So I know it's been a while. Most of you keep up on facebook anyway haha but I am day 17 after my bone marrow transplant. I actually got to go home (our new home...we moved, it's great) for all of like a day and now I am back at the James. I have some symptoms that could be nothing or could be graft vs host disease so they are monitoring me. Being home that short time I was so shocked at how much strength I have lost.
I had to do something today that I don't like doing. I'm having to ask for help. I am so used to being independent, keeping up, doing things for myself. I never ask people to help, but lately that feels like all I am doing. My Aunt Rindy is always taking Lillia with me being in the hospital and James needing to do this or that. It's hard. I feel like a bad mom and now today I've had to ask family to come over to essentially babysit my and my daughter once James goes back to work. I hate putting my problems on others. I was so convinced when I got home I would feel good and I could do it.But knowing now that's not true is frustrating. I am just thankful and blessed that I do have people in my life that will help when I need them. I know this won't last forever, but giving up control and not doing things for myself ESPECIALLY taking care of my daughter is really hard for me.
I know this is a short blog but I just needed to vent and say thank you to my support system. Take care and enjoy the day,
Heather
Sunday, August 4, 2013
Thursday, June 13, 2013
Waiting...
Hey everyone : ) I hope you're all well. Much like the title says, right now I am just waiting. I have gotten past the fevers and am feeling the best I've felt since I've been here. My counts are climbing but we're waiting for that magic number: 500. My neutrohpil count has to be at 500 for me to go home. I am so close and feeling this good it's hard not to be a little antsy.
Since the last blog I had a birthday. Even though it was here, it was an amazing day. My family came and stayed all day and night. It felt like home. I love having them here. They really made it a special day. I am so thankful to have this birthday. As I am feeling better and it's getting closer and closer to transplant, all that comes with that is becoming even more real.
I did some reading yesterday...which was a bad idea. I thought it would help. It just really freaked me out haha! There are two things I am really afraid of. The first being that this will make me even more sick and kill me. The second being that it doesn't keep me in remission..which would kill me. I think I've been avoiding thinking on it too much, but like I said it's closer and I can't help now but think about it. It's a scary realization. Aside from the statistics, there were these lists of things that I won't be able to do, medications I'm going to have to take (and THEIR side effects). While this could be the cure, my life and my family's lives are not going to be the same for a while. It will take about a year before I can go back to a "normal" life.
Last night I had a long talk with my nurse about the things I had read. She was a nurse at the Cleveland clinic specializing in BMT and while she's on the unit here she floats down to the BMT floor here too, so she's had a lot of experience. She told me not to freak out too much. That a lot of that information with the statistics and medications are outdated. That the research has come a long way and they now know how to better control things like graft vs host disease. The medications aren't as bad with the side effects now and an important positive going for me are my donors. They have found two donors that are a 10/10 match. The better the match, the better my body will accept the donor.
It's just scary, not knowing and not being able to picture the future. BUT as always I'm trying to focus on the positive: good matches, better medicine, and a loving support system. It's going to be hard, but this will be my cure. This will be my life back. That's all I want. Now to get my counts up and go home!
I thought I would leave you with a video from the Leukemia and Lymphoma Society. I watched this earlier and it inspiring. There are people out there trying to cure what I and so many have. LLS is helping them do that and I am proud and happy to help in any way I can with that. They are a great group, and if we can all work together we can make the difference.
https://www.youtube.com/watch?feature=player_embedded&v=Axlfyi6apys
Take care and thanks for reading :)
Since the last blog I had a birthday. Even though it was here, it was an amazing day. My family came and stayed all day and night. It felt like home. I love having them here. They really made it a special day. I am so thankful to have this birthday. As I am feeling better and it's getting closer and closer to transplant, all that comes with that is becoming even more real.
I did some reading yesterday...which was a bad idea. I thought it would help. It just really freaked me out haha! There are two things I am really afraid of. The first being that this will make me even more sick and kill me. The second being that it doesn't keep me in remission..which would kill me. I think I've been avoiding thinking on it too much, but like I said it's closer and I can't help now but think about it. It's a scary realization. Aside from the statistics, there were these lists of things that I won't be able to do, medications I'm going to have to take (and THEIR side effects). While this could be the cure, my life and my family's lives are not going to be the same for a while. It will take about a year before I can go back to a "normal" life.
Last night I had a long talk with my nurse about the things I had read. She was a nurse at the Cleveland clinic specializing in BMT and while she's on the unit here she floats down to the BMT floor here too, so she's had a lot of experience. She told me not to freak out too much. That a lot of that information with the statistics and medications are outdated. That the research has come a long way and they now know how to better control things like graft vs host disease. The medications aren't as bad with the side effects now and an important positive going for me are my donors. They have found two donors that are a 10/10 match. The better the match, the better my body will accept the donor.
It's just scary, not knowing and not being able to picture the future. BUT as always I'm trying to focus on the positive: good matches, better medicine, and a loving support system. It's going to be hard, but this will be my cure. This will be my life back. That's all I want. Now to get my counts up and go home!
I thought I would leave you with a video from the Leukemia and Lymphoma Society. I watched this earlier and it inspiring. There are people out there trying to cure what I and so many have. LLS is helping them do that and I am proud and happy to help in any way I can with that. They are a great group, and if we can all work together we can make the difference.
https://www.youtube.com/watch?feature=player_embedded&v=Axlfyi6apys
Take care and thanks for reading :)
Wednesday, June 5, 2013
Caregivers
I know I just wrote, but I just came from a support group and there were a couple spouses there talking about how they are effected by the disease. About how they worry, about how when they get frustrated then they feel guilty.. like they don't have a right to (Ugh you do). Make no mistake, but while the illness does not like in their bodies, it might as well. It effects the family too. It made me really think about and appreciate what caregiver means.
Caregivers: the term affectionately given to those who take care of us that are ill. Our other better halves. Our family. That someone for me is my husband. He is absolutely a rock. He always seems to strike this perfect balance between letting me know he cares enough to worry, but not letting me on to his worry enough that I am overcome with it. He does my laundry and lovingly brings it to me at our next visit, has taken over the house duties and parental duties AS well as still works to provide us our home and things we need. When I cry, he holds me and without fail knows the perfect thing to say. To get me back on my feet and remember how to be positive, and yet never really asks much for himself. Throughout this news he stays an amazing Dad, a great cop and friend, and an amazing husband. Sure, in the vows it says sickness and in health but does anyone thing they're signing up for the bad health part in their 20's. Doesn't matter. My caregiver is right there and I know I could not fight this without him. I feel I can't justify in words what he is for me.
So I want to dedicate this blog to those caregivers out there. They are amazing, they are our rocks, and without them we would be alone. Thanks for making sure we are never alone :)
Caregivers: the term affectionately given to those who take care of us that are ill. Our other better halves. Our family. That someone for me is my husband. He is absolutely a rock. He always seems to strike this perfect balance between letting me know he cares enough to worry, but not letting me on to his worry enough that I am overcome with it. He does my laundry and lovingly brings it to me at our next visit, has taken over the house duties and parental duties AS well as still works to provide us our home and things we need. When I cry, he holds me and without fail knows the perfect thing to say. To get me back on my feet and remember how to be positive, and yet never really asks much for himself. Throughout this news he stays an amazing Dad, a great cop and friend, and an amazing husband. Sure, in the vows it says sickness and in health but does anyone thing they're signing up for the bad health part in their 20's. Doesn't matter. My caregiver is right there and I know I could not fight this without him. I feel I can't justify in words what he is for me.
So I want to dedicate this blog to those caregivers out there. They are amazing, they are our rocks, and without them we would be alone. Thanks for making sure we are never alone :)
Saturday, June 1, 2013
complications
Hey everyone : ) I hope you're doing well. Thanks for reading again. Sorry it's been so long since my last post. Things have gotten a little rough for me and I have been feeling a bit on the ...crumby side for a while. I am feeling a bit better now.
So I have been through what they call "standard" chemo. And started the clinical trial drugs. I started getting fevers about a week ago and my line was infected. So that was taken out and I now have two IV's in my hands. It has been a constant battle since then with antibiotics and pills to get the fevers under control. I have been feeling so...blah and tired. I went down for a CT of my chest and abdomen yesterday and they found pneumonia in my left lung. I am glad they finally found the source of all of this and we can target it. I was without fevers last night and so far today. I am feeling much better. I still don't have much of an appetite. I have actually lost over 10lbs these past two weeks, but I wouldn't recommend this diet ; ) haha!
I had to make the decision to stop the clinical trial drugs. On the medication I developed a rash, blurry vision, and other (better if i don't mention them) side effects. My counts are still doing what they want them to so there is no worry there. I have had 3 transfusions of blood/platelets already so I have to say thank you to those someones out there who took the time to donate.
During all of this Lillia was supposed to stay with my for some of these days and hasn't been able to because of the fevers. I hate all of this for her. I know it's allw orth it in the long run and I am keeping it in perspective, but still I will be so glad when my counts start recovering and everything just falls into place. I miss my family. That's the hardest part. They are coming to stay Sunday night so I am so excited for that!! They stayed last week too and it was so nice having them here. Even just sleeping in the same room had comfort written all over it. It felt like home.
My birthday is coming up and just really want to be better by then. James took some time off and they are going to be coming up for that too. It stinks to be spending another birthday here but I am glad to have another birthday.
Well that's all for now. I feel like this one was a bit rambly. Sorry about that, thought I'd just try to get an update out there. Not much else going on. Just watching the counts now, trying to avoid fevers, and getting better. Thanks for reading. Love to you all :)
So I have been through what they call "standard" chemo. And started the clinical trial drugs. I started getting fevers about a week ago and my line was infected. So that was taken out and I now have two IV's in my hands. It has been a constant battle since then with antibiotics and pills to get the fevers under control. I have been feeling so...blah and tired. I went down for a CT of my chest and abdomen yesterday and they found pneumonia in my left lung. I am glad they finally found the source of all of this and we can target it. I was without fevers last night and so far today. I am feeling much better. I still don't have much of an appetite. I have actually lost over 10lbs these past two weeks, but I wouldn't recommend this diet ; ) haha!
I had to make the decision to stop the clinical trial drugs. On the medication I developed a rash, blurry vision, and other (better if i don't mention them) side effects. My counts are still doing what they want them to so there is no worry there. I have had 3 transfusions of blood/platelets already so I have to say thank you to those someones out there who took the time to donate.
During all of this Lillia was supposed to stay with my for some of these days and hasn't been able to because of the fevers. I hate all of this for her. I know it's allw orth it in the long run and I am keeping it in perspective, but still I will be so glad when my counts start recovering and everything just falls into place. I miss my family. That's the hardest part. They are coming to stay Sunday night so I am so excited for that!! They stayed last week too and it was so nice having them here. Even just sleeping in the same room had comfort written all over it. It felt like home.
My birthday is coming up and just really want to be better by then. James took some time off and they are going to be coming up for that too. It stinks to be spending another birthday here but I am glad to have another birthday.
Well that's all for now. I feel like this one was a bit rambly. Sorry about that, thought I'd just try to get an update out there. Not much else going on. Just watching the counts now, trying to avoid fevers, and getting better. Thanks for reading. Love to you all :)
Friday, May 17, 2013
G.I. Jane is back
Hey everyone : ) I hope this finds you all really well. I am now at the James in the Best Damn Hospital in the Land. LOL that was corny. Anyway... I was admitted yesterday and had my line put in yesterday afternoon. I was sore last night like crazy but ice packs helped and I am feeling better. I was wiped so I went to bed early and actually woke up early today. I started in on the normal routine :P nutrition, go for a walk, watch TV, talk to the crew of abbreviations (dr, rn, pca, np) AND repeat.
A little while ago I got bored and being the first day..it's one of the roughest when you get bored. All I could think about was how much I missed my family. I started getting emotional (surprise) about it and then I thought...they're coming tomorrow...geesh, stop it and find something to do LOL.
About a week ago the cancer clinic in town donated 9 cranes to my LLS team fundraiser and I hadn't had a chance to make them yet. SO that's what I did:
These are a couple of the nurses here and a PCA. These people are the best. These cranes made me feel better and gave me hope. Thanks to the Cancer clinic for their donation. I hope once they are finished and hung they can provide hope to many many more fighters.
You know what else happens when you are bored? And you have cancer? You shave your head :D It's going to fall out anyway and having it shaved just doesn't bother me at this point. Actually it's kind of easier and I didn't want to have to see it falling out so I had them go ahead and get rid of it. They kept asking if I was sure lol... I don't think they are used to people volunteering...
Something kind of cool... last time I was in for an infection from chemo, they did an echo of my heart. Normal is about 60%, mine was at 50%. They did an echo yesterday to prepare for the clinical trial I will be on and it had improved all the way to 60%. My heart actually got stronger haha!
So from here it is chemo until I am in remission and then I will have to have an allogenic (from someone else) bone marrow transplant. We'll see how it goes. Just trying to keep the positivity goin! Thanks for reading, feel free to leave a comment and I'll talk to you later :)
Saturday, May 4, 2013
Bringing back the blog..at a cost
So..I can't sleep. I know I haven't written in a while. I'm kind of mad at myself for that because while all this good stuff was happening I didn't write about that. I like to focus on the positive, not just the negative so I don't know why I let this go during the good stuff. I guess it was kind of my way of moving on. A lot of good has happened since I last wrote. I started and finished the first semester of nursing school and made some awesome friends. Lillia is in gymnastics and growing up. James and I will be celebrating our 5th anniversary in a little over a week. We did a basketball fundraiser for LLS that raised almost $2300! Great stuff.
So why can't I sleep?
I went in last week for my routine blood work. Just to make sure my blood was behaving (I think I've overused that joke, but anyway...) I hadn't been having any symptoms aside from being tired which I chalked up to stress with school and such so I figured this time would be like the others. It was not. My counts were low so I went Wednesday for follow up labs and those were even lower. So on the 9th I am having a bone marrow biopsy to confirm what is in the back of all of our minds. The leukemia may be coming back.
Further out from the school and the things that were stressing me out, I am still tired and more symptoms are coming back. I am trying to stay positive and out of my own head about this, but I also don't want to be naive as a result. I really don't know what to think and I am kind of a mess at the moment. Writing sometimes gives me clarity so... here I am. I was sad about it the night the labs came back and I cried on my husband's shoulder, but for some reason tonight it is hitting me even harder.
I really don't want to leave my family again. I don't want to miss out on the little things. I am so sad that..well I'm just so sad. I don't want to spend the next several months in a hospital room plastering a smile on my face and making the best out of every moment. Make no mistake, I can and I will. It's what I do ; ) lol...Right now I just don't feel like it. I feel sad and yes angry. I don't deserve this. This is the epitome of unfair. I am confused. I don't know why this is happening. And I know a lot of people have said stuff about my strength, but I am terrified. I think I was a bit naive the first go around that if I could beat it, that would be it. But I just keep thinking, if it's coming back this time..what's to stop it from coming back the next time, and the next time until there aren't anymore next times. I can't leave my family. I'm not even 30 yet! There's SO much I can't miss. I can't do that to them. And, how yet again can I ask them to be understanding about all that this will entail? The missed time, the trek back and forth to the hospital, the stress...
I remember when my Dad had cancer when I was a kid. He was in the VA hospital both times. We would go back and forth to Dayton. I missed him so much and I remember the times apart from him. Here I am doing the same thing to my daughter. It's not right. And I'm helpless. Nothing I can do. It's this or not be here at all.
A friend of mine asked my opinion the other day about that woman who faked cancer. It's hard to put into words but here is the hell that goes on inside of the person who is getting that diagnosis. This is what I was trying to explain. These things, no one should have to face. I am tired of facing them.
I'm staring at the screen now, not really sure what else to say. These things are just going on in my head. I'll go back to being my positive self, I don't like to stray from her often. I just needed to put into words how I'm feeling right now. I am getting so much love and support from friends who know and I appreciate it all. You guys mean the world to me. I am a lucky girl. I guess I only tired the leukemia out last time. Here's to kicking it's ass... <3
So why can't I sleep?
I went in last week for my routine blood work. Just to make sure my blood was behaving (I think I've overused that joke, but anyway...) I hadn't been having any symptoms aside from being tired which I chalked up to stress with school and such so I figured this time would be like the others. It was not. My counts were low so I went Wednesday for follow up labs and those were even lower. So on the 9th I am having a bone marrow biopsy to confirm what is in the back of all of our minds. The leukemia may be coming back.
Further out from the school and the things that were stressing me out, I am still tired and more symptoms are coming back. I am trying to stay positive and out of my own head about this, but I also don't want to be naive as a result. I really don't know what to think and I am kind of a mess at the moment. Writing sometimes gives me clarity so... here I am. I was sad about it the night the labs came back and I cried on my husband's shoulder, but for some reason tonight it is hitting me even harder.
I really don't want to leave my family again. I don't want to miss out on the little things. I am so sad that..well I'm just so sad. I don't want to spend the next several months in a hospital room plastering a smile on my face and making the best out of every moment. Make no mistake, I can and I will. It's what I do ; ) lol...Right now I just don't feel like it. I feel sad and yes angry. I don't deserve this. This is the epitome of unfair. I am confused. I don't know why this is happening. And I know a lot of people have said stuff about my strength, but I am terrified. I think I was a bit naive the first go around that if I could beat it, that would be it. But I just keep thinking, if it's coming back this time..what's to stop it from coming back the next time, and the next time until there aren't anymore next times. I can't leave my family. I'm not even 30 yet! There's SO much I can't miss. I can't do that to them. And, how yet again can I ask them to be understanding about all that this will entail? The missed time, the trek back and forth to the hospital, the stress...
I remember when my Dad had cancer when I was a kid. He was in the VA hospital both times. We would go back and forth to Dayton. I missed him so much and I remember the times apart from him. Here I am doing the same thing to my daughter. It's not right. And I'm helpless. Nothing I can do. It's this or not be here at all.
A friend of mine asked my opinion the other day about that woman who faked cancer. It's hard to put into words but here is the hell that goes on inside of the person who is getting that diagnosis. This is what I was trying to explain. These things, no one should have to face. I am tired of facing them.
I'm staring at the screen now, not really sure what else to say. These things are just going on in my head. I'll go back to being my positive self, I don't like to stray from her often. I just needed to put into words how I'm feeling right now. I am getting so much love and support from friends who know and I appreciate it all. You guys mean the world to me. I am a lucky girl. I guess I only tired the leukemia out last time. Here's to kicking it's ass... <3
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