Matt was driving Dorene back from the hospital and she called to tell me she is doing much better. It wasn't her right lung after all. The left lung had filled up with more fluids. They pulled 600 cc's more out of her left lung. The E.R. doctor thinks she has a little bit of phenumonia so to be safe he prescribed more antibiotics and gave her a prescription for a stronger pain pill.
Dorene and Matt have a bunch of additional questions for the Oncologist tomorrow... I'll update again after I hear about that appointment.
Monday, May 31, 2010
A Post Script to Yesterday's Post...
Dorene and I were just on the phone and talking about this odd situation with a possible life timeline and I wanted to clarify that a bit here for you because I don't think I spoke to this enough in my earlier post...
Yes, this cancer in her lungs is really bad news and yes, it seems to have picked up speed in growth, so yes, we are currently (I want to stress currently as things change every day for the good or the bad) looking at a life timeline.
But... there are days when Dorene feels better and thinks she is looking at a year or two... and there are days she feels bad enough that she feels it will be months. Lately, because of the fluid in the lungs and the toll that's taken on her she has felt like months. But even in the midst of all that, the day they removed the fluid from her left lung she felt so much better she felt like she was back in the years time space.
There are lots of cliche's to speak to this and for some reason the one of "It's not over til it's over" keeps popping into my mind. We are trying to be prepared but we are also holding onto our hope for a change or turn around. Hope is powerful and no one has given up.
Here I am writing a post to let you know that we are holding onto our hope and Dorene is getting ready to take herself to the emergency room because the right lung area has become very painful and she is short of breath again and she can't wait until tomorrow for them to drain the right side. Because of this, today, Dorene feels like she's in months mode but once they remove that fluid I'm sure we'll be back in years mode. It's a day to day and moment by moment thing...
Keeping Hopeful,
Deborah
Dorene's Sister :-)
Yes, this cancer in her lungs is really bad news and yes, it seems to have picked up speed in growth, so yes, we are currently (I want to stress currently as things change every day for the good or the bad) looking at a life timeline.
But... there are days when Dorene feels better and thinks she is looking at a year or two... and there are days she feels bad enough that she feels it will be months. Lately, because of the fluid in the lungs and the toll that's taken on her she has felt like months. But even in the midst of all that, the day they removed the fluid from her left lung she felt so much better she felt like she was back in the years time space.
There are lots of cliche's to speak to this and for some reason the one of "It's not over til it's over" keeps popping into my mind. We are trying to be prepared but we are also holding onto our hope for a change or turn around. Hope is powerful and no one has given up.
Here I am writing a post to let you know that we are holding onto our hope and Dorene is getting ready to take herself to the emergency room because the right lung area has become very painful and she is short of breath again and she can't wait until tomorrow for them to drain the right side. Because of this, today, Dorene feels like she's in months mode but once they remove that fluid I'm sure we'll be back in years mode. It's a day to day and moment by moment thing...
Keeping Hopeful,
Deborah
Dorene's Sister :-)
Sunday, May 30, 2010
Dorene asked me to post this...
I wrote Dorene a letter this week because I needed to say some things and didn't want to cry through the entire attempt. Dorene asked me to post the letter on her blog. She said... (teary eyed as I type) that she wants everyone to know how much her sister loves her. This feels awkward, but I've promised to do as Dorene wants (wink) so here it is...
May 28, 2010
To My Beloved, Sweet Sister, Dorene… :-)
My mind has been in many places since Tuesday and like we were talking about earlier today, there is this feeling of walking in a fog, not being able to focus…
But something occurred to me today, something I’ve not yet shared with you and I thought I’d do it in this letter so you can hear it without me crying while trying to say it.
I haven’t given up for you Dorene!
Yes, we have been given some seriously bad news and because of that I am going to be here to help you in whatever way I can. I will try to help you have the best quality of life you can have and I will help you do whatever it is you need and want to do. We can talk straight, like we always have. I will continue to be your advocate. Whatever it is… I am here.
But…
I will continue to have hope for you Dorene. My hope may be challenged, I may be terrified, and my talks with God even more intense, but this is the way I see it…
Today
You Are Alive
It might be a good day, a hard day, or a really crappy day
But
Today
You Are Alive
And While You Are
There “IS” Hope
And EVERY DAY
I WILL Hope FOR YOU
even if you can’t hope for yourself
even when we have both been brought to our knees with despair and fear
I WILL Hope FOR YOU
We may not get one
And like you’ve said before
Maybe God did give you your miracle already
and that’s why you’ve lived 17 years with such a serious cancer
maybe God brought you this far so you could see Candace to this time where she has grown up so much and become such a wonderful young lady, responsible, looking toward her future, with such a kind and sweet heart.
But…
Miracles Do Happen
And if it’s a miracle we need
Then I won’t give up having hope that we will get one.
I WILL Hope For You
Even if you can’t
Every Day You Are Alive.
There’s going to be a lot of talk of dying
We will talk about, plan for it, we will even joke about it
Because we must
And I want you to know that while I will continue to have hope
I won’t let that hope hold you down
I won’t let my hope cause you to suffer
I want to say this clearly because I think I’d be afraid of this
I will make sure that the people around you let you go if it is time
I will not allow you to suffer over our despair at losing you
Not even because of my own despair
I will stand strong for you in whatever way you need me to
I will not falter Dorene
But never forget, that in the midst of all of this
Even after having to write these words
I have Hope for You.
I LOVE you more than any written word can say
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Your Sister,
Forever and Always,
Deb
May 28, 2010
To My Beloved, Sweet Sister, Dorene… :-)
My mind has been in many places since Tuesday and like we were talking about earlier today, there is this feeling of walking in a fog, not being able to focus…
But something occurred to me today, something I’ve not yet shared with you and I thought I’d do it in this letter so you can hear it without me crying while trying to say it.
I haven’t given up for you Dorene!
Yes, we have been given some seriously bad news and because of that I am going to be here to help you in whatever way I can. I will try to help you have the best quality of life you can have and I will help you do whatever it is you need and want to do. We can talk straight, like we always have. I will continue to be your advocate. Whatever it is… I am here.
But…
I will continue to have hope for you Dorene. My hope may be challenged, I may be terrified, and my talks with God even more intense, but this is the way I see it…
Today
You Are Alive
It might be a good day, a hard day, or a really crappy day
But
Today
You Are Alive
And While You Are
There “IS” Hope
And EVERY DAY
I WILL Hope FOR YOU
even if you can’t hope for yourself
even when we have both been brought to our knees with despair and fear
I WILL Hope FOR YOU
We may not get one
And like you’ve said before
Maybe God did give you your miracle already
and that’s why you’ve lived 17 years with such a serious cancer
maybe God brought you this far so you could see Candace to this time where she has grown up so much and become such a wonderful young lady, responsible, looking toward her future, with such a kind and sweet heart.
But…
Miracles Do Happen
And if it’s a miracle we need
Then I won’t give up having hope that we will get one.
I WILL Hope For You
Even if you can’t
Every Day You Are Alive.
There’s going to be a lot of talk of dying
We will talk about, plan for it, we will even joke about it
Because we must
And I want you to know that while I will continue to have hope
I won’t let that hope hold you down
I won’t let my hope cause you to suffer
I want to say this clearly because I think I’d be afraid of this
I will make sure that the people around you let you go if it is time
I will not allow you to suffer over our despair at losing you
Not even because of my own despair
I will stand strong for you in whatever way you need me to
I will not falter Dorene
But never forget, that in the midst of all of this
Even after having to write these words
I have Hope for You.
I LOVE you more than any written word can say
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Your Sister,
Forever and Always,
Deb
A Tough Update to Write... it will be tough to read too...
As you may know Dorene has had problems breathing and in going to the Radiologist she was told that this is one of the side effects of radiation and that it would dissipate over time. She was given antibiotics but after she finished the prescription and even during taking it, it felt like her lungs were worse and not better. She called a couple more times during the weeks after her last appointment and she was told again that the radiation continues to build in her body after her last dose and in a few months when it starts to dissipate so would the lung symptoms. But it got worse, and Dorene called and insisted they do another CT scan because she knew something was wrong.
Something was definitely wrong…
Both Dorene’s lung peritoneal sacks were filled with fluid. Her left lung had 60% filled with fluids. And… the radiologist told Dorene and Matt that her lungs were “fully involved” with tumors. The radiologist said Dorene needed to start chemo right away. Dorene and Matt saw her oncologist…
The oncologist made an appointment for Dorene to have the fluid removed from her left lung sack. They removed over a liter of fluids! Dorene will have the right lung area drained on Tuesday. They can only do one at a time. They’ve sent some of the fluid off to be tested and we are all very interested in knowing what it is. The radiologist thought it was a by-product of the tumors. But we want to know.
The oncologist didn’t quite agree with the radiologist, on a couple of points… she thought that the tumors were in Dorene’s chest wall, not her lungs. But Dorene makes a good point in saying that it is the radiologists job to read scans every day and she is leaning towards the radiologist’s diagnosis. Neither is good, Dorene’s body has these tumors one place or the other. In the lungs is a bit more frightening though.
The other point that the oncologist is not in agreement with the radiologist is on the point of chemo. The oncologist said that the only way more chemo would work is if Dorene’s cancer was receptive to the chemo which it has not been so far. The chemo may delay things for a short period of time but it is unlikely that it would make enough of an impact to make it worth going through.
So Dorene asked… “How much time do I have? By the way I feel these days it feels like 3 to 6 months.” The oncologist said that without further treatment that is probably an accurate guess. So Dorene asked… “And with more chemo?” - - - maybe a year…
But a “maybe” and a chemo that Dorene’s oncologist doesn’t want Dorene to take because of how bad it is, and how sensitive to chemicals Dorene is.
So, at this time, Dorene has had to leave her job at the veterinarian’s because she hasn’t been able to do it and when she tries it is too hard on her. And she is trying to live each day as best she can. She still feels terrible from this lung problem and we are hoping that Tuesday will bring more relief when they drain the right side, and maybe an answer on how to keep the fluid from continuing to build.
And, Dorene is making plans, life plans. She wants to come to Alaska to visit family here and Dad has offered to send her and Matt up to us. Dad and Pat are going to visit Dorene and Matt in Idaho in June. And our half-brother, David who works for Delta Airlines has very generously offered to send Dorene and Matt anywhere Delta flies. They are hoping for Tahiti which is a long dreamed of destination for Dorene. Aunt Susan has also offered tickets to places Dorene wants or needs to go. Everyone wants to help. It is such a blessing and to have this love and these blessings at such difficult times and it means so very much to us. Everyone in our family has reached out to Dorene during these times and I can’t help but note that not everyone has a family like we do. We are blessed.
Dorene and Matt are trying to make these things happen within the next 2 to 3 months.
The lung scan knocked us all onto our knees and the 3 to 6 months possibility, as you can only imagine, has devastated us all. We have definitely been in a period of shock. After all… this can’t be happening. We are trying to get our bearings, trying to be realistic and look at what we need to do. But I also want to say… that even with this unbelievable news, I continue to hope for Dorene and I will hope and pray EVERY day. I know you will too.
With Love,
Deborah
Dorene’s Sister
Something was definitely wrong…
Both Dorene’s lung peritoneal sacks were filled with fluid. Her left lung had 60% filled with fluids. And… the radiologist told Dorene and Matt that her lungs were “fully involved” with tumors. The radiologist said Dorene needed to start chemo right away. Dorene and Matt saw her oncologist…
The oncologist made an appointment for Dorene to have the fluid removed from her left lung sack. They removed over a liter of fluids! Dorene will have the right lung area drained on Tuesday. They can only do one at a time. They’ve sent some of the fluid off to be tested and we are all very interested in knowing what it is. The radiologist thought it was a by-product of the tumors. But we want to know.
The oncologist didn’t quite agree with the radiologist, on a couple of points… she thought that the tumors were in Dorene’s chest wall, not her lungs. But Dorene makes a good point in saying that it is the radiologists job to read scans every day and she is leaning towards the radiologist’s diagnosis. Neither is good, Dorene’s body has these tumors one place or the other. In the lungs is a bit more frightening though.
The other point that the oncologist is not in agreement with the radiologist is on the point of chemo. The oncologist said that the only way more chemo would work is if Dorene’s cancer was receptive to the chemo which it has not been so far. The chemo may delay things for a short period of time but it is unlikely that it would make enough of an impact to make it worth going through.
So Dorene asked… “How much time do I have? By the way I feel these days it feels like 3 to 6 months.” The oncologist said that without further treatment that is probably an accurate guess. So Dorene asked… “And with more chemo?” - - - maybe a year…
But a “maybe” and a chemo that Dorene’s oncologist doesn’t want Dorene to take because of how bad it is, and how sensitive to chemicals Dorene is.
So, at this time, Dorene has had to leave her job at the veterinarian’s because she hasn’t been able to do it and when she tries it is too hard on her. And she is trying to live each day as best she can. She still feels terrible from this lung problem and we are hoping that Tuesday will bring more relief when they drain the right side, and maybe an answer on how to keep the fluid from continuing to build.
And, Dorene is making plans, life plans. She wants to come to Alaska to visit family here and Dad has offered to send her and Matt up to us. Dad and Pat are going to visit Dorene and Matt in Idaho in June. And our half-brother, David who works for Delta Airlines has very generously offered to send Dorene and Matt anywhere Delta flies. They are hoping for Tahiti which is a long dreamed of destination for Dorene. Aunt Susan has also offered tickets to places Dorene wants or needs to go. Everyone wants to help. It is such a blessing and to have this love and these blessings at such difficult times and it means so very much to us. Everyone in our family has reached out to Dorene during these times and I can’t help but note that not everyone has a family like we do. We are blessed.
Dorene and Matt are trying to make these things happen within the next 2 to 3 months.
The lung scan knocked us all onto our knees and the 3 to 6 months possibility, as you can only imagine, has devastated us all. We have definitely been in a period of shock. After all… this can’t be happening. We are trying to get our bearings, trying to be realistic and look at what we need to do. But I also want to say… that even with this unbelievable news, I continue to hope for Dorene and I will hope and pray EVERY day. I know you will too.
With Love,
Deborah
Dorene’s Sister
Thursday, May 27, 2010
From Dorene ~ May 26, 2010
I feel like I’m moving in slow motion
I’m moving in slow motion
and everything around me is moving so fast
I just want to go back to when things were normal
When I wasn’t poor Dorene, sick with cancer
But I am, so I can’t
and I’m just stuck
and there’s all this pressure because everyone is waiting for me to do something
But I don’t know how to do this
I don’t know how to be this person
I don’t know who this person is
How did this happen?
How did we end up here?
I’m moving in slow motion
and everything around me is moving so fast
I just want to go back to when things were normal
When I wasn’t poor Dorene, sick with cancer
But I am, so I can’t
and I’m just stuck
and there’s all this pressure because everyone is waiting for me to do something
But I don’t know how to do this
I don’t know how to be this person
I don’t know who this person is
How did this happen?
How did we end up here?
Saturday, May 8, 2010
Quick Update from Deb...
I wanted to let you know that Dorene has in some ways been having better days. Really it is an up and down thing... she feels better one or two days then doesn't. It may be that when she feels better she tries to do more and then gets tired because of the extra activity, or it may just be the nature of what her body is going through right now. But it does feel like she is having, at least some, feel better days.
The cough is still a big issue. It really has not subsided so Dorene called the Radiologist again and they confirmed again that it will take months for the cough to go away and it is because the radiation is still working in her body, or present and active... basically, the cough will not get better yet. This is a pretty big annoyance as it creates a chain reaction within her body. Talking irritates the cough and the cough causes pain and puts her out of breath and she often has to take a pain pill to help manage it. It is a big obstacle at work, especially when she is manning the phones and having to talk to customers. The radiologist offered Dorene steroids again saying it would help, but the last dose did bad things to her so she isn't willing to go there again... she chose to wait it out.
Speaking of work... I believe I mentioned before that Dorene went down to two days a week, or at least said she was considering it. So she took that big step, which was hard for her to do for several reasons. It makes her feel the cancer is winning and it is against her nature to let go of work when there are bills to be paid. But with the assurance of family members to pitch in to help compensate for those lost days and really just the realization that she needed more rest time, Dorene took that big step. I think it is already working out for the best as I've mentioned I feel like I see more good days happening.
Dorene is at work today and I'm about to start a big studio day myself but I wanted to give a bit of an update so you wouldn't have to wonder.
With Love,
Deborah
Dorene's Sister ;-) xoxo
The cough is still a big issue. It really has not subsided so Dorene called the Radiologist again and they confirmed again that it will take months for the cough to go away and it is because the radiation is still working in her body, or present and active... basically, the cough will not get better yet. This is a pretty big annoyance as it creates a chain reaction within her body. Talking irritates the cough and the cough causes pain and puts her out of breath and she often has to take a pain pill to help manage it. It is a big obstacle at work, especially when she is manning the phones and having to talk to customers. The radiologist offered Dorene steroids again saying it would help, but the last dose did bad things to her so she isn't willing to go there again... she chose to wait it out.
Speaking of work... I believe I mentioned before that Dorene went down to two days a week, or at least said she was considering it. So she took that big step, which was hard for her to do for several reasons. It makes her feel the cancer is winning and it is against her nature to let go of work when there are bills to be paid. But with the assurance of family members to pitch in to help compensate for those lost days and really just the realization that she needed more rest time, Dorene took that big step. I think it is already working out for the best as I've mentioned I feel like I see more good days happening.
Dorene is at work today and I'm about to start a big studio day myself but I wanted to give a bit of an update so you wouldn't have to wonder.
With Love,
Deborah
Dorene's Sister ;-) xoxo
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