Thursday was the start of R8D1 on the new schedule. Things went pretty well with 2 weeks on and 1 week off. I didn't feel too badly after chemo and therefore, probably have overdone it the last couple of days getting ready to leave.
I am all packed, the van is packed and we are ready to go early in the morning. Kohlbi was ready to go tonight, so he hopped in his crate in the van while Michael was loading some stuff.
I am going to bed, I'm exhausted. I will probably not blog until we get home in a week. Enjoy the week. I know we will.
Sunday, September 28, 2008
Sunday, September 21, 2008
Mourning
I've been feeling pretty emotional off and on over the past week. I'm not sure why. Yesterday I had a headache and was just not up to yard work or anything majorly physical. I've done quite a bit of that during the week.
I went to lie down, and Michael came in from working on the property. I just started crying because I wasn't up to working. Michael was disappointed and I was disappointed. I realized that I need to mourn for the physical person I no longer am as I have mourned for other things I have lost. It's a hard process. At the beginning of the journey, I had no idea how complicated and all-encompassing the changes and adjustments would be. Six months later I am still trying to figure it all out.
I am no longer a person who can take a dog for a 2-3 hour walk. I can't walk a half-marathon. I can't do hours on end of house projects (inside or outside). That's not the me I'm familiar with. I realized that I hate the physical person I am right now.
I had lunch with a couple of people this week whom I hadn't seen in awhile. When they saw me I could see shock and sadness in their eyes at how I look. It was hard.
I am slowly coming to terms with the face I see in the mirror. I hope that in time I will learn to accept the body that is less capable now.
I went to lie down, and Michael came in from working on the property. I just started crying because I wasn't up to working. Michael was disappointed and I was disappointed. I realized that I need to mourn for the physical person I no longer am as I have mourned for other things I have lost. It's a hard process. At the beginning of the journey, I had no idea how complicated and all-encompassing the changes and adjustments would be. Six months later I am still trying to figure it all out.
I am no longer a person who can take a dog for a 2-3 hour walk. I can't walk a half-marathon. I can't do hours on end of house projects (inside or outside). That's not the me I'm familiar with. I realized that I hate the physical person I am right now.
I had lunch with a couple of people this week whom I hadn't seen in awhile. When they saw me I could see shock and sadness in their eyes at how I look. It was hard.
I am slowly coming to terms with the face I see in the mirror. I hope that in time I will learn to accept the body that is less capable now.
Thursday, September 18, 2008
Playing Pool
Last night I started playing on an in-house pool league. I literally haven't picked up a stick in 6 months. It showed. I made a few good shots, but missed some easy ones. I lost all of my four games (2 eightball, 2 nineball). The people are all very nice. They are people Michael has been playing league with for awhile.
I'm on the league because they needed a low-ranked player to balance the team. They were very eager for me to play. I laughed and told Michael I wasn't sure if I should be flattered or insulted. I said I would give it a try when I wasn't working anymore and with assurances that we wouldn't have to stay until really late to finish playing.
It was fun, tho we got home past my normal bedtime. I did discover that I can't really play with a baseball cap. If the bill is facing forward, I have to move my head weird to line up a shot. If I have the bill backwards, the hat falls off when I raise my head. I may actually have to wear the short wig to play. Or, find a hat with a smaller bill. Or, if I was really brave, play without a hat. I'm not ready for that yet, plus I have a really nice bruise on my head where I hit it on the corner of my desk.
I know that I will get better with practice. It takes time for the muscle memory to come back. I'm not sure whether chemo brain will affect my play or not. Anyway, it's a fun thing that Michael and I can do together. And, it is nice to be wanted.
I'm on the league because they needed a low-ranked player to balance the team. They were very eager for me to play. I laughed and told Michael I wasn't sure if I should be flattered or insulted. I said I would give it a try when I wasn't working anymore and with assurances that we wouldn't have to stay until really late to finish playing.
It was fun, tho we got home past my normal bedtime. I did discover that I can't really play with a baseball cap. If the bill is facing forward, I have to move my head weird to line up a shot. If I have the bill backwards, the hat falls off when I raise my head. I may actually have to wear the short wig to play. Or, find a hat with a smaller bill. Or, if I was really brave, play without a hat. I'm not ready for that yet, plus I have a really nice bruise on my head where I hit it on the corner of my desk.
I know that I will get better with practice. It takes time for the muscle memory to come back. I'm not sure whether chemo brain will affect my play or not. Anyway, it's a fun thing that Michael and I can do together. And, it is nice to be wanted.
Tuesday, September 16, 2008
Defining 'Feeling Crappy'
Michael and I were doing something the other day and he asked me how I was feeling. I'm ALWAYS tired and said so, but told him I was just feeling crappy. He asked me what that meant exactly. I thought it was a good question. I had never really thought about it; just used that word.
There is no exact science to what feeling crappy is. This week it's been a 5-day headache, not pounding, but annoying. It can be chills. It can be muscle aches and cramps. Of course, it can be chemo 'hangover'. Sometimes it is my heart pounding very hard where I can almost feel a pulse in my body where there isn't one. It can be just the uncomfortableness of feeling really full in my stomach/throat and needing to burp. It can sometimes be a bit of nausea. Sometimes there is just a feeling in the core of my body that is aching--very hard to describe. I may feel a bit like I have some MS issues (leg fatigue, balance issues, even worse-than-normal chemo brain--if there can be such a thing). Crappy can just be the opposite of feeling good. I can't remember when I actually felt good, with no level of crappy. OK, enough whining.
I know that the fatigue (with cancer/chemo as with MS) can sometimes be invisible. The crappy can be invisible as well. Sometimes I push through the 'crappy' to do what's important to me, to Michael, and to others. Sometimes I just can't push and have to do the right thing for me. Believe me, if I have to cancel plans to something I've looked forward to, I'm just as bummed as Michael or anyone else.
I'm sure everyone has their own definition of crappy. This is mine. Feel free to send me yours. :-)
There is no exact science to what feeling crappy is. This week it's been a 5-day headache, not pounding, but annoying. It can be chills. It can be muscle aches and cramps. Of course, it can be chemo 'hangover'. Sometimes it is my heart pounding very hard where I can almost feel a pulse in my body where there isn't one. It can be just the uncomfortableness of feeling really full in my stomach/throat and needing to burp. It can sometimes be a bit of nausea. Sometimes there is just a feeling in the core of my body that is aching--very hard to describe. I may feel a bit like I have some MS issues (leg fatigue, balance issues, even worse-than-normal chemo brain--if there can be such a thing). Crappy can just be the opposite of feeling good. I can't remember when I actually felt good, with no level of crappy. OK, enough whining.
I know that the fatigue (with cancer/chemo as with MS) can sometimes be invisible. The crappy can be invisible as well. Sometimes I push through the 'crappy' to do what's important to me, to Michael, and to others. Sometimes I just can't push and have to do the right thing for me. Believe me, if I have to cancel plans to something I've looked forward to, I'm just as bummed as Michael or anyone else.
I'm sure everyone has their own definition of crappy. This is mine. Feel free to send me yours. :-)
Friday, September 12, 2008
R7D8 and Other Things
Yesterday was Round 7 Day 8. My counts were low, but high enough to get a full dosage. I also went in today and got a shot of Neulasta to help boost white cell counts. After that I went to the chiropractor (whom I haven't seen in WAY too long), and he said that a neck adjustment boosts the white cells by 200-400% for several hours. I will try to go in after each chemo.
Wednesday was my last official day at work. I still need to go through a few more things, but all my personal stuff is out. Many people stopped by during the day and I got many more emails. Some were quite emotional and came from unexpected people. I have been blown away by remembrances of conversations that really made a difference for people and for me. It was very bittersweet. Apparently we can have a bigger impact on people than we give ourselves credit for. It's been very humbling these last few days to learn this.
The other night Michael and I had a 'communication night'. Things were bothering him, we both got pissy and once we got done with that, we talked about it. He is feeling like he is already losing me. Even when we're together, I am often so tired, he feels alone. It is easy for me to turn inwards when I'm not feeling well. I've been spending time making plans to have lunch with friends on my good days. I need to realize that I can't completely spend myself for other people and not save anything for Michael and me. It was a good knock on the head.
It's ironic that I'm not working and feel like I have even less time for things. There are days where it is just easy to stand down and not put forth energy. There are also times when I push myself to do things that need to be done. I need to ask Michael what is important and he needs to tell me so that I can put energy where it is important for the two of us.
Good communication is difficult and it often initiates under tension, but we need to keep working on it.
Wednesday was my last official day at work. I still need to go through a few more things, but all my personal stuff is out. Many people stopped by during the day and I got many more emails. Some were quite emotional and came from unexpected people. I have been blown away by remembrances of conversations that really made a difference for people and for me. It was very bittersweet. Apparently we can have a bigger impact on people than we give ourselves credit for. It's been very humbling these last few days to learn this.
The other night Michael and I had a 'communication night'. Things were bothering him, we both got pissy and once we got done with that, we talked about it. He is feeling like he is already losing me. Even when we're together, I am often so tired, he feels alone. It is easy for me to turn inwards when I'm not feeling well. I've been spending time making plans to have lunch with friends on my good days. I need to realize that I can't completely spend myself for other people and not save anything for Michael and me. It was a good knock on the head.
It's ironic that I'm not working and feel like I have even less time for things. There are days where it is just easy to stand down and not put forth energy. There are also times when I push myself to do things that need to be done. I need to ask Michael what is important and he needs to tell me so that I can put energy where it is important for the two of us.
Good communication is difficult and it often initiates under tension, but we need to keep working on it.
Tuesday, September 9, 2008
The Journey
Last night I sent out an email to a lot of people at Ball Aerospace with whom I have worked, befriended, and/or had more than a brief contact over the past 30 years. I told them I was going on medical leave. Many people there know of my journey and some I thought would have heard, had not. I received MANY emails in return containing warm and encouraging words. One fellow coworker, Paul Rollings, sent me this original writing. I think it is very eloquent and expresses a lot of things really nicely. I am sharing it with his permission.
The Journey
The journey begins on the day of our birth
As our soul is delivered to this place we call earth.
Unknown at the beginning on the day that we start
Not a physical journey, but one of the heart.
Years do pass and great things we are shown
To guide us on this trek that’s uniquely our own.
On the path we meet others in happiness and in strife
For the moment unsure what they will mean in our life.
A chance circumstance is what we’d like to believe
When another passage is revealed, new direction conceived.
Searching for answers, this new way we will try
At times drawn by a force that we cannot deny.
Many books have been written with specific detail
and great prophets have spoke of their time on the trail.
But the journey of one does not another one make
So each must find for themselves the pathway to take.
There are times in our travel when there is no doubt
boldly moving forward, engaged in what life`s all about.
Other times on the voyage we’re unsure of the way
and in quiet solace we kneel down and pray.
This journey of the soul defies all time and space
for a road deep within is where it takes place.
So the journey continues even after we die
our final path chosen as we soar to the sky.
Only then in our travel when we’re finally called home
do we realize …we were never alone.
Paul Rollings copyright 6/99
The Journey
The journey begins on the day of our birth
As our soul is delivered to this place we call earth.
Unknown at the beginning on the day that we start
Not a physical journey, but one of the heart.
Years do pass and great things we are shown
To guide us on this trek that’s uniquely our own.
On the path we meet others in happiness and in strife
For the moment unsure what they will mean in our life.
A chance circumstance is what we’d like to believe
When another passage is revealed, new direction conceived.
Searching for answers, this new way we will try
At times drawn by a force that we cannot deny.
Many books have been written with specific detail
and great prophets have spoke of their time on the trail.
But the journey of one does not another one make
So each must find for themselves the pathway to take.
There are times in our travel when there is no doubt
boldly moving forward, engaged in what life`s all about.
Other times on the voyage we’re unsure of the way
and in quiet solace we kneel down and pray.
This journey of the soul defies all time and space
for a road deep within is where it takes place.
So the journey continues even after we die
our final path chosen as we soar to the sky.
Only then in our travel when we’re finally called home
do we realize …we were never alone.
Paul Rollings copyright 6/99
Monday, September 8, 2008
MRI
I had a neurological MRI today. My neurologist had suggested I stop my daily shot of MS medicine when I started chemo. He thought that maybe the chemo would continue to work as well as the MS drug. It's been six months, so we will see what's happening. I'm not too worried.
While we were waiting for the scan, the oncologist walked by. He asked if his assistant had called me with my latest CA19-9 numbers (which she had this morning). The number is 1036. Not up much from the last one. I count that as good. Hopefully the next one will go down, with consistent dosing. It also correlates with the fact that I have had some growth activity.
So the scan and the numbers are pretty consistent with each other. Somehow that gives me a sense of comfort. That sounds kind of strange and I can't really explain it.
Wed is my last day working. It will be bitter sweet.
While we were waiting for the scan, the oncologist walked by. He asked if his assistant had called me with my latest CA19-9 numbers (which she had this morning). The number is 1036. Not up much from the last one. I count that as good. Hopefully the next one will go down, with consistent dosing. It also correlates with the fact that I have had some growth activity.
So the scan and the numbers are pretty consistent with each other. Somehow that gives me a sense of comfort. That sounds kind of strange and I can't really explain it.
Wed is my last day working. It will be bitter sweet.
Friday, September 5, 2008
Results and R7D1
Not as good as I had hoped and certainly not as bad as my uninhibited imagination had me thinking.
The large tumor in my liver is back to the same size it was at the beginning. The others haven't changed. The tumor in my pancreas hasn't changed. There were a couple of miniscule dots in my lung on the last scan. Those have gotten a smidge bigger and there are a couple more. They are not anything to be concerned about at this time.
We changed my treatment schedule to 2 weeks on and 1 week off. By the third treatment in my previous rounds, my counts would be so low that they either wouldn't treat me or I got a drastically reduced treatment. We are going with the lowered dosage we started at the beginning of the last round and will increase it a bit nexxt round if things go OK. We don't have CA19-9 numbers yet, so don't know if that has changed significantly in the last month. After a couple of rounds we will see where the numbers are and get another scan if we need to. We are hoping that the inconsistency of my treatment during the last 3 months is what is causing some growth. If that doesn't prove true, we will try another drug.
Despite all that, the Dr. says overall I am doing well. I haven't lost a significant amount of weight in the last few weeks. People say I look good. I assume if I looked like crap they wouldn't say anything at all, so I take them at their word.
I did pretty good with my treatment yesterday. A headache last night and this morning. Thankfully some good friends had us over and bathed and dried Kohlbi, as that would have been too much. Today we were at the Local Samoyed Specialty in Greeley. It was a long day. Tomorrow and Sunday we will have shorter days at the show.
I am optimistic that things will continue to go well and I know that the prayers and positive thoughts that are being sent my way make a difference.
The large tumor in my liver is back to the same size it was at the beginning. The others haven't changed. The tumor in my pancreas hasn't changed. There were a couple of miniscule dots in my lung on the last scan. Those have gotten a smidge bigger and there are a couple more. They are not anything to be concerned about at this time.
We changed my treatment schedule to 2 weeks on and 1 week off. By the third treatment in my previous rounds, my counts would be so low that they either wouldn't treat me or I got a drastically reduced treatment. We are going with the lowered dosage we started at the beginning of the last round and will increase it a bit nexxt round if things go OK. We don't have CA19-9 numbers yet, so don't know if that has changed significantly in the last month. After a couple of rounds we will see where the numbers are and get another scan if we need to. We are hoping that the inconsistency of my treatment during the last 3 months is what is causing some growth. If that doesn't prove true, we will try another drug.
Despite all that, the Dr. says overall I am doing well. I haven't lost a significant amount of weight in the last few weeks. People say I look good. I assume if I looked like crap they wouldn't say anything at all, so I take them at their word.
I did pretty good with my treatment yesterday. A headache last night and this morning. Thankfully some good friends had us over and bathed and dried Kohlbi, as that would have been too much. Today we were at the Local Samoyed Specialty in Greeley. It was a long day. Tomorrow and Sunday we will have shorter days at the show.
I am optimistic that things will continue to go well and I know that the prayers and positive thoughts that are being sent my way make a difference.
Monday, September 1, 2008
Scared
I'm scared about my scan results. I can keep the thoughts at bay during the day/evening while I am occupied with other things like dog shows, reading, errands, TV, etc. At the end of the day when I'm getting ready for bed, it hits me. I'm scared. I cry. I try not to imagine the worst, yet at the same time try to be prepared for it. It's a hard dichotomy to traverse.
Tonight Michael suggested I get up and blog about what I'm feeling. I had thought the same thing, but didn't want to do it without him knowing how I was feeling first. Bless his heart for convincing me I need to do this.
It's been 6 months. It hasn't been easy. I think I've weathered everything fairly well, all things considered. I don't feel great most of the time, and that is worrisome. I don't know if it's the chemo or the cancer or both. Barring pleurisy or really low counts, I manage to go on and live a pretty normal life. People are still treating me like me and most are comfortable asking about the cancer and chemo. I'm grateful for that.
I'm still not used to seeing that other woman in my mirror. The one who's lost 30 pounds, has dry, scaly skin, and the sparse hair that often sticks up like she'd had her finger in a light socket. I get to know her a little more each day, but in many ways she is still a stranger. I am trying to make friends with her and slowly we are getting to know each other better.
I've mentioned that my CA19-9 numbers had gone up a bit last month. I will get the test again on Thursday with my other bloodwork, so won't know my scores again until maybe Friday. I WILL know what the scan shows on Thursday. I am looking forward to it and dreading it at the same time.
I know my family and friends are as anxious as I am to know what is happening. I try to think positive thoughts and picture the imagery of everyone's thoughts and prayers raining down on me as a warm light. It is a little soothing.
I tell myself that I can't change the results by worrying about it, but the worrier part comes out to haunt me before I sleep. I go sleep with a little pharmaceutical help now. It's too hard to quiet the mind at night.
I think it's helped to write this in real time--as I am feeling it. It doesn't quiet my fears, but I don't feel as alone with them. Thanks for sharing them with me.
Tonight Michael suggested I get up and blog about what I'm feeling. I had thought the same thing, but didn't want to do it without him knowing how I was feeling first. Bless his heart for convincing me I need to do this.
It's been 6 months. It hasn't been easy. I think I've weathered everything fairly well, all things considered. I don't feel great most of the time, and that is worrisome. I don't know if it's the chemo or the cancer or both. Barring pleurisy or really low counts, I manage to go on and live a pretty normal life. People are still treating me like me and most are comfortable asking about the cancer and chemo. I'm grateful for that.
I'm still not used to seeing that other woman in my mirror. The one who's lost 30 pounds, has dry, scaly skin, and the sparse hair that often sticks up like she'd had her finger in a light socket. I get to know her a little more each day, but in many ways she is still a stranger. I am trying to make friends with her and slowly we are getting to know each other better.
I've mentioned that my CA19-9 numbers had gone up a bit last month. I will get the test again on Thursday with my other bloodwork, so won't know my scores again until maybe Friday. I WILL know what the scan shows on Thursday. I am looking forward to it and dreading it at the same time.
I know my family and friends are as anxious as I am to know what is happening. I try to think positive thoughts and picture the imagery of everyone's thoughts and prayers raining down on me as a warm light. It is a little soothing.
I tell myself that I can't change the results by worrying about it, but the worrier part comes out to haunt me before I sleep. I go sleep with a little pharmaceutical help now. It's too hard to quiet the mind at night.
I think it's helped to write this in real time--as I am feeling it. It doesn't quiet my fears, but I don't feel as alone with them. Thanks for sharing them with me.
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