually has University that I will be attending. Yay me!
I was just thinking about you as I was staring out the window at plateaus in the distance. It's kinda funny how things work out isn't it? I moved here two years ago so that I could be closer to you, to lend a helping hand as you got sick. But mostly so I could really get to know you, and we spent many a days sitting on the couch together. Those are some of the best memories I have down here, I will forever cherish them. Oh I do miss you.
I think mom would approve of this adventure, she would probably laugh and say that I am a lot like her.
But as we are leaving Arizona behind I can't help but think whether of not I would be leaving if you were still alive. I just don't know if I could of, I always clung to you as the last thing of mom that I had left. So I guess it not too surprising that it's only taken me a year to leave this place. It's just not the same without you!!
Love ya,
Sunshine
I am leaving Arizona today. I feel more than a little guilty for leaving Grandma Mona alone. This will be hard on her.
We started the road trip this morning, and our destination will be a small town in North Dakota. I am moving up there with Michael, you actually met him right before you died, but you were pretty deep in a pain killer fog. He's a really great guy! He just graduated with his degree in automotive technology and got offered a job in North Dakota. I decided to go with, he's a pretty big part of my life. It worked out nice because the town actually has University that I will be attending. Yay me!
I was just thinking about you as I was staring out the window at plateaus in the distance. It's kinda funny how things work out isn't it? I moved here two years ago so that I could be closer to you, to lend a helping hand as you got sick. But mostly so I could really get to know you, and we spent many a days sitting on the couch together. Those are some of the best memories I have down here, I will forever cherish them. Oh I do miss you.
I think mom would approve of this adventure, she would probably laugh and say that I am a lot like her.
But as we are leaving Arizona behind I can't help but think whether of not I would be leaving if you were still alive. I just don't know if I could of, I always clung to you as the last thing of mom that I had left. So I guess it not too surprising that it's only taken me a year to leave this place. It's just not the same without you!!
Love ya,
Sunshine
Sunday, June 12, 2011
Negative Nancy
Dear Mom,
I have something to get off of my chest. Something I'm frustrated about now although I cannot change the past.
When Uncle Dan first got sick and they realized he only had a few months left, I had every intention of being at his side. I saw him only a few times though, family gatherings and a game night or two. But after he really started to get sick, when they started draining his abdomen of the tumor fluid, I stayed away.
I didn't call, I didn't facebook, I didn't do anything. I couldn't bring myself to do it. I felt horrible the whole time. I would think about Uncle Dan and Aunt Ellen on a daily basis but I only visited him one time after he got really sick. It was a few days before he passed away, he wasn't really speaking anymore. But I sat there and held his hand and told him I loved him, and said my goodbyes.
That mere hour with him was enough to unravel what I had spent so much time tucking away into the corners of my heart. As I held his frail hand, strangely soft and slightly cold, I wanted to soak up as much time as I could, but I also wanted to flee.
Mom, I will never regret sitting with you on your death bed, stroking your hair and holding your hand as your breathing slowed and you finally stopped fighting the cancer in your lungs. I remember there were some people who said it wasn't a good idea, that it would scar me(all of us) for life. I told them "She brought me into this life and I'll be damned if I'm not by her side when she leaves it". And that's exactly what I did, it didn't scar me for life mom, but it did have an impact on me.
When grandpa found out that he had spots on his lungs, I spent every spare hour with him. I never really told anyone that he was the biggest reason I moved to Arizona. Being near him made me feel closer to you mom. That year we got to know each other and got pretty close, and I was honored to help in making his passing more comfortable. But sitting at his death bed was even harder, it brought me back to your death on a daily basis. It sucked honestly, and being there with him when he died changed me a little bit momma.
I remember as a child I was so optimistic. Even now people tell me they can't believe how optimistic I am even though I've been through so much. But you know, I'm not optimistic, honestly I think I'm pessimistic as hell. Maybe I'm just a "secret" pessimist, but life doesn't seem so beautiful anymore after watching your loved ones pass away.
I guess my sub conscience knew that I couldn't handle being at uncle dans side. But I regret not being there for Aunt Ellen like she was there for us when you were really sick. I really wanted to show her the same kindness, and I feel like a selfish coward. But I cannot change the past now, and I will definitely be there for her as she is taking her own journey down the path of grief.
Forever&Always,
Sunshine
Sent from iPhone
I have something to get off of my chest. Something I'm frustrated about now although I cannot change the past.
When Uncle Dan first got sick and they realized he only had a few months left, I had every intention of being at his side. I saw him only a few times though, family gatherings and a game night or two. But after he really started to get sick, when they started draining his abdomen of the tumor fluid, I stayed away.
I didn't call, I didn't facebook, I didn't do anything. I couldn't bring myself to do it. I felt horrible the whole time. I would think about Uncle Dan and Aunt Ellen on a daily basis but I only visited him one time after he got really sick. It was a few days before he passed away, he wasn't really speaking anymore. But I sat there and held his hand and told him I loved him, and said my goodbyes.
That mere hour with him was enough to unravel what I had spent so much time tucking away into the corners of my heart. As I held his frail hand, strangely soft and slightly cold, I wanted to soak up as much time as I could, but I also wanted to flee.
Mom, I will never regret sitting with you on your death bed, stroking your hair and holding your hand as your breathing slowed and you finally stopped fighting the cancer in your lungs. I remember there were some people who said it wasn't a good idea, that it would scar me(all of us) for life. I told them "She brought me into this life and I'll be damned if I'm not by her side when she leaves it". And that's exactly what I did, it didn't scar me for life mom, but it did have an impact on me.
When grandpa found out that he had spots on his lungs, I spent every spare hour with him. I never really told anyone that he was the biggest reason I moved to Arizona. Being near him made me feel closer to you mom. That year we got to know each other and got pretty close, and I was honored to help in making his passing more comfortable. But sitting at his death bed was even harder, it brought me back to your death on a daily basis. It sucked honestly, and being there with him when he died changed me a little bit momma.
I remember as a child I was so optimistic. Even now people tell me they can't believe how optimistic I am even though I've been through so much. But you know, I'm not optimistic, honestly I think I'm pessimistic as hell. Maybe I'm just a "secret" pessimist, but life doesn't seem so beautiful anymore after watching your loved ones pass away.
I guess my sub conscience knew that I couldn't handle being at uncle dans side. But I regret not being there for Aunt Ellen like she was there for us when you were really sick. I really wanted to show her the same kindness, and I feel like a selfish coward. But I cannot change the past now, and I will definitely be there for her as she is taking her own journey down the path of grief.
Forever&Always,
Sunshine
Sent from iPhone
Tuesday, June 7, 2011
"Either Way I Win"
Dear Momma,
Uncle Dan passed away about two weeks ago, only three months after he was diagnosed with stage 4 pancreatic cancer. It seemed like it happened so fast, but a different kind of speed then when you were fading. Mom, I cant even express how sick I am of people dieing from cancer. Uncle Dans' and Aunt Ellens' marriage was the stuff that people dream about. The intensity of their love and respect for one another was something I wasn't fully aware of until these last couple of years I've spent in AZ. The fact that Ellen is dads twin sister doesn't seem fair either. Why should those two both have been robbed prematurely, and painfully of the spouse they loved. I just. dont. understand. it. You really were right when you told us "life isn't fair" as kids.
But his funeral was beautiful momma, just like yours. It brought tears to my eyes as they sung amazing grace, and I flashed back to the day almost three years ago as I sat in the church pew at CCC and the voice of Judy Collins rang out almost eerily, I will not ever forget her voice. When It played at his funeral, I sobbed just as if I had been transported back in time and was once again sitting through your own celebration of life. Dad was no different, Uncle Dans funeral was a tough one for both of us.
When the funeral was coming to a close, one of the last things that cousin Kevin (who did the service) did was repeat something Uncle Dan had said throughout the whole process. He had said that he and Aunt Ellen were praying for a miracle, but if he passed away and went to heaven to be with the lord, then it would be okay. "Either way I win" he said. When Kevin repeated that, it shook me to the core. Because I heard you say that so many times, and each time you always had such a loving and optimistic twinkle in your eye. I admire such optimism in both of you, because even in your final days mom, when I heard you say "Either way I win," you weren't saying it to make me or anyone else feel better. You were saying it because you believed it wholeheartedly, without a doubt, in your eyes, either way you beat the cancer. You are the strongest woman I have ever met Mom, and I aspire each and every day to be more life you.
I love and miss you,
Sunshine
Uncle Dan passed away about two weeks ago, only three months after he was diagnosed with stage 4 pancreatic cancer. It seemed like it happened so fast, but a different kind of speed then when you were fading. Mom, I cant even express how sick I am of people dieing from cancer. Uncle Dans' and Aunt Ellens' marriage was the stuff that people dream about. The intensity of their love and respect for one another was something I wasn't fully aware of until these last couple of years I've spent in AZ. The fact that Ellen is dads twin sister doesn't seem fair either. Why should those two both have been robbed prematurely, and painfully of the spouse they loved. I just. dont. understand. it. You really were right when you told us "life isn't fair" as kids.
But his funeral was beautiful momma, just like yours. It brought tears to my eyes as they sung amazing grace, and I flashed back to the day almost three years ago as I sat in the church pew at CCC and the voice of Judy Collins rang out almost eerily, I will not ever forget her voice. When It played at his funeral, I sobbed just as if I had been transported back in time and was once again sitting through your own celebration of life. Dad was no different, Uncle Dans funeral was a tough one for both of us.
When the funeral was coming to a close, one of the last things that cousin Kevin (who did the service) did was repeat something Uncle Dan had said throughout the whole process. He had said that he and Aunt Ellen were praying for a miracle, but if he passed away and went to heaven to be with the lord, then it would be okay. "Either way I win" he said. When Kevin repeated that, it shook me to the core. Because I heard you say that so many times, and each time you always had such a loving and optimistic twinkle in your eye. I admire such optimism in both of you, because even in your final days mom, when I heard you say "Either way I win," you weren't saying it to make me or anyone else feel better. You were saying it because you believed it wholeheartedly, without a doubt, in your eyes, either way you beat the cancer. You are the strongest woman I have ever met Mom, and I aspire each and every day to be more life you.
I love and miss you,
Sunshine
Wednesday, May 18, 2011
The Creature of Mothers Day
Dear Grandpa,
Mothers day was another first for grandma, another "first" without you. I cant imagine how she must have felt that day without waking up next to your smile. Feeling your loving embrace as you appreciated her on this day. She's a strong woman grandpa, I admire her so much. She kept busy, making desserts, going to her sisters house. But I am sure she was hurting bad, just as my dad was. Mother's day is a funny creature. It sneaks up on you and wiggles into your heart. I never realized how we take advantage of it until one day the people you appreciated, or were appreciated by are gone. Suddenly a simple holiday has turned into an ugly monster, one that has the power to take you back to square one.
Grandpa, now with you gone too days like these are even harder. I remember last mothers day spending it with you and grandma. You were pretty sick then, but it felt so good to be around my mommas dad on such a hard day. But this year grandpa, I did not have walls built up around me to defend myself from the monster. He crushed me, left me uncontrollably sobbing as I lay clutching my tear-soaked pillow. The monster brought me back to square one. I hadn't felt such pain and utter anguish in months. Its as if my healing wound was ripped completely open once again, left to fester.
I was taken by surprise as the monster consumed me, because it was not my usual way of dealing with things. Usually my wall is thick and strong to such sieges, and my tears fall silently in the dead of night after whatever it is has passed. But not this mothers day, all I could do was drowned in self pity and childhood memories. Bringing myself back to days when Mom said things like "Smile nice in this picture, you'll be glad to have it someday" and she was right, so many of those pictures I am glad that I have. Walking through memories of passed mothers day adventures, dinners, crafts and cards. But try as I might grandpa, I cant remember our last mothers day with her. Which makes me wonder, did we appreciate her enough? Did she feel how much we love her? No one knew it would be her last, and if I could go back I would make it her best.
What a deep abyss of unanswerable questions. On this day I look hopefully towards the future and becoming a mother. Because maybe if the day were given a new meaning, it would help strip it of some of its old pain.
I survived the battle grandpa, and so did grandma. She felt your love from above, and we made sure she felt love from all around down here too.
Tell momma I said happy mothers day.
Love forever,
Sunshine
Mothers day was another first for grandma, another "first" without you. I cant imagine how she must have felt that day without waking up next to your smile. Feeling your loving embrace as you appreciated her on this day. She's a strong woman grandpa, I admire her so much. She kept busy, making desserts, going to her sisters house. But I am sure she was hurting bad, just as my dad was. Mother's day is a funny creature. It sneaks up on you and wiggles into your heart. I never realized how we take advantage of it until one day the people you appreciated, or were appreciated by are gone. Suddenly a simple holiday has turned into an ugly monster, one that has the power to take you back to square one.
Grandpa, now with you gone too days like these are even harder. I remember last mothers day spending it with you and grandma. You were pretty sick then, but it felt so good to be around my mommas dad on such a hard day. But this year grandpa, I did not have walls built up around me to defend myself from the monster. He crushed me, left me uncontrollably sobbing as I lay clutching my tear-soaked pillow. The monster brought me back to square one. I hadn't felt such pain and utter anguish in months. Its as if my healing wound was ripped completely open once again, left to fester.
I was taken by surprise as the monster consumed me, because it was not my usual way of dealing with things. Usually my wall is thick and strong to such sieges, and my tears fall silently in the dead of night after whatever it is has passed. But not this mothers day, all I could do was drowned in self pity and childhood memories. Bringing myself back to days when Mom said things like "Smile nice in this picture, you'll be glad to have it someday" and she was right, so many of those pictures I am glad that I have. Walking through memories of passed mothers day adventures, dinners, crafts and cards. But try as I might grandpa, I cant remember our last mothers day with her. Which makes me wonder, did we appreciate her enough? Did she feel how much we love her? No one knew it would be her last, and if I could go back I would make it her best.
What a deep abyss of unanswerable questions. On this day I look hopefully towards the future and becoming a mother. Because maybe if the day were given a new meaning, it would help strip it of some of its old pain.
I survived the battle grandpa, and so did grandma. She felt your love from above, and we made sure she felt love from all around down here too.
Tell momma I said happy mothers day.
Love forever,
Sunshine
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