Just a quick note here - I'm trying to overcome my arthritic stiffness to get the troup carrier for the trip to the SSB for the weekend. Gotta watch our property since our 16 year old nephew will be there along with (probably) 15 or so of his closest friends for the youth hunt weekend. Since the little place they hunt is surrounded by the rest of the family, he doesn't think a thing in this world about just using our feeders while he is there. At least he will not qualify for this youth only weekend again. He will be too old!
The real news is that in about a week, either Friday, November 2, or Tuesday, November November 6, I will be rid of the port-a-cath! I am sooooo glad! I may be imagining it all, but since it has been a good two months since it was flushed, I think I am having some issues with it. Regardless, the area is tender and always has been. But I get rid of it!
That is the big news. Funny how small things become so important. It's just another step toward feeling like a survivor instead of a patient.
Ya'll have a good weekend!
Friday, October 26, 2007
Wednesday, October 24, 2007
Families
According to Jeff Foxworthy, "You might be a redneck if you go to a family reunion to get a date."
We went to a family reunion Saturday. I was looking around, and realized that for my grandchildren (ages seven, three and three months), they could at some point go to the family reunions and look for a date because the lines of being related are really stretched. Their generation would be something like fourth or fifth cousins in some cases! I guess that would certainly make them rednecks!
We now have the fourth generations coming to this reunion. This is my father-in-law’s family, and the reunions began about 35 years ago. There were originally ten children in that family. It was five boys followed by five girls. There are only two of the boys left now, the oldest is about 91, and there are four girls left. The youngest is in her 70's. The first reunions were predominantly first and second generations (if we begin only with those 10 children).
When the reunion began, their children (us, in other words) were either newly married or not married. Many of them were still in school. Now we all have children, grandchildren, and one who married at 16 (!!) has great-grandchildren. Those children are fourth cousins. And there is a bunch of them!
It is interesting watching the family grow. With that growth, I find myself wondering if our children and those of their generation will want to continue this tradition. Back 30 years ago, I would have never dreamed that I would look forward to these gatherings. I thought when the previous generation was not able to organize them anymore, they would cease.
My generation has slipped into the organization role. Of the ten children, only five procreated. And of that only four had more than one child who is interested in this type of thing. The fifth family remained rather aloof, so their little chick didn’t interact with the cousins at all. These four families have picked up the gauntlet, and for the last 10 years, we have taken care of planning the reunions. I wonder what will happen with our kids (the "grandchildren" in this cast of characters) are of age to step up.
Lady Bug was busily playing with her distant cousins before lunch. She was having a great time. At lunch she rejoined us and her parents. She exclaimed "I’m related to all these people!" She was so amazed at that prospect. Her horizons suddenly broadened. Perhaps there is hope for this little family reunion!
This year she has been to the German hill country family reunion occurring in July. It never struck her that she was related to all those people also. Perhaps that is partially because there simply weren’t as many younger kids there.
I have become fascinated with researching our families. I have most branches of my family traced back many, many generations. It is a subject that has me addicted!
I hope Lady Bug really begins to appreciate family ties!
We went to a family reunion Saturday. I was looking around, and realized that for my grandchildren (ages seven, three and three months), they could at some point go to the family reunions and look for a date because the lines of being related are really stretched. Their generation would be something like fourth or fifth cousins in some cases! I guess that would certainly make them rednecks!
We now have the fourth generations coming to this reunion. This is my father-in-law’s family, and the reunions began about 35 years ago. There were originally ten children in that family. It was five boys followed by five girls. There are only two of the boys left now, the oldest is about 91, and there are four girls left. The youngest is in her 70's. The first reunions were predominantly first and second generations (if we begin only with those 10 children).
When the reunion began, their children (us, in other words) were either newly married or not married. Many of them were still in school. Now we all have children, grandchildren, and one who married at 16 (!!) has great-grandchildren. Those children are fourth cousins. And there is a bunch of them!
It is interesting watching the family grow. With that growth, I find myself wondering if our children and those of their generation will want to continue this tradition. Back 30 years ago, I would have never dreamed that I would look forward to these gatherings. I thought when the previous generation was not able to organize them anymore, they would cease.
My generation has slipped into the organization role. Of the ten children, only five procreated. And of that only four had more than one child who is interested in this type of thing. The fifth family remained rather aloof, so their little chick didn’t interact with the cousins at all. These four families have picked up the gauntlet, and for the last 10 years, we have taken care of planning the reunions. I wonder what will happen with our kids (the "grandchildren" in this cast of characters) are of age to step up.
Lady Bug was busily playing with her distant cousins before lunch. She was having a great time. At lunch she rejoined us and her parents. She exclaimed "I’m related to all these people!" She was so amazed at that prospect. Her horizons suddenly broadened. Perhaps there is hope for this little family reunion!
This year she has been to the German hill country family reunion occurring in July. It never struck her that she was related to all those people also. Perhaps that is partially because there simply weren’t as many younger kids there.
I have become fascinated with researching our families. I have most branches of my family traced back many, many generations. It is a subject that has me addicted!
I hope Lady Bug really begins to appreciate family ties!
Tuesday, October 23, 2007
My son
This is not my planned post. I had another one already written and ready to post. God has a funny way of snapping us upright, letting us know that we are not the real planners of our lives. Things happen beyond our control. I had not planned to spend ten months of life in a battle with cancer. I didn’t plan to lose my right breast and my hair. I had not planned for major radiation burns on the upper right quadrant of my body. But it happened.
My son is worried about me. I guess he has a right to be in such a state. I can see the worry in his eyes.
His best friend’s mother also had breast cancer. She has the mastectomy, chemo, and radiation, just like me. She was on the pills to keep the estrogen level down, just like me.
The only difference on the surface is that she reached her five years on the pill, stopped and now she has recurrence. From what my daughter in law says, she has cancer in the other breast, liver, lung and heart.
I would like to think she didn’t take care of herself. I would like to think she didn’t follow up on appointments. I would like to think her doctor didn’t do everything possible here. I would like to think they never measured the enzyme levels or performed CAT scans after the initial ones.
B is so worried. He is just sure that five years from now I’ll quit taking my pill and have the cancer take me over. That thought is surely in my head also.
So I try to put on the brave front. I tell him I’ll be 67 then. I will have lived a long life. I tell him that I believe K H had been taking Tamoxfen, and I am taking Femara. There are fewer cancers associated with Femara. I hope that is the case, and I won’t be facing recurrences of cancer.
I told him that cancer is an chronic condition that I will just have to keep fighting. He is scared by that. He doesn’t say anything to that statement, but I can see his face.
At first, I was sure that I had beaten this thing. Even though it was a Stage 2, I was sure that I had beaten it. After chemo, I would have placed bets on it. Then during radiation, my resolve began to weaken.
Just a couple of days ago I was reading a cancer magazine for women in the oncologist’s office. It had a story about women’s basketball coaches. One was free of cancer for seventeen years. SEVENTEEN YEARS! It recurred.
Why would I have any better luck. KH is apparently doing nothing about her recurrence right now with the exception of a homeopathic treatment - she is drinking peroxide in her water to "reduce her acid levels." She is doing no chemo, no radiation. Nothing. She doesn’t want anyone to know about her situation. With her initial onset, she lost her job, and she doesn’t want that to happen again.
If she has the resources, she needs to use them. She will be a first time grandmother in March. She owes it to that baby to try to live.
On the other hand, perhaps the cancer is so wide spread it cannot be treated. Perhaps the peroxide is the only treatment she has. I watched the show "Crazy, Sexy Cancer. She had no real treatment options. She had to resort to the macrobiotic diet. It seemed to work. I guess that’s where KH is now. She may be in the situation where the treatment to kill the cancer would kill the patient.
I cannot help but wonder where I will be in five years. I wonder what I will be doing to survive at that time.
My son is worried about me. I guess he has a right to be in such a state. I can see the worry in his eyes.
His best friend’s mother also had breast cancer. She has the mastectomy, chemo, and radiation, just like me. She was on the pills to keep the estrogen level down, just like me.
The only difference on the surface is that she reached her five years on the pill, stopped and now she has recurrence. From what my daughter in law says, she has cancer in the other breast, liver, lung and heart.
I would like to think she didn’t take care of herself. I would like to think she didn’t follow up on appointments. I would like to think her doctor didn’t do everything possible here. I would like to think they never measured the enzyme levels or performed CAT scans after the initial ones.
B is so worried. He is just sure that five years from now I’ll quit taking my pill and have the cancer take me over. That thought is surely in my head also.
So I try to put on the brave front. I tell him I’ll be 67 then. I will have lived a long life. I tell him that I believe K H had been taking Tamoxfen, and I am taking Femara. There are fewer cancers associated with Femara. I hope that is the case, and I won’t be facing recurrences of cancer.
I told him that cancer is an chronic condition that I will just have to keep fighting. He is scared by that. He doesn’t say anything to that statement, but I can see his face.
At first, I was sure that I had beaten this thing. Even though it was a Stage 2, I was sure that I had beaten it. After chemo, I would have placed bets on it. Then during radiation, my resolve began to weaken.
Just a couple of days ago I was reading a cancer magazine for women in the oncologist’s office. It had a story about women’s basketball coaches. One was free of cancer for seventeen years. SEVENTEEN YEARS! It recurred.
Why would I have any better luck. KH is apparently doing nothing about her recurrence right now with the exception of a homeopathic treatment - she is drinking peroxide in her water to "reduce her acid levels." She is doing no chemo, no radiation. Nothing. She doesn’t want anyone to know about her situation. With her initial onset, she lost her job, and she doesn’t want that to happen again.
If she has the resources, she needs to use them. She will be a first time grandmother in March. She owes it to that baby to try to live.
On the other hand, perhaps the cancer is so wide spread it cannot be treated. Perhaps the peroxide is the only treatment she has. I watched the show "Crazy, Sexy Cancer. She had no real treatment options. She had to resort to the macrobiotic diet. It seemed to work. I guess that’s where KH is now. She may be in the situation where the treatment to kill the cancer would kill the patient.
I cannot help but wonder where I will be in five years. I wonder what I will be doing to survive at that time.
Thursday, October 18, 2007
Health insurance - bah!
Although I shouldn't really feel that way - I hope!
I have survived my two days of blood work and oncology appointments and all is well. I was with the radiation oncologist yesterday. Everything is normal - including some of the pains I feel. They are apparently nerve regeneration. I am on a four month recall with them.
It was so nice to see all the folks that work there. I told the receptionist that, in a strange way, I miss coming out there. I think about the people I met while waiting for treatment. We developed a connection.
That presents an interesting problem. The clinic is no longer covered by my insurance plan. They have never said a word about it with the exception of the final visit at the end of the radiation when Dr. Behind (my comrades getting radiation named him that because he never looks at his patients - all we see is his behind), who is the main doc commented on what my insurance was. I have never gotten a bill from these people at all. So . . through this year they are looking at 4 month recalls, then 6 month, then a year, and so on. G tells me that because of "continuity of care" I will be grandfathered in with them. We'll see. I just play dumb!
I went to Dr. Poison, my ordinary oncologist. I am on four month recall with him also. He said that from my blood work I am tolerating the Remara well. He also said I could have my port removed. I had told him that I needed to have it flushed. He asked why I wanted to keep it. I said I certainly didn't. I just thought I would have to wait a year. I don't have to!!
This beings a new problem. My surgeon is not in my plan. Now he never charged me a dime over my usual co-pay of $25. I should have paid at least another 20% of his bill. Not a word. There is a part of me that almost hates to call him. I really think he makes most of his money on bariatric surgery. He does the by pass as well as the clamp. But I don't want another surgeon poking around in there. I really like this man. So I guess I'll give him a call!
It wasn't until I was talking with daughter yesterday that I found that my insurance is better than I thought. Her options for insurance at work do not allow for any cancer treatments - not a single option. I've been really blessed. I have only paid the co-pay for all the regular oncologist appointments and chemo sessions, and two co-pays for the surgeon. Nothing for the hospital, nothing for radiation.
I keep waiting for the other shoe to drop.
I have survived my two days of blood work and oncology appointments and all is well. I was with the radiation oncologist yesterday. Everything is normal - including some of the pains I feel. They are apparently nerve regeneration. I am on a four month recall with them.
It was so nice to see all the folks that work there. I told the receptionist that, in a strange way, I miss coming out there. I think about the people I met while waiting for treatment. We developed a connection.
That presents an interesting problem. The clinic is no longer covered by my insurance plan. They have never said a word about it with the exception of the final visit at the end of the radiation when Dr. Behind (my comrades getting radiation named him that because he never looks at his patients - all we see is his behind), who is the main doc commented on what my insurance was. I have never gotten a bill from these people at all. So . . through this year they are looking at 4 month recalls, then 6 month, then a year, and so on. G tells me that because of "continuity of care" I will be grandfathered in with them. We'll see. I just play dumb!
I went to Dr. Poison, my ordinary oncologist. I am on four month recall with him also. He said that from my blood work I am tolerating the Remara well. He also said I could have my port removed. I had told him that I needed to have it flushed. He asked why I wanted to keep it. I said I certainly didn't. I just thought I would have to wait a year. I don't have to!!
This beings a new problem. My surgeon is not in my plan. Now he never charged me a dime over my usual co-pay of $25. I should have paid at least another 20% of his bill. Not a word. There is a part of me that almost hates to call him. I really think he makes most of his money on bariatric surgery. He does the by pass as well as the clamp. But I don't want another surgeon poking around in there. I really like this man. So I guess I'll give him a call!
It wasn't until I was talking with daughter yesterday that I found that my insurance is better than I thought. Her options for insurance at work do not allow for any cancer treatments - not a single option. I've been really blessed. I have only paid the co-pay for all the regular oncologist appointments and chemo sessions, and two co-pays for the surgeon. Nothing for the hospital, nothing for radiation.
I keep waiting for the other shoe to drop.
Wednesday, October 17, 2007
I'm really here
Yes I AM still alive and kicking. Perhaps kicking too much! I have been really busy, and that's a good thing. There are so many projects that I have been not doing. It's nice to have spurts of energy that mean I can get things done.
I painted a part of the upstairs ceiling. When we re-roofed, I had the 25 foot sky light taken out. It was at the peak of the roof, and the east end of it never looked like it was fitted into the roof properly. Besides in this climate, it made the house (upstairs mainly) way too hot. There was just too much sunlight coming in even though it was supposed to be double insulated. Now the hall downstairs is REALLY dark, but I really think we are saving energy.
I surely got off track there. The place where the sky light was needed paint. It was just raw green board. It got done!! It's not perfect, but it will do until I have a professional come in because I want the entire ceiling done, and that will require a scaffold. I don't put my body ten feet in the air to paint - anything!
I am scheduled for check ups this week. I though I would have had one already today, but they had to change the appointment from 10am to 2 pm. I thought things would work out beautifully. Since I changed the regular oncologist appointment (see the last post for that fiasco), I thought I could have my fasting blood taken early, go over to the hospital for breakfast, then to the radiation oncologist. Nope! Didn't work that way. But that's the way things seem to be going.
I am really fighting the battle of the bulge. I really thought chemo would make me lose weight. Nope - I gained. Now the pill seems to be adding to things as well. I'm just not ready for Adkins Induction or West Beach Level One just yet. I'm still enjoying my carbs (perhaps too much). I rationalize with the fact that "I'm still healing from all that stuff." At this rate, there will be a lot of grease from my cremation. Sorry that was crude. That kind of stuff just slips out from time to time. I ought to delete it!
My moods are still wildly switching. It doesn't take much for me to lose all patience. My temper is doing just fine, thank you. I really have to watch it. I tend to lash out easily, but I try to keep it to inanimate objects when no one else is around. That is one thing I really don't like, and I am really trying to change it. Yesterday I really cursed the mini blind bracket that fell and didn't cooperate with me to go back up. Simone decided her crate in our bedroom was the best place in the house to be! Shame on me!
I guess things will get on more of an even keel someday. I surely hope so. Otherwise I am really going to be lonely. And hugely fat.
I painted a part of the upstairs ceiling. When we re-roofed, I had the 25 foot sky light taken out. It was at the peak of the roof, and the east end of it never looked like it was fitted into the roof properly. Besides in this climate, it made the house (upstairs mainly) way too hot. There was just too much sunlight coming in even though it was supposed to be double insulated. Now the hall downstairs is REALLY dark, but I really think we are saving energy.
I surely got off track there. The place where the sky light was needed paint. It was just raw green board. It got done!! It's not perfect, but it will do until I have a professional come in because I want the entire ceiling done, and that will require a scaffold. I don't put my body ten feet in the air to paint - anything!
I am scheduled for check ups this week. I though I would have had one already today, but they had to change the appointment from 10am to 2 pm. I thought things would work out beautifully. Since I changed the regular oncologist appointment (see the last post for that fiasco), I thought I could have my fasting blood taken early, go over to the hospital for breakfast, then to the radiation oncologist. Nope! Didn't work that way. But that's the way things seem to be going.
I am really fighting the battle of the bulge. I really thought chemo would make me lose weight. Nope - I gained. Now the pill seems to be adding to things as well. I'm just not ready for Adkins Induction or West Beach Level One just yet. I'm still enjoying my carbs (perhaps too much). I rationalize with the fact that "I'm still healing from all that stuff." At this rate, there will be a lot of grease from my cremation. Sorry that was crude. That kind of stuff just slips out from time to time. I ought to delete it!
My moods are still wildly switching. It doesn't take much for me to lose all patience. My temper is doing just fine, thank you. I really have to watch it. I tend to lash out easily, but I try to keep it to inanimate objects when no one else is around. That is one thing I really don't like, and I am really trying to change it. Yesterday I really cursed the mini blind bracket that fell and didn't cooperate with me to go back up. Simone decided her crate in our bedroom was the best place in the house to be! Shame on me!
I guess things will get on more of an even keel someday. I surely hope so. Otherwise I am really going to be lonely. And hugely fat.
Tuesday, October 09, 2007
The chronicle of my life
I have not had to use a day runner/calendar since I was working/teaching with two kids at home. My little experience with the little c (cancer) has changed all of that! It is a critical possession. I am lost without it. It holds all of my appointments.
When we last went to El Rancho SSB, I left it on the coffee table. It was in the same bag as my knitting. I was thinking that I wouldn't be doing any knitting, and I wanted to have the needles there so I could teach my sister-in-law how to knit. That thinking must have been the over riding thought because that bag was left. I didn't think about the day runner - that is until we were at least 75 miles away. That is certainly the point of no return.
I knew I didn't have any appointments that were immediately pressing. That in itself was a wonderful change from the previous months. I knew I had a follow up with the oncologist and the radiation oncologist, and I knew they were both together, one following the other.
One of the problems for me not having the calendar is that I couldn't check it daily and make notes in it. With my ever present "chemo brain" I have difficulty keeping up the the date. My concept of time is skewed - alot!
When we got there, in my mind, it was a week later than actual time. I was literally freaked out because I thought my oncologist appointment was today. Any other appointment would have been just fine, but I need to have my blood work done at least a day ahead. There was no time for that!
I called the office yesterday to change the appointment. I am still thinking a week ahead. Fortunately they weren't, but were probably wondering why I was so upset. What can I say? I didn't have my calendar for three weeks!
As it turns out, everything is better. The appointments are next week. I can go out, get the blood work done, and then see the radiation oncologist all on one day. Then the next day I can see the oncologist the next. It means one less trip.
Stupid "chemo brain."
When we last went to El Rancho SSB, I left it on the coffee table. It was in the same bag as my knitting. I was thinking that I wouldn't be doing any knitting, and I wanted to have the needles there so I could teach my sister-in-law how to knit. That thinking must have been the over riding thought because that bag was left. I didn't think about the day runner - that is until we were at least 75 miles away. That is certainly the point of no return.
I knew I didn't have any appointments that were immediately pressing. That in itself was a wonderful change from the previous months. I knew I had a follow up with the oncologist and the radiation oncologist, and I knew they were both together, one following the other.
One of the problems for me not having the calendar is that I couldn't check it daily and make notes in it. With my ever present "chemo brain" I have difficulty keeping up the the date. My concept of time is skewed - alot!
When we got there, in my mind, it was a week later than actual time. I was literally freaked out because I thought my oncologist appointment was today. Any other appointment would have been just fine, but I need to have my blood work done at least a day ahead. There was no time for that!
I called the office yesterday to change the appointment. I am still thinking a week ahead. Fortunately they weren't, but were probably wondering why I was so upset. What can I say? I didn't have my calendar for three weeks!
As it turns out, everything is better. The appointments are next week. I can go out, get the blood work done, and then see the radiation oncologist all on one day. Then the next day I can see the oncologist the next. It means one less trip.
Stupid "chemo brain."
Tuesday, October 02, 2007
The flip side
I am becoming more and more convinced that along with cancer comes a kind of wierd bi-polar disorder. One moment I may be laughing at something, and the next I am moved to tears. That certainly keeps one on an even keel (ha).
I was so pleased that I had enough energy to actually do something, but then the ugly flip side reared its ugly head. I am back where I was before radiation. I CANNOT go to sleep. This has been my life for three nights now. Where does that leave me today? Exhausted!!
I have tried the Tylenol PM which worked well for a while. I have tried the Ambien, which has mixed reviews with me. Neither is working well right now. I still lay in bed, tossing and turning. I'm about to hit the stash of hydrocodonone that was left over from the lumpectomy and ensuing mastectomy. I'm really just kidding about that though because I sometimes have a terrible reaction to that stuff.
Not being able to go to sleep is a malady I have had most of my adult life. I just can't turn off my brain. Now that my energy level is higher during the day, I lay there thinking of just what I could accomplish the following day. I try to just have my brain go blank, but it doesn't work. Menopause has only added to this problem. It is such fun.
At least I'm not having night sweats that I thought I very well might have as a result of the chemo pill that I am taking. It has put me through some usually occurring between 8-10 pm, but I can't put my not sleeping off to that pill.
It's so annoying to have to almost completely become sleep deprived before I can fall asleep. This must be hereditary because my son has the same problem. I used to tell him it's because he didn't follow a set pattern that most doctors recommend to fall asleep easily. He was like a typical teen. He would stay up until all hours, then on the weekends he would try to sleep all day. Now, in is thirties, he still has the problem to some degree. At least he doesn't have to face menopause.
I can just hope that my schedule will normalize somewhat. Either that or G and I will end up like his parents - we HAVE to have separate bedrooms so I can stay up all night and sleep all day while he gets up early to go to work (even though the parents don't have that kind of schedule).
On another topic, the burns I thought would never heal are healed, and I'm about through with the peeling from them. This means I can begin looking toward reconstruction. That's really good news. I thought I would not be healed until the first of the year. It is bad news because I'm supposed to begin keeping Doodle Bug the middle of this month. Well, things will work out!
I was so pleased that I had enough energy to actually do something, but then the ugly flip side reared its ugly head. I am back where I was before radiation. I CANNOT go to sleep. This has been my life for three nights now. Where does that leave me today? Exhausted!!
I have tried the Tylenol PM which worked well for a while. I have tried the Ambien, which has mixed reviews with me. Neither is working well right now. I still lay in bed, tossing and turning. I'm about to hit the stash of hydrocodonone that was left over from the lumpectomy and ensuing mastectomy. I'm really just kidding about that though because I sometimes have a terrible reaction to that stuff.
Not being able to go to sleep is a malady I have had most of my adult life. I just can't turn off my brain. Now that my energy level is higher during the day, I lay there thinking of just what I could accomplish the following day. I try to just have my brain go blank, but it doesn't work. Menopause has only added to this problem. It is such fun.
At least I'm not having night sweats that I thought I very well might have as a result of the chemo pill that I am taking. It has put me through some usually occurring between 8-10 pm, but I can't put my not sleeping off to that pill.
It's so annoying to have to almost completely become sleep deprived before I can fall asleep. This must be hereditary because my son has the same problem. I used to tell him it's because he didn't follow a set pattern that most doctors recommend to fall asleep easily. He was like a typical teen. He would stay up until all hours, then on the weekends he would try to sleep all day. Now, in is thirties, he still has the problem to some degree. At least he doesn't have to face menopause.
I can just hope that my schedule will normalize somewhat. Either that or G and I will end up like his parents - we HAVE to have separate bedrooms so I can stay up all night and sleep all day while he gets up early to go to work (even though the parents don't have that kind of schedule).
On another topic, the burns I thought would never heal are healed, and I'm about through with the peeling from them. This means I can begin looking toward reconstruction. That's really good news. I thought I would not be healed until the first of the year. It is bad news because I'm supposed to begin keeping Doodle Bug the middle of this month. Well, things will work out!
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