Hello All,
It is with great sadness that I must report that Katie passed away at about 5:10 this morning. The final days of her life were pain free, peaceful, and surrounded by family and friends. We were never able to fully wake her again following Thursday nights battle with pain and nausea, but I know she was able to hear what was going on around her and was aware that she was surrounded with love. I will be making arrangements for Katie's memorial service and will post the details as soon as they are finalized. Thank you all for your love, prayers, and support through this entire journey.
Peace,
Kevin
Monday, November 7, 2011
Saturday, November 5, 2011
Better Times
Hi All,
As I was sitting here for the last few days I was looking back at the months since Katie's diagnosis and thinking about all the fun times we have had and trips we made. Things like our visit to Disneyland:
Or just the little times just sitting around the house reading a bedtime story to the twins:
The little trips we made as a family:
I know that when the years have passed we will not remember the nasty aspects of treatment or the pain and suffering we will remember the good times; the smiles and joy that we have had together.
Even here at the Hospice House we have been able to form some good memories, and have seen the smile we all love so much:
Katie has been sleeping peacefully since my last update and we are taking her medications down at a slow but steady pace looking for a place where we will be able to talk to her but she will not be in pain. I am hopeful that we will find the perfect balance but should we not I am happy that she is resting and comfortable.
Take care,
Kevin
Friday, November 4, 2011
Where did my light go?
Hi All,
Katie has had a very hard time as of late and has suffered quite a bit. Her pain and nausea were at times uncontrollable and for a bit all I could do was hold her as she cried, it broke my heart to see her in such pain and have no way of controlling it. The day we moved to the Hospice House Katie was switched from morphine to dilaudid for pain control. She had reached the point where the morphine was developing toxicity and some ugly side effects were starting to show up. Things like a little blond girl in pigtails standing at the foot of our bed, twitching, and auditory hallucinations hearing the voices of friends both old and new who were not there.
The original conversion from her dose of 90mg/hr of morphine to dilaudid was for her to get 10mg/hr with another 5mg as needed for pain control. Fast forward to last night and the dilaudid had been increased to 150mg/hr and again we had reached the point of toxicity. This time when she pushed the button for the demand dose of 75mg she would start shaking and vomiting with no relief from the pain. The staff were concerned that they would not be able to arrest the pain and would have to transport her to the ICU where they could anesthetize her under strict observation, much like going into surgery.
Fortunately they were able to control her pain but unfortunately she is now unconscious. At this point I do not know if I will be able to talk with my wife again and the prospect of that scares and saddens me like no other. Katie has been my constant companion for something like the last 21 years. I'm not sure what life is like without her.
Katie and I met while I was going to Jr. College in Centraila, WA. I had graduated from high school two years before Katie and by the time we met she had already surpassed my academic progress at CC. When we started dating I didn't have a goal or purpose for going to school, I guess it was just what I thought was expected. Katie gave me a purpose; I had to finish so I could follow her to the university. Even with a goal in mind my prior lack of focus caused me to be at Centralia for two quarters past Katie's graduation.
Being the focused, smart, fantastic person Katie is she decided that going to University of Washington in Seattle was her goal, and off to UW she went. I spent the next two quarters at CC trying to finish as quickly as possible while driving to UW every Friday night to get Katie so we could spend the weekend together in Chehalis. I would take her back late Sunday and go home to wait another week to see the love of my life.
As my graduation grew closer we talked about where we wanted to be. I was in favor of Evergreen in Olympia (state hippie college), Katie wanted UW, and we could both deal with Western. So off to Bellingham and Western Washington University it was. There again, Katie the good student finished before me.... What can I say she has always been smarter than I.
Shortly after school was over I started working for the City of Bellingham and we moved from our college apartment to our house of the last 16 years.
Not that you all wanted to read the story of how we got to Bellingham I don't know if Katie had ever gone into it. When I went to post today I noticed that she had started a post and never finished, as I read the post I thought it really spoke to how she felt just prior to coming in. I know Katie had big plans for writing her final post and a few others but in the end she felt as though she had lost the ability to type or form a coherent thought. I also consistently told her she was a freak for wanting to write about her demise...but for her I think it was a way to prepare for the inevitable and Katie has always been one to prepare.
*************************************
The following is Katie's unfinished post
*************************************
Dear friends,
This continues to be a rough go for me of late. I am feeling better but not consistently and that is rough on me both physically and mentally. I haven't quite stopped vomiting, meaning I haven't been free for an entire day yet. I escaped this morning by being what I consider very mentally strong. Breathing is good for you. I sat on the edge of my edge, my feet side by side tightly pressed together and my hands pressed down into the mattress right next to my sides. I rocked back and forth quickly and steadily just breathing through the nausea, almost rocking myself like you would do for a baby. It finally passed and I was glad that I managed to get through those moments.
This pain I feel is different that the discomfort of nausea or of any other type of symptom. I can blame chemo for a lot of my discomfort, but I can only blame this pain on the cancer. That scares me... it's a deeper feeling of mortality a sense of finality that is not the same type of emotion. I understand it myself, but it is difficult to explain.
I feel like in a way I've lost my purpose. I have the same roles to fulfill and the same duties as before the diagnosis, but I now feel like my role is to be sick. That is my job now, to manage how to be a sick person and for some reason it isn't fun and it doesn't feel very productive.
All of this seems so
**************************************
I'll post more later,
Kevin
Katie has had a very hard time as of late and has suffered quite a bit. Her pain and nausea were at times uncontrollable and for a bit all I could do was hold her as she cried, it broke my heart to see her in such pain and have no way of controlling it. The day we moved to the Hospice House Katie was switched from morphine to dilaudid for pain control. She had reached the point where the morphine was developing toxicity and some ugly side effects were starting to show up. Things like a little blond girl in pigtails standing at the foot of our bed, twitching, and auditory hallucinations hearing the voices of friends both old and new who were not there.
The original conversion from her dose of 90mg/hr of morphine to dilaudid was for her to get 10mg/hr with another 5mg as needed for pain control. Fast forward to last night and the dilaudid had been increased to 150mg/hr and again we had reached the point of toxicity. This time when she pushed the button for the demand dose of 75mg she would start shaking and vomiting with no relief from the pain. The staff were concerned that they would not be able to arrest the pain and would have to transport her to the ICU where they could anesthetize her under strict observation, much like going into surgery.
Fortunately they were able to control her pain but unfortunately she is now unconscious. At this point I do not know if I will be able to talk with my wife again and the prospect of that scares and saddens me like no other. Katie has been my constant companion for something like the last 21 years. I'm not sure what life is like without her.
Katie and I met while I was going to Jr. College in Centraila, WA. I had graduated from high school two years before Katie and by the time we met she had already surpassed my academic progress at CC. When we started dating I didn't have a goal or purpose for going to school, I guess it was just what I thought was expected. Katie gave me a purpose; I had to finish so I could follow her to the university. Even with a goal in mind my prior lack of focus caused me to be at Centralia for two quarters past Katie's graduation.
Being the focused, smart, fantastic person Katie is she decided that going to University of Washington in Seattle was her goal, and off to UW she went. I spent the next two quarters at CC trying to finish as quickly as possible while driving to UW every Friday night to get Katie so we could spend the weekend together in Chehalis. I would take her back late Sunday and go home to wait another week to see the love of my life.
As my graduation grew closer we talked about where we wanted to be. I was in favor of Evergreen in Olympia (state hippie college), Katie wanted UW, and we could both deal with Western. So off to Bellingham and Western Washington University it was. There again, Katie the good student finished before me.... What can I say she has always been smarter than I.
Shortly after school was over I started working for the City of Bellingham and we moved from our college apartment to our house of the last 16 years.
Not that you all wanted to read the story of how we got to Bellingham I don't know if Katie had ever gone into it. When I went to post today I noticed that she had started a post and never finished, as I read the post I thought it really spoke to how she felt just prior to coming in. I know Katie had big plans for writing her final post and a few others but in the end she felt as though she had lost the ability to type or form a coherent thought. I also consistently told her she was a freak for wanting to write about her demise...but for her I think it was a way to prepare for the inevitable and Katie has always been one to prepare.
*************************************
The following is Katie's unfinished post
*************************************
Dear friends,
This continues to be a rough go for me of late. I am feeling better but not consistently and that is rough on me both physically and mentally. I haven't quite stopped vomiting, meaning I haven't been free for an entire day yet. I escaped this morning by being what I consider very mentally strong. Breathing is good for you. I sat on the edge of my edge, my feet side by side tightly pressed together and my hands pressed down into the mattress right next to my sides. I rocked back and forth quickly and steadily just breathing through the nausea, almost rocking myself like you would do for a baby. It finally passed and I was glad that I managed to get through those moments.
This pain I feel is different that the discomfort of nausea or of any other type of symptom. I can blame chemo for a lot of my discomfort, but I can only blame this pain on the cancer. That scares me... it's a deeper feeling of mortality a sense of finality that is not the same type of emotion. I understand it myself, but it is difficult to explain.
I feel like in a way I've lost my purpose. I have the same roles to fulfill and the same duties as before the diagnosis, but I now feel like my role is to be sick. That is my job now, to manage how to be a sick person and for some reason it isn't fun and it doesn't feel very productive.
All of this seems so
**************************************
I'll post more later,
Kevin
Tuesday, November 1, 2011
Hospice House
Hi,
Unfortunately it is Kevin again...
Today was a day marked by uncontrolled pain and hallucinations thought to be caused by the morphine. Katie's condition continues to degrade and I had to make the decision to bring Katie to the Hospice House today. We have a goal to get her pain and vomiting under control then return home in a couple of days.
Sorry for a short and poorly written post but I do need some sleep.
Take care,
K
- Posted using BlogPress from my iPad
Unfortunately it is Kevin again...
Today was a day marked by uncontrolled pain and hallucinations thought to be caused by the morphine. Katie's condition continues to degrade and I had to make the decision to bring Katie to the Hospice House today. We have a goal to get her pain and vomiting under control then return home in a couple of days.
Sorry for a short and poorly written post but I do need some sleep.
Take care,
K
- Posted using BlogPress from my iPad
Sunday, October 30, 2011
At home but far from well
Hi All,
Kevin here again. It has been a while since I last updated you on Katie's condition and I thought it was about time since things have evolved a bit since the last update. As you know we are home from the hospital and we were doing radiation treatment to arrest the bleeding in Katie's stomach. We have finished the 10 rounds of radiation and we thought we were past the bleeding but in the last couple of days Katie's nausea and vomiting have become worse and the bleeding has returned once again. She was going through a time of vomiting about once every hour and a half or so with quite a bit of blood in her vomit; not something I wanted to see. She has now seemed to have passed the worst of the bleeding and we have her nausea mostly under control.
0
In addition to the increased nausea is vastly increased pain. We have been upping her morphine dose almost every day, with her reaching 90mg/hr this afternoon. She is now pretty much pain free but is also pretty much unconscious. Our hospice nurse has tried to convince us to make the transition to the Hospice House, but as of this afternoon Katie has remained adamant that she is not ready to pack her bags just yet. We shall see what the future brings but please know that we have made the hard decision to stop treatments and not pursue further chemo or radiation. At this point we are continuing the TPN (IV nutrition) but we are not convinced it is helping her condition as her weight continues to drop.
Please keep Katie in your prayers and please keep the cards coming, she loves to look at all the wonderful crafting you put into your cards.
Take care,
Kevin
Kevin here again. It has been a while since I last updated you on Katie's condition and I thought it was about time since things have evolved a bit since the last update. As you know we are home from the hospital and we were doing radiation treatment to arrest the bleeding in Katie's stomach. We have finished the 10 rounds of radiation and we thought we were past the bleeding but in the last couple of days Katie's nausea and vomiting have become worse and the bleeding has returned once again. She was going through a time of vomiting about once every hour and a half or so with quite a bit of blood in her vomit; not something I wanted to see. She has now seemed to have passed the worst of the bleeding and we have her nausea mostly under control.
0
In addition to the increased nausea is vastly increased pain. We have been upping her morphine dose almost every day, with her reaching 90mg/hr this afternoon. She is now pretty much pain free but is also pretty much unconscious. Our hospice nurse has tried to convince us to make the transition to the Hospice House, but as of this afternoon Katie has remained adamant that she is not ready to pack her bags just yet. We shall see what the future brings but please know that we have made the hard decision to stop treatments and not pursue further chemo or radiation. At this point we are continuing the TPN (IV nutrition) but we are not convinced it is helping her condition as her weight continues to drop.
Please keep Katie in your prayers and please keep the cards coming, she loves to look at all the wonderful crafting you put into your cards.
Take care,
Kevin
Tuesday, October 18, 2011
Going Home
Quick update while I wait for Katie's transport to radiation to arrive. We will be heading home today! Just need to get radiation done, home meds sorted,and wait to discharge. We will be keeping on the same program of IV pain and nausea meds at home; I think I'm greeting close to having my homeschool nursing degree.
Also found out that we were scheduled for 10 radiation treatments (six more after today). In the rush to get her started we didn't have a chance to go over the full details of how many and what the schedule would be, now we do.
Sunday, October 16, 2011
YAY FRIENDS!!!!
Yes it's me Katie here. Kevin has been doing a great job keeping you all updated, what a guy, he is very talented. Things are going pretty well here at the hospital, but it is very difficult for me to concentrate for very long due to all the pain meds. I leave most of the thinking to Kevin... it seriously wears me out.
The point is though that am so grateful for all of you taking the time to think of me and y family - IT DOES HELP!
The funny thing though is that I think I'll miss my crafting as much as anything else. I think of "crafting" almost like a 4th child... weird? Do any of you think like that?
Anyway, I really can't think of anything else to say. All the medical stuff has been addressed by Kevin and we don't have any other news about that. I have no idea what the radiation was like since I was knocked for both of them. Maybe I will manage to to be awake for the one that is scheduled for tomorrow.
****************************************************
That is where Katie started to nod off... It was great to see her sitting up and chatting with her Dad and the nurse. She had her normal spark in her eye and was laughing and in good spirits. I know that all of my posts here have been pretty much sticking to the facts about what is going on; it is Katie's blog after all. Today I feel I need to share story from the other day before we started radiation.
I was laying here browsing Facebook reading all the positive thoughts, well wishes, prayers, and the such when I came across a photo posted by Katie's best friend Brenda. The photo shows Katie and the twins on the front porch of the house with her kneeling down with the twins with her infectious smile and love of the boys so clear to see. The contrast between the person in the photo and the person laying in front of me hit me like few other things have; the overwhelming feeling of loss at not seeing the smile and feeling the joy that she brings to all of our lives was more than I could really deal with. The rapidness of her condition, going from sewing nap pillows for the twins kindergarten class on Thursday to being told that she wouldn't be getting out of the hospital and there was no real hope past pain management at the Hospice House while she continued to slowly bleed to death was something I was not prepared to deal with.
We have spent quite a bit of time talking about what our future holds, what our short term goals are, what our longer term goals are, where we are going to be buried... What I hadn't done was take any time or put any thought into what I needed to say to Katie, what I needed to do before she is gone and as I looked at the photo and her laying in front of me I came to know that one thing I needed. I needed to feel the joy that her smile and touch brings, to have her at home, to see her with our boys.
I do have a bit of an update (those of you that are squeamish should stop here)
As you all know, we came to the hospital due to her pain and vomiting quite a large amount of blood (very black grainy liquid), something which is quite disconcerting. Over the time we have been here she has continued to vomit on a regular basis; a hard thing to watch. While I know it is torture for her, there is a small positive part; her emesis has been getting more and more clear every day and this morning I wasn't really seeing any blood; I hope this is a sign that the radiation is working and that we are one step closer to MY short term goal of seeing her on the porch smiling with our boys, only this time Hunter has to be there too!
On another note; this morning shortly before 6:00 I woke to Katie standing over me giving me a kiss and I was again filled with that feeling of joy that I know and love so much.
Take care,
Kevin
Yes it's me Katie here. Kevin has been doing a great job keeping you all updated, what a guy, he is very talented. Things are going pretty well here at the hospital, but it is very difficult for me to concentrate for very long due to all the pain meds. I leave most of the thinking to Kevin... it seriously wears me out.
The point is though that am so grateful for all of you taking the time to think of me and y family - IT DOES HELP!
The funny thing though is that I think I'll miss my crafting as much as anything else. I think of "crafting" almost like a 4th child... weird? Do any of you think like that?
Anyway, I really can't think of anything else to say. All the medical stuff has been addressed by Kevin and we don't have any other news about that. I have no idea what the radiation was like since I was knocked for both of them. Maybe I will manage to to be awake for the one that is scheduled for tomorrow.
****************************************************
That is where Katie started to nod off... It was great to see her sitting up and chatting with her Dad and the nurse. She had her normal spark in her eye and was laughing and in good spirits. I know that all of my posts here have been pretty much sticking to the facts about what is going on; it is Katie's blog after all. Today I feel I need to share story from the other day before we started radiation.
I was laying here browsing Facebook reading all the positive thoughts, well wishes, prayers, and the such when I came across a photo posted by Katie's best friend Brenda. The photo shows Katie and the twins on the front porch of the house with her kneeling down with the twins with her infectious smile and love of the boys so clear to see. The contrast between the person in the photo and the person laying in front of me hit me like few other things have; the overwhelming feeling of loss at not seeing the smile and feeling the joy that she brings to all of our lives was more than I could really deal with. The rapidness of her condition, going from sewing nap pillows for the twins kindergarten class on Thursday to being told that she wouldn't be getting out of the hospital and there was no real hope past pain management at the Hospice House while she continued to slowly bleed to death was something I was not prepared to deal with.
We have spent quite a bit of time talking about what our future holds, what our short term goals are, what our longer term goals are, where we are going to be buried... What I hadn't done was take any time or put any thought into what I needed to say to Katie, what I needed to do before she is gone and as I looked at the photo and her laying in front of me I came to know that one thing I needed. I needed to feel the joy that her smile and touch brings, to have her at home, to see her with our boys.
I do have a bit of an update (those of you that are squeamish should stop here)
As you all know, we came to the hospital due to her pain and vomiting quite a large amount of blood (very black grainy liquid), something which is quite disconcerting. Over the time we have been here she has continued to vomit on a regular basis; a hard thing to watch. While I know it is torture for her, there is a small positive part; her emesis has been getting more and more clear every day and this morning I wasn't really seeing any blood; I hope this is a sign that the radiation is working and that we are one step closer to MY short term goal of seeing her on the porch smiling with our boys, only this time Hunter has to be there too!
On another note; this morning shortly before 6:00 I woke to Katie standing over me giving me a kiss and I was again filled with that feeling of joy that I know and love so much.
Take care,
Kevin
Friday, October 14, 2011
A Glimmer of Hope
Hi again,
We had a consult with a Radiation Oncologist today and we are starting radiation therapy today. We have a 60-70% chance that the treatment will help to stop the bleeding.
As I type I am sitting holding Katie's hand while she sleeps on the CT scanner. The scan they just completed showed that the tumor is totally obstructing her stomach; something we suspected but that the endoscopy did not show. Shortly they will be prepping her for her first treatment, let's all pray we see positive results.
Take care,
Kevin
- Posted using BlogPress from my iPad
We had a consult with a Radiation Oncologist today and we are starting radiation therapy today. We have a 60-70% chance that the treatment will help to stop the bleeding.
As I type I am sitting holding Katie's hand while she sleeps on the CT scanner. The scan they just completed showed that the tumor is totally obstructing her stomach; something we suspected but that the endoscopy did not show. Shortly they will be prepping her for her first treatment, let's all pray we see positive results.
Take care,
Kevin
- Posted using BlogPress from my iPad
A Sharp Turn Onto What Looks To Be A Short Road
Hi All,
As many of you probably know from my recent Facebook post, Katie went in for an upper endoscopy to see if there was a localized site that could be treated to arrest her bleeding; unfortunately her GI Dr. only found diffuse bleeding that could not be addressed. At this point we are left without any real viable treatment options our only hope being that the bleeding resolves on its own or possible radiation therapy which may be able to address the bleeding. We are currently waiting to hear back from her oncologist to see if the radiation folks think they can do anything and what kind of torture it would be to do it.
Katie is being treated for her pain and nausea right now and is being kept as comfortable as she can be in the hospital setting. We are currently in a very nice large room that can accommodate quite a few family and friends, a big improvement over our last hospital stay. Should the bleeding not improve or radiation not be possible we will most likely be asking to move her to the Whatcom Hospice House to provide her with as much comfort as possible.
I want to thank you for all your positive thoughts and prayers, I am constantly amazed by the support Katie, the boys, and I have received from all of you. I will update you as we know more.
Take care,
Kevin
- Posted using BlogPress from my iPad
As many of you probably know from my recent Facebook post, Katie went in for an upper endoscopy to see if there was a localized site that could be treated to arrest her bleeding; unfortunately her GI Dr. only found diffuse bleeding that could not be addressed. At this point we are left without any real viable treatment options our only hope being that the bleeding resolves on its own or possible radiation therapy which may be able to address the bleeding. We are currently waiting to hear back from her oncologist to see if the radiation folks think they can do anything and what kind of torture it would be to do it.
Katie is being treated for her pain and nausea right now and is being kept as comfortable as she can be in the hospital setting. We are currently in a very nice large room that can accommodate quite a few family and friends, a big improvement over our last hospital stay. Should the bleeding not improve or radiation not be possible we will most likely be asking to move her to the Whatcom Hospice House to provide her with as much comfort as possible.
I want to thank you for all your positive thoughts and prayers, I am constantly amazed by the support Katie, the boys, and I have received from all of you. I will update you as we know more.
Take care,
Kevin
- Posted using BlogPress from my iPad
Tuesday, October 11, 2011
Hospital Again.....
Hi all,
Just a quick update on Katie. Unfortunately we are currently back in the hospital, Katie was suffering from a significant amount of pain, nausea, and vomiting with quite a bit of blood in her vomit.
We arrived at the ER this morning and were admitted to the hospital by late afternoon. She is currently receiving two units of blood and they will evaluate her blood loss to see where go from here. The blood is originating from the tumor in her stomach and may be problematic to get under control should it not slow on its own.
I will try to keep you all updated as we know more.
Take care,
Kevin
- Posted using BlogPress from my iPad
Just a quick update on Katie. Unfortunately we are currently back in the hospital, Katie was suffering from a significant amount of pain, nausea, and vomiting with quite a bit of blood in her vomit.
We arrived at the ER this morning and were admitted to the hospital by late afternoon. She is currently receiving two units of blood and they will evaluate her blood loss to see where go from here. The blood is originating from the tumor in her stomach and may be problematic to get under control should it not slow on its own.
I will try to keep you all updated as we know more.
Take care,
Kevin
- Posted using BlogPress from my iPad
Friday, October 7, 2011
Shopping
Dear friends,
I'm a hanging in here... still no routine to the way I feel, but we've said it over and over again... it is what it is. So it worked out that I had no chemo yesterday due to really some miscommunication and in all honesty not a big deal. When I saw my oncologist, he was quite concerned for me for (that was Tuesday). I rarely cry when I visit him and I was in pain and crying and even though we discussed our next course of action, I don't think anything really stuck from that visit. He didn't think I would be ready by yesterday and yes I would have been, but an extra few days is really no big deal.
So, we took some of this extra time to do some "odd ball" shopping. We went and shopped plots, coffins, cemeteries etc. I think I have all my "wants" and "needs" figured out and I also have some peace of mind. I'm glad that Kevin went with me and that we were able to do this together without too much emotional upheaval. We are going to have a combined headstone with 2 plots.
For a while there I worried about a 3rd member, but I'm not going to worry about it now. I'll let Kevin and the "3rd" person figure it out when it comes their time.
I apologize ahead of time due to the subject matter... not that fun I know.
Thank you all for continuing with me on my journey... you all deserve kudos!!!!
Until next time.
-Katie
I'm a hanging in here... still no routine to the way I feel, but we've said it over and over again... it is what it is. So it worked out that I had no chemo yesterday due to really some miscommunication and in all honesty not a big deal. When I saw my oncologist, he was quite concerned for me for (that was Tuesday). I rarely cry when I visit him and I was in pain and crying and even though we discussed our next course of action, I don't think anything really stuck from that visit. He didn't think I would be ready by yesterday and yes I would have been, but an extra few days is really no big deal.
So, we took some of this extra time to do some "odd ball" shopping. We went and shopped plots, coffins, cemeteries etc. I think I have all my "wants" and "needs" figured out and I also have some peace of mind. I'm glad that Kevin went with me and that we were able to do this together without too much emotional upheaval. We are going to have a combined headstone with 2 plots.
For a while there I worried about a 3rd member, but I'm not going to worry about it now. I'll let Kevin and the "3rd" person figure it out when it comes their time.
I apologize ahead of time due to the subject matter... not that fun I know.
Thank you all for continuing with me on my journey... you all deserve kudos!!!!
Until next time.
-Katie
Sunday, October 2, 2011
MultiMotions?
Dear friends,
It's getting hard. Everything. I felt well enough and coherent enough to walk with Lynds to get the boys last Friday. I walked with E and Kevin for the first of school and that was wonderful but Friday was the first day that I was able to pick them them up. I haven't dropped them off or taken them independently yet... it hurts!
Anyway seeing them raise their hand on the playground showing that they recognized me was a hard moment... one of those all emotions rolled into one. It was a surprise but I can't promise from one day to the next if I can get them. Will told me it was a nice surprise.
It took me 2 weeks to get to the point where I could actually get them.
Also, just wanted to let you know that I did get that brain MRI and it's a clean scan.
It's getting hard. Everything. I felt well enough and coherent enough to walk with Lynds to get the boys last Friday. I walked with E and Kevin for the first of school and that was wonderful but Friday was the first day that I was able to pick them them up. I haven't dropped them off or taken them independently yet... it hurts!
Anyway seeing them raise their hand on the playground showing that they recognized me was a hard moment... one of those all emotions rolled into one. It was a surprise but I can't promise from one day to the next if I can get them. Will told me it was a nice surprise.
It took me 2 weeks to get to the point where I could actually get them.
Also, just wanted to let you know that I did get that brain MRI and it's a clean scan.
Friday, September 30, 2011
This moment is a good moment
Today's Outs:
Aunt Beth and Uncle Jim, Donna McW, Sampson Family, Marie H, Barbara Diane x2, Michele H
************************
Boy, life is getting mess and messier, so many things getting in the way, but to be honest a lot is of it is in my head !Literally. I hate telling people that I "used" to be a smart person. Please forgive me if, and it happens again that I have forgotten to mention that I got one you YOUR SPECIAL cards.
Here is a little example of what happens a lot and of course happens and happens OVER again OVER while typing. I was a decent typist, but not for a long time. For some reason now, I can't ever seem to put my hands back on the keyboard in the same position. Gosh I hope I'm some sense.
************
So the next point is that its 2:11am here and I'm blogging. Yes, I woke up some what alert and by mysaelf which isn't the good part, normally we strive to awake with living, if you know what I mean. I'm going to try much shorter blogging and see if that works...we'll see!
*******************************
i love you family. i love you my friends. i wouldn't get by all these hard days with you.
Aunt Beth and Uncle Jim, Donna McW, Sampson Family, Marie H, Barbara Diane x2, Michele H
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Boy, life is getting mess and messier, so many things getting in the way, but to be honest a lot is of it is in my head !Literally. I hate telling people that I "used" to be a smart person. Please forgive me if, and it happens again that I have forgotten to mention that I got one you YOUR SPECIAL cards.
Here is a little example of what happens a lot and of course happens and happens OVER again OVER while typing. I was a decent typist, but not for a long time. For some reason now, I can't ever seem to put my hands back on the keyboard in the same position. Gosh I hope I'm some sense.
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So the next point is that its 2:11am here and I'm blogging. Yes, I woke up some what alert and by mysaelf which isn't the good part, normally we strive to awake with living, if you know what I mean. I'm going to try much shorter blogging and see if that works...we'll see!
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i love you family. i love you my friends. i wouldn't get by all these hard days with you.
Wednesday, September 28, 2011
Quick Update
It's been quite some time since Katie felt like getting to the computer so I thought I would provide a quick update on her condition. Katie continues to be hooked up to the Total Parenteral Nutrition (TPN) IV (Wikipedia has a somewhat decent entry on TPN) and is currently receiving about 1500 calories a day. She has been able to eat a couple of things lately without getting sick and we are hoping the trend continues and improves. We have also had a change in her chemo regiment as a result of the TPN being hooked to her port 24/7, rather than going home with the portable infusion pump for her 5-FU, she has been receiving Xeloda a pill form of chemo that she takes morning and night for seven days (today being the last day). So far her nausea has been quite a bit better; a very welcome improvement over past treatments. Her red blood cell counts continue to be very low which resulted in her having to get another two units of blood.
As for the future? I think we will be staying on the Xeloda for at least the next round of chemo and Katie has another brain MRI scheduled for Friday; I'm hopeful they will continue to find there is nothing going on in her head. She will also be continuing the TPN until she is able to eat normally, although we are dropping down to 18 hours a day starting tomorrow.
Not all is bleak though, Katie was able to get up and make it to the Twins school picnic yesterday! The boys had fun eating lunch with Mom and Dad and then having us go out on the playground with them. It was great to see her out of the house for something other than a doctor visit.
Thank you all for your comments and emails, Katie gains great strength from your positive thoughts and prayers.
As for the future? I think we will be staying on the Xeloda for at least the next round of chemo and Katie has another brain MRI scheduled for Friday; I'm hopeful they will continue to find there is nothing going on in her head. She will also be continuing the TPN until she is able to eat normally, although we are dropping down to 18 hours a day starting tomorrow.
Not all is bleak though, Katie was able to get up and make it to the Twins school picnic yesterday! The boys had fun eating lunch with Mom and Dad and then having us go out on the playground with them. It was great to see her out of the house for something other than a doctor visit.
Thank you all for your comments and emails, Katie gains great strength from your positive thoughts and prayers.
Sunday, September 18, 2011
I've been swimming but it hasn't been pretty!
Yikes friends! Another post with a long break and that is what has been going on. Let me catch you up. I even read the last post and it sounds ok... promising even, but I guess reality is slightly diffrerent than blogality because YESTERDAY was really the first day that I recall feeling some-what normal and that isn't so normal. I have managed at least one day since the 4th without vomiting.
After my release from the hospital I did get a visit from Hospice and so far so good, insurance is covering both components of my care. My goal is to not get re-admitted to the hospital, but I will be honest and say that if it takes that long again to be discharged, I'm walking out on my volition. My lawyer/blogger friend says it's not against the law you know....I'm keeping her to her word too!
This past week I had Hospice and a company called Infusion Solution come to my house. The hospice nurses have come to check on me, set me up with some fluids, take blood, etc. Having them come to the home has been an immense stress reliever for me and so much more comfortable.
The Infusion Solution people are the ones that are taking care of my "nutritional" needs at the moment... A bag of white nutritionally sound food that is hooked up to my port. They monitor vitamin levels and etc. and continue to tweak a perfect combination just for me! The bag fits into a lovely normal sized back pack and I am free to go gallivant around the country side. So far it's attached 24/7 but should be tapering off, 18 hours/ 12 hours/ 8 hours? Not exactly sure. I can continue to eat if I want, but as usual not much stays down.
All I can tell you is that I feel like I've been swimming and swimming, swimming in mud, dirt, muck, and every shade and thickness in between. It has been extremely hard for me to keep my head and attitude up above this river this time around. This has been the darkest I have felt since this whole experience has begun. I physically ache and the nausea can almost me unbearable at times and just laying there in bed seemed to take it's toll.
What it has done though is brought to light things (decisions) that I need to get taken care off. I've started to talk about the "important" stuff to the "mundane" stuff... I find that if I can start talking about them whether it's to strangers or the most important people to me it makes it easier to talk about them over and over again.
I need that. And I want everyone to understand that it's for ME not for YOU. It kills me to talk about certain things one minute, but the next day it may be like talking about changing one's pants. Every emotion is tenaciousness and brittle and hard to experience and I never know what emotions will emerge at that second, but I NEED to have them addressed one way or another over and over again... FOR ME.
School has started, but no journals for me yet. It's important that I have try to hand write all my things that I want to touch on. I've decided they will really be more snip its/ stories/ anecdotes/ history/hopes etc for all of us. The little ones won't even be reading these for a very long time anyway, although I want to incorporate "younger version" concepts too. Goal to live up!
Hunter's been doing great at the middle school (so he says, but I'll take it at face value). The little ones both had an individual melt down the very last day of the first week of school. Nothing major and nothing related... but go figure same day huh? I've got appointments scheduled for them for next week... quick 1/2 hour sessions.
I still thank and bless every one of you out there reading, loving, praying, supporting, sharing etc.
Until next time.
-Katie
After my release from the hospital I did get a visit from Hospice and so far so good, insurance is covering both components of my care. My goal is to not get re-admitted to the hospital, but I will be honest and say that if it takes that long again to be discharged, I'm walking out on my volition. My lawyer/blogger friend says it's not against the law you know....I'm keeping her to her word too!
This past week I had Hospice and a company called Infusion Solution come to my house. The hospice nurses have come to check on me, set me up with some fluids, take blood, etc. Having them come to the home has been an immense stress reliever for me and so much more comfortable.
The Infusion Solution people are the ones that are taking care of my "nutritional" needs at the moment... A bag of white nutritionally sound food that is hooked up to my port. They monitor vitamin levels and etc. and continue to tweak a perfect combination just for me! The bag fits into a lovely normal sized back pack and I am free to go gallivant around the country side. So far it's attached 24/7 but should be tapering off, 18 hours/ 12 hours/ 8 hours? Not exactly sure. I can continue to eat if I want, but as usual not much stays down.
All I can tell you is that I feel like I've been swimming and swimming, swimming in mud, dirt, muck, and every shade and thickness in between. It has been extremely hard for me to keep my head and attitude up above this river this time around. This has been the darkest I have felt since this whole experience has begun. I physically ache and the nausea can almost me unbearable at times and just laying there in bed seemed to take it's toll.
What it has done though is brought to light things (decisions) that I need to get taken care off. I've started to talk about the "important" stuff to the "mundane" stuff... I find that if I can start talking about them whether it's to strangers or the most important people to me it makes it easier to talk about them over and over again.
I need that. And I want everyone to understand that it's for ME not for YOU. It kills me to talk about certain things one minute, but the next day it may be like talking about changing one's pants. Every emotion is tenaciousness and brittle and hard to experience and I never know what emotions will emerge at that second, but I NEED to have them addressed one way or another over and over again... FOR ME.
School has started, but no journals for me yet. It's important that I have try to hand write all my things that I want to touch on. I've decided they will really be more snip its/ stories/ anecdotes/ history/hopes etc for all of us. The little ones won't even be reading these for a very long time anyway, although I want to incorporate "younger version" concepts too. Goal to live up!
Hunter's been doing great at the middle school (so he says, but I'll take it at face value). The little ones both had an individual melt down the very last day of the first week of school. Nothing major and nothing related... but go figure same day huh? I've got appointments scheduled for them for next week... quick 1/2 hour sessions.
I still thank and bless every one of you out there reading, loving, praying, supporting, sharing etc.
Until next time.
-Katie
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